I am the caregiver for my husband who has dementia. I’ve been caring for him for 3 years. He doesn’t talk to me unless I say something to him; he only gives a quick answer. There is no conversation. I feel like I live with a dead person. I don’t like him and I’m not in love with him anymore. I think I have emotionally divorced him. Is this normal?


Deb, please rest assured that your feelings and emotions are actually not only common, but normal. As dementia progresses, the person who is faced with caring for a loved one changing daily into someone they no longer recognize must live with, care for, love, try to communicate with and be on call 24/7 for a person who can now be a complete stranger to them.

It can be emotionally challenging and likened to someone with post traumatic stress syndrome. It is difficult to say the least to start each day not knowing what the day will bring. Who will your loved one be today? How will they respond to daily interaction and how will they have changed and progressed? At times, it can be lonely, overwhelming and exhausting and then you don’t have your loved one to confide in and lean on to help with such an overbearing task. How ironic, the one person who would have been your “go to” for such things is now the one you need support and understanding dealing with. Guilt and loneliness are also huge side effects from being the care provider for a spouse and to not like the person they have become is understandable. They might have different personalities, likes, thought processes and they just aren’t the person you have grown with and gotten to know and have expectations from through the years.

Yes it is normal, but the one thing to keep in mind is you will survive this very difficult time and must live with the choices and decisions you make now. That being said, you must also do what you need to do to survive each day as best you can. Do you have a support group? The Alzheimer’s Association in your area should be able to provide you with a group or a local church may offer one as well. If possible, talk to your clergy, a counselor or someone you trust and can be open and honest with. Exercise is also a great way to help yourself and if you are not already, try to start a routine that includes some sort of physical activity (other than laundry, dishes, yard work, etc.) Take care and stay strong.

440 thoughts on “Is it normal to fall out of love with your spouse?

  • Janis Rahman

    I have been working with someone who has Alzheimer’s for almost nine years. I have recently been reading “On P,unto” a book by Greg O’Brien who suffers with early onset Alzheimer’s.
    This has given me so much insight into the emotional upheaval of this disease.
    I encourage anybody dealing with this horrible disease to read it.

    • Lynn

      Can’t find it in Kindle books

    • Pat

      My husband of almost 40 years had early on set dementia. It’s not that you don’t love him anymore it’s that your marital status changes from partner with love and care for each other to care giver with no intimacy or affection which is very difficult. I was fortunate as he died after a little more than 6 years it was very difficult as I worked a fill time job out of necessity and tried to care for him. I never knew what I would find when I returned from work. Federal and state programs only help those willing to quit work to get help. Eventually I had to seek help and put him in a nursing home as I couldn’t leave him alone. He only lasted a few months. Looking back after 12 years without him I still miss him terribly. I am in a new relationship which is not anywhere near what I shared previously. I am happy I am not alone, I believe you only get that one shot at head over heels in love once in your life.

      • Jo

        I have known my husband had early dementia for two or three years before he was formally diagnosed with LBD last January. I was pleased to have a diagnosis and know it wasn’t me and I was also excited that medications would help us have at least a year of near normality but his condition has worsened quite quickly and his passive negative attitude and psychosis is really getting me down. You say that to are happy your husband only lived 6 years I pray that we don’t have to suffer that long. I feel young and energetic but his condition and what it is doing to our lives frightens me as I WANT to live and he has given up. He wants me living on his level because my energy annoys him. I love my husband he has cared for me for the past 50 years and I accept it is now my time to look after him and I am trying really hard but sometimes I wish I could run away and be free. Thank you for giving me the space to have a rant!

        • Joy

          I feel the same .I am sure my husbands Alzheimer’s will kill me before him,

          • Tracey

            I just said this to my GP last week that I am going to die before my husband with what the exhaustion stress and anxiety are doing to my body

          • Deborah Arduini

            Same with me

          • Donna Geiss

            I’ve become convinced my husband is going to out live me. And he’s the one with dementia. I don’t know how much more I can take. The anger and resentment I feel each and every day is taking a toll. I think I could handle it better if he had an ounce of appreciation, or even a bit of remorse about what is going on. But he’s always been a selfish person, so why should I expect this situation to be any different. I cook, clean, do his laundry, do his pills, pay the bills, drive the car, haul him every where I go because if I don’t take him, I’m afraid he will wander off. Been trying to find an adult day care, but nothing available and our local Senior Services is useless. Every day I wonder what is going to break the camel’s back (mine).

          • Ray

            My wife “disappeared” 4 years ago due to ALZ . I am her caregiver, not her husband since she has lost all abilities. The loss of intimacy is most difficult. I really struggle with this since no one would understand. It is much worse than being single.

          • Lynn46

            I feel the same way.
            Also very lonely most of the time.

          • Leslie Anderson


          • Hannah

            I wonder if the caregivers wear out first. I hope not

          • Wilson Nancy

            I feel the same

          • carol a ryan

            My goodness reading all the comments here are exactly the same things now going through my head as my husband also has Alzheimer’s. I too sometime wish I could run away from this and not have to deal with it, I sometimes think the stress is going to get me first with a heart attack or stroke and then I wonder where my husband will be without me to care for him. We have been married for 57 years now and I have always believed in my marriage vows “in sickness and health” so I continue to pray every day for God to give me patience to deal with this horrible disease that we don’t want and did not ask for.

          • Cheryl

            My husband and I married only 2-1/2 years ago, but I’ve been with him for 7 years. My deceased husband I was married to for 32 years and he was sick for 8 years and bedbound for the last 3. I was honored to be able to be the one to care for him and see him to his death. He loved me and I him. Had it been me, he would have done the same. He’s gone now 12 years and I still have tears every day I miss him so much.
            Back to this person I stupidly took up with. He’d would have never taken care of me at any point. He’s selfish and greedy, can’t get enough money out of me to satisfy his greed, though his income is 7 times mine. I’ve paid most of my income every month to him & he still calls me a freeloader. Only now he hallucinates there are 3 women here & he wants me to pay rent for these non-existent people he says are my friends.
            He’s mean and nasty and insulting. Ask him who his wife is & he’ll say his ex-wife he’s been divorced from for at least 20 years.
            I can’t pay the bills & ask him for his half without him accusing me of stealing from him. There is NO financial benefit for living here and taking care of him. I pay more than I would alone, plus do every bit of cleaning. I took my vows seriously. He never did & has cheated on me several times. Try a person with dementia who is also a porn addict. I can’t tell him what to do. Even sweet, patient reminders “we” need to take our medicine now are met with argument.
            I don’t owe him this. If I go to the grocery store his sister wants to know if I’ve left him alone. I’m supposed to dedicate the rest of my life to him & not even go for a walk or to the grocery store to get away from him. I’m accused of stealing his money & I’ve never touched it, ever!! He’s emotionally and financially abusive AND has dementia. I’m strapped for money all the time, have lost the rest of my life, can’t go anywhere, and he hates me. I think the vows I took didn’t mean suffer with this abuse. I feel hated and so alone.

          • Arlea

            I know. I am also in those same shoes Every day I have fear

          • carol a ryan

            Just came across this site and reading some of your remarks is exactly how I have been feeling, my husband also has Alzheimer’s at age 81, just diagnosed in 2018 but I am sure he had it as far back as 2012. I also think that all of the stress dealing with him is going to kill me before him, as I am dealing with my own health problems and coping with all this stuff is making my pain levels unbearable some days.

          • John

            Wow, This what I feel all the time.

          • Cindy

            I felt the same way but found a boyfriend online during Covid while he is still in a nursing home. I am happy now and want to tell my kids but afraid of what they will think!

          • Lisa

            I am so stressed and feel the way you all do. He is becoming abusive at night and accuses me of having an affair with my best friends wife. He makes it so I can’t have any friends or a life. He won’t let anyone come in our home to help me. A couple times he’s become physically abusive with me. Next day he apologizes and then does it again. He was my soul mate. We’ve been married for 41 years and 17 years apart. I have no help cause he mistreates everyone. My kids live out of state, so I have noone. Please help or advise me what to do, I really can’t take anymore. He pees everywhere even wearing depends because he won’t change them till they are soping wet and our gone smells like urine. He also has advanced prostate cancer and diabetes. I feel guilty saying all this, but I really feel like he’s sucking the life out of me. 😭😪

          • Peggy

            I agree with you. My husband’s in the very early stages and it’s already driving me insane I feel completely helpless as the doctors told me that there’s nothing you can do at this stage because he is still mildly functional. I feel so alone.

          • Carol Damato

            Joy, I feel the same way. I am the one suffering, physically and mentally. He is oblivious to all the problems. I don’t know how to survive as a caregiver.

        • Jean Manifold

          I feel their stories and I am living it as well. Husband is 75 and I am 65, together for 40 years, I have also felt he wants me to share his misery, I feel so sad for him, he is not the husband I married and I am having the impossible task of loving him when there is no intimacy, no affection of any kind. I have been doing this for 20 years and most days I hate him. I loved him to pieces the first 20 years and I fantasize about our lives before which is the only reason I have stayed other than I feel sorry for him, I don’t want him to be sad. He screams at me and his care aide workers all the time, even his daughter. I pray one day this will be over.

          • Margaret Brown

            I am new to this and married to a lovely man I no longer recognise. So sad.


            So Sorry. I feel the same way. My life is being consumed by his negative view of everything. 8 years I am in therapy learning how to cope with his nasty behavior. After he creates daily dramas; crisises, chaos he is clueless as to what he has done. There is no remorse. Our marriage is emotionally dead; sexually dead, no fun. It is about him all day; everyday.

          • Kay Kaye

            Jean, you’re telling my story. I met my husband a month before my 18th birthday and six weeks before his 30th. He was a mighty man. Strong. Hard working. Fun. At 77, he’s nothing like the man with whom I spent my life. In the past year and a half he’s become disengaged, child like and wholly dependent on me. Even though I know it’s not his fault, I can’t help the rage I feel towards his refusing to fight for his mind. I, too, live in the past where our lives were wonderfully filled with love, affection, engaging conversations and like minded goals and ideals. I miss him terribly and feel lonely, angry and frustrated all the time. This is not how I imagined our relationship would end. So sad.

          • Vininna

            It’s funny how older men look women 30 years younger in the hopes that when he gets older she will look after him, not knowing that he would still end up in a home. they are so delusional.

          • MaryAnnLamb

            To all that are gong through being the caregiver, you are normal in feeling the way you do. Know that you are not alone God loves you and their is a community out here trying to figure this thing out! Know that these symptoms of Dementia, that it is not your loved one but the illness the brain running out of strength. This is a heartbreaking time but you need to 1 get power of attorney it’s for everyone protection! Get your house in order so what if they yell that’s what the illness does. If they are going to fight then present it this way incase anything happens to you they have power of attorney and vice versa , if anything happens to them. Iam in the trenches with you
            Also if your the caregiver you take over all money get with your attorney and financial planners. Get your house I order! Set aside 25 dollars an hour for a caregiver to come in and give you a break. I am working on these things too not easy calls me names etc.. screams Carrie’s on but remember you can do all things through the Lord seek out help and you will get it praying for each and everyone of you, you inspire me❤️Hang in there!

          • Deborah Sampson

            My husband has not been officially diagnosed but has Mild Cognitive Impairment. Can’t even see a doctor right now let alone get a diagnosis due to COVID. He has never been an easy man to live with but it’s got so much worse in the last two years. Like many of you I feel I hate him but sometimes my emotional memory kicks in with feelings of affection which last all of 10 minutes until the next insult. He will quite possibly outlive me as it’s early days in his condition. My prayers go out to you all.

          • Dawn

            As I’m reading this I have taking the responsibility of my ex-husband brought him into my home because he has Alzheimer’s my children can’t deal with it so I took the responsibility at first I thought I could deal with it it’s really taking a toll on me now I wonder why I even tried he’s very nasty mean arrogant he’s always been arrogant cheated on me left and right now I wonder why I did this it’s making me sick and there’s no help out there I just want to put him someplace where he’ll be safe and not necessarily in a nursing home in a nice facility and Memory Care Facility but he has no money and there’s no help out there it makes me sick with so much of this disease there’s no help it’s disgusting I just don’t know what I’m going to do I wake up in the morning I tried to do my meditation to get through the day and then he says nasty things to me and I feel like I have kryptonite on me I wish there was help

        • Donna Cook

          I identify with your sadness, your loss of the things that would give you pleasure, and your overwhelming desire to run away. Where is hope? Not in my house.

          • Margaret

            Feel it every day ?? like living with a person now dead but still alive. Sits in his recliner, under a blanket staring into space, all day every day. He has sucked every bit of life from me.

          • Lynda Walker

            My husbands dementia is affecting my health i have diabetis ,angina and athritis and find it really hard to cope he us si demanding and treats me like a servant,he sits around in his underpants allday wont wash just watches tv and demands food if i had somewhere to go i would leave i am so lonely

        • Jinny

          I understand completely all you say. My husband is 85 & I am 72. Also been getting worse over (I believe) atleast 10 years but last 2 years & last 6 months really cannot hardly cope /dont know how to get through the carehome &financial disgraceful even disgusting business- the carehomes make the money, the Council tries to pay/contribute as little as possible and I wondercwhen how & where to go … xjinny in Cardiff where are you based?

          • Ann

            Feel I need to get antidepressants keep bursting into tears

          • Pamela Hodson

            I have cried everyday for 2 years while my husband was at home. This lovely man is changing every week beyond recognition. Social services decided he had to go in care he kept falling as well. Been in care home 5 months and still cry every day but I will not take antidepressants. I try to go and see him twice a week but he doesn’t know who I am. I kiss his ear and he smiles that is the best bit. His eyes are closed because I don’t think he has much sight and he cannot hear! It is so hard. I would have loved to have kept him at home if I could have afforded to pay for 24 hour care.

        • Deirdre Flynn

          This is exactly my situation. My husband has no wish whatsoever to do anything. I do everything to keep our lives running but am totally worn out. My hands shake and my nerves are in shreds.
          He sits and stares vacantly and walks with tiny shuffling steps.
          I feel like I live in a nightmare . I have to lock all the doors at night as I have had to stop him going out at 3am when he is sure someone is outside.
          The work around our house that needs doing is getting out of hand and I can’t cope. Some days I can’t stand the sight of him.

          • jennifer

            i am a 63 year old woman who lives separately from a man i have known for 24 years. he is 73. we met at work in october 1997 and engaged in december. i was divorced in 1982 and had 2 daughters, 16 and 18. Rich had never been married, had children and was an only child. It was never romantic but we were there for each other. we did not marry and i maintained my own house and bills. we continued to see and talk daily but all physical relations stopped by his choice. i never dated or saw anyone else and im told im a good looking lady. the last 2 years he has shown signs of dimentia. the last 6 months, drastic personality changes, comments, some days ok but others just blank. to top it off, he has paid thousands of dollars by paypal to a. cabias in california who then sends the money to colombia pono sites. he continues to do this. the banks tell me as long as he does it himself they cannot do anything, its his choice. i am physically sick because of whats happening to him. he denies denies denies. i care for him but still live separately. the back and forth checking on him is wearing me down. he has nobody and i mean nobody except the paypal guy taking his money. what can i do to help him but save myself? he is not incompetent yet but its coming. i dont know what to do and do not have anyone to talk to and hes all ive known or had in my life for 24 years. now i feel angry and resentful and then sad and hurt. what could/should i do? thank you

          • Eileen

            I feel the same way. My husband has dementia, incontinence is a nightmare. I’ve been pooped on and the pee at night floods the bed. I get up twice a night to change him everything is drenched. I’m 70 years old and have,been with him for 48years. He was diagnosed with early stage dementia in 2014. I know this will be my death and I will go before him. This morning I wake up and I’m changing him and I say I cannot do this anymore and he looks at me and says then just leave! I sometimes wish I could. I am so so depressed. I feel I cant go on. I know this will pass but it hurts that he can just say just leave. Wow.

        • Joy

          You have been a ‘legend’ I believe no one understands unless they have walked in your shoes – happy days you deserve every minute⚘⚘

          • Paula dimattia

            My husband had a brain injury requiring brain surgery which brought dementia and Alzheimer’s on.been in and out of rehab and hospitals. Financially I’m busted. He has attacked and hurt me on 3 occasions.I’ve made police reports. My dr has called nys aps.nothing gets done and it still goes on .best thing is I’ll sleep in my car.he brings me down and I do so much.he is incompetent.

        • Shirley Benedict

          I truly feel the same way..my husband also has had dementia for about 4 yrs but I never caught on… now he has been diagnosed
          thank god for paperwork. My neighbors know what he has but still gives him stuff that he could hurt himself with like a bicycle..he is mean calls me all kinds of names just terrible..46 yrs and I’m also young enough to still want to do things..he keeps me down..I’m trying to get a nurse in here while i work and then probably a nursing home…its been tough….I’m here with all of you…

        • Jessie

          I am having the same issues, my husband has FTD. He became violent a year ago, psychosis. He was put in meds for Psychosis at that time and it helped until recently. Now I live every day in fear of him. Like you I so desperately want to run away. I dont know what to do to help him and I suffer from PTSD myself. I feel like I am losing myself as well every single day.

          • Linda

            I too have a husband suffering with FTD. Diagnosed in October 2019 although looking back has probably had this degeneration maybe 4 years earlier but with intermittent “odd” situations was never really picked up until it was thought he was depressed but with further investigation and MRI FTD was diagnosed. I feel my husband of 53 years has long gone and a different man now in possession of my true husband’s body. Each day is a terrible struggle never knowing what mood will appear and when the pendulum will swing to another. I am lonely, dont have a life as just seem to be cook, laundress, administrator, housekeeper, sitter and general dog’s body. Feel I cant go on much longer and as previously mentioned by others, am sure he will outlive me with all the care and attention he gets which I give and everything being sucked out of me I have simply nothing left. At the moment I am investigating care facilities to just give me a few weeks respite but with FTD they seem reluctant to accept him. Dont know if anyone else is having or had this problem. If so, any advice given would be most gratefully received. I am in the Hampshire area should an appropriately located care home be recommended. Sorry to rant on but I feel the need to off load. Many thanks for listening – so good to read others’ situations. Makes me feel I am not alone with all my struggles.

          • Teresa

            Hi Jessie
            My husband has FTD .He drives me mad every day with his constant demands and ranting and raving.
            He was diagnosed 9years ago. My life is in shreds. I have several illnesses but he is unaware of anything other than himself. I feel I am losing the will to live .
            It’s very hard trying to cope every day.
            Stay strong my heart goes out to you.

        • Linda Deans

          Thank you for your story it is exactly my situation too

        • [email protected]

          I feel exactly the same no conversation just silence, having to repeat myself constantly, it is exhausting and I too wish I could just run away!

        • Pamela Hall

          I am exactly in the same situation. I am full of life and healthy. My husband is asleep most of the time. I try to shower and dress him early but he will not try. I love him so much but I feel my life is taking a turn for the worst to. I have also found I am drinking more alcohol in the evening. I try to motivate him but to be all singing and dancing all the time is hard. I will love and care for him as long as possible

        • Cheryl Kalter

          No guilt. Just reality

          Life is different now

          Relationship is defined with new people

          Take time to be free
          A day, two or even a night. Don’t wait

        • Jen

          My mum is in this exact situation with my dad. It’s heartbreaking to see, I just hope for both their sakes he dies soon which is awful but he’s a total stranger now, mum feels young and alive and wants to live her life. She looked forward to retirement all her working life but now she’s retired Dads got Alzheimer’s and mum feels she’s a prisoner in her own home as she’s tied to the house – Dad can’t be alone. Mum’s so so depressed, it’s awful to see I worry about her so much. I wish there was something I could do but she’s just got to carry on and hope this horrible illness takes Dad sooner rather than later so they’re both put out of their misery.
          The memory service and the admiral nurses are lovely but they’re no real help, mums on her own caring for a stranger he doesn’t sleep anymore either so she doesn’t even get a break at night. Horrendously sad for both my parents.

          • Sheryl Hogan

            I relate to your Mom and you, my daughter is very concerned about myself and her father , I am worn out by taking care of him, she does not want him to go into a care facility. Difficult times

        • Carole

          You are not alone .
          I am now married to a resentful stranger .Intimacy is a thing of the past .I feel as if I am drowning .I want to live ,he goes to bed at 8.30 pm now.No conversation and he doesn’t care about anything now .I am so lonely and miserable.

        • Christian

          Your rant helps me feel like I’m not some horrid ogre. Thank you.

      • Benita

        Thanks for the insight. Waiting for your love one to die is probably worse than them dying. My husband has had Alzheimer’s dementia for about eight years. I don’t have to work, and I don’t want him to go to a nursing home. (Most days anyway).

        • Julia

          I feel you.i feel the same way. But it is so hard

        • Leticia

          My husband was diagnosed 2 yrs ago I’ve watched and read so much about this disease that effects us both I thought I had prepared my self but I was wrong there is no way to prepare yourself my love for him is beyond words but at the same time I really resent him I miss the man I married sooo much and a part of me is waiting for him to come back I get angry at times and yell at him then the guilt is over whelming he cant help not be able to be the man he was his dementia has progressed so fast I pretty much do every thing for him and everything it takes to run our home NO time for myself I’ve struggled all my life and that has made me a strong a woman put I question am I go to be able to do this even a strong women needs a good cry a shoulder to cry on and a break now and the yeah I have an emotional break down now and then go in my room have a good cry take a deep breath and carry on

          • Sharon Swann

            Firstly, i am trying to navigate this site as i do not know how to put my own separate post up, maybe someone can lead me in the right direction.
            I know how you all feel, i have been my husbands carer for 12 years with no support, he has multiple lung illnesses and is on oxygen 24/7.
            Over the last few years his memory has declined rapidly. He has no formal diagnosis as yet but doctors think it maybe dementia. Out of all his medical issues the memory loss is the worst to deal with, as many have said here they have fallen out of love with their partner.
            I feel the same way, He is not the person i married in fact i don’t even think i like him anymore. He became distant even before the memory loss, i am 54 he is 60 our children have all left home so it is just the two of us. I use to be fine looking after him but its just become to much. He wants nothing to do with me and is not grateful for all i do for him. I ask myself everyday why do i stay. I also suffer from panic attacks and depression made worse by this situation. He is not the easiest person to look after. His always been a bit of a grumpy man but these memory issues has made it worse. Like many others here i too think i will pass away before him due to the stress of it all. I too am now at the point where i wonder when is this going to end how long can he go on like this for. It is a terrible way to think, well i feel guilty for thinking this way but its just so cruel for all concerned. Then i think, 12 years of caring for him then what happens when he does pass away, Then what? I’ll be lost not knowing what to do. I cry a lot for the husband i lost, the lack of intimacy and having no life. I just don’t know what to do. I found this site by trying to look up is in normal to not love a spouse you are a caregiver for. It is some relief that others do feel the same, but sad that so many of us are going through this. We share the same house but i feel like i am here alone. My son said it best when he said dad’s not dad anymore his like a ghost that’s just stuck here. Thanks for listening and maybe someone can let me know how i make my own new pots here.

          • Diane

            Oh my goodness, reading what you just wrote was my life. I was the sole caregiver of my elderly partner who had dementia. Sadly, he passed away just a week ago. I was holding his hand when he took his last breath. He was blind, deaf, bedridden. He couldn’t feed himself. He had a catheter and wore a brief. He could not stand or walk. I did everything for him for nearly the last two years. I loved him more than I can articulate. There were some times, though, when I didn’t think I could do it anymore. I would get so angry at the whole situation and would lash out at him. He couldn’t help his situation. Logically I knew that and it was immeasurably sad for both of us. I can’t tell you how many times I apologized for losing my temper. I find myself apologizing to him still even though he is gone. The guilt I feel is overwhelming. But the love I have for him is endless. He was my heart.

          • Samuel Russell

            I know that feeling,it like a long goodbye it has totally worn me out the stress and anxiety is overwhelming at times plus being very lonely

        • Cheryl Kalter

          You do “have to work”. It will give u life

      • Holding On

        Imagine for me, I’ve been a loyal caregiver. Then 2 years ago I find that he was carrying on quite well with a close [his] family friend, telling her he loved and wanted her. That’s the g rated version. I was crushed and ready to leave him, but i felt a sense of obligation to get him settled first. Of course, by then he’d talked his way back into my good graces. Now I love him but lost so much respect and who knows what else, that I feel resentful every time I care for him, and it comes through! You can see that the nurses are figuring out that something isn’t genuine about me, though I’m not divulging so that, as I don’t want anything that would jeopardize their care of him.
        See how I’m trying to look out for him, while also secretly holding onto him how much residual resentment is left?
        In the past he NEVER would have done this. I actually understand whsy he was going through but that’s logical thinking. I wonder how much of this is his dementia. Maybe that’s why I still put up with it.

        • Angel

          This sounds a lot like my relationship. My fiance is 60 and has early dementia. I am only 40 yrs old. He will do things to purposely hurt me like go to his exes house call girls on the phone, degrade me. I wonder how much is his dementia and how much is him being an a**hole. He is still at home and very functioning but he wont remember simple stuff. His driving has started to get bad so we limit that. He tries to work on his rentals but what use to take him 1 hr now takes 5. He won’t remember stuff we talked about 10 minutes before. A part of me wants to run. We aren’t married yet and don’t have kids together but he also has no family to take care of him. He would definitely be put in a home when he got bad. We have been friends for 20 yrs and I feel obligated to a point but I don’t know how much of it I can take.

          • Anitta

            Hi everybody; my Partner for 2 years just Start he was diagnostic with PCA , i love him so much , he Is just starting to be mean with me, he kick me from The apartment , he called me obese he trait to put me a Paper un my mouth , my clothes Start to dissapper , shows too, he throut it away, he Is another person, and I have 2 kids that only love him , And Keeps him active, he Is alone no body call him, i drive him , i cook for him , I country His pills , i turn in a sad person , i only cry all The time because i miss him, but i am a Little realive because we has isues abnormal problems, that he always said that was my fault, and after The diagnostic i feels Very good that wasn’t me The crazy! He wants to married me so I can be Protect , i really loves him , but reading all these coments only making me think about it

            What can I do?

          • Maire

            Get out as soon as you can.

          • Maureen

            If you are not legally married to this man and he has people in his life who can take care of him, SISTER HEAD FOR THE HILLS!! You cannot change the events that are sure to come. Pray for him! Notify his attorney or physician that you are no longer caring for him and cut your losses.

          • Maureen

            If you are not legally married to this man and he has people in his life who can take care of him, SISTER HEAD FOR THE HILLS!!

          • Laura Otstot

            Run! As fast and as far as you can, don’t marry him & obligate yourself to 24/7 care. I just found this site at 4:30 am after being woke up by my husband talking about VietNam to invisible people. This life is not a life. Washing, dressing, making meals, cleaning up dirty diapers after a husband who I havent liked in years is not the way I want to live the rest of my life. I do feel sometimes that I will die before him from stress. And I resent feeling that way

          • Maggie Kelley

            You’re a young woman, get out of there right now! You have an obligation to yourself first.

          • Donna

            Like the others have said, if you aren’t married to him, run now. Before it is too late.

          • Barbara M. Gaskin

            Run while you can.

          • Carly

            Run…I wish I could.

        • Colleen

          Being a caregiver to my husband is destroying my health, life and anger. Now I’m supposed to do every man job plus mine, repeat myself to a dumb man wipe his ass when he treated me and my family with disrespect so many years. I was getting a divorce finally when he was diagnosed. He has a son and daughter who live in same town that never come around. Seeing a counselor has not helped. To survive I must go away. Have any of you had a similar story?

          • Rosanne Brown

            Girlfriend my husband was diagnosed with o Parkinson’s when I was about to divorce him, a horrible time in life, I still work full time, now he thinks we’re good and wants sex, I could throw up about that! Sorry we’re not good I just don’t want to leave you completely alone, I hate this situation!

          • Lorraine

            Yes, I want to find a way to escape. My marriage of 45 years has been failing for years and especially now. I can’t stand my husband. He doesn’t let me breathe.

        • JR

          if married, divorce him & leave. If not married, just leave.

      • Lorilee Hawkins

        Amen to that. Couldn’t have said it better myself.

      • Wanda

        I feel the same! It’s a very strange place to find yourself in. We’re married 43 years today, and my husband has taken care of me very well for 40 years so I would never leave him. Not saying at some point he may need care I can’t give! Which would sadden need!

      • Lori Hackett

        My husband hasn’t lost his memory just some because of a stroke a year ago and he yells at me all the time. Threatens to leave me. I am also medically retired three years ago and on much smaller amount than him since he is also veteran. I have no one I can talk to.

    • Laura

      I miss my Tony. He has LBD and I have felt so alone in so many ways. Lost as well.
      My Tony was always the one who would pick me up and now I stand alone even with him standing beside me.

      • Sheryl L Hogan

        I share your feeling of aloneness with them beside you, it is more sad then them being gone and left with the memories.

      • Dee Ricketts

        I understand, my husband was my best friend, we did everything together. Now I never know what to do. Sometimes we go to an area we use to hike and he loves it, other times he thinks we are on the wrong road and is anxious. I try to plan things for us to do together, but I end up in an argument allot of the time, and it defeats the whole purpose.

        • sharyn Thomas

          My husband has Parkinson’s with dementia. I am very alone and lonely as my children live a long way away.
          They have no idea how it is!
          When we speak on zoom they think I’m taking over the conversation. They say “let dad speak” He does the right thing for a couple of minutes, they are happy he has let them know things are “fine”. I’m like a duck, calm on the surface and paddling underneath like mad to keep things going.

          • Kathy Shipley

            I feel your pain Sharyn… I too am caring for my husband who has Parkinson’s dementia. He has one daughter (age 37) who in the past 3 years has decided that she hates me and I think she blames me for her father’s disease. She lives in the same town, but has been no help whatsoever. She is trying to take over as his healthcare proxy although I am the sole caregiver. I am living a nightmare.

        • Sue

          My husband was always my best friend. I adored him. He was one of the smartest men I’ve ever known. We always talked and laughed together. He was diagnosed with Alzheimer’s 2 years ago but, based on the test results, he has had it for at least 9 years. Now, like so many of you, the majority of the time I don’t even like him. He’s difficult, selfish, snotty and dumb, nothing like the man I adored. Like so many of you, I do everything plus work full time. He is 78 and healthy…I’m 75 and depressed, overweight, angry and frustrated. As sad as it sounds, I wish it was over now.

      • Trudy

        My husband was diagnosed with LBD 4 years ago. At the time, the Neurologist told us he had 3 good years left. What’s that supposed to mean? There have been so many changes since then. My David has gone from a strong, dynamic, force to be reckoned with individual to a frightened little old guy that needs help dressing. I still have a hard time wrapping my head around it. I have run the gambit of anger and guilt so many times. Then, I get angry with myself for getting short with him and have to dig deep, close my eyes, take a deep breath and strive to put things in perspective. I still love him, but in a different way. He wants to be intimate, and I try, but when your changing wet pants, cleaning bottoms, and wiping drool, it’s hard to see him the same way. We have 7 children so it’s not like we never had that in our lives, it’s just different.

        Thank you for the question. I know I’m not alone, but like so many, when you’re in the trenches, sometimes it feels like it.

    • Nancy Beardslee

      I will check out that book.
      My husband had sepsis and then brain damage for the last 4 years. I am 72 and caring for him was physically and emotionally draining.
      After 2 years I went to the bank to see what I do. I took money out of savings and additional loan. I visited him several hours every day. He did come home to die for his last 4 months. I have never felt bad for having him in a long term care facility.

    • Margo

      Reading these comments makes me feel I’ m not alone.
      I experience the same emotions and challenges. My husband has been lost due to rarly onset Alzheimers. I work in an executive role and never know awaits me at home.

      • Lizzie

        I connect with all you are saying and feeling My husband was diagnosed 2 years ago and his mood changes are very wearing . I was a single mum when we met and I feel more lonely now than when I was single. He often takes aim at my teenage son which is crippling for me. And my son. We have been married 6 years and I don’t know if I can cope much longer. I practice living in the moment, letting go and staying calm And I often think about how I would want to be treated if I was the one with the illness but I’m really getting to my wits end. The lack of kindness and the lack of warmth are soul destroying.
        And the thing is, it is only going to get worse. Sorry I sound so defeated!

      • Carole Malloy

        I feel so much like a lot of these people , I have worked hard all my life now only to have to give up a good job to take care of my husband with dementia. He thinks I take his stuff that I should take him everywhere I go ! I just want some time alone with my friends !im resenting him !I want out

    • Olivia Harrison

      My husband has early on-set dementia. He has always been critical and bossy. Now, he asks me to do everything for him when he can still function. I’m so irritated with him. I don’t want to be around him; I just want to be left alone.

    • Paulina

      I am a woman of 68 and are married to a wonderful man for 51 years.
      I got diagnosed with Alzheimer’s 16 months ago. Mostly I am in tears, because I say and do everything wrong. As long as I give into anything, he is happy, I just don’t want to live like this anymore. He says to me that he understands it all, so why do I see it the other way around? We now fight all the time.?

    • Sue

      I’m exhausted it’s like he’s.stalking me every where around the house. Our onlson died of cancer three and a half years ago. I really have no help. His friends don’t come around anymore, I try and take him to the grandkids sporting events but he’s losing interest in this. My guess is he’s had this for 4/5 years but with death son dr thought it was depression. Interesting thing was 4-5 years ago son mentioned he was worried about him. He no longer can dress himself, can’t find rooms in the house and most days no clue who I am. With Covid hiring help to come in is limited. I’m starting to resent him and then I feel guilty.

    • Carla

      Your just taking care of this person you’re not married to them. You can walk anytime. My husband was diagnosed with early onset dementia 2 years ago. He’s 57 now and I’m 61. I read that book didn’t help me any. I work full time still. His family doesn’t help with anything. Nothing!!!! He’s a nightmare. I have to do everything… he’s mean to me just sits in his chair and watches Fox News. No talking no thanks that I do everything. Lately it’s been effecting my health. Seems like I’m sick and tired all the time, literally! Can I divorce him? Please I need advice , help!

    • Donna

      My husband has Dementia AND had Laryngeal Cancer and can’t speak!! He mouths the words, I have to lip read, repeat myself 500 times on.the same question, raise my Granddaughter and today I am at my breaking point.I asked for a few hours alone to read…so I could gather myself, needless to say it’s 1 am and he is still coming in turning on lights so I can read his lips and I have finally yelled to be left alone! I hate when it happens but I need a break! He got a hold of bank card, overdraw.us 1700.00 and I just can’t get a moment to figure out how to fix that part..Im coming undone

      • Sandra

        I can certainly relate to all of this. My husband is Viet Nam vet, 100% disability. Been married 52yrs. He had 4 affairs that I know of and changed jobs many times. We have 1 son who is 43 yrs. old, an addict since he was in his teens, been to prison many times, still lives at home with his 19 yr. old girlfriend and my husband has always been our sons enabler. Son is a thief, doesn’t work, spends all our money, and could care less about us. Husband has been diagnosed with dementia a few years ago … the kind that is “abusive, call-the-police-on-him many times” dementia. I do not like him, much less love him, and he torments me every single day. We are both 76 yrs. old and he will not help me any financially, even though I worked longer than he did. Recently I literally “ran away from home”, fearing for my life. Am staying with a kind friend for now, had my husband involuntarily committed and am praying they lock him up somewhere where he can’t hurt anybody else. He is a dangerous man … has beaten me up and doesn’t even remember it! I am a 2 time breast cancer survivor with major depressive disorder, severe arthritis, panic attacks and not getting any younger or healthier. My advice to all you ladies living with dementia partners is “RUN LIKE HELL” from this situation while you’re still alive and don’t look back. His dementia is not your fault and he will only get worse.

    • CF

      My husband of 43 years has had dementia for the last 10 years, diagnosed dementia. Our sex life has been gone for many years due to it and all the sudden he has become very amorous but I feel like I’m dealing with my child instead of my husband and it is not appealing to me nor is it possible for him but he thinks it is. What do you do in this case? I am at my wits end. He is 85 and I am 74.

  • Carol Wright

    I was helped by dropping expectations and verification of the historical ME… I did not expect nor demand that MOM recognize me as her “daughter” nor expect that she would appreciate all I did for her for 13 years.

    I did not dwell for the loss of the person they WERE. I realized I could love a cat/dog for what they were, and not expect conversation. I imagined mom as a dog/cat personality. As her mind deteriorated, I related to her as “bird mom’..then my pet iguana.

    What you can experience is pure deep BEING, a recognition missing ironically in our daily interactions

    • Kris Alvarez

      Thank you. This is extremely helpful.

    • Martha

      What an imaginative thought… loving your cat that can’t talk to you, etc. I believe this idea will be very helpful to me as my husband’s dementia progresses. Thank you!

      • Sarah

        I feel so alone and I confess I fell into temptation. A male friend who gives me comfort, understanding and laughter. I love my husband but in a different way now. I will never leave him or stop taking care of him.

    • Diana

      We have been married for 45 years. He was diagnosed Dementia recently. We coped with the change in his behavior ok. But, when he was told to stop driving, things turned bad. He left me about two weeks ago and I am miserable. I want him back to our house. As he remarked frequently, he loves our home, especially my cooking. He left to show I wasn’t a good partner, as he told me a few times. Why do men with dementia often hate their spouse?

      • Angel

        I wish I knew. Mine has been completely mean to me since he found out. Says it’s my fault I keep him on a leash he wants to do what he wants and I should just move out. From what I’ve read it always seems to be the spouse they are mean too and no one else. It really hurts because we’re the ones taking care of them .

        • Toni Escudero

          That is exactly how I feel. It is only the spouse they are mean to. I get called nasty all the time. I am on call 24/7 and this is just the beginning.

      • Jessie

        I sure hope someone can answer this queestion. Im so tired of living in fear because he acts like he hates me. Gotten to the point where ai really dont like him at all. Mean & Bossy treats me as though I am the enemy who is the hired help.

        • Sadness

          I’ve been with my husband 50 yrs., and his personality only gets worse towards me. He has turned into the same person his Father was, from what little we saw of him. I know his Fathers family has Dementia/Alz history based on info we were told. However, my husband refuses to acknowledge any of his problems could be related. He still works at 66 and somehow is able to keep people fooled. He does this by keeping his discussions simple. He keeps control of all financial issues, and claims he needs a local financial advisor to handle his money when he retires soon, or he won’t be able to retire. He muddies the water whenever I ask questions and insists that I go talk to this FA as if my mind on getting a possible “Bernie Madoff” to handle the only money we have will be changed. My husband has always been off since I met him at 18. He could never remember songs or artists on the radio, etc.. he started forgetting things over 20 yrs ago, and may be dealing with both Learning Disabilities as well as Dementia related issues. He refuses to address it and my life is essentially over. I have become numb with fear as to what I’m going to do. I feel so cheated out of the life I thought I’d have one day as a senior. I really don’t care what happens to me now.

      • Linda

        I wish my husband with dementia would leave me.
        I wait on him hand and foot. In return I get verbal abuse and physical threats.
        We’re both 75. I am fortunately in good health. I believed at the time that marriage vows are a contract. For better or worse.
        The day our 2nd daughter was born instead sharing in the joy he stopped by the hospital to ask if I minded if he went to the movies. That was 42 years ago. I feel “0”. My two daughters are the best. As are my two grandkids. To me my husband was just a sperm donor.

      • Dee

        I think I’m just starting be caregiver to my husband, He’s mad all the time. Do you have a man that gets angry at EVERYTHING that has to deal with me all day. He’s nice to other people.
        He said he didn’t feel good and because covid is around. He knows he gets mad. He doesn’t know he’s a jerk! He is 74. He thinks he taken charge of me and makes my decisions for me. I’m always cleaning up something he took out for a project. He also went out in February and cut a vine that covered the fence. It blooms the last few years and so people drove to see it. Cut it Right down
        andd said it was heavy in February in the knee deep snow with a chain
        saw. Is this the beginning ? Married 45 year.

      • CF

        I don’t think he hates you I just think the person you knew is no longer the person you are married to and I’m sure he still loves you it is just that his brain has changed and he cannot except it. In all honesty, and as hard as it is it is nothing you have done. When he comes back, and I’m sure he will come back, and as he progresses, he will not want you out of his sight and then that is a whole other problem to deal with. This journey is not for sissies but it is for better or worse and you have to take care of yourself along the way.

    • Barbara D.

      Thank you. This is an extremely wise comment. I struggle with guilt of not being able to maintain the same level of depth in my relation with Mom. I sometimes relate to Her as to a “frog” from the tale about a prince turned into the frog. All I need to do is keep loving but I KNOW She is not going to become Herself again for longer than a few seconds. But I definitely see that She feels happier when I act like I always did, relaxed, trusting and loving around Her. Like you said “pure deep BEING” has to be respected and to this we can still connect. Independantly I was also usig some animal (very cute and loved by me) “nicknames” and I saw She liked the tone of my voice when I joked that She is THIS. I see She loves to see me happy and accepts whatever I need to keep this going. She still cares about me being happy more than about Herself. Like a reading, phone calls, my close friend visit. I still see love in Her eyes even if She says she doesn’t love me. Words mean nothing. As long as I can climb the connection spot and hold on to each other… THANK you for your excellent way of short describing how you deal with it. It is very helpful.

    • Sheryl

      Some days I just want to die. Rather than be imprisoned by my husband’s disease. Diagnosed with semantic dementia but could be Alzheimer’s the hospital said. It is like looking after a dumb Labrador dog. I hate his stupidedty. It is so lonely.

    • CF

      What wonderful words of wisdom!

  • Charmaine Liang

    I thought I was the only one. Over time you fall out of Love with your loved one, but the feelings I have is deep pity and you almost become the parent to the Alzheimer’s sufferer. I can go on forever, but at a time when we should be travelling & enjoying our lives together, with the children more grown up now, you become a parent to a young child again. How sad & heartbreaking??. My husband has had early onset for about 10 years now, he is 66. I am 58.

    • Bobbie

      Wow. That’s me!

      • Maureen

        That’s me also except that I have been diagnosed with terminal cancer. My thoughts and emotions are all over the place

      • Merafe Peschke

        My husband’s since 2009 with Parkinson so many years taking care of him my feeling tottaly change bcoz of my stressed, anxiety, depression were not conversation his answers if I asking something.i CNT handle anymore everyday I cry.

        • Pat W

          I have the same situation. You are not alone. This is so difficult with no help. No talk, only nasty comments from husband in nursing home. I am not wanting to go to see him but must, as nobody else goes.

          • Mary

            This is me too . My husband has BVFTD and is in a nursing home. He says horrible things to me and never hugs me anymore. It was our 54 th wedding anniversary yesterday nothing from him not even a kiss. I too question my love for him anymore. It is so hard . I see all our friends retired and enjoying their time together but not us. I cry frequently and really feel low and just a means to his needs. It is lovely to share with others experiencing the same.

          • Mary

            Me too. His demands and verbal abuse to me is awful. I am just a means to his needs. Likewise I have to visit the nursing home as no-one else goes. It is very difficult

          • Marty collins

            I have recently been diagnosed with dementia. I DO NOT want my beautiful wife to
            Go through this. What should I do?

          • Kristie

            Wow. I think I have it pretty badly too. Not only is my husband 75 and has severe alcoholism, he has alcohol induced dementia and is blind in his left eye. He ghosts me to go get alcohol when I’m sleeping and I’m left looking for him everywhere. I’m exhausted. Confused. I love him so much. I have Attention Deficit Disorder and self medicate. I need to find him to say that I love him and I’m sorry. I treated him like all I wanted him for is his money. I even cheated. I was wrong. I don’t want to lose him. I’m scared. I don’t know what to do to find him. He’s out there somewhere but I don’t even know where to start looking. I had a tracking device on him but it said it couldn’t get wet and he took it off to shower and I forgot to put it back on him. Nobody will help me find him. Not even the police. I don’t know what to do.

        • Christopher Evans

          Me too… We’ve been married now for 5 years this year together for 7 years. He is 55 now he was diagnosed at 50 I am 44 and I had to get a part time job just to get away. My mom also has it she is in late stages.. I noticed that even I am having nerve issues – my head shakes when I think of him dieing.. He is my world I love him but there are times I say things out of anger and I regret saying it later cause I know he can’t help it.. So I feel really guilty of emotional abuse towards him and hate my self… He has become physically violent at me in the last 5 years the last time I was paying rent and he came inside the business office and started cussing at me and ripped my shirt he just bought me about a month or 2 before that. Anyway they called police he was arrested for domestic violence and battery and not to make contact with me.. but I made contact with him and everything has been ok.. since we left where we lived. I just don’t know what to do minute by minute most of the time.. He always talks about his days as a international Corporate Attorney of 25 years he started at age 21, he graduated high school on a Friday that same weekend on Sunday he also graduated college with his 1st degree at 15 but now he just don’t care about anything and I’m very sad to see him like this…

          • Shirley Czerniawski

            I don’t k ow why I say mean things to him because after I get him in bed for the night I feel so bad and then the next day I try harder not to say mean things and I try harder to show him love he still tells me he loves me

          • Debbie

            OMG! You are all telling my story. My husband and I are both 67. He was diagnosed 3 years ago. I am RN and noticed the changes and asked for a meeting with his doctor. Testing confirmed. 2nd marriage for us. Been together 20 yrs and married for 16. He now asks me if I ‘live around here’ and talks about his wife, Debbie, but doesn’t seem to that is me. He thinks I am someone hired to take care of him. ? One of his daughters takes him to lunch once a week. The other one is in denial and rarely makes contact. I am so burdened. Prayer is my refuge.
            Everyone take care and be strong.

          • Andrew

            Mine is similar, the deficits are outweighing the pros, no motivation, she has died yet lives, dementia at 38 or diagnosed, and she now just is bombed, nothing is left.. Thanks for sharing, I am struggling .

          • Sue Vanlaanen

            This is for Marty Collins. Marty, you asked “I have recently been diagnosed with dementia. I DO NOT want my beautiful wife to
            Go through this. What should I do?” My response: Dementia’s path for every patient and every caregiver is unique, but it’s probably unavoidable that there is a difficult road ahead for you both (I know, I’m a caregiver living through the same anguish many have expressed here). You know what I most wish I had from my Alzheimers-addled husband? Messages from his former self, telling my what a great job I’m doing, how he loves and appreciates me, with reminders of the person he once was and the happiness we once found in each other. If I could have maybe a year’s worth of notes to open and read once a week, and then reread, I would not feel so alone and disconnected from the husband I pledged myself to 28 years ago.

          • Joni

            We have been on this journey for 2 years now, it became noticeable when my husband was 53. Too many things were happening that had me suspicious, because his dad had early onset at age 59, so I watched my husband more closely due to that. It took until this past June to finally get a diagnosis of FTD.

            He is a different person. I sit in silence most of the time. My 18 year old is at home but she has a life so she’s not always home, and right now with Covid going on, I’m limited to outside visits with my granddaughter (my oldest lives in a fearful Covid bubble) so, needless to say, I’m lonely.

            I’ve become verbally abusive as well. I’m so angry all the time. I’m so relieved to know I’m not alone. I am always so ashamed of myself.

            How do you get through the loneliness of being single but married? I just turned 51. I’m not ready to be done with companionship and mutual attraction.

            I find I’m tempted to step out of bounds, so to speak.

            How do you resist, when you’re feeling so vulnerable.

        • Penelope

          Oh my! I am 81 and caring for my 86 year old husband who has significant dementia but still has most of his “being present “ mind. I cannot imagine your pain but know that someone out here is thinking about you and hoping you can find the strength to realize that you can only do so much and then you have to let go.

        • Linda

          My husband has had early onset for 6 yrs he’s 64 now and I’m 59. He was doing really well till we moved to FL last year to be near my son. That changed everything. He’s been going downhill ever since. I work from home thank god as I couldn’t work outside the home now. I feel like I cry every day. I’m having extremely hard time dealing with this. I’ve gained so much weight He really needs help doing almost everything now. I get so angry and resentful sometimes. I know he can’t help it. I know I have to reach out to talk to someone but I find it difficult to do it

          • Mary

            Linda n all others… I know that I feel stuck a lot of the time too. It seems so hard to make a phone call to reach out. But if you can push through n do it, you’ll feel temporarily better. Or ask someone to call you on a regular basis. Looking forward to something you enjoy doing or being with a friend you enjoy being with…makes all the difference in the world. Can you call your local Senior Resource Center or Alzheimers Association? Please connect WITH Teepa Snow online. She speaks of Positive Caregiving n is an expert in dementia care n is nationally known. Also, for everyone…i put pictures of my husband n I out all around the house to remind me of our love n commitment to one another in sickness n health…rich or poor…for better or worse. I try to remind myself to SMILE n celebrate any Joyous moments that occur. I do get 3hr breaks 4x/week n although I’m usually doing food shopping or misc errands …sometimes I get in a walk at a nearby park or scenic location. I pray a lot with my husband n read aloud our devotions. We sing songs together. He likes to read n read n read the same thing over n over. But it also helps him feel he’s contributing. It’s taken me a long time to get comfortable with the VA Support group but I’m glad I’m in one. Good n fun Memories don’t come to me on their own, but it’s worth the effort to relive those times to give me a sense of calm. I’m glad I saw this site as I’ve never heard anyone say theyve fallen out of love with their husband before. I totally get that! But I don’t want to stay there. So I pray I can learn to love him in whatever present or unprejudiced moment we are in. He’s still my husband n although I’m his caregiver…I’m first his wife.

          • Mary

            It’s Mary again. I was also going to add n forgot to include that medication has helped a lot of my husband’s inappropriate /dangerous behaviors and angry outbursts.

            Also I couldn’t figure out how to change the word unprejudiced to “unpresent” in today’s earlier post.

            Lastly, does anyone from the Alzheimers Assoc ever respond to any of these posts?

            Thank you.

          • Joy

            I feel the same .I am sure my husbands Alzheimer’s will kill me before him,

          • kate

            Linda…you need to go talk to a therapist. I did 7 it helps a lot!

      • Lori

        That’s me too. My husband is 67 and I’m 59. He was diagnosed three years ago but we’ve noticed a change five years before then. It’s hard for anyone to imagine what I’m going through.

    • Deborah Demeo

      Omg..You are living my life!…I loathe this disease and I can honestly say I have fallen out of love with my husband… He has early onset for 3 years …hes 62..and I’m 56..living a nightmare that I truly cant handle ..

      • Elizabeth

        I guess I too have become an unwilling member of the sisterhood. I hate coming home from work any more. The minute I walk in it’s all the things that went wrong during the day and left for me to fix. Am I a horrible person for wanting the day to come when he’ll need a facility and I can have some semblance of a life

        • Lily Long

          I also think I a part of this sisterhood too. Unfortunately my husband still functions on high level in areas of finance as he was the president and coo of one the largest companies in the world. He can fool people and refuses to be tested. But our life has become a living me hell. He now treats as if I am one of his former employees and does not want to see people at all. He refuses to see a neurologist. He has many health issues, now gets words very confused and is obsessed with the news. Misplaces everything, needs help dressing. Has left his phone in the refrigerator etc. He is very angry with me.
          Others soothe him, such as doctors and attorneys, staff not wanting to be cut off the money train. This has been going on for about six years. I do not like him anymore, but still want to care for him, but feel it may kill me first, even though I am quite a bit younger. I am so isolated, not being able to share with others. I do not have family.

          • Jo Ann Fowler

            Well you are my story too. My question is
            What do we do to fill that need for companionship
            My husband is still high functioning but loves to go shopping. He would be happy with a closet full of new clothes weekly…however forgets they ate there. In church he puts his arm around me but this is just routine. He is a tv addict. Old repeats daily he has seen before. Sad..I want someone who puts me first again. How do you all fill that void????

          • Debbie

            Dear Lily, it has been a long time since you wrote your post. And I hope that things turned out better for you. What you describe is what I went through for a year and a half, he could fool anyone before he was diagnosed, everyone thinks of him as a cheerful very sociable person, and they have no idea how awful he was and now is. It took a year and a half for me and the gp to get him to accept going to be tested properly, and the meds worked great. before he was diagnosed I described to some one that I felt like a little insect with it’s limbs and wings being torn off little by little, i had to haver anti depressants. I described him to myself as a gorilla chewing on glass when he used to literally shake with anger in my face, threaten all kinds of disruptive things, tell me to leave if I didn’t like it. I came on here this evening having typed in “Alzheimer’s – my husband feels everything is pointless”. He has hurt me so much, but today like loads of other times, it’s all about him, he doesn’t care about our home, the garden, and feels that we should break up, he asks why I stay, he accuses me of being on the telephone having a conversation. I could go on, but the point is he would rather disrupt our life together by breaking up and not understand how that makes me feel. I fell out of love with him in the year and a half before he was diagnosed, how could i love someone who was destroying me?. I stayed, just like so many out there And so many of us cannot honestly, truthfully say that we are staying because we are in love. I love him, and care about him and remember what our short life before Alz was like and it was wonderful, I’m ashamed sometimes that I am here because I need security, continuity, and yet I also don’t want him to be alone. Today, like many before I just don’t know what to do, don’t know how to respond to him.

          • Sue

            Oh my God. Your situation is identical to mine. I am looking for support, venting, questions, etc from someone whom is in my situation. Would it be possible to communicate further? Thanks in advance, as well as I do understand that our lives are unnaturally chaotic & mentally incapable of doing otherwise normal or easy things. I’ve refered to this as “my cup has reached it’s capacity or my accounts in the negative”.
            This is literally going to kill me & I absolutely know it. I can’t…

          • Sherise Scott

            I understand quite well. My husband was an attorney, there is an age difference of 26 years. My husband was diagnosed with dementia in September 2019. However, earlier in May of 2019 my husband was driving home from work and hit another car. I was on my way home when I saw his car parked on the side of the street. He claimed the other driver was at fault but I knew better. The worst for me is when my husband kept saying “there is something wrong with my brain.” Even though I always stated the opposite to him he knew something was wrong. If I can say anything to you that is to get his doctor to revoke his license. Get your finances in order. My husband had a law firm. I was fortunate to have worked and manage the office. Get your locks changed so he doesn’t wander. Get cameras in your home and start locking things up. My husband has a thing for salt and pepper shakers and silverware. I had to lock them up because I would find them all over the house. Right now, I just ordered some adult diaper. He can still us the restroom but he has have problems with wiping and he wont let me do so. It so much, but remember “this too shall pass.” What I have learned is having patience and compassion. Yes, I have been very upset at my husband because they will do some mean and strange things. If he is in the VA, get help there.

          • Kay Thurston

            I am married 6 years been together 12 to a now retired anaesthetist. I was widowed at 50 this is my second marriage. I noticed 8 years ago small lapses in my husband’s memory which has now deteriorated further, he is constantly on the phone to banks etc. As passwords are a nightmare for him, he constantly loses items, his short term memory is becoming shorter by the month and he has become obsessed with his diet and health and covid has increased this obsession. We argue and I guess have tolerated each other for sometime. He was a very demanding, controlling person before but has become more so. I am writing this have left him over some petty argument and him informing me he thinks it’s better we part. I don’t think he realises how much input I have in his life for him to function.
            A divorce feels imminent and I really didn’t want this. I have cared for a very close relation who had dementia so understand the commitment needed to give to care for someone with this illness and was willing to care for him. He helped me so very much when I was widowed and now I feel I am giving up when he needs me most. He will not go to the Dr as he said it is just an aging process but it is becoming more obvious everyday. I have told a close friend of ours what I think his problem is as most people would not believe me as he can still function very well in lots of ways.
            Its makes me very sad to think about what will happen to him as his children are not and never been in contact with him for many,many years and the rest of his family I feel will take advantage of his diminishing memory…this is happening now.
            I know my life would be very much easier for me to walk away like he wants me to….but would it be happier knowing that I let him down at a time he needs me? I don’t think so. This is a terrible illness.

          • Angel

            My fiance is the same way. He however is a doctor. He is great at work but at home it’s different. His driving has become bad , he can’t remember the simplest of things but can remember everything he did at work and what prescriptions were wrote. He has become mean and gotten poor hygiene. He will wear the same clothes for days at a time and only take a shower once a week when I nag him. Stuff he has been doing for years he is now looking up on how to do it. Luckily this is his last month as working as a doctor then he is retired. It’s depressing because we would love to travel but I know that will probably never happen and the next 10 yrs is going to be a nightmare.

          • Barbara Hannah Bready

            I am in the same position, life seems so sad. Actually the best part of the day is when he is asleep. He treats me as if I am the help, will not listen to anyone fights with me. I am so sad.

          • Sue Bates

            I feel the same also

          • Hanna Peterson

            This is for Cherise Scott: there is an after market Bidet that can be attached to any toilet. It allows a warm water cleansing and then drying after a bowel movement. Look it up on Amazon.

        • Pamela

          I feel exactly the same and have the same thoughts. Thank you for helping me not feel alone

        • Claudia Veiman

          I feel the same but am 76 and I am sure he will out live me. So I pray for strength to keep going ( the crazy one day at a time) I do get out to play bridge or visit my sister

        • Susan

          I also dread coming home. The weekends are torture when we are together all day. He looks for things to needle me about and he is always angry with me. I say things to him that are not nice and the guilt consumes me later. Not sure where the fine line is as to if it is the dementia talking, or him. He does not take care of any huge decisions or finances. Everything has been on my shoulders for some time. I am 66 and he is 69. I try to keep busy, but if I spend too much time away he gets jealous. So sorry for what you are going through.

          • Lisa

            I had noticed subtle changes in his personality and attitude towards me over the last 3 years, we have been married 19 years, he has recently begun to lose things and tell me I moved them. He has also made some rater large monetary mistakes .
            He acts angry and says these things are my fault. He is pleasant sometimes but can change to sullen and quiet in a moment.
            He is very jealous of anyone or anything that takes me away from him.
            He is 83 I am 60 and i am miserable and do not know where to turn.

          • Jean

            Now I know I am not alone. My husband has been progressing for 9 yrs. I’m younger than him by 8 yrs. I had to quit my job to take care of him. I’m no longer able to get paid help to come in so I can get out for a few hours any more. He has to know where I’m at all the time. His new thing now is he just wants to die. When he takes none of his word my any sense at all. I hate my life.

          • Kelly

            My husband was diagnosed with early onset parkinsons 5 years ago. I had to google dealing with spouse with Alzheimer’s looking for info on how to deal with someone who is no longer who they were and you no longer like them. At all. Can’t be in the same room without being angry and resentful. Parkinsons and the parkinsons medication can change a persons personality entirely. My husband was a practicing trial attorney at my practice 5 years ago. Now he is home and resembles part meth addict part Alzheimer’s. I still work double to pick up the loss of him and still have two teens to get through college. I always did everything other than what he did at work. Everything. And worked. I never got thank you’s or bday or Christmas presents. I never got any support with any problems running my law practice that employed him and gave him tons of freedom to enjoy time with the kids I didn’t get. But I came to terms with it because he was fun, fun for the kids (no parenting but fun) and being together was generally happy. Now all that is left is all the bad qualities I decided long ago I could deal with because I really liked being around him. The lies about money, selfish, destroying cars, Never appreciative – let it go. Now it’s all lies, breaks everything, he is depressed and selfish, guilts kids who don’t want to be around him, never did anything for himself before and isn’t going to try to overcome any challenges even for the kids. Nothing to like anymore. I hate who he is. I’m angry because I never know what is the disease and out of his control vs what is just truly him, minus the gregarious part because he is only concerned about his state of ill being. Which is horrible for him I know. But I also know if the tables were turned he would not do anything for me. He’d tell my 15 yr old daughter to shoulder it. And if I was gone he’d guilt them into never leaving and caring for him. And knowing that makes me deeply hate him. Followed by guilt. Then hate. Then guilt.

          • Joy

            I too feel that living with my husband who has had Alzheimer’s for four years is killing me. The stress is unbelievable. Having to keep all the balls in the air, find things he has lost and put up with his bad moods is making me feel suicidal. He was such a lovely person before the illness but he is extremely deaf so I find repeating things louder and louder exhausting. I lose my temper with him and then feel very guilty, but trying to understand his frame of reference is making me doubt my sanity. My heart goes out to all of you living in this hell.

          • kate

            you have to go and have fun… just a little every day! I started doing it… you are right! he is jealous…his life is very small. do whatever you want. This is YOUR LIFE! He will be nicer if you do some things for yourself! Not right away, but watch… it will happen. Respect yourself first…
            : }
            I’m an artist…try creating!!!

        • Nancy

          My thoughts too. Feel guilty but he exhausts me daily.

          • Debbie

            Oh how everyone is singing my song! My husband is 71, I am 65. He has been having issues for more than 10 years and has become less and less capable in the last several years. I had to retire to take care of him. He is decent in the morning, even though we have conversations that are nothing, just about the dogs or he wants SEX. All the time, he talks about it, like 150 times a day. Problem is, I don’t know this man anymore. He needs help with everything and I am not attracted to him. He is not who I married at all. In the afternoon he sundowns and goes back in time to high school. I become his sister or his mom, he has no idea who I am, not even my name. Wants to go home…I have no where to take him. Dr. says it is time to put him in a home, but I can’t afford it. He punched me the other day because I took the phone from him as he was calling his sister using 911 as the number. He wanted her to pick him up and take her home. I wish she could, but she lives 3,000 miles away. He thinks he is a teen which is why he is hypersexual, however when a person has no idea who you are, does nothing for themselves because he can’t, calls me names, is unappreciative for everything, pees on the floor, etc., it is not happening. I sometimes feel really hateful feelings and then I realized that is because this man is nothing, NOTHING, like the man I married and is a man I would NEVER marry in a million years! Yet, we are all supposed to deal with this, and I am to the best of my ability. But don’t beat yourselves up for how you feel, this is not the person you married and probably would not have married. We are lonely, alone, depressed, sad and widows of living people. We all deserve a hug, we are in the trenches…Hang in there Ladies, believe me I know it sucks, but knowing we are not alone in our feelings and lives is comforting. Bless all of you for what you are going through!

          • Martha

            It’s the same for me. I feel so mean being the way I am. I just need to be left alone for awhile. The children never offer any help. I think they refuse to see the situation, just so they don’t have to do anything. He is killing me day by day.

        • TVDavis

          I, too, hate coming home from work. My husband turns 76 in less than a week, but I’m younger, and I feel like I got cheated & duped. I think doctors and others knew something was wrong & just kept saying it was “normal aging” when I expressed concerns about forgetfulness & strange emotional swings. I have to travel in about two weeks & I am exhausted from the strain of caring for him, looking for aides that won’t break or steal everything in my house, that also don’t eat up my entire salary, just to sit and watch TV with him all day while he eats a sandwich. He feel out of bed in his sleep less than two months ago, and he is now a whole new level of awful to deal with. The hospital trained him to wet the bed, so now I’m changing diapers and bed pads every day, while still getting him up & to the bathroom all night, because he still soaks the damned diapers. I have an aide come in for a few hours three days a week, and I have to do everything anyway. She couldn’t figure out how to open a mouthwash bottle! For $22 US per hour.

          Sorry for the rant, but I completely understand those who say they’re widows. I got two years of an ok husband, and six years of a slow-moving disaster that I’m alone in dealing with.

          • Lois

            so sorry for your situation. I feel I am at the start of the road you’ve already travelled. My husband suffered a stroke 9 months ago, the clot affected the pre frontal lobe. he has convinced clinicians that he is unaffected. he knows that I believe the stroke has prevented him from knowing what is appropriate language (nothing sexual thank goodness) but often very rude and insulting. he laughs hysterically after he’s done this and says he’s ‘joking’. When I tell him a joke needs to be funny he tells me I need to get a sense of humour. (one example- referring to ladies at his Sports club as ‘vermin’ and he’s bought a pullover embroidered with the logo ‘The Verminator’. He’s not been able to wear it yet as the club has been closed due to bad weather and the holiday season) I have hidden the offending pullover and replaced it with one the same colour but I live in dread of him realising what I’ve done. he has forbidden me from speaking to anyone about his stroke and warned me I should be very afraid of what he’s capable should I disobey him.
            He believed I had my GPs private tel number (different aspect of my life) and wanted me to call it directly to get her write an emergency prescription for his gout. I told him I couldn’t possibly do that. he gave me the most sinister look and said ‘you’re refusing to help me,’ in an intimidating mono-tone.
            if I knew a sure fire way of committing suicide I would but also I can’ leave my son to be responsible for this guy he no longer recognises as his father (tho I’m the only one who gets screamed at. others get lectured at until they manage to get away from him. there is no social life I can have with him. I am an abused servant.

          • Annette

            I have just discovered this blog and while I can do little to help, I may be able to help you with your husband’s night time problem. My husband is physically unable to get out of bed at night and I have found that Forsite Maximum Absorbency Protective Underwear – lined with – Tranquility Top Liner Super Plus Booster Contour Pads give us a dry bed and clothes -every night! Hope this helps with one of your many trials and tribulations.

          • BJ

            I, too, hate coming home from work because I’m afraid of what I’ll find. It’s never anything big or too bad (not yet anyway), but a million little things. I paste a smile on my face, but it fades very quickly. Feels petty to even say what the little things are, but there are a lot.
            My husband was a lawyer, had a stroke, and now has dementia at age 62. Prior to that, he had a brain injury from a car accident, then was an alcoholic. I had to go back to work as a lawyer – it had been 16 years since I stopped practicing because I ran a small event planning business. I closed that – needed more money than that brought. Now I work SO HARD, and my formerly hard working, witty, kind husband is a shell of what he was. Doesn’t initiate conversation, no initiative at all. If I don’t ask him to do something, he does nothing. Other than the laundry, I do everything and I’m exhausted. More than that, I get angry and annoyed all the time. Friends are planning for retirement and I see no end.
            I also feel alone – maybe our friends are uncomfortable around us? Very little socializing (even given Covid).
            Has anyone found that their friends are staying away? Sorry for the long rant…my first venting!

        • Jeff

          I can totally understand. I think I actually hate my wife now. Haven’t been in love with her for sometime. I have been with her 44yrs. Wow.
          I think what’s it going to be like living alone. Great I hope. I’m in great shape workout at gym. Getting into body building. Wow I’m 69 look 50’s. She’s always wanting sex. Not why? Haven’t slept with her for 10yrs. Wow.
          Anyway it’s very hard I’m also alone no kids parents family to ask for help.
          Stay strong you’ve made it this far

        • Mary

          I feel the same. We have had a horrible relationship anyway. He did some awful things with money giving a lot to my stepson without asking now we have to remortgage our house by the way and being mean to my son… his stepson. I did everything for him and still do. He is 79 and I am 64… work full time as an ED in a large pediatric urban hospital, level 1 trauma and exercise, teach spinning classes I don’t like him and I say mean things… I hate myself and want to divorce him but I feel sorry for him

        • Betty

          It’s not wrong of you. I feel the same way only worse. My husband was physically and verbally abusive to me from the time we got married. Now he has dementia and he’s just mean to me. He’s 78 years old and I’m 76 and I just want to put him in a nursing home so I can have a few years peace before I leave this world. I just don’t know what to do anymore. I’m very depressed and I just want it to be over. I would rather be dead and have to be forced to take care of just hateful man anymore.

          • Jan

            I feel exactly the same, haven’t loved him for about 30 years before dementia, he’s had dementia now for about 5 years. I really don’t like him & should have gone years ago. Now scared of upsetting my adult kids if I leave.

        • Maria

          No you should not feel guilty! Watching my husband’s once brilliant mind slowly atrophy where he no longer can carry an interesting conversation is awful. I’m praying for this to be over!

        • Geraldine taylor

          No, not at all horrible. I know you wrote this last year, am just reading it now.
          I used to cry coming home from work and then faced. Y damage, bizarre mess …
          It was hell on earth.
          Are things better for you now?

        • Arletta

          Dear Elizabeth and all others
          I am in a similar position. With no cure at this time, my husband was diagnosed with bone cancer multiple myeloma, Amyloidosis, and kidney cancer. I was 57 and he was 55 For the past 10 years it has been a challenge and a half. At age 65 now he is not able to walk. He loses control of his faculties a lot. Both of his knees caps are detached from the patella and are up in his thighs. There are so many other complication around his condition. Now he needs total knee replacement on both knees. On top of that he has glaucoma with amyloid and has hard time seeing with the progress of it. I am 67 and doing just about everything for him. After 10yrs I almost forgot how nice things were before. My days starts with me mentally asking what my day will be like and at the end I am mentally and physically exhausted.
          I get so saddened sometimes, angry and disappointed thinking why me, life is not fare and I don’t deserve to be in this situation. I was a good wife. Am I being punished. I pray all the time and it helps. I feel guilty when I wish we were never married sometimes. I feel selfish when I want my life back. He doesn’t have any type of dementia so he knows and feels so bad. I hear him crying sometimes when he is by himself. We have been together 25 years and I have never seen him cry until now. He prays a lot also. We have to pray for each other to stay loving to our husbands. I have to endure and be strong for it could be me. I hope I help someone as all of you have helped me. Peace and blessings!

      • Chel

        I’m the same

      • Anthea Millier

        Oh , I understand I am the same….don’t think I will cope . I don’t love him and he has not loved me for years ….

        • Mary

          I have the same going on. I’m not in love with him anymore. He has hated me since he came home from the Hospital after open heart surgery. I know that should be a different group. The comments are the same because pumphead causes dementia and Alzheimers. Even when doctors won’t admit it. It’s a nightmare that I can’t wake up from. Divorce has been an option many times. People keep talking me out of it. I’m also raising our Granddaughter. Her and my kids all see the difference in him.

      • Debbie daricha

        I totally hear you I’m in the same boat it’s sooo frustrating omg!
        I feel like I can’t take this anymore!
        He can’t remember anything if I don’t lay it out he forgets..
        Today he forgets his water bottle that he had with him always .. oh I must have set it down to take a drink I’m like ok I’ve told you to put back in your lunch bag every time.. this is the 3rd water bottle in 4 months..
        I’m hating him more everyday I call him stupid idiot I can’t help it!
        Not fair and he doesn’t think he has a problem really!!

        • Toni

          Same here. I understand your situation completely.

          • Nancy

            It is a daily struggle. He was never an easy person in many ways, but now he is getting impossible. Everything I say, no matter how innocuous, turns into an argument or some bizarre contest of wills. I don’t like taking care of him; I don’t want to be his mother. I am 73 and he turned 74 in September. We’ve been together almost 30 years. I can look back and see the deterioration has been happening for a long time. His general health is good and I am so resentful that he might use up my own health that I can barely stand to be in the same room. He has become “helpless” and does nothing around the house. I feel guilty at the same time I loathe him. I know it’s crazy of me to expect him to be normal, but instead of compassion for his situation, I just feel rage. To make matters worse, he is obsessed and preoccupied with sex. I really cannot deal with it. Even when I relent, he is no nicer or appreciative. When I hear of women who say they love sex in their 70s, I honestly think they are all a bunch of liars.

      • Andrea

        I thought I was the only one! I hate myself for feeling this way. He was the love of my life for so long. I feel so trapped now. We never had children of our own and his daughters with his ex are “too upset and can’t handle” dealing with his Alzheimer’s. Same with his siblings and his best friend … they can’t bear to see him like this. So, it’s just me …

        • Freida

          Hi , people just don’t understand the loneliness a carer feels. We had no children together either and my husbands large family fled to the hills once Dementia was diagnosed. I feel that his life has stopped but so has mine and I was not ready to slow down yet. Miss the conversations,miss the news and gossip.miss the affection. The daily little comments no longer exist. Carer just becomes a parent again. At 20 that was ok at 72 it’s not ok.. we Carers are trapped….

          • evelyn

            yes we are trapped i want a divorce and get on with my life now as have found love again what does that say about me .ifeel bad

          • Loretta Latham

            Its the loneliness especially now with covid as support is practically impossible even if family tried ,the actual look of hatred in a person’s eyes toward you when you know how much they cared for you ,the guilt of being angry with someone who cannot help who they have become is unbearable when its not in your nature

          • Nancy

            I agree we are trapped. I especially resent the entrapment since it isn’t the result of carelessness or bad decisions–it just happened. It makes me sick with rage and helplessness and guilt. If I had purchased long-term care insurance, I would put him in a facility so fast his head would swim. He would love it–being waited on and catered to and told how young he looks, etc.

        • Idalia

          Don’t give up on him his friends his family did but you don’t give up on him I know it’s sad hang in there with him

      • Lorry

        Your situation is like mine. My ex has had dementia for 4-5 yrs and i fell out of love and divorced him. He’s 63, me 61. I couldn’t take it anymore. So many suicidal threats.

      • Pauline

        Ah!!! I know exactly how you feel. I have a huge sense of responsibility towards my husband but I long to have someone to talk to share laughter with hold a hand and for once in a long time feel loved. I feel very guilty for wanting these things

        • Nancy

          I feel the same way. The responsibility looms greatly.Don’t feel guilty but I understand as I feel the same. Would love to have a normal conversation with someone. I’m so angry most of the time. Is it wrong to long for companionship?

          • VIVIENNe kirk

            Hi Nancy
            I read your comments about your husband having Alzheimer’s etc and the desire to have sex..I am in the same boat. Could we exchange stories ?

        • Patrick

          No Pauline;

          What u want is normal. We all want it. I’ve been without it for 8 yrs so I understand. So sorry for your situation!

      • Lori Sanford

        I’ve not met anyone my age that has an Alzheimer’s husband. When that diagnosis hits or the dementia characteristics surface, you lose it all. You lose income, friends, and family. Most importantly, you lose the guy you married. I can’t stand the new guy.

      • Nettie

        I find the toileting thing is overwhelming but there is no one else. People think because you’re married it is somehow easy but it is unbelievably difficult. There’s no escape and I struggle with the feeling of resentment that rises in me when I hear him using his bowls. I feel trapped. But I’m sorry for him too. He is also trapped. A once extremely, capable and brave, kind man, now stands shakily as I wipe his bottom and put new pull up pants on him. He no longer has his sheep, His friends, His motorbike or conversations of laughter and meaning. We are all victims.

      • Joni

        I’m 51 and my husband is 55. Our marriage wasn’t the best, leading up to when we started having him assessed (which I know realize was due to the onset of earlier symptoms) but, the damage had already been done.

        I have fallen out of love as well. I find that I live my life almost completely apart from him and I’m just here to make sure he’s taken care of.

        I’m ashamed to say that I have started to be interested in someone else, but have not given in to it. How do you deal with the yearning? I crave intimacy so badly.

        • Susan

          Joni, Don’t feel ashamed of what is entirely normal. This is an area that needs more discussion. My story isn’t really any different than anyone else’s. 2nd marriage for both. 7 years married. Now I know he’s had the disease for all those years. I couldn’t figure out what was wrong with me. Now I know. I met someone recently. That person just lost his brother to the disease. I decided to move forward with the relationship and I am a better caregiver because of it. We took it very slow in the beginning but even that was heaven because it was someone who cared about me. Someone who is “giving me care” while I care for someone else. I don’t advocate just jumping into a relationship for the sake of having one. But I do believe that if you ask the Universe to send you “a right” someone, it will and then it will be a “constructive” relationship instead of one that tears you apart. You have to take care of yourself first.

      • Sharon

        My husband was just officially diagnosed with Lewy Body/Parkinson’s. He’s been very disconnected for at least two years at age 58 his behaviors are out of control and he has done so much emotional damage to me along with some physical as well. I’m currently the caregiver for my mom who has vascular dementia and is expected to pass at any hour now. Dementia is a wicked disease and has destroyed me and my daughters.

      • Ettie

        I’m living a nightmare I just can’t handle too but no matter how much I cry or scream out that I’m not coping and that I’m done , nothing happens . I feel completely trapped. This man was the love of my life for almost 40 years but now I don’t know him or even like him. Who can wipe someone’s bottom for 4 years and not be broken. ?

        • Geraldine taylor

          I am so sorry. It is a nightmare, shackled to someone who is to all intents and purposes mad.
          Thank goodness for this forum.

          • Andrea

            Yes Thank you all! I never knew this site exhisted. Thank you. All this time I thought I was the only one who felt this way.

      • Joe

        I cannot get my wife of 27 years to the doctor to be diagnosed with alzheimer’s…….I absolutely know she has had it for about 5 yrs. She doesn’t remember who her son is and other relatives, she will continually ask me the same question over and over (sometimes 100 times per day)….she cancels all her dr. appointments, and then we have to scurry around to get her meds refilled. She is 73 and I am 70, and she is driving me crazy……she makes me think that she will go somewhere, and then she wakes up and cancels……yesterday we did not go to our only grandson’s graduation from high school because she said she was not feeling well….she will talk the big talk sitting on the sofa but when it comes down to it, she doesn’t want to leave the house….I really don’t know how much more I can take….she sleeps during the day and then can’t sleep at night, when I want to……..intimacy (no such thing anymore)…..

    • Peggy Maajor

      I have helped him since 1994. He has not really done much for me. I have broken my health completely down and now he is going to a nursing home and I will be left with no where to live

      • Carly Babcock

        Peggy, I realize that it’s been 5 months since you wrote this on this help line. My name is Carly and my husband has cancer and he also has dementia. He doesn’t know who I am and he believes there are two of me. He keeps doing things like calling doctors offices over and over again. I feel like my health is deteriorating and I suffer from major depressive disorder and fibromyalgia. I was curious what happened with you and your husband. When my husband dies or leaves here I will be homeless too. It’s so beyond anything that I ever could have imagined and no one in my family wants to hear a thing about it. I don’t have any girlfriends or anyone to help me leave the house. I don’t drive. Please, let me know how you are when you get this note. All my heart I am sending you love and support. Carly

        • Sandy

          Carly, My life is very similar to yours. Married 42 yrs, I have FM and I didn’t get an official, medical diagnosis so I am in denial not wanting this to be real. Just moved into a new home Aug 2019(which was a nightmare!), and moved his 90 yr old mother from out of state to live with us. I am detached and want to run away but won’t. I take care of everything & everybody. My husband is 70, I am 68. He is not as severe as some of the cases I am reading about. Curious… was he tested by a neurologist? It all seems like a nightmare. Looking for ways to cope.

    • Janet nash

      My 60 yo husband has Parkinson disease for the past 14 years. Recently he was diagnosed at 58 yo with PD dementia.
      I share all the same feelings you describe it’s so hard

      • Pam Abbey

        My partner is 53 years old. I knew he has had Parkinson’s for about 3 or 4 yrs. minimum. He just got prescribed sinamet. He refuses to pick it up. I know I cannot take care of him in re: to changing diapers etc. I did that for his mother with Parkinson’s. His anger and paranoia is out of control sometimes.I feel like that is terrible to say. I feel exhausted.

    • Ellen

      This is my life also , except he is very mean . Verbally abusing me . Yelling continually. Argues … it is not fair. He was not a good husband and now I must take care of a man I don’t even like let alone love.

      • TerriLou

        Gosh! I’m on the same page!

      • BRENDA Charlton

        I understand exactly how you feel.

      • Barbi Strom

        Same here. It sucks!!

        • Susan

          Hello. I’m Susan too. I am 66 also, and my husband has become very different from the closest friend and companion that I have known for 30+ years. I say things that I try to justify to myself later. He’s become very childish and self absorbed. I met him after I had spent 13 years in an abusive relationship. I learned what it is like to be truly loved, and now I don’t have that husband. It is sooo lonely, sad, and awful. I need time away to enjoy something, to think, and to recover some strength. I need to have something to look forward to. I need to know that I will have days off

        • wildrose

          reduced to fears or tears-both are downing me physically-while he, 88 seems happy most of the time–except for the other times. I am 75 and I feel as though my life is being stolen from me

          • Gerri

            Your age difference is the same as ours…my husband of 35 years is 88, and I am 74. He is still the same kind person, but very self absorbed and only wants to live in the past. Sometimes I forget his illness and I can be unkind when I get frustrated with him….then I feel so guilty. I don’t really share with his daughters as it would only worry them. I dread it getting worse, and coupled with this pandemic it really is takin its toll on me.

    • Bobbi

      My husband and I had been separated for years when he was diagnosed with Alzheimers. He had never bothered to put a life together for himself after I left. He had been unfaithful and emotionally abusive for most of the 27 years we were married. When our last child graduated high school, I made plans to move out when she left for college. And I did. Now years later since we never legally divorced, I am expected to be caregiver to my husband. I DO NOT want this role! I am nearly 70 and have raised my children. Whatever time I have left should not be spent taking care of this man who I do not even know or want to know any longer. Yet this is what everyone expects. Our daughter was there through the years of abuse and infidelity. She is an adult now and understands. Our son died right before his dad was diagnosed with Alzheimer’s and it’s all I can do to keep breathing through the loss of our son. Yet my estranged husband has no one else and I am the delegated caregiver. I want out!!! He needs to be in a memory care facility but no one is helping to make that happen. His doctors just tell me it is my responsibility. This is SO WRONG! He would never do the same for me!

      • Rosalind Saker

        You must get divorced, then the state will have to care for him. You have been through so much, you really need to be kind to yourself for once.

      • Helen

        I have been in a similar situation for the last twenty years caring for a husband who was unfaithful and un caring . I am now 72 with broken health and nothing to live for.

        • Liz F

          please don’t give up. You are worth more than you can imagine, and you are not alone. There is light at the end of a very long, dark tunnel. Get some help to find a place that will care for your husband, and let him go where they will care for him on a permanent basis. You can still be part of his life, and perhaps have the opportunity to care for him as a wife and not a nurse/carer. You deserve a life; make a decision to find it – it is not too late! I am 71, and after 15 years of caring for my spouse, I have felt broken and hopeless, and ready to give up. However, with help from family, friends and professional counselling, I have made a decision not to do that. It is very, very hard; but not impossible. I am still struggling with it, but I am determined to live again. I am a strong woman and I believe you are too. Fight for what you need; fight for your life. Good luck and have faith in yourself.

      • Liz T. B

        I am so sorry for your circumstances, My Husband has Alzheimer’s as well,?I am his caretaker the difference is my husband has been great all 27 years before Alzheimer’s, Please Let your Husband Doctor know that you need a Social Worker, they will be able to help you, Also A the Agency, A PLACE FOR MOM, they are great and very resourceful hope this helps, Stay Strong Ask God To Comfort and Strengthen You

        • Nora

          This site popped up just when I needed it most. My husband has had Alzheimer’s officially for three years but I believe a long time before that. Before the dementia he was controlling and verbally abusive. Now he is placid. A small child. So in that respect life is easier although
          tedious at times. What causes me the biggest stress is two of my sons who come to visit and continually criticise me about everything. They tell what I should be doing and are often very rude. One son 44yrs turns up and stays fo a day or two and behaves as if he were a teenager. I have COPD , but they never seem to notice that. Some days I struggle with my breathing. I do have home help for an hour a week and that is a godsend.
          My husband just sits in his chair and says nothing.
          So I was very grateful to know I was not alone. If it’s difficult to care for someone you love, how much more difficult it is when you are expected to care for someone who treated you badly.

        • Sharon

          You all have saved my life tonight. I was completely alone and actually betrayed by his sister who I’d trusted with my thoughts fears and frustrations. AD ruins lives. I couldn’t find a drop of hope in me to go on. Then I found this forum. I think I can make it through this night after all.

      • robert demers

        what do you mean the doctors are saying its your responsibility,your out,leave,get a life,,you had already left him,,ended all responsibility,,unless your dimentia is worse,just to be curteous lend a hand[-if possible]to help find some sort of care solution.BUT IT IS NO LONGER YOUR RESPONSIBILITY …AT ALL

    • Donna

      I’m 47 and my husband 56 was diagnosed 2 years ago with dementia alzheimer type. I honestly feel it started back in 2014. For me the question is… Is it better to sleep alone and feel lonely or sleep in the bed with your loved one and still feel lonely. I’ve been a CNA for years and can take care of people all day long without getting frustrated but I get so easily frustrated at home.

    • Marty pongrac

      Good morning, dealing with MS and dementia. Husband does not respond to some questions. All he wants to do is eat and watch TV. Head had his illness now for 40 years. I am little exhausted . I have to start every conversation. It is a long out process. I am 71 years of age and Husband is 72. Thank you for listening and letting me share with you. Be Strong

    • Darlene Kelly

      Thank u 4 your post it is helping me to pt things in perspective

    • Cynthia

      That’s me! I’m so confused on what to do? I took my wedding vows seriously!

    • Judith McDonald

      My husband was diagnosed a few years ago and as we run a business together it is becoming worse. Have not had a holiday for over 10 years and I am at breaking point because he has made such a mess of our business, son was helping out initially which was great but he seems to gone off now. I too feel like I’m raising another child as he cannot do anything by himself and expects me to do everything for him which is quite normal but with business I’m doing the big load and worry about finances etc. and just doesn’t get it. I feel so lonely and yet I am a fairly solitary person. My mum passed away last year and I really miss her, we could talk about anything, my sister has been pretty horrible to me since mum died. Just dont know what to do l worry about everything and find I really resent my husband now, too much pressure for me.

    • Suzanne Jones

      I am so sorry. That is my current experience as well .

    • Mary

      I am you. My husband was a successful emergency physician. He is progressing rapidly. Two years ago he was an ER physician, today he spent 10 minutes trying to figure out how to open the refrigerator. I am exhausted and depressed most of the time. I am with him 24/7 365 and at 65 I have become his parent. It’s like having a toddler. Friends disappear and you can’t go anywhere. My only texting buddy ghosted me so I came here. Thanks for the opportunity to vent.

    • Susan K

      It has helped me today to read your comment ,My husband has had vascular dementia for 6 years and now parkinsons he started at 62 now 68 im now 63, and i come to this site today cause i was feeling guilty for not loving him as a husband ,but i do deep inside we have been married 45 years vietnam exposure to agent orange did this so i’m very supportive to all vet’s as they gave all to protect this country, and deserve our support ,im alone in this journey because we were both babies of the family mine all pasted but one brother his sib’s are here but much older out of state and call , So getting back to feelings i see couples out to dinner last night laughing swaying to the music enjoying life and when my husband got up to go to bathroom almost feel over and waiter helped me ,First time in public that happened He gets dizzy if he gets up to fast , I try to still have these moments cause i know the time will come i will not be able to take him out, but last night i felt so incredibly sad, jealous of our robbed time like you ,worked hard to enjoy retirement and now this , inside i bury it i feel angry at him [knowing he did not ask for this] but i can’t help it ] I just don’t know how or what to do with these feelings . The other guilty question is how many years will i give up my life ??? His family genes is they live to 92 to 95 mine everyone is gone by 70 to 78 so will i never get to enjoy a little life is that selfish , I know my husband hates being like this and i pray sometimes for god to take him before he knows nothing and laying in a bed for years that also makes me feel bad for thinking or praying for that , This is the first time i have spilled my guts i cant believe im even sharing im a strong person and i feel i can do this myself . i guess last night really got to me and made me miss who we were. and how i feel like a parent and where is my husband , Thanks for letting me spill . I’m overwhelmed with saddness today , Sue

      • Julie

        I’m at the beginning of this journey with my husband.He is 63 and I’m 57. He has Dementia.
        30 years together and one child.
        My heart is aching and I cant stop crying. I have felt lonely for a few years now not really putting all the pieces together.
        The denial is over and now I’m working on a new normal.Making plans to help us both.
        Waking up everyday trying to think of things to be grateful for and not sinking further into a depression.

        • Jenny

          Julie, you sound like I was in February 2020..
          It’s the fact he won’t talk about it, pretends there’s nothing wrong that stirs me up the most..I find getting out walking for 1 hour a day really beneficial. Jenny

          • terry

            This! My husband of 34 years is in denial big time. I’m 57 and he is 75. We had a great marriage and three kids. He is obsessed with his daily meds and always talks about cutting down on them (yes, his dr. has gone over what they’re all for and that he needs them but he forgets the conversation). Then we start over. He gets mad at me whenever I insist he follows his dr’s orders. He can’t remember what the dr. said but is sure I am making up stuff (why, I have no idea). He has thrown out or given away things that he says we no longer use (we do, he just can’t remember) and I can’t help but lose it. I have asked him continuously to check with me before giving stuff away and that just makes him angry because although he knows he is forgetful, he is sure he is fine and I’m being controlling. Living with him is like walking on eggshells, I never know what will trigger his anger. Of course, everything is my fault.

            In the last two years, he has had 2 back surgeries and prostrate cancer. I took time off work each time to nurse him back to health but he seems to forget about that. He has recently decided he wants a divorce (because of how I am constantly lying to him). Mind you, he has been retired for 10 years and is now completely financially dependent on me. He is no longer capable of taking care of finances or manage his medical appointments. He is able to drive, go to the grocery store, and do chores around the house but no longer socializes (he can only carry on a very basic conversation). He seems to think he’ll go live with his sister (who is in her 80’s) and everything will be great (It won’t).

            Soooo, I’m up for a divorce. Will I be free?

      • Linny

        Sue. I am like you in many ways.
        Watching your life ebb away for someone else you probably cannot stand now.
        Mine is like a big child, always touching me now, I love you, you’re an angel etc, etc. Thankyou kisses for lunch, dinner everyday. When you wipe your mouth afterwards and stick 2 fingers up behind their backs, that’s when you know its got to end. Recently, like you, I thought, he will still outlive me, 8 years younger. My family dies young, and his old. So unfair, but, from dreading being on my own because all friends and family has vanished. It’s now the only thing keeping me going and I am impatient for my own life. Never thought I would think that either.
        Sometimes, I talk to the universe about this and ‘they’ say back to me, you wouldn’t leave even if you could, you are a caring person. I would agree with ‘them and come back inside and get on with it. Its a job with no pay, no time off, a prison cell locked in with a boring lunatic who you have to feed etc. I’ve always been a good girl, god how I hate that saying, all my miserable life and I now want mine, just the end bit for me.
        I would leave now if I had the money, that’s what has changed. Without a backwards glance.
        If only. My best wishes to all of you. Linny in the ??

        • Mary

          I have the same feelings. My husband is 83 and I am 75. He has no formal diagnosis but what would the point be? I am a retired RN and I know there is no cure or treatment. Getting worse with memory and keeps wanting to kiss and hug me. Makes me panic and feel sick and guilty. I do not think I can do this for years .

      • Cheryl

        I think we are living the same nightmare! I am missing out on the fun life I thought we would have. I have nothing now, because of this now child like person who is my husband. I want to be able to laugh, got out to dinner, or just carry on a conversation. Instead I live in silence, watching as other people live happy lives. So sad I feel this way. So lonely.

    • Jinny

      Yes … ongoing ‘early onset’. 10 years- I truly empathise. Every day now I fail at being loving towards my husband. I cant accept he is who he has become. …

      • Nancy

        I’m sorry, Jinny. My 74-year-old husband was diagnosed with dementia in January this year. After several months of denial, he had to accept what we call his “brain problems.” I am in the same boat as another poster–I don’t like the new guy.

    • Janet Nash

      I’m so sorry for you and share your pain. My husband was diagnosed with Parkinson’s dementia 3 years ago. He is 62 & I’m 58. So hard

    • Janet Nash

      I’m so sorry for you and share your pain. My husband was diagnosed with Parkinson’s dementia 3 years ago. He is 62 & I’m 58. So hard

    • Kathy Gibson

      Reading your comment was a revelation. You have echoed exactly how I feel at the moment. I am 70, and my husband (63)has fairly recently been diagnosed with a mix of Alzheimer’s and Vascular Dementia. I am worried that I have feelings of resentment already. My husband was due to retire at 66, and then we would have both just enjoyed life together as retirees. He is likely to have to retire earlier than 66. At the moment it’s hard to see past the change already in his personality, I know it’s the disease that’s making him say hurtful things, but at the time I feel devastated that this man who I have known for 32 years can be so mean. Thanks for listening

    • Donna

      I’m 60 and my husband is 79 with FTD. I have been caring for him for 3 years and feel at the end of my rope. I retired at 55, and feel my life is over. This disease is sucking the life out of both of us. At this point, he would be better off, more stimulated at an extended assisted living facility but the guilt is stopping me from placing him.

    • Joyce Anderson

      My heart hears you. I am so sorry. I understand.

    • Lorraine Smylie

      That’s me too. I just retired because I had to to take care of him. I am only 68 years old, have been through cancer treatment and am now locked in my home taking care of my husband.
      I am angry, frustrated and overworked.
      I have been raising kids since I was 19 years old, we were caregivers to hubby’s parents and after his dad died I was caregiver to his mother for 12 years. His mother is no sooner gone than I am thrown into a caregiver role for my hubby. I am tired and worn out.
      I am at the point of packing a suitcase and walking away from everything.

    • ROBERt hay

      So no sex life?

    • Janmac

      Omg this sounds just like me! I’ve not loved my husband for years & now he has dementia I feel trapped!

    • Anna

      My husband had early onset, in early 50’s. He will be 60 this year. I also care for my mom (80), and my disabled daughter (25). It’s too much. I’m on call 24/7. Can’t relax much, or leave the house for long, ever.

    • Martha

      I’ve just found this site. Reading the comments… I’m petrified with fear of facing this for years with my husband!! I can’t imagine living through this for years!

    • Mona

      My husband is 66 also and I am 60. He has early onset diagnosed in 2016. We have teenage boys at home. I sometimes need the boys to basically babysit their Dad so I can run an errand alone. My heart breaks for all of us. ?

    • Debs

      thank you for making me not so lonely, in a very lonely world ❤️

  • Elisabeth Ketting

    Yes i Am so with all of you. I felt he let me down. What is love. Yes i care for him, but in a different way. He had a fall And broke his hip he is still in rehab . I can not handle him At home any longer. I visit him every day for THE last ten weeks. One day he is good THE next day i want to shake him. When he sees me he says ouch help me.i like to scream. I know they can not help it. Sometimes I walk out crying because he keep on saying you don’t care about me. But I do. It is so difficult. I get support from my friends and pastor. My kids have no idea how it is day in

  • Pauline Smith

    I found this really helpful to read. My husband us 81 years old, I am 66. I have cared for him for several years but had to put him in a nursing home 18 months ago. The feelings expressed are all I have felt and continue to feel. I felt I was a wicked uncaring person and this has given me a sence of perspective about the situation. I visit three times a week and he does not always know me now. I am married but don’t have my partner. I feel envy when I see couple’s walking the dog or having coffee. I miss the man I married.

    • Kathy

      I miss the man I married. He’s had Alzheimer disease since the spring of 2005. Yes, it’s lonely watching him sleep all day. I love the man I married almost 53 years ago and don’t like who I’m living with. I’m exhausted but thank God that I can care for him. What a mixed up person I’ve become!

  • Denise

    My husband has heart disease, severe lung disease with a whole host of other medical problems. The last 6 months he started with dementia problems. It is difficult answering the same questions over and over again. Fixing the tv he messes up constantly and a lot of other problems. My patience is stretched to the breaking point. Even getting him to eat is a struggle. He just lies in bed all day. I have no life.

    • Judy Clark

      Ditto. Wedo not have family support so it’s all u to me. I feel very lonely and wish this wasn’t my life. Care for him 24/7 with NO appreciation back. He is very self centered – does not understand or care how much I do for him. I want out! After 43yrs I have had enough.

      • Freda

        I feel he same as you do …have been married for 52 yrs…I am 70 ad he is 72…he has many health issues and dementia for over a year now..my son does not understand and when he visits gets upset with me when I get upset with my husband…he is also incontinent and I am constantly cleaning up accidents and washing clothes and bedding…Almost everyday husband is nasty to me…gets a angry also when I check on him to take mess 7and insulin shots…if I don’t check he forgets…I am to the point i cannot do this anymore…I don’t sleep well…cry alot and get pains in my chest…some days he is good and others unbearable..I feel sometimes I want to pack my bags and just leave

        • Cowgirl

          OMGoodness, you have just described my life. The verbal abuse may not be worth it. I have always been taught to demand respect, always. So, now, because he has a lack of oxygen feeding his brain, I am supposed to just smile and say, “yes dear, no dear, three bags full dear!!!” I am not sure how long my health, and well being, can tolerate this type of abusive treatment, day in, day out. It will become physical sooner rather than later, and as an abused wife in my previous marriage, I fear that day will be right around the corner. He comes closer and closer to me, to scream and threaten me, gets in my face, chest all puffed up. Am I not supposed to defend myself, my safety? What do all of you do when they become physically violent, but still too much of a slick talker to be recognized as a “patient/husband”?

          • carol ryan

            Wow Cowgirl! Just now seeing your post and this is exactly what I have been feeling! My husband is 81 and I am 76 he was diagnosed with Alzheimer’s in 2018 but has it for at least 10 or 11 years now. He is very angry now, he calls me so many hurtful names all the time now and like you I am so afraid he will start getting physical with me. I have noticed in this past year he has gotten worse, I know rationally that I can not try to tell him anything he will not listen anymore to anything I say, I know it is this awful disease talking but I still find myself trying to reason with him, not a day goes by now that I don’t have a crying spell. So afraid with all this stress that I am going to be the one to die first, then where will that leave my husband, no one else is going to live in this house with him for sure. At times I want to just leave and never come back home!

  • Rbert C. Whittaker

    I am 80 my wife who has Alzheimer’s is 76 and we have been married now for 55 years. She has had this illness now for about 28 months. We had long term health care which enabled me to place her in a senior care facility. She has become pretty much a shell of the person I once new and loved. I attended a support group for a while but many of them experienced more advanced issues and instead of being a help I found it depressing knowing I would soon face the issues they were. Long Term Health Care is expensive. About four thousand a year but considering the care that will be needed in a facility it will cost as much or more per month then the insurance per year. It is worth every dime if you come to need it. The love you once shared does change, it has for me. Some people will think it is terrible. First there is the anger, then sadness, being a lone not having the person that shared everything gone is like they died. There are no words that I can express to comfort you and none that will take away my pain either. Only those who experience this can fully understand. Good luck and best wishes BOB

  • Joy

    Thank you for sharing your feelings dealing with a loved ones dementia. It helps
    me feel much better about myself knowing I’m not the only one with negative
    feelings towards my spouse while dealing with such a terrible disease and a
    situation that seems to go on forever.

    • Nancy

      My husband of 43 years has been suffering from MCI for 5 years. At 68 He can’t work so I am now making the decisions for our future. Our marriage was wonderful in all the usual ways but now I battle with him as his caregiver and he desperately wants to have sex but cannot because of ED. I shut down sexually because of the daily struggles I rescue him from. I feel like his parent and that’s not a turn on. He seems to think that I am the cure but we try to no success. I am at the beginning of this horrible disease, am 65 this year, so I decided that we are cashing out, paying off all debt and building a Smaller home in the country. My friends think I am nuts but I am hoping the absence of stress due to debt will ease up the tension we feel daily. I will continue with my freelance career, driving into town a couple of days a week. I feel this will keep me connected with girlfriends and give me time away from my husband. I am afraid of the unknown – our future, but I will not be left without a roof over my head. I guess this is my survival mode, didn’t know I had the strength to do this But I must take care of myself. There are two new hospitals in the town we are moving to and, although a bit early, there are senior care facilities close by. Life is messy and complicated. Whoever said it was easy is wrong. It’s how you play the cards that are dealt to you. It’s how you choose to play the cards and sometimes, you need to have the balls in the marriage. My challenge? Not being disappointed and angry and I am working in that as I envision myself kayaking and snowshoeing in my new community.

  • Kris

    My husband has LewyBody Dementia. The doctors think he has had it for about 3 years and life expectancy is 5-8 years. He went from a score of 23/30 to 14/30 in a year. It’s so debilitating he thinks nothing is wrong but everything is wrong. He can’t dress himself he can’t eat without food going everywhere he says inappropriate things but thinks he is absolutely fine! He walks almost bent over dragging his feet and nearly always starts to fall. Yet refuses a walker or any assistance he argues with me all the time. I’m exhausted I don’t sleep there is nothing I can do. He punches and kicks at night yelling and grunting. It’s really scary.

    • Kathy

      Wow, I just came from a session with my therapist. I’ve been struggling with feelings of anger towards my husband. He “gave up” when he turned 70 and said – “I’m old” and stopped doing normal things. 3 years later he wouldn’t get out of bed, eat or admit that he had every right to stay in bed. I had to put him in a nursing home for rehab and he refused to try. They sent him home after I had to move out of our house into independent living and he crawled into bed again. He is back in a nursing home after I applied for Medicaid (after spending $20,000) and became his legal guardian. He thinks he’s fine and I’m just unwilling to take him home. I have a very hard time visiting and am upset for days. I’ve come close to having a stroke from very high blood pressure. He sleeps all day and spooks the nurses at night. He thinks it’s funny. He has done a 180 from his very buttoned down old self. I feel little compassion for him and it makes me feel guilty. Kathy

      • Mary Jo

        My husband (67)has been in a nursing home for 7 months with severe dementia. I know exactly how you feel. My husband acts the same way and it has gotten to the point that I have to make myself go visit him!

    • Leisa Flynn

      Hi Kris, My husband has that too. So many of the writers here echo exactly what I am going through. My husband thinks he is fine and the doctors do not help. They say, “You are doing great.” What they mean is that he is doing great for having this for 5 years. What he hears is that he is fine and that means any problems we have are caused by me or are my imagination.

    • Amy

      I empathize with you completely, and so appreciate your writing this. It has been more than a year since you posted this, but I am just reading it today and am so grateful. I am in a similar situation: My husband was diagnosed with Parsinsonian syndrome with dementia (in 2017), but actually he has every symptom of Lewy body dementia listed on the Mayo Clinic website. He began showing the first signs in 2014 – hallucinations (animals crawling out of walls), intense paranoia, difficulty moving, shuffling, inability to perform simple daily tasks – and though the hallucinations have subsided, many symptoms (such as his tremor, memory, and mood) have gotten worse. I am doing a very poor job of managing the progression of his disease – I have multiple sclerosis (relapsing/remitting) and it is “challenging,” to say the least, to manage both. … My husband’s confusion, anger, anxiety and paranoia feel unbearably suffocating at times – I lash out, as if fighting for oxygen, and of course this only excalates the situation. His sleep disorders – rapid eye movement (REM) sleep behavior disorder, where he physically acts out [ more like lashes out, kicking, punching, screaming blood-curdling screams] his dreams while asleep – are heartbreaking and terrifying. So far, medications have been only slightly helpful. It’s been terribly difficult for us to find any competent, empathic neurologist to properly diagnose, track and treat his illness, and help me learn how to manage this. So, I totally empathize with what you write, and so appreciate this forum for discussion. It is awful to feel alone with this stuff – all the conflicting emotions it brings up, the dearth of supportive medical information and care, and the lack of adequate guidance from neurologists for families of people with dementia.

  • Eileen

    I looked after my husband for 8 years before I had to give up as he had Frontal Temporal Dementia and became aggressive and violent towards me. It was heartbreaking at the time, but now I’m his wife again not his carer other people care for him. I am very lonely as I live on my own now, but I’m starting to go out and enjoy life again. I’m still only 67 and hope to meet someone special and carry on my life. This may shock some people, but my husband has gone, there’s just this man that looks like, I visit regularly and love him, but he doesn’t know me, or the children anymore.

  • Jan

    I know exactly how you feel. I don’t feel much love for my husband because this disease has taken the man I used to know away. We are both the same age.63. And I have been caring for him since his diagnosis in 2016. It has been the hardest thing I’ve ever had to do. It’s lonely and frustrating. Each month there is something else that I have to deal with. He is oblivious of his condition. My heart goes out to all carers. Be good to yourself too. Xx

  • Lori

    My husband has early onset dementia as well, and I have fallen out of love – don’t want to even hug him or kiss him anymore, although he wants it all the time, as well as more, if you know what I mean. Diagnosed in 2015 but showing signs since 2009 and it’s been difficult to say the least. Delusions, paranoia, hallucinations are rampant, but at least he doesn’t wander out of the house. He’s 63 now and I’m only 53. I feel like I can’t live because of him, caretaker burnout, lost too much weight, have stomach issues and if it continues I may die! This is not what my marriage vows were! Researching facilities now and figuring out how to get him in before I really lose it. I empathize and bless you all on your paths of life.

    • Helen

      I have a similar situation, diagnosed in 2015, but looking back, there have been signs since 2009 at least, though we are now 66 and 76. I moved my husband to memory care a year ago, in 2017; getting him up in the mornings and to bed in the evenings with the incontinence, explosive anger, etc., was too much. You are doing the right thing by looking for a facility. My thinking is that it’s bad enough that one life is snuffed out by Alzheimers, no sense in giving up your own as well. Memory care is really beneficial, as it provides activities, company and daily care, which gets increasingly difficult. My husband can’t walk any more and it takes two people to help him stand up. So sad. Once he is in a memory care facility, your interactions will be more positive and relaxed.

      As someone above said, it’s difficult to see other couples doing simple things together and it’s normal to feel a little jealous, deprived, to feel sorry for yourself. But we need to practice bouncing out of that. We need to build our lives around things we love, work on getting stronger, and try to enjoy every single day.

    • Chez

      Hi, I’m in a similar situation and I hate it… how are things now for you???

    • robert demers

      MARRAIGE VOWS ,to love honor and charish ,for richer or for poorer ,through sickness and in health,forever and ever,AHMEN

  • Maude

    My husband and I are both 68yrs, married for 47 yrs after loving each other since early teen,We were very close and excited when we both retired. Vascular dementia stepped in.
    My husband is functional , we do everything as normal, but he doesn’t see me as his wife esp tp love and have sex with , he thinks he is cheating on his wife. That sweet love has gone.
    He claimed that our house is his father bought it. He gets confused and. agited with me at time . Is afraid he takes his car or wonder at this timeI

    I missed our closeness and love as he seems cold . He said that he did not married to me and I stole his surname

    • Ann Drake

      I suggest that you legally change your name back to your maiden name (or whatever you feel good about). Take control of your finances and protect your assets while you still can.

      The man you married is gone and who/what remains is crazily dissolving into dust.

      Don’t further be a victim.

      I let it happen for way too long and nearly lost every penny of the money *I* had earned to my husbands brother.

  • Bev

    I am 53 my husband is 68. I have been caring for him for the past 8 years. I was close to divorcing him and then we got the Alzheimer’s diagnosis and I couldn’t bring myself to leave him at that point. Now 8 years later, I am caring for a man I am not in love with. I have pretty much supported us through out our marriage. I always thought that he was just lazy. I suspect he was already starting to have symptoms even then. I never had an affair during our marriage but believe me I have been very tempted!!!!

  • Mary

    I am truely not alone!

  • Deborah Demeo

    So my husband has early onset Alzheimer’s too..he was diagnosed in 2015..its been 3 years later and he’s declining fast..I do feel like I’m falling out of love with him..I feel sorry for him. But I’m not in love with him , I feel guilty..like the other posts..I’m unhappy and feel like I’m taking care of a child…no conversation, no one to lean on , etc.. lost 20 pounds. Now 116… Thought that was great but for what he hasent even noticed..I guess what I’m saying is that I am experiencing everything the previous posts are sayimg… I’m depressed, lonely, and lost…taking each day by day..dont know how much longer I can hang on :/

    • Patty

      Very similar situation. I feel lonely, like my life is on auto-pilot and I’m just bidding my time. No life at all, few friends but it’s not fair to them because he doesn’t communicate anymore. I feel sorry for him and I’m doing everything now. Yard, rentals, bills, all decisions are mine alone. He used to be mean to me and I think he was taking out on me his frustrations with himself. Boy life is never what you thought it was going to be. God bless everyone who has the disease and especially the caretaker. It’s a thankless job. All I can say is I guess God really loves him because he gave him to me to take care of. I pray my kids aren’t burdened with me someday.?

      • Lois

        It appears that I am not alone in my feeling of not wanting intimacy and not really loving the person I married 52 years ago. He was diagnosed with CMI one month after moving to a new location in 2014. We had had a new home built and after a tramatic moving experience he just seemed to be unable to do the things he was able to do like putting up fixtures etc. In 2015 after two major operations (hernia and back) he was diagnosed with Alzheimers. I found a drug trial 3 hrs away and there he had the nuclear and glucose pet scans which showed Alzheimers for sure. Now in 2019 he has trouble speaking, problems with balance, incontinence, dressing etc. He is very like a 3-5 yr old. I have taken over all aspects of our life. I am only lucky that he is not combative and so far does not wander. I have given up most of my activities. You are alone yet you are responsible for another person who does not participate in your life. It is very lonely. The hard part is not knowing how long this will go on. It is now 24/7. At times I think it would be better if I died and he could just go to living facility where he would have social activity. It is very quiet when you have no one who talks to you. I was told I can keep the house and car and a certain amount of our money after we have spent all of our life earnings, then medicade will start helping. We had tried to get long term health insurance about 10 years ago and after testing they refused to accept us. I now know probably why. I guess I am a lucky caregiver in that he is not combative or abusive so far. I sure don’t feel lucky though just sad and depressed.

  • E

    Hi, I don’t usually comment on things that I read but I really feel for you. My husband was diagnosed with Parkinson’s at 49 and Lewy Body Dementia at 51. He is now 58 and life is very tough. I keep him in a very strict routine but life is very “grounding dayish!” I know its not his fault that he is ill but at times I resent him. He always planned for the future from age 15 (we have been married for 40yrs) a very old head on young shoulders! I used to say “what about the now?” ,but he was so focused! Now I feel that I just been left but trapped by the fact that I’m still married. My sister died of Motor Neurone Disease,my youngest son suffers with Schizophrenia and Bipolar and has had treatment for cancer and my mum was in a dementia home for 4 years before she died last year. My husband made me promise i would always look after him but I’m sick of sickness! I feel so guilty because I don’t want to carry on looking after my husband anymore and just resent him?

    • Maggie

      I really feel for you. My husband has Alzheimer’s, my daughter has severe bipolar and my Dad has recently died having been looked after by me for the last 25 years. It’s too much for one little old lady to cope with.
      I can understand your situation and the amount of resentment you feel- me too!
      All I can suggest is that if you can, you relax the strict routine and when he’s asleep make a space for yourself in the house where you can retreat and read, write, phone a friend or relative and get some of it off your chest or out of your head for a bit. I know it’s not a life as you’d want it to be but it might help.

    • CAM

      I can take a snatch of all these comments and this is me. It is truly awful the life my husband and I have. He is 82 suffers from PD and. Lewy Body dementia. I feel unable to control my daily anger, I really do try, but it gets the better of me and I shout and rail at him for being SO uncooperative. He will not try at all, does nothing to help, seems amused when things go wrong and loves it if I make a mistake. He will not listen to what I say to try and help him. He never says sorry, or please and thank you. I should feel compassion for him with this terrible condition. It is just anger and resentment. I least I feel a little more normal after reading your comments. So thanks to all of you .

      • Darlene

        Oh Cam, and all the rest of you grieving, overwhelmed caregivers, my plight is the same as yours. My 67 year old husband has bvFTD, and his behaviors have turned him into a mix of a spoiled, obstinate child, a horny teenager and and a dirty old man:-( He literally is “dirty”, as he showers maybe twice a week, and I have to fight with him to brush his teeth. He no longer takes any interest in caring for our home and yard-just lies around ALL day, either napping or looking on his phone, or watching tv, and the worst, pleasuring himself several times a day. He’s delusional, though, and believes that he still does the chores he used to do. And thinks there’s really nothing wrong with him except some forgetfulness, and he sees nothing abnormal in his daily routine of doing absolutely nothing to help out or the obsessive sexual behavior. I feel such disgust now, towards this man I used to love and respect, and rely on.

        He mocks and mimics me all the time when I get upset with him, and like your husband, Cam, he laughs at me when I’m am the most overwrought. All I feel is anger and resentment towards him now, even though I know it’s the disease, but when he’s laughing at me, the intensity of my anger is frightening, and I feel overwhelming urges to punch him in the face or hit him on the head with the nearest heavy object. I, too, lash out and say horrible things to him, but nothing hurts him and he just laughs all the more, like a lunatic. I try to keep my anger in check, as I know it’s not helpful in dealing with him-just makes him more obstinate and me feel ill, but I can’t control it when nothing I say or do, has any affect on him-he’s like a strange, unfeeling robot.

        It’s horrible to be trapped in a marriage that is no longer a marriage, and I find myself frequently wishing either he or I would just die. Like many of you, my physical and mental health is deteriorating from caring for this man I no longer love, and the future looks so hopeless and grim. I grieve everyday for what we had before the monster known as bvFTD took over our lives, and cry that after 44 years of a good marriage, this is the way it ends?

        My heart goes out to all of you who understand and are suffering the same terrible misfortune of having dementia ruin your lives.

      • Ann

        Sounds just like my life. My husband has vascular dementia. He was diagnosed after a stroke a year ago, but I saw signs long before that.
        It’s so very hard dealing with all the emotions, I’m so glad I found this. It’s good to know I’m not the only one who feels resentful and angry.
        God bless of you.

        • Melanie

          I too have a husband with dementia. we found black mold in our house after his diagnosis. we have been treated for that then we found out my husband has Lyme disease….now treating for that. I have felt as many of you about how my relationship with my husband changed after only 15 years of marriage, today he does seem to be improving and i think he. was mis diagnosed. I am glad that i stuck it out and tried other alternative theories, but my faith was really what helped me hang in there. We never know why God allows these hardships but I do know it can either strengthen us or make us crumble. Both some days. God bless you all. Melanie

          Proverbs 3:5-6

          Tough times have a way of revealing our true nature. If two people were to face the same dilemma, one may grow closer to God and bear fruit while the other becomes anxious and doubts God’s faithfulness. How we respond to trials makes all the difference.

          Like it or not, hardship is part of life. Becoming a Christian doesn’t change that fact (John 16:33). What shifts is our understanding of God’s sovereignty—nothing touches our life unless He permits it. Consider David, for example: God allowed a murderous king to pursue him for years (1 Samuel 23:15; 1 Samuel 23:25), but David responded to adversity with faith and called God his stronghold and refuge (Psalm 59:16).

          If we let them, challenges can grow our faith, change our perspective, or deepen our compassion. But no matter what, the Lord is available to help us in our affliction (Psalm 46:1). Either we can turn toward Him for comfort, guidance, and support, or we can get angry and resentful that we’re not being rescued from our valley.

          When affliction strips away every crutch, one has only the Lord to depend upon. Though some people are destroyed by that kind of situation, others are built into undaunted believers.

        • Mal

          Ann. My situation with my partner is exactly the same as yours. He had a stroke… A small stroke… in November 2019. His short.. term memory was quite bad. It was confirmed he has vascular dementia in January of this year after having the 30 question test last August at a memory clinic. He also has a lot of health issues. But from the beginning of 2019 and even before that, we as a family knew something was wrong. He’d ‘lose’ possessions and accuse his sons of taking them. He would seriously hoard and used to see people outside who weren’t there. He then went through a stage of sleeping for most of the day but doesn’t do it now. He hasn’t had a shower for a few months and I don’t think he cleans his teeth. Social services and Admiral Nurses are now going to be a part of our lives. I work full time but have been shielding. I’m due back at work in April. I will probably have to stop working now as I can’t leave him on his own for longer than half an hour….jusr in case. He won’t come out for a walk and never goes out. He will go with me to an appointment but nowhere else I’m so scared of the next ‘stage’ and the ones after that. Yes our emotions are up and down daily as are our partners. It’s such a horrible disease isn’t it Ann?

    • robert demers

      REALLY your husband made you promise to give up any semblance of life so he could be taken care of by someone he can no longer recognise.this is absolutely the most selfish thing i have ever heard,Did he claim that he actually loved you,I think not

  • Evey

    My husband was diagnosed the day before my65th birthday and only because we went private. In the UK it takes many years to agree to prescribe medication. All of my friends and family ask me ???? How is Keith !!!! Not one person asks me how I am coping X he could have cancer so it is better prognosis really????? I have cried tonight for the 1st time reality hit me x

  • Cheryl

    My husband has Lewy Body Dementia, with Parkinsonism. I moved him into a memory care facility in Nov. He took care of his deceased wife for 5 years, she had Alzheimer’s and spent the last 13 months on her life in a foster care home. My husband knew what he was facing, and he knew what I was facing. I resent my husband for not committing suicide when he had the mental ability to do so. I’ve talked with two friends who are caring for their husbands with dementia, and all three of us arrived at the same decision; if we are diagnosed with dementia, we will kill ourselves. We do not want to put anyone we love through this hell, nor do we want to have all our hard earned money spent to keep our bodies alive. I do not understand why people diagnosed with dementia want to continue living and condemn their loved ones to care for them, watch them deteriorate and face financial ruin. How can that be love? I still love my husband but I resent him for putting me through this. He’s 72 and I’m 68 and we’ve only been married 5 years.

    • Sandy

      I completely agree with you Cheryl…..there’s no way I want to have my family take care of me if Im diagnosed with dementia. My husband was diagnosed with vascular dementia about 6 months ago and it seems since his diagnosis he’s decided that he can’t do anything anymore. He’s always been a very lazy man so I don’t know if half the time it’s the dementia or him just being lazy for not doing anything. All he does each and everyday is sit in front of the tv not wanting to do anything else at all. I’ve gotten to the point that instead of arguing with him I just go about my life as much as I can, it’s just not worth fighting with him any more. I do resent having to take care of him when he doesn’t want to try to help himself and know that if the tables were turned and it was me that had dementia there’s no way he would care for me. My husband is also 72 and I’m 65 and I’m no way ready to throw in the towel and give up on life even though he has.

      • Jinny

        Hello Sandy.. my husband is lazy depressed or both. I periodically hate /really hate him him because he wony cook. Lazy yes, so forgetful but loves his little life- Indian take away, shops tv & reluctantly some housechores. Too much to tell. Macular degeneration central vision gone. I cry, shout and wish I were dead.

      • Pat

        My husband was diagnosed with AD in Febtuary after years of getting the run a round from numerous neurologists…now that we have a diagnosis, family members are finally believing what I have been saying for years…”that something is wrong”. I am already sick of him receiving everyone’s pity. I am bitter and find him completely selfish that he expects me to take care of him and put my own life on hold while I do that. Why is his life more important? He says he feels badly that I have to take care of him but his words are hollow and mean nothing because if he really felt that then he wouldn’t allow it. I have taken care of him for years now as he hasn’t been a true partner, more like a little boy, for more years than I care to think about. I resent it and feel like I am in prison.

        • Pat

          I just told my husband I resent having to take care of him. His response was that he’s going to have to find someone else to take care of him then! Obviously, he’s perfectly fine with “being taken care of”….so pathetic…wants to live in a carefree bubble, where he’s not responsible for anything. Can no longer stay at his job because not only are his colleagues noticing his difficulties but his clients are too…was he responsible to completely necessary paperwork? Absolutely not, he’s not responsible for anything!
          Has anyone else noticed their Alzheimer’s spouse humming? My guy hums stupid tunes constantly….it’s like nails on the chalkboard!

      • Annette

        Oh, how I relate to your story! My husband is in early stages of cognitive decline (heart attack and sudden cardiac arrest survivor, complete with a coma and hypoxic brain injury). I nursed him back to highly functional for 3 hellish months of Cardiac ICU, multiple surgeries, hospitalization and nursing home. Yet he’s telling me now it was nothing and I’m making a big deal out of it, despite his cardiac surgeon telling him that he wouldn’t be here if not for me.

        It’s mostly personality changes and short-term memory deficit for now. Similar to yours, he’s planted in front of TV or glued to his smart phone all day. Tells his friends stories about how he’s insanely busy with all the chores around the house, yet the only thing he actually does is throw his clothes in the washer and forget about them right away. He has no interest in family life whatsoever, apart from 1-2 small talk phrases with our teen son per day.

        As far as our marital relationship goes, he has gone through multiple changes of attitude, from irritable to aggressive to clingy to sexually obsessed to completely emotionally detached to absolute lack of any intimacy or acknowledgement of being in a relationship. Plus everything in between. It’s a roller coaster that used to wear me down psychologically.

        At this point, there is no interaction between us aside from discussions of dinner menu and weather conditions. I actually consider myself a nurse and him a patient of mine. It’s just work to me now. I have also come to a realization I’m essentially a single mother. This new perception has done wonders for my emotional state! I’m now content to deal with parenting/household/everyday life demands completely on my own because I officially don’t expect anything from him. With this attitude, I feel less resentful towards my husband, because I wouldn’t resent a patient Im working with for doing nothing or making a mess or forgetting everything. I have a younger child and a long life ahead of me, so I have to do everything possible to preserve my own health and sanity.

        My main concern right now is that he is still legally able to make financial decisions and I know for a fact he’s taken steps to try and cheat me out of our marital money. Mostly in favor of his estranged daughter from his first marriage. I honestly don’t even care anymore, because I know my son is going to be provided for, and I will manage on my own thanks to my own savings and skills. I refuse to feel defeated and depressed. He will not take my life away from me.

    • robert demers

      I so agree with you ,if I was too much of a coward to end it while I was still cohearant,the fact that I left someone I loved in the horrifying position of caring for a vegetable is so sickening putrid and repulsive that I should face eternal damnation.I am sorry but I just cant fatham a punishment horrible enough to justify this hideous crime

  • Helen

    My husband has Lewy Body Dementia with Parkinsonism. His adult stepchildten were never around but now want him to divorce me so they can take over his life insurance policy he has for me. Can he actually get a divorce?

  • Dr. Snyder

    My husband is 46, we are going to Mayo Clinic on January 28th for more testing. We fear he has early onset Alzheimers. He found this blog as he was trying to find honest information so he could find a way to help me deal with his memory problems. He was devastated and felt defeated after reading post after post describing the victims with the disease and those victims that care for their loved one and grow to despise them. I do not know what our future holds. But I would rather have a rare glimmer of the man I married then bury him because he took his own life to spare me from suffering. Your words make me more determined than ever to prepare for the worst. There is no amount of money or stuff that will replace in my heart the love I have for my husband. If I can diaper and clean and bathe a child for years as they grow, I can even more so care for my husband. I have seen mothers with special needs children who care for them year after year after year without complaint. These women and men are my heroes. I am not looking forward to the day my husband forgets who I am, but I will never forget who he is. May each of you find the strength that you need to sustain you.

    • Phyllis

      I also agree with you. I find I love my husband even more than before the vasular dementia progressed after his last stroke and then got Covid. That made it progress even faster. I’m not saying I’m an angel. I get angry and frustrated too, when he gets up and down every other minute checking the front door, side door and garage door constantly. He has delusions of people coming over and we have to find room for them. No one ever comes over. He also doesn’t think I’m his wife at times and asks when she coming back. He has incontinence and wears pull ups but won’t tell me if their wet so I don’t fight with him because he gets angry so I just let it go and wait till he changes them, urinates all over the floor and toilet seat all the time. I don’t say anything. I just clean it up. It reallly doesn’t take that much time. Confronting him makes things worse so I pretty much go along with him when he wants me to check the basement because someone is in the house. I walk from room to room with him and tell him we scared them away. He seems satisfied with that and goes back to bed. He has sundowners too. He isn’t abusive so I can handle things most of the time. He gets angry at himself when he can’t do things he knows he did before. When he pulled his hand back like he was going to hit me, he apologized and said he wasn’t angry at me but at himself when he can’t put his belt on or button his shirt. I try to put myself in his position and know it’s not his rational decision to be like he is. You never know what life is going to hand out but my faith is strong and without God to talk with and know He has promised all of us He is always with us, I know I’ll get thru this. God bless all of you. This is just a speck in the thought of eternity. I offer up to God my troubles and know I receive grace from Him to get thru the next hurdle.

  • Cindy

    My husband suffered a stroke in March of 2018 and everything went downhill from there. He now has vascular dementia. He never returned home after the stroke – he went from the hospital to rehab to a nursing home and finally to another nursing home in a dementia unit because he was wandering.
    Looking back, I can see that there was dementia already in place before the stroke. His personality had changed and he was unable to hold a decent conversation with me or our friends.
    I was visiting daily at the nursing home, but have cut back to 3-4 times per week. He has no sense of time. He says he’s happy to see me since it’s been weeks, when in reality I was there the day before.
    My husband is not the man I fell in love with almost 40 years ago. He is my husband in name only. I’m now left alone to make all the decisions – about his health care, about the home, about family issues, etc. I felt anger toward him for this; I still feel pity for him the way he is now, and sometimes I feel nothing at all. My husband is alive in the nursing home, but my husband is also dead for all practical and personal purposes. When I visit, I don’t see my husband anymore. He’s just a man that I visit out of a feeling of obligation and of course “what would the neighbors think?”. I believe that what we are feeling is grief and we are going though all the phases of grief as if our loved ones had in actuality died. I’ve decided to sell our home and downsize. I’m going to start a fresh new life for myself. Is that selfish? I don’t think so. There is nothing more I can do for him. I see to it that he has excellent care and I will continue to visit, but maybe not as often.
    I wish you all peace in your lives and remember – you still have lives to live!

  • Linda Walthers

    Reading your comments inspired me.
    My 74 y o husband is in a specialty care dementia facility. He kept ‘taking off’. We had the Sherrif’s Dept. out looking for him 2-3 times a week; sometimes twice in one day! My situation has a little bit of all of you in it.
    Things to ponder:
    Most of us are 50 + ys. old. My father used to say ‘With all the things that can happen to us, it’s a wonder that anyone ever dies of old age’. Celebrate the fact that you made it this far. There must have been some good times in your past.
    Let’s count our blessings and stop being victims. Find something to be thankful for every day. A blind man cannot experience a sunset. Some parents ‘lose’ their chidren from accident or illness.
    Some folks are ‘single’ and must do ‘all those chores’ for and by themselves. I could go on and on….
    Think of how ‘fit’ you are from running up and down stairs all day and never sitting down. You’ll sleep better from being exhausted!
    Don’t depend on anyone to make you happy. Make yourself happy. Better yet, make someone else happy!
    Go find the neighbor’s dog and let him lick your face. ( yeah, I know, ‘ick’, but funny and the dog will be soooo happy.
    Contact your local Agency on Aging to get respite help. Call the Alzheimer 24/7 help line. Keep searching.
    My heart aches for you. My heart aches for me…, but what hardship are we willing to trade with someone else?
    God is always with you. Seek Him first in everything you think and do. Ask for His help. Together, you are stronger.
    Know that the rest of us are on your team, since we share a common bond.
    Hugs to you from me. ❤️

    • Carly Babcock

      Linda, your letter was very moving and very filled with good information and ideas. In one generation it seems like the whole world has changed. I’m trying to help my daughter who’s expecting her second baby and I’m taking care of my husband who doesn’t recognize who I am A lot of the time. My parents are 83 years old and I depend on them to drive me and my husband to doctors appointments. He has cancer and dementia. I am trying so hard. I have suffered with major depression for 25 years and then I was diagnosed with fibromyalgia 6 years ago. I live in constant pain. And there’s no one to help or even talk to because I love the Lord most of all. My family told me to put him in a home and look for someone new. For one thing, as soon as he leaves our house I will be homeless. But they never have an answer to that except I can’t live with them. I have changed diapers while crying because the pain in my body was so severe. And he has no idea. I was taught to treat another person as you would wish to be treated. When I was in the hospital for 5 days a couple years ago no one even came to see me. I feel like I’m walking a thin line of Sorrow and fear. I know God did not give us a spirit of fear. There’s no Joy here and because he doesn’t know me there’s no love and friendship. Thank you for listening. Please write me back if you have the time. With all my heart, Carly

  • Gary

    Wow, all of these writings are so helpful in not feeling alone. My wife was diagnosed 6 years ago with Mile Cognitive Impairment and has just recently been diagnosed for Posterior Cortical Atrophy. Basically, it’s Alzheimer’s evil twin. During the pass year, there has been a noticeable decline. She now needs help getting dressed and showering. Ok, that’s not too bad but I know what’s coming. I’ve read enough on the progression. I know that 5 years from now, my life is going to be completely different. We’ve been married over 40 years and I still love my wife but I also see how she is changing in her personality. To be honest, I’m scared. This is not how our retirement was to be. We have lost friends and family who feel uncomfortable spending time with us or my wife. I need a break sometimes. Our girls help out as much as they can but I sometimes feel like a prisoner in my own home. I’m only 62 years old and should still be enjoying life but this is the promise I made in the presence of God (in sickness and health). Our girls tell me to find new friends. Not so easy when I can’t leave her alone. And if its another couple, also not so easy to find a couple who is understanding to my wife’s condition. Ok, enough for now. Felt good to just say how lonely and isolated it can be to be a caregiver.

    • Shershee

      Hello, Gary. Facebook has a very active PCA support group if you are interested. It is a closed group but you can ask to join. BTW, my husband, 57 yo, has PCA and was diagnosed 3 years ago.

  • Carol

    I am so happy to find this page. I keep reading advice about dealing with your “loved one” and I wondered if I was the only monster who didn’t love the dementia patient at all. I had a miserable marriage that I stayed in for my children who loved their father. Now at 75, I care for a man, my husband of 55 years, in his nineties who I dislike. He is my constant shadow who complains and criticizes and never ever has a positive comment. At least I know I am not the only one.

    • Shirley Everhart

      I too stayed married to a man that I fell out of love with, many many years ago. I am 83 and he is 85 My faith is what keeps me going. I knew that we HAVE to stay as calm as we can .and doing other things to keep our sanity. We have three children and they help me. No-one has the answers to this. He has had it for about 16 years. That is a long time to have to live with this. I have health problems too. We have been married for 66 years now. He has started to be this 4,5 years old boy. He talks as a grown and then the child. What I found out was that, I love that little boy, always wanting to know, what is that?

  • Tracey

    Reading your posts has made me feel I am not the only one!! My husband had a work accident almost 5 years ago and it has brought on dementia. He is almost 71 and I am 53 and we have been married 16 years. He is always telling me he loves me and wants a cuddle, but I am so exhausted from working 7 days a week to pay the bills and still having to look after our 11 year old daughter I am beyond exhausted!!! It has really affected my health and have lost my friends. I feel so alone.

  • June

    It is a relief to find out that growing to “hate” your spouse is not some terrible stigma but actually a very common thing. I find that the person I spent the greater part of my living with has become someone I don’t want to be around. I know inside he is the same person, but the outward manifestation make it hard to “see ” that person anymore. The idea of thinking of the person as a dog or cat makes it easier to handle the day to day frustrations and expectations. They still need love and care even though they may not want or appreciate it.

    • Deborah G Savage

      I’ve refused to go to a support group. I imagine them talking about how much they love their spouses. I don’t feel the same. Although I was madly in love with him, I am no longer. I don’t hate him.
      For no clear reason, I find that I’m angry (mad) alot. Well, maybe it’s the fact that I’m retired and spending my retirement confined to my home, most of the time.
      He has no friends. Although there are people who I believe genuinely care about him, he doesn’t care much for them, so he says. He has four children, only one comes to visit.
      He was psychologist, so he thinks he knows all the tricks of the trade and has refused to accept the diagnoses (I understand that). He has vascular dementia. He does not always remember how to get into and out of the car or how to fasten his seatbelt or he’ll try to get out of the car before I’ve stopped. I’ve hired home care aides. They come for 6 hours, 3 days a week to help him with bathing, washing his clothing and to do light chores, those things that he use to do, like take out the trash and clean his bathroom, change the sheets on his bed. They do things to keep him engaged. He remembers some things very well and other things are some made up version of memories and there are some things he doesn’t remember at all (He purchase $50,000 worth of gold from, then sold it for $6,000. He bought that gold using a credit card. He does not remember that or so he says). He thinks he is well, but he’s not. He doesn’t want to bathe, he eats all day, swallows food without chewing, and watches TV all day. I’m not sure why, but he looks under my bed and in my closet, often. He picks up the phone and listens in to my conversations. My biggest challenges are having a conversations with him and knowing his mental state, at the time. I’m never know if what I’m saying is what he’s hearing. We’ll be talking and he’ll get this look. I’ll ask, what did I said and he say something that is not at all what I’ve said. The other day, he talked about our baby. He was still born. He was not talking about our baby. We have no children, together.
      The neurologist told me he would get stronger, but he would not get better. That he needs to be supervised 24 a day. At the time, I wasn’t sure what she meant. I am now. My job is to take care of him. I TRY TO KEEP HIM SAFE. I don’t always know what I have to do. I don’t always like him.
      You know what? I think he’ll out live me.

  • TimV

    I thought I knew everything.
    I was a corpsman in the navy.
    I was a nurse for 27 years.
    Top of the pyramid for 8 years.
    Sure is a fast ride to the base.
    Caregiver of my wife 100%
    for 12 years now. Her family is
    22 minutes away so to far to
    come visit. I’ve stopped being angry.

    If your looking for understanding,
    Try the wheel of emotions in
    Elizabeth Kubler Ross
    On death and dying.

    This is a complete Ambiguous Loss.
    I do the best I can , for me I find
    comfort in my style of religion.

    I am saddened her family will never
    Have the peace I have.

    Do your best ,smile and cry.
    Very few people ever signed up for this trip ,- willingly.

  • Nadine

    It really is a relief to hear your fellow caregivers expressing the same feelings I am having. We’ve been married nearly 60 years and he had been a wonderful husband, father, and best friend until about 5 years ago when his whole personality changed. He refused to allow testing and our Doctor then said that it was obviously Alzheimers w/Dementia but that was as close as we could come to an accurate diagnosis. Some days are still good but most are a constant tug-of-war. Last Christmas he threw our electric knife at me – because he couldn’t get it back into the box we keep it in. Most of the time he isn’t like that, And when he gets mad, if you just wait a little while he forgets he’s mad at all. I feel as tho I am just hanging on and oh how I wish I had him back like he used to be. God Bless all you care givers. Please pray for God to give me the courage to carry this through to the end, and I’ll do the same for you.

  • Kathy Miller

    I was a caregiver for 35 years for Alzheimer’s and dementia. Then my husband was told he has C.O.P.D. and dementia. I had to stop my job and stay home with him. I have not a lot of problems taking care of him with all my skills, but am very lonely. He’s always been my best friend and lover.Now I have neither. I can’t get out much.The one thing you should remember even he doesn’t know you he feels comfortable when your around that something know one can give him but you. Hang in there as long as you can ,but some times you have to let go.

  • Louise

    I’m 57, my husband is 66 and we’ve been married six years. I waited a lifetime for someone who understood me, “saw” me, and supported me in my life goals and purpose. We adored one another. About 4 years ago, I started to see changes and first called the doctor, but he was still working so nothing happened.
    We just had our sixth anniversary this weekend and all of a sudden I realized that he had almost all 1o signs. I’ve taken care of both my parents and my grandparents to their deaths, and both my parents had brain tumors. I’ve moved across the country several times to tend to my elders during their end stages, and I have no family of origin left. My son is on the autism spectrum and I have a major disability myself that’s genetic, progressive, and limits my activities and abilities already.
    I MISS my husband, he’s already a shadow of his former personality. Everything has already fallen into my lap – financial planning, organizing our lives, making meals, and it just kind of happened.
    My husband is currently sweet and loving and will do housework if I make it easier for him. He loves seeing me naked but he’s like a 14 year old boy in his approach nowadays, which makes sex with him weird. I’m not connecting with the person inside anymore, and he can’t see me. He also doesn’t understand why I’m sad about “losing him” when he’s right there in front of me.
    Because of my own disability I know that I won’t be able to take care of him at home once that middle stage establishes itself. I guess it depends on whether he wanders or gets agitated, so time will tell. But his symptoms are progressing fast, every 3 months he becomes noticeably less capable than before.
    Thank you all for your honesty. I feel more prepared for what I have to face and that my intuition (after all those years of caregiving for my elders) about what is going on with my husband is right on.
    I’m so grateful for the few good years we did have and the ten before he finally convinced me to marry him (it took 3 tries as all my other marriages failed).
    Realizing that my whole future will be different than I expected, that I won’t have a partner and am alone again is a huge grief. I love the man in the next room, this shadow of my dear heart, but he is not the man I married. I will care for him as best I can, as I would want him to care for me.
    It seems 100% normal to fall out of love with someone who isn’t there anymore. Your brain is smelling your lover and telling you they are there, but repeated experiences of not being loved and cared for by your partner tells your brain not to respond with those feelings of love. I mean, that’s normal. It’d be pretty screwy to have a system where the default reinforced staying with people treating you badly. It’s normal and healthy to want intimacy – emotional, physical, and sexual. People do better when they have that in their lives. Life is complex. Living is hard. Be gentle and compassionate towards your selves, people. You are doing your best and that’s often enough.

  • Joyce

    My husband has vascular dementia after having embolization for an AVM in 2008. I have NO husband, no sex, no touching, he’s very selfish, quick to yell at me. I can’t take it anymore & don’t know what to do. We will be married 50 years in September. I am so hungry for affection.
    He was always quick to yell & get mad, but it’s magnified since his AVM. I don’t know who to see or talk to.
    I want to get up & leave.

  • Susan clancy

    I’m so glad to find it’s not just me. I married my husband only 9 years ago, after dating for 9 years. I remember being so happy that I found him, and now I’m alone with this stranger who knows me still, but just to do his bidding. I miss the man I married and I will have to keep going as long as I can.

  • Dan Bland

    I know we all feel the pain. I have chosen to be my wife’s sweetheart and leave most of the caregiving to others. We are fortunate to have access to a good memory care facility and I can visit my wife daily I am still a good handholder and foot rub expert and can help with the other things when needed. I have my own health issues but she’s the top priority.We visit in different ways now,and she doesn’t always know who we are,but I do,and after 55 years there are too many wonderful memories to let me get overwhelmed.I cry all the time .I laugh too.

  • Rita

    My husband was diagnosed 5 years ago at the Mayo Clinic with Posterior Cortical Atrophy – a rare form of Alzheimers. He had symptom for at least 4 years prior to clinical diagnosis. Today he is 62 and I am 57. I am reaching the point where I am considering memory care and day to day life is becoming too difficult and so very stressful. With the help of my husbands sister we are going to start the conversation about the future and what that might look like. I love my husband but am no longer in love with him. Its so hard to be care giver and lover. Impossible really. Makes me feel better I am not alone. My faith, support from family an friends has kept me going. I want to start the transitioning to memory care hoping we can start with certain days and then move him when the time is right. Its all so hard. So much guilt for me. I have tried to be the best wife. This is horrible disease for everyone involved.

    Any tips on how to have an effective conversation? Am so worried that he will just want to kill himself.

  • Stephanie Jenkins

    My good husband died June 14, 2018, Alzheimer’s and vascular dementia. He suffered a lot from a stroke on January 1st until he died June 14. We had an epic love story. I wanted to take care of him until the day he died. Stroke caused him to be difficult and he didn’t sleep. He moved counterclockwise on some tumbling mats because of agitation and restlessness. for several weeks. Very difficult to watch.

    • ruthlockley

      Ruth Lockley
      My husband is 86 and has Alzheimers which began in 2013 or even before.
      It has developed very gradually but has accelerated since being in care in
      2018. I can relate to so much of the experiences mentioned by others but I
      am fortunate as he has retained his sweet nature even though he is much
      more withdrawn and quiet with minimal ability to converse now. He just
      “lights up” when I appear. A very contented man all our married life and
      has always been a lovely, happy and very open and outgoing person.

      With all of the difficulties I am just grateful that now is the
      time to cherish him and remember how wonderful it all was. It can be
      wonderful now too in a different way as my days are focused and giving
      him some joy and pleasure in any way I can. i.e. little outings, a movie
      date in his facility room. Sitting with him while he sleeps. Holding his
      hand and particularly sharing photos of our life together. We still love
      going to church together which has been an integral part of our marriage.

      Yes, it is hard but it is also a very beautiful time. “To love and to cherish”.

  • Paul

    My wife is 56, and diagnosed with MS 6 years ago, with an early onset Alzheimer’s diagnosis 3 years ago. She was the best part of my life, and I thanked God every day for her.
    The other day a song came on the radio that we danced to at our wedding 33 years ago. It meant nothing to her. I’ve given up thinking she remembers anything of our life. I feel like I’m dragging around my wife’s corpse. I find joy an impossible emotion now. My favorite part of the year is winter and favorite part of the day is night. Lifelong friends have abandoned her, but I understand. Who wants to spend time with a breathing corpse. If loneliness kills, I suppose I’m not going to have to deal with this much longer. It helped to read that my feelings aren’t unique, or unexpected.

    • Kadi

      Your story breaks my heart. I too, am beginning to experience this un-discussed situation of losing your beloved spouse while they’re still living and breathing.
      Not sure of what I’m going to do, as I see that all of us in this situation are in the same boat now.
      I appreciate the honesty of the contributors to this site, had a feeling that I was alone in this journey. I really miss the man I expected to live with forever… nothing prepares you for this loss.

  • Karen

    I can relate to so many of your stories. My husband and I have been together for 20 years. We had both been through divorces and our children from other marraiges were all grown when we met. Our grown kids always got along, not only with their step simblings, but also with both of us. He was very sweet and attentive, and I thought I’d finally found the love of my life. There were things about him that I didn’t really like, but like everyone who falls in love, I chose not to pay much attention to those things, as his good points far outweighed his bad points. Eleven years ago, in 2008 when everything fell apart, he lost his job. He was a few months from retirement age, so he just retired. He ended up in the hospital with very high sugar levels shortly after loosing his job and found out he was a type 2 diabetic. Through medication and diet, it was controlled perfectly for years. However, he seemed to feel his health was now my responsibility. This was something we started arguing about frequently. A year later he had a mild heart attack and had 2 stents put in. He was given a clean bill of health and told to go live his life, to do all the things he’d done before the heart attack. But he just never did. He started living like he was a porcelain doll and unable to do anything. As he did less and less, I had to take on more and more. I was working full time and starting to feel a lot of resentment for this man who did nothing while I felt overworked on a daily basis. My parents both had dementia and it was a heartbreaking time watching what the disease did to their lives. On top of having to take care of pretty much everything having to do with our lives, I was still working full time (much of it to pay off his hospital/doctor bills) and spending as much time as possible with my parents, who lived 4 hours away from me. I did not think life could possibly be more stressful. My parents died 10 days apart from one another which was more heartbreaking that I could ever have imagined. My husband, who at this point, did very little to help keep our household and life running, suddenly stopped doing anything at all. It felt like he decided I no longer had to care for my parents, so I could devote all my attention on him. It’s like I never got to grieve my parents before I suddenly had this entitled toddler man expecting me to take are of his every need. He even started walking like a toddler, taking these itty bitty steps while holding his hands out to the side, and moving as slow as possible. The last 3 years have been hell, and I do not feel love for this man anymore. I feel resentment and anger towards him. I finally had to quit my job, that I loved, because I simply could not handle it all anymore. Now I’m stuck in a home with a man 24/7 who doesn’t want to help with anything. Last January he ended up in the hospital again, this time with keto acidosis, brought on by his refusal to take his medications or eat the right foods. I was sorting his medication into those 7 day medication containers, would ask if he took it, he would lie and say yes, and eventually I’d find his box and realize he wasn’t taking his medication at all. It’s like he wants to be ill so I’m forced to take care of him. While hospitialized, he was diagnosed with beginning dementia. I was told that the old saying, if you don’t use it, you’ll loose it seems to be what has happened here. He’s just refused to use his body of his mind for years, has not participated in life, and now, he’s just loosing the ability to do so. He used to be a very sweet natured man, but is now very ornery, nasty and manipulative. He has never taken care of me when I was sick, etc., but rather, would always become much sicker than me, forcing me to take care of him. A few weeks ago, I ended up with a blood clot in my leg and 2 in my lungs. I was in the hopital for 4 days, then sent home and told to stay off my leg. Since being home, he has done nothing for me. He is actually making recovery much, much harder. All this after I’ve had to nurse this man back to health more times than I can count. I’m now facing some other major health issues, but know I need to put off medical treatment until I can get this situation under control. I will be looking into a nursing home as soon as I’m able to get up and about. He went through physical therapy after his hospital stay and was told there is no physical reason for him taking these toddler steps, that he needs to make himself walk normally, and told with exercise and proper diet, he can regain his strength. But he will not push himself, he will not do anything for himself, he won’t even take his insulin shots. When I was in the hospital, he brought his insulin up there for me to give it to him. The man simply has no interest in doing a thing for himself. All I can look forward to at this moment is the hope that I can get him into a nursing home and start living my life again. All those bad points I chose to ignore about my husband 20 years ago have now become his prominent personality traits, and all the things I loved about him are completely gone. It’s like living with a stranger I would never have chosen as a partner in my life. I know I’ve written a very long comment and no one is probably going to read the whole thing. But I feel better getting this off my chest, and I realize now I’m not alone in the feelings I have towards this man. I hope you all find solutions before this completely does you in! As one of the posters said, the dementia already took someones life/personality, we shouldn’t let it take our lives, too… I just cannot fathom living the rest of my life like this. I’ve just never been a person who accepted the worse about life as my fate, I’ve always worked to make things better. For years and years I tried to find “solutions” for him, find things to make him feel better, tried to motivate him, tried and tried and tried. As the decade of him not doing anything approached, it suddenly hit me. HE does not want to be better. I cannot make him want to be better. I have given up on him. I just want to feel like life is worth living again.

    • Suzan Teeters

      Oh Karen, I can so identify with you, living with a very lazy husband who does not try one bit to get better and stronger. My husband and I have been married 8 1/2 years. I’m blessed that for the past 17 months, he’s lived 75 minutes away in a Veterans’ Nursing Home. Because he was too lazy to meet his own medical needs, his 4 adult children put him there while I was recuperating from a shattered shoulder from a fall while outside winterizing our home. On our wedding night I found out he could not have intercourse, so we’ve had a totally sexless marriage. His PTSD pushed him away from even emotional intimacy. Over the first three years of our marriage, while he watched TV and slept all day, with me taking care of everything inside and outside, continually being rejected and put down by him, all my love turned to anger and resentment. Even when I broke my knee and hobbled around for two years because I could not afford surgery, he never offered to help. When I had a heart attack, the same thing as with the knee. I’ve done everything for him. He would not do anything for me. Now that he’s an invalid in a Home, at least I can live my life and somewhat catch my breath. He has a village caring for him daily. I used to visit him 3 times a week, but now it’s around 2 times. I am repulsed when he asks for a kiss, and think I’ll just begin blowing him a kiss instead to prevent me vomiting. He thinks our marriage is good, only because he lives in his own fantasy world. What I now deal with is deep anger, resentment, and lonliness, not being lonely for him but lonely for what never was….. part of the anger is towards myself for falling for this guy who came on so charming while we dated, then deastically changing once he said “I do”. (He shows narcissistic tendencies). I may need to seek counseling to rise above all my negative feelings, but I am so very thankful I don’t have to change his diapers, shower and dress him, do up to 5 loads of laundry each day as he urinates over his chair, the rug, his bedding, sort and administer his daily 24 pills and 4 insulin shots, do the cleaning, shopping, cooking,
      yard work, maintenance repairs, pay all bills, do all driving as he got too lazy to do that, take him to his numerous doctor appointments, some hours from home, lift him out of bed, into bed, in and out of his wheelchair while he sits on his fat bum (he’s 315 lbs) watching TV or sleeping up to 19 hours a day!!! I’m through with being his caregiver!!! I can finally breathe.

      • robert demers

        simply find someone else and be honest with him.wont be long and there will be no feelings left to hurt.you can see someone else, and move him into care if you feel he is to fragile to deal with reality

  • S. Nicholson

    I am also a spousal caregiver, I still love my husband. My husband is not the man that I married, but I made a promise thru sickness and health. I will care for him as long as I can. We do have great support, church, family, and friends. It’s just not in me to give up on a man who love me so much and would do anything for me.

  • J Baker

    My husband has not been diagnosed yet. All the signs are there. At this point, he will not see a doctor. For the last several years he has turned into a non social, stay at home, tv watching husband. He is now showing forgetfulness, short term memory loss. I feel so alone and depressed. I too, have fallen out of love with my husband. He is not the man I fell in love with. I want to pack my bags and leave! When I think these thoughts, I feel so guilty. I do not have any support from anyone.

    • Mary

      I feel the same. My husband refuses to get any help. I have taken him to get tested and he was diagnosed with mild dementia. He is 26 years older than me. I am very active, hold a full time nursing job in a large pediatric urban hospital’s emergency room. He is retired and he claims he earned not doing anything because he was working long before I was born. I make doctors appointments for him do all the cooking cleaning grocery shopping laundry.the kids are grown. He forgets things, lives in the past but still high functioning which makes me even more angry. He says everything is my fault.
      He did a lot of horrible things that were thoughtless throughout our marriage so the thought of taking care of him makes me sick to my stomach

  • kate

    I just want to caution the lady who says her husband still functions highly and manage his finances that one day that will change and you may have no idea what happens to all the money. My husband lost her entire life savings with his craziness in this disease. And that was before we actually knew he was ill. We had clues but an incompetent doctor told us that he was experiencing normal aging forgetfulness went all the time he was suffering the effects of the silent stroke evidenced by an MRI at the same doctor had in his possession. I actually left my husband before I knew he was ill So when it came to the time when he could no longer live alone, I brought him to Mexico and put him in Assisted living care which has now become nursing care. His health is failing but his family has lived with this disease, as he has, for nearly 10 years now. Just visiting him upsets me for days. If I lived with him and tried to care for him, I would not have survived this long. An Alzheimer’s support group was very helpful to me when it was available. No one who has not lived dealing with a dementia patient can truly understand what her frustration it is. Find people who have been there to talk to

  • Drew

    I’ve been with my wife for 16 years this year. We’re both in our mid-30s. She has a cognitive dysfunction that closely mimics dementia which onset 9years ago. At any time, any decision, she can forget what was agreed and do what she actually wanted to begin with. I live in constant fear of another wrench being thrown into my already crumbling machine of a life. I was madly, deeply in love with the woman she was, the woman that I get glimpses of regularly. Glimpses that fade, and so goes my hope.

    I feel as if the problems, the pain, that I experience is not real to her. Even before the dysfunction, she struggled with abstract thinking. Now, because she loves me so much she feels she would never do the things that cause me such an issue. The bewilderment on her face destroys me every time. I feel as if she believes I’m either going crazy or becoming abusive when she invalidates what I undergo.

    I feel like a failure, a complete POS that I am at the point where leaving is the only solution I feel I have left. The worst part is the anger, as her malady is the result of her abusing pain pills–she has Lupus–and having had a series of seizures that damaged her brain. Sure, she was over medicated by doctors, initially. But, where does the blame for the doctors stop and the addict’s responsibility begin?

    I don’t know if I can do this anymore. I’m such a mess that this took me 30mins to write through the tears. I just see more pain in my future.

  • Nancy J

    My husband is going to be 82 in November. He started losing some cognitive abilities after losing his oldest son in 2005. Started Aricept in 2013, but officially diagnosed with imaging in 2014 with Alzheimer’s. He is now at end stage 6 and entering stage 7. Surprisingly, he is able to walk and not get lost, shave, shower, and feed himself, and help me mow 6 rural acres of grass. Any other house maintenance is undone. He can’t fix cars or anything else. He’s so obsessed with the change in satellite channels and nightly this is his sundowners fit. I am having health issues now. I have a rare disease where my stomach bleeds and causes anemia and I have the beginnings of liver cirrhosis. My nerves are shot. I have no help and we live in a very small town 60 miles from any resources. I wanted to seek guardianship and paid for the paperwork only to discover I needed to drop it because he has an estranged daughter who would have to be notified. She would love nothing more than to make my life a living hell and try to gain access to her dad’s assets. Thank God I’m his primary POA and the attorney is his backup. She cannot try to change that as he has been determined incompetent by his neurologist and legal matters set in place beforehand cannot be altered. I love him dearly, but it’s a different love. I don’t feel intimacy anymore. I try, but like y’all, it does change. I felt guilty, but now I realize it’s a normal response to the stress.

  • Denny Rose

    Sadly if you are only I your 30’s you should think about what you need from life! I have taken care of my husband since my 40’s because he has Parkinson’s disease and Dementia. About 10 months ago he had to move to a nursing home because Social Services said his mobility was too poor for me to look after at home. We were very upset as a family when this happened but it’s been a huge relief for me. I have been a good wife for 41 years ( married at 17). I go to see him twice a day for at least 2/3 hours and feed him. It breaks my heart and I feel like he has lost the life he had planned. He was a very jealous husband and although I tried to understand him and adjusted who I was to make our marriage work for the sake of our 4 children and my Catholic faith. My problem now is that I have met someone who is fond of me and it’s very overwhelming because I am so tempted to take things further, this person completely understands and knows my situation even though I still continue to put my husband first! What do I do??? You are so young, please take care of your life, you can still care for your wife along side. We are able to love more than one person because the person you married isn’t a spouse in the true sense of the word anymore:( x

    • Eliza

      Denny, my situation is similar and very different at the same time. I am 41. My husband 61. We’ve been together for 9 years, have a 5 year old son! He has not been diagnosed yet, however, we know we are dealing with some type of dementia. Alzheimer’s or Front Temporal Dementia. He already has changed so much, he no longer is the person that he was. He could sit and watch tv all day, barely talks to me or my son. No hugs, no kisses, no more. That is all gone, and I’ve been feeling so alone for a while now. It isn’t fair for me, of course for him either! He doesn’t deserve this!
      Recently I met someone, actually looking for some stuff to help with my sadness, and to manage my stress levels. This person has become a very good friend and I actually know he’s falling in love with me. I am all over the place with my thoughts! I feel the worst wife, I feel guilt, but at the same time, it really helps to spend time with this guy. He knows my situations and says he wants to be there for me. I think he is honest, but still not sure what I should do….
      I’m lost

  • Moira

    Thanks everyone. I no longer feel like the only person suffering in this way.

    Husband was diagnosed last year with Alzheimer’s and frontal lobe dementia.

    It took about three years to get the diagnosis although the signs have been there for five years.

    He’s not the man I married and I miss that man so much.

    Three weeks ago, after three years of constant arguments he said he wanted us to seperate. I left our home the following morning with just a suitcase of clothes.

    He’s not been in touch to find out if I am dead or alive. When I left I was very ill with an infection and was also being investigated for something else which could have been cancer but turned out to be nothing.

    Fortunately, our adult daughter is currently at home but she is due to go back to university soon.

    I have rented a property in another town but feel so rejected and alone.

    I have no idea what the future will hold. I am 62 years old and need to work less because of my health, instead I am having to work harder than ever before.

    I still worry about him and feel so guilty for leaving but it’s what he wanted. My life feels empty.

    He’s not con

    • Lucy G

      When my husband and I married we would have never believed that he, a then very healthy,
      intelligent man would ever develop vascular dementia at the age of 55. We have been told
      that it most likely is the result of cobalt treatments he received for leukemia when he was 26.
      We were married 2 years at that time and our eldest son was born just 6 weeks prior to that
      diagnosis. As of this year we have been married 40 years. I can say with all honesty, that
      the diagnosis of dementia has been harder than the cancer. Like all of you, because of his
      limitations, I love him but am not in love with him. He is a shell of a man I married. Every
      day is a re-run of yesterday, with repetition and an exercise in patience. He has trouble
      answering the phone, using the TV remote. I have to do everything for him including putting
      on his shoes and he is now at the point where he can easily lose control of his bodily functions.
      He relies so much on me that when recently I had to be away for 2 hours getting the car maintained,
      rather than alerting LifeLine to get emergency help when he dropped to the floor, he called me instead.
      I have instructed him that I can’t help him anyway because I have arthritis in my back so even if I had
      been home I wouldn’t have been able to help. I know about loneliness, I live it every day because
      he sleeps an average of 15 to 17 hours per day. I frequently have to stop myself from crying jags
      because if I don’t I’ll just keep crying. I am starting a six week stress course next week.
      I also attend a caregiver support group once a month. I strongly recommend everyone do this to
      help take care of themselves. This is a club no one wants to join but sadly more and more people
      will be in our same boat. Tired, sad and risking our own health but for me divorce, separation is not
      an option.

  • Lucy

    When my husband married we would have never believed that he, a then very healthy, intelligent man would ever develop vascular dementia at the age of 55. We have been told that it most likely is the result of cobalt treatments he received for leukemia when he was 26. We were married 2 years at that time and our eldest son was born just 6 weeks prior to that diagnosis. As of August 2019 we have been married 40 years. I can say with all honesty that the diagnosis of dementia has been harder than the cancer. Like all of you, because of his limitations, I love him but am not in love with him. He is a shell of a man I married. Every day is a re-run of yesterday, with repetition and an exercise in patience. He has trouble answering the phone, using the TV remote. I have to do everything for him including putting on his shoes and he is now at the point where he can easily lose control of his bodily functions. He relies so much on me that when recently I had to be away for 2 hours getting the car maintained, rather than alerting LifeLine to get emergency help when he dropped to the floor, he called me instead. I have instructed him that I can’t help him anyway because I have arthritis in my back so even if I had been home I wouldn’t have been able to help. I know about loneliness, I live it every day because he sleeps an average of 15 to 17 hours per day. I frequently have to stop myself from crying jags because if I don’t I’ll just keep crying. I am starting a six week stress course next week. I also attend a caregiver support group once a month. I strongly recommend everyone do this to help take care of themselves. This is a club no one wants to join but sadly more and more people will be in our same boat. Tired, sad and risking our own health but for me divorce, separation is not an option.

  • Catherine

    Reading these comments has helped so much! I truly thought I was the only one who felt this way, and all I hear from other is that I just shouldn’t feel anything but compassion and love. My husband has always been abusive and cruel, and sadly I was foolish enough to stay for reasons that no longer matter. Now life is a living hell, caring for someone who never once treated me with any love or compassion. He has middle stage lewy body, and like others he can still do a few things for himself, but doesn’t want to. Why should he when he can make me do everything. I had a bad fall 5 months ago and am currently in a wheelchair, and he can actually get around better than I do. But I do everything. I have a number of serious health issues, and this is going to take my life. I’m so angry all the time – I just hate that I’m going to die this angry, knowing that he won’t care.

    • Lucy

      I hear you Catherine. A lot of your story resonates (except he was never mean to me). I once ask what would happen if I got really sick, he responded ‘Oh well’. As caregivers we can really lose ourselves in the process.

  • Denny Rose

    Catherine, you need to get out of this situation if you can!? If provision is available/possbible then you can move on. My husband suffers with Lewy Body Dementia and Parkinson’s. He is the only man I have ever known ( courting since 15,married at 17) He was a very controlling and jealous husband but also an intelligent , hardworking and compassionate person( where others were concerned) that I tried to understand. I loved him with a passion and never gave him reason to be so jealous and controlling. When I look back I feel that , perhaps, he was a little bit on the autistic spectrum, as 3 of our 4 children are. I go to his nursing home twice a day, I always will. Please Catherine, make yourself happy/happier, it’s up to you because it’s your life. I have met someone who really cares about me and understands my commitment to my husband so I feel lucky. I will always live my husband but I can love someone else alongside because they love me in return, which is so wonderful. Catherine, don’t kill yourself with guilt because it’s just life and life is short xx

    • Kathy

      I have been reading everyone’s comments with such sadness and empathy. I have been married to my husband for 4 yrs. he has just been diagnosed with early dimentia. I was in my first marriage for 37 yrs… 3 children and 8 grandkids . It was a horrible marriage!! Then I married a wonderful man , whom I had known thru business for over 40 yrs. Life was wonderful , but now this horrible disease has appeared. Selfishly , I feel as if I have been robbed twice of a happy marriage. I love my husband ….but it is different now…like a mother and a son! I am 70 and not in the greatest of health and am hopeful I can be his caregiver til the end. Reading other people’s stories has been incredibly helpful….it has been hard for me to deal with my anger issues….I am ashamed at my anger and realize now it’s normal I am seeing a therapist and it is helping. I want to thank all of you for sharing your stories and helping me to see there are ways to deal with this so life can be a little easier and fulfilling!

  • Jacie Duca

    It’s like living with a slowly dying battery. I often use the term grey glob of nothingness. I feel empty, alone,try as I may to get him to use the indoor exercise bike I got him he rather sit in his recliner and watch tv.He sits in the car while I do shopping, banking,ect. I wear ear plugs when tv is on because he continually makes noises with his lips and it drives me crazy. Not tremors… He rarely speaks because I continually have to ask him to repeat himself. Literally now expects me do everything. I feel sorry I really honestly do but he shows not a single sign of initiative or drive. Procrastinates worse now then ever before. We have given up 3 things we both enjoyed doing because he no longer wants to be involved or active. Married 48 years. P D we figure started at least 10 years ago. But not diagnosed til 3 years ago.

  • Nancy

    This life is not what it sounds like any of us expected. Taking care of someone with dementia is one of the hardest jobs out there, and no one understands it until they have to do it. I took care of my mother with Alzheimers for several years and that was difficult, but I have a spouse with Vascular Dementia that has been much longer and harder. He had a stroke in 2008 and I have been his caretaker for everything. I can’t be a caretaker and a wife. It is one or the other for me, so the loneliness is the most horrible part. Selfishly I want to go out and do all of the things we had talked about, but I can’t do them with him. I divorced him several years ago to ensure our financial health and split assets, but that did not change my role and nothing about his life has changed. I have to take this day by day because if you try to look to the future it is so dark you wouldn’t get up in the morning. I work and everyday I dread going home and dealing with whatever the problem of the day is. Everyone will tell you how special you are for doing what you are doing, but that does not help. It actually makes you feel worse. I don’t think I was cut out for this, but what are the choices? This poor man didn’t ask to be sick, but it has taken two lives, not just one. I love him as one of my closest family members, but I am not in love with him and the thought of an intimate relationship is not something I can imagine with the man he is now. That angers him and the dementia allows him to make up some horrible stories of “what has been going on”. My kids are great and help as much as they can but it feels like I am in a box I can’t get out of. All the support groups in the world don’t change what you have to go home to.

    • Linda

      Nancy, I completely understand your comment that you cannot be a caregiver and a wife. I feel the same exact way! I wonder if it is a way that I am dealing with my husband’s illness and choosing to be in denial? I feel terrible that I feel this way. My husband was diagnosed with PSP in early 2015. I have been caring for him for the last 5 years. I work full time and he needs 24/7 care. I have a private caregiver that stays with him when I work. I would be going crazy if I didn’t work. I am exhausted and have so many emotions. I too have adult children and grandchildren that are the light in my life. There are days I just do not want to go home after work. I feel I am in a box and cannot get out. My husband can no longer speak a complete sentence. His words are all jumbled. I feel he still understands what I am saying most of the time. I love him out of empathy and sympathy for what he is going through. I wouldn’t wish it on my worst enemy. But I feel so lonely.
      Nancy, I am sorry for what you are going through and please understand that you are not alone.

  • Burdette

    Seems to me, there are several difficult parts –
    – the person is not the person you married and lived with for years and will say and do this your did not think you would ever hear or see and they hurt deeply.
    – there is no end in sight so one worries about money and ones own physical and mental health as time rolls on.
    I know myself being a Believer is the only thing that keeps me going!

  • Sandy

    Oh, how I agree! I watch and wait and worry. I have little joy in my life yet I try to start over every day. I am a nurse and always enjoyed taking care of the most confused patients. I was so cheerful! Nothing prepares you for 24:7 caregiving of a partner or spouse. I lose my patience easily. I have to go into another room to calm down. My husband is incoherent and restless. I read that 40% of caregivers die before the patient! I am fighting for my survival. I don’t want to be a statistic. My family seems to throw a wrench in any little plan I have to get out for awhile. So be it. It is my life too.

  • Ani

    I’ve been caring for my husband for about 5 years and know in my heart that I have the obligation to do so. Life was very good when he could easily walk anywhere, travel, drive, and do all normal things. But life is not all roses and I’m not complaining even a bit(like all of you), for taking care of the man I married to. I help him from the moment he gets out from bed to the moment he goes back to bed. I cook, do laundry, bath him, feed him in the mouth-just everything. Working outside home would be impossible for me because he is completely dependent on me and when I go away to run errands he keeps calling me… He has children from previous marriage but they could never do what I do. A man who worked his entire life to provide for his family does not deserve to be left to die or to be neglected. So, I do my best, am kind of burned out, but I’m still caring for him in a loving way and always hoping for a better end for both of us.

  • Donna Geiss

    I was sitting here feeling angry and frustrated at my husband, and shame that at times I feel nothing but anger for him, did a quick search and found this site. He is 69, I am 67, he was diagnosed a couple years ago and his life now is sitting in his recliner all day long watching old westerns. Refuses to do much more than that. Sleeps half the day away, the other half is doing nothing. I feel at times like I am at the end of my rope.

  • Lois

    Like so many other contributors to this site, I happened on it by accident as I searched for help and guidance in managing all the negative emotions I’m feeling since my husband experienced a stroke which damaged the pre frontal lobe. he doesn’t have a dementia diagnosis and refuses to accept there are any aftereffects from the stroke. He’s 70 y o, I’m 68. He retired over 10 years ago and has been very pro active at his sports club until 6 weeks after the stroke he hollered a highly abusive remark at some lady club members. it was overheard by a lady it wasn’t directed at who complained. I took the call from the Chairman of the club who told what had happened; he also confirmed all the other traits my son and I had noticed – shuffling, week speech pattern and losing track of words, forgetfulness failing to complete tasks. the crazy thing about the abuse is that he doesn’t think he has anything to apologise for because he claims it was a ‘joke’. He has previously reprimanded guy for using same insult; he called it abhorrent. Now that’s his ‘defense’; when I tell him a joke needs to be funny, an insult isn’t funny he looks at me with a moronic sneer on his face. the stroke has caused him to lose coordination skills, he can still function at everyday tasks(thankfully) but he’s not the sportsman he was. That’s the only thing he’s bothered about -getting his game back. he had to step down from his voluntary position at the club and due to bad winter weather he’s not been able to play, so he’s barely leaving the house. he just sits with his computer doing lots of on line shopping and watching 1970 cop shows which are now so politically unacceptable but that’s the world he wants to live in. I have a tirade of racist, sexist, homophobic, fascist remarks screamed at me and the TV. he mowed the grass this Summer but I do everything else as well as work 20 hours a week, all ev work. I come in at 8:30pm and then cook food. He’s been wearing out the sofa all day. I used to try to persuade him he need to get help until one time I thought the verbal abuse might turn physical, he got right into my face and told me to shut the #### up adding ‘if you ever mention that again you should feel very afraid, don’t underestimate what I’m capable of .’ After these episodes of screaming, he behaves as nothing has happened.
    if I could leave I would but I have to protect my son from having to take responsibility for him. we can have no social life or holidays, even spending a few days with our son and his young family is awkward as it’s as though he’s autistic, he doesn’t have conversation- he makes loud speeches at whoever he manages to corner.
    This isn’t ‘life’ it’s a living death. there’s not a moment when I don’t wish the stroke had been a catastrophic one and until read this site I felt like a really bad person for wishing that. now I know I’m not.

  • Sandy

    To those at the end of your ropes: I hear you! Everyday I have to give myself a pep talk to get out of bed. My husband is 70 years old and I am 68. His PD/Lewy bodies dementia was diagnosed in 2013. He had early retirement before the diagnosis and was able to have freedom to do what he wanted. He is dependent on me for most cares and has become increasingly confused and contrary. I, on the other hand, retired in 2013 to his knee problems, surgery, therapy, wound care, med regime 6 times a day, appointments, and Parkinson’s with dementia. I have my faith, a few family members, and about 3 friends I can talk to. Even so, most people do not want to hear it. I am waiting for the light at the end of the tunnel when—as another contributor wrote—I can breathe again. Good luck to all of you dear people.

  • J

    I feel cheated, robbed, angry, resentful, lonely, hopeless, frustrated, exhausted, tearful, unhappy, sorrow, grief…

  • Maureen Giusti

    I found this site this morning following a very long night with my husband of 53 years. He has Lewy Bodies Dementia and early Parkinson’s. Was diagnosed 5 years ago, but I knew something was wrong long before. I do not like him or love him and should have divorced him 20 years ago. He is well educated and probably a Narcissist. I take good care of him, but pray God takes him. I just need to have a few years for me! Reading your comments today changed my life. I don’t feel like the meanest, coldest, shallow wife in the world anymore. Thank you

    • Cam

      Dear Maureen
      I too recently found this site. You were the last comment before mine. I think in a similar position and age probably . See comment above. We have been married 54 yrs and I care for my husband who had PD and LBD. I do still love him but hate what it has all turned into and hate myself that I seem unable to be kind to him. It is a very hard life. If I didn’t have my IPad to escape to, I would go mad. Love the radio, surfing and audio books!
      I wish you well with best wishes from Cam

  • J

    My husband of 6 yrs is acting like he has Alzheimer’s..every year i see the decline, he will not talk to the doctor about it because he is afraid that an employer will be able to see his records. He is becoming more rude and angry. I don’t love him anymore.i feel like i am his mother not his wife…he acts like he is 10 yrs old. I have to do everything for him because he gets too confused and angry to do things himself. He is always losing, misplacing things and i have to stop and find them. He refuses to admit when he says one thing then says something different another time ….i don’t know how this is going to end and I am so worried…..i feel like i have been duped! I think he knew he had this and has used me to take care of him…..his children will not acknowledge that there is a problem…they only see him once a year tops! I’m sad, lonely, and want out!

  • Trudy

    OMG I found a site that explains my life, or what there is of it.
    Like most of you I feel I will not live through this but then the next day comes along with the same problems.
    Last night my husband was “sundowning” for about 5 hours and I am exhausted.
    He has vascular dementia and I know he didn’t ask for this. 3 years of mental abuse has left me shattered. I feel like a prisoner. I try losing myself in reading books.
    A big hug out there to all of you on this difficult road we are on.

  • Pat

    My outlook on my situation is I will do what I can as my husband was diagnosed with AD. He is in moderate to severe stage. He has good days and bad days. Prior to his diagnosis I was contemplating a separation or divorce simply because he has no drive in any area of his life. I felt I was putting in 150 percent into the marriage and little effort in return. I took charge of his health and doctor visits the day I received a call from an EMS driver that my husband was found outside his vehicle and he thought he was in Brooklyn. We live in Ohio and he was around the block. Then after much testing we received the diagnosis. I already reconnected with an old friend I knew forty years ago and have moved forward forming an emotional bond that I am certain will continue to grow. We see each other at least once a month for one to two weeks at a time. My son watches over my husband while I’m away. My husband and I reached an agreement that our relationship has gone south. We shared no physical or emotional bond for over 15 years. We just co habituated and raised our adopted kids. He wants me to move ahead and be happy I cannot turn my back on him now and will take care of him for as long as it takes but I now need to adjust. I will not become resentful because of the hand we are dealt. I’ll adjust and make room for new beginnings and do what I must to care for my husband.

  • Pat

    I will do what I can as my husband was diagnosed with AD. He is in moderate to severe stage. He has good days and bad days. Prior to his diagnosis I was contemplating a separation or divorce simply because he has no drive in any area of his life. I felt I was putting in 150 percent into the marriage and little effort in return. I took charge of his health and doctor visits the day I received a call from an EMS driver that my husband was found outside his vehicle and he thought he was in Brooklyn. We live in Ohio and he was around the block. Then after much testing we received the diagnosis I had already reconnected with an old friend I knew forty years ago and have moved forward forming an emotional bond that I am certain will continue to grow. We see each other at least once a month for one to two weeks at a time. My son watches over my husband while I’m away. My husband and I had reached an agreement that our relationship has gone south. We shared no physical or emotional bond for over 15 years. We just co habituated and raised our adopted kids. He wants me to move ahead and be happy I cannot turn my back on him now and will take care of him for as long as it takes but I now need to adjust. I will not become resentful because of the hand we are dealt. As a caregiver I will take time to pave a way for new friendships while I care for my spouse.

  • Fay

    I’m 69, my husband 76, been married 31 years. He doesn’t talk to me unless I say something to him; he only gives a quick answer. There is no conversation. I feel like I live with a dead person. I don’t like him and I’m not in love with him anymore. Sometimes he acts stupid, like a kid, then gets angry at me for my being amused. We have nothing in common. He’s never come to church with me. I think I have emotionally divorced him. Is this normal. yes, i copied some of this from the top question, because it sounds like us.

  • Robin

    Deb and others, thank you all for your honestly. My husband is 3+ years into dementia. There are 13 years between us and we have been married 9 years this month. So basically 5 years were without this disease. I feel my life has been stolen from me. I still work. I am the age he was when we met – always exploring, dinners. Weekends away, laughed all the time. A love story like no other. Now, he has no true recollection of our 13 years total together and no recollection of hiring a professional piano player and singing to me at our wedding. It seems petty but we sit at dinner with no words exchanged, something we vowed never to do, and I watch him separate his food so it doesn’t touch, cut up his meat in little peices, and eat each thing on his plate in its entirety before eating the next. It takes everything I have not to collapse into tears watching my husband, who was larger than life, look like this. I feel.like I am living alone. I am in so much pain, but I never show it publicly.

  • MLM

    To Pat & others: seems like the best of this situation is to plan something for yourselves, time away or pampering of some sort. In my support group they say, “guilt is for the shredder” whenever we bring up that word! My husband has CADASIL and has had mental issues with it since onset about age 30; he’s 71 now. My kids & I learned to live a separate life from him early on to avoid the angry confrontations, but I’m no longer afraid of him, he’s as docile as a puppy now. But with that, I resent all the years of having to avoid him (his behavior) with no support from him for any & I mean, any, of life’s major events –I was 150% of our partnership always trying to make things seem normal. And I don’t like him to touch me anymore because I resent the lost years I made excuses for his behavior; he was abusive and I was mistaken to follow his lead on important issues and decisions, when he really was mentally, a child: I know it wasn’t his fault, it was the disease, but that loss of normalcy is imprinted on me & can’t be righted. Now, there’s a man who lives in my building who seems to care about me: I want to take care of my husband, but I’m 58 and look good enough for that age [unfortunately the stress is taking its toll on my heart health] but while I’m still breathing I’m going to fight to stay alive mentally and emotionally. I’ve been reading blogs about the new “dating & dementia” being a force for good since dementia is becoming a very long process with modern medicine keeping us all alive. Best wishes for everyone who needs support, find it wherever you can; love is love…love yourself too!


    thanks to [email protected]. com,he cast a strong love spell that brought back my ex lover

  • jane

    My husband’s emotional return
    Thanks to you priest manuka for what he has done for me! My husband stopped to fill out the divorce papers after I contacted him to help me stop the divorce with my husband and now things are much better now.

  • jane

    As he said the whole divorce process was canceled and the nasty woman who caused the problem in my marriage was fired by my husband and peace has been restored. Thank you for your help. [[email protected]. com]

  • Karen

    Jane and Tuva: Please stop promoting love potions and advertisements on this site. It is inappropriate.

  • ?

    As most of you know WE never signed up for this: but shit happens and we need to deal with it the best you can if your still married GET A DIVORCE don’t look back you have only ONE life make the best of it . YOur husband ,boyfriend, long term lover will NOT remember you or your care so get out, their children don’t care they will leave that to you and disappear until the will is read. Stop feeling sorry for ourselves be pro active and do something . DRAIN The accounts take care of your finances and sign them up for care government style . YOU THINK I AM ANGRY GET REAL

  • Evelyn Tate

    Find much comfort here when I learn what others are experiencing and how they feel about it. My husband is 87 and I am a young 77. I am trapped caring for him and I feeling the last few good years are being wasted. He has been diagnosed with mild dementia. He mostly wants to watch tv and look at his cell phone. I have the responsibility for EVERYTHING! I pray every day to the Lord to help me and resolve this situation. I’ve pretty much moved from depression to bitterness. I hate feeling this way.

    • Claudine

      Evelyn, I am 65 and my husband is 77. He is my second marriage. My husband was diagnosed about 8 years ago. Reading all the comments gives me comfort. I thought I was losing my mind, feeling so guilty about not loving him like I once did. The bitterness and anxiety is overwhelming. He thinks I should be physically attentive to his every need. When he had back surgery a year ago, he was so ungrateful and critical toward me. I was always attentive and caring and loving toward him. But the last year has taken its toll and I do not feel that way. I want to feel positive and good again. I find peace in prayer at times but everyday is hard.

  • Claudine Spencer

    So many who have replied describe my situation as well. Kind of a comfort knowing others have the same issues.

  • Jenny

    These stories are my story, this year I gave up my job to be with my husband more and have some experiences of travelling before he was unable to..
    I have done an online course in understanding Alzheimer’s but what is worrying me is my own mental health…and can’t attend any support groups because of covid…it’s really hard..my closest support systems (family) live in another country …reading your stories does help me understand that I am not alone with this burden..

  • Lisette

    This is my first post and visit. I just read this entire thread, crying my eyes out….. reading so many posts that were exactly how I was feeling and what I was going through. I’m 63 and he’s 70 (married since ’77) I hate my life.

    I had a good, deep down, sobbing, snotty nose cry. I needed it – and I’m sure you know why. Thank you for sharing your truth – our shared truths. God, it’s such a wonderful thing to know this place exists. I don’t have anyone for support.

    • Anne Marie Ladegaard

      Like you Lisette, I’ve cried my eyes out reading so many stories here, just like mine. My husband was diagnosed in mid 2018 with a benign pituitary tumour. He had urgent surgery in August as he was going blind in his left eye from the tumour compressing the optic nerve. Just 6 weeks later, the tumour returned, and he had a craniotomy 2 weeks later, losing the sight in his right eye. And suffered delirium. Went ok for a year, then another endonasal brain surgery last October 2019. More delirium, and disoritation confusion and blind. This year, tumours returned but too soon to operate again, so he had radiotherapy in Sydney, 30 sessions. He had a seizure after 7 days, broke his shoulder, more surgery, more delirium… I tried desperately to care for him at home, but my mental and physical health was suffering. I cried a lot, could not sleep as I had to watch my husband 24/7, day and night. He’d wander off, move furniture, fall etc etc Exhausted and fearful, I placed him into permanent care – he was also becoming aggressive. It’s been about 6 weeks now, and although my life is calmer and I’m better, he’s so confused and hallucinates so much, that I don’t want to visit him or call him. He’s not my husband – I lost him last year. He’s 67 and I’m 65.
      Thank you all for sharing your stories.
      I forgot to say that his dementia is not yet diagnosed, but it’s what happens after 3 brain surgeries in less than 2 years and the shoulder surgery – post op delirium leading to dementia.

  • Anne

    Reading all these stories fills me with dread, My husband is 85 and I am 83 and have heart trouble so I have no energy to keep sorting out his mess ups.he has been going down this road for 12months now without any medical help which I am trying hard to get, I can’t stand the sight of him and have no sympathy. we have been married 63 years and it has never been a picnic. I feel like I have just not had the courage to leave, he breaks and muddles everything, phones tradesman for nothing and I have to warn them not to call round. He talks rubbish to everyone. I am trying to get Dr. to help as I will lose it one day and hit him. His latest is to fiddle with gas taps and electrics, That gives me worry but he just will not listen to me when I say leave them alone.He will have to go somewhere as I am at the end of my tether, never knowing what he will do next. Sorry for the rant.

    • Nancy

      Anne, I hope you were able to get some help with your situation. I just want you to know you are not alone, but you must take care of yourself. My husband was diagnosed only one year ago in January 202o. Today is Jan 1, 2021. I don’t know how I will cope for another year. We are ten years younger than you. I cannot imagine a decade of this.

  • Pat

    It’s a really lonely road that you can’t imagine until you’re there yourself. My husband is 67 and diagnosed with alzheimers last year, but suffering from memory issues for over 6 years. I’m 66 and have very little patience and find myself running off for an hour or so here and there just to get some respite. He’s a really nice guy but the repetitive conversation drives me crazy.

  • Joyce

    I am sitting alone tonight as my husband goes to bed at eight every night, and feeling I can’t go on. . We have dreadful rows and I hate myself for losing my temper with him. I can’t make him understand that it’s this evil disease I am raging about not him. He is profoundly deaf and this makes any communication even more difficult. After three years of looking after him, I actually feel suicidal tonight. Only hope he forgets our row tomorrow because I have always loved him but i don’t know who he is anymore. This civic 19 means we have no support from anyone and has made a dreadful situation even worse . Sorry to sound so miserable

    • Nancy

      Joyce, don’t feel disappointed that you get your evenings to yourself. That alone is its own kind of escape from the disease. It takes a toll in so many ways. My husband was never easy, but we argue and bicker and fight all the time. It is exhausting. As annoying as it is when he sleeps a lot, at least it gives me a break from his narcissism and demands. I look at these comments and I honestly don’t know how I will do this for another decade or more. He is 74, I’m 73. I am so resentful that his disease is eating up what may be my own last healthy years–I am filled with rage all the time. Take heart. Come back and let us know how you are doing.

  • Neon

    My husband was diagnosed with Alzheimer’s disease one an half year ago. His memory is getting worse and more violent to me.
    He hit me again with his fist on my top part of my right chest while I was driving for minor argument.

    I asked him nicely to turn down the volume of the computer. Then he had a sudden outburst of anger , he hit me with fist on my right arm again. This time it was really hard. I felt numb and pain on my right arm.


    All medications do not work.
    He cannot even remember what he did a minute ago.
    He still has a sudden outburst of anger for no reasons. He is more aggressive in bullying me physically .

    I do not want to be hit by him anymore. It seems that he is getting into the habit of hitting me. He hits me more frequently than before. I am mentally and physically tortured by him everyday. I am exhausted and dying everyday. God, please help!

    What did I do in my last life to deserve this??? Why me?????

    • Theresa

      Hello Neon, my heart goes out to you. My husband also has dementia and I have also been having difficulty with his anger and moods. Not sure what medications you have tried but my husband is on cymbalta (Duloxotine) and also Gabapentin. If things get really bad I can give him Ativan, but doctor will only give me a few of these. You need to tell his doctor that he is violent towards you, there must be some kind of medications that can help. You don’t deserve to be treated this way and you have to do something to get help. Call police, call Alzheimer’s association, call mental health line,someone has to help you. He may need to go into a home. Destroying your life for someone who is sick is not your responsibility, you don’t deserve this and must get help anyway you can.

  • R

    Thankful to read these posts. I am new at this. No diagnosis for sure with my hubby(too hard to accept at the moment), but the suspicion is alzheimers or FTD (?). Im 57. He is 69. Eight months ago fine….now paranoid, anxious,He cries Often. Shivers. Chatters teeth. Not violent. Im so sorry what you all go thru. I feel scared and Lonely, Too. I trust God, but just needed to join in. What a difficult thing to watch. We are going to get A puppy. Its just so quick. He cant remember address, phone, ss#, abc’s. Checkbook. Thx for any suggestions. Was hard to write this.

    • Storm

      I read this and I know how you feel , almost exactly 8 months a go my husband had a stroke and has left him not remembering his life, his speech is gone and he knows he is not the same ! To I needed to share this with you I don’t like this journey and I want some days to scream and no one understands unless you live it I am 56 and he is 59 ….I am hearing you

    • Mary

      Dear R,
      I spent 18+ months dragging my husband to doctors looking for answers to what was going on. Noticeable changes started immediately upon his retirement of 37 years in the Military at age 57. He will be 60 this year.
      Doctors believe he has Lewy Body Dementia. One day fine – next day severe paranoia, anxious and memory issues. No violence. He can’t remember address, phone #’s, checkbook – & cannot multi task anything. Even something as easy as making a sandwich – too many steps. I am very lonely. Miss our conversations, miss him telling & showing me that he cares about me. I do everything & work full time. Considering retiring but work has been an escape. He doesn’t really talk unless I initiate – even then there are times when he doesn’t answer back. He is either sleeping or watching TV – no desire to do anything else. He continues to have a lot of bad dreams & hallucinations. We don’t sleep together anymore b/c it scares me. He would be devastated if he truly knew what is going on. I am very worried about what the future is going to bring with this disease.

  • Storm

    I am 56 and my husband is 59, he has forgotten so much my name , his name our life, I try to move on but it’s hard people say look after yourself because you have to look after him or he has no one , we have no family all have passed , I have to go back to work leave him at home with Carers. First day on the job is Monday I feel guilty, sick and alone most of the time .I love him with out doubt but I hate watching this , me too I just had to join in thankyou all.

  • Nicola Bull

    Hello, I too am part of the carers society. My mother-in-law had Alzheimer’s for 9 years and I was her main carer. She lived alone, about 11 mins away and we managed to keep her in the home she had lived in for 69 years. Sounds mad but she was less anxious when she was there. We thought of putting her in a carehome but after a stint in hospital, where she was more mobile because of her anxiety, therefore more danger to herself, we decided to bullet proof the house. I spent many hours with the authorities agreeing risk strategies, disabling gas appliances, removing trip hazards, re-wiring the house to show it was safe electrically so she could have heat and hot water, installing safety cameras and alarms. We managed to get help in the form of care package (UK) which was only 1 hour a day and then my attendance. The authorities agreed she was safer at home because location of toilet etc was inbuilt in her memory so she knew where it was even though she couldn’t remember the name of etc. She spent most of the time asleep so we were relatively lucky.
    She passed away in March 2016 and we thought life would resume some sort of normality. My husband is 17 years my senior and by May 2017 he was showing signs of dementia. How rubbish is life? He was diagnosed with Alzheimer’s with vascular disease. He had minor symptoms then. However 3 years on he is unable to bathe, clothe, gets drinks or any of those things. I bathe, dress and feed him in the morning, get his snacks and drinks, dinner and when we go out I put his coat and boots on as he is unable to. He has no recollection of the name of our children (20 and 22 years old) or that he has a brother. Our 22 lives at home and my husbands still doesn’t know him. I am his carer and not his wife.
    Unfortunately he has not slept through the night for about 3 months and is constantly on the go during the night. This means I do not sleep. He has sleeping tablets but these do not give any respite.
    I have been lucky in the fact that I knew to instil as many routines as possible before it was too late. He has a GPS watch in case he wanders and we have cameras thoughout the house to give peace of mind (accessed via my smart phone).
    I love my husband but have lost my soulmate of 34 years. I am not angry with him but with the situation I am in. He is compliant and willing to ask for help from everyone as somehow he still knows that this is not his fault.
    I have to work full time in order to get all the bills paid, luckily I am able to work from home since this awful Covid pandemic started. It does make it easier to look after him, however, as days roll on it seems that his decline is so rapid that I have not worked in 5 weeks.
    I am becoming run down now, not because of his care, but because of the financial situation we are being put in. I have been told by the authorities that I can work no more than 10 hours a week to be able claim carers allowance. I am unable to work those hours because of interruptions from him. The total financial gain from working these hours and the allowance would not get the bills paid anyway. Therefore I must endeavour to work, my employers have been brilliant but say I can only work between 7am and 7pm and no weekends. This is restrictive but much more flexible than most employers would be.
    On a very positive note: Along with the angry noises he makes and frustration we all have, we have always laughed! He does some very mad things and the things he says are madder, however its funny! We all know the ending, we are going to get their by having a laugh, he laughs more than we do but it helps.
    I refuse to feel guilty about my feelings on bad days when I have mean thoughts and self-pity. I am only 54, I still have a life to live after this and I have 34 years of memories to play over. It’s still hard but we live day by day.
    I hope others can take pieces of my experience to make theirs a little better. I have been comforted to read about others and their stories and I am so thankful that my husband is not aggressive in any way. Stay strong and have you time, even if its in the same room as your loved one, mentally drift away, do meditation with the help of apps, eat copious amounts of chocolate and don’t feel guilty.

  • Sylvia Wood

    Hi everyone, so glad I found this page, my husband of 48 years was diagnosed with Frontal Lobe Dementia in January 2018, like you all I struggle every day to cope with him. From being a Police Officer and my rock he is now a shadow of his former self, he’s 73 and I’m turning 70 this month……. I have become a nasty shrew and he’s driving me nuts, cant make a decision and looks to me for ‘permission’ for doing menial tasks. We nearly separated 10 years ago and oh how I wish we had, there is no love and hasn’t been for years, so why am I still here?
    We moved into a retirement village 15 months ago, this was all my doing as I now handle all finances and arrangements, he just sits in his chair doing ‘find a word’ books or outside smoking (this costs approx $400 a month) we live in Australia.
    I am so tired, and worn down from this but am determined to outlast him and find myself hoping the smoking ‘gets’ him first.
    I wont apologise for being an awful bitch I need to vent this bile and go back to the monotony that every day brings. My family dont understand so it’s just me.
    Thanks for listening we are unfortunately all joined in this living hell of which we didn’t ask just as our ‘loved ones’ didn’t.

  • Cindy

    Hallo to everyone. I just found this website and feel thankful that how I am feeling is not unique. My mother was diagnosed with dementia many years ago and I never felt angry or stopped loving her. She was such a lovely Mom. Now she is in her 90’s in a nursing home with very advanced dementia so recognizes no-one.
    My husband now has dementia and my response is very different. I hate being in his company. We did not have the greatest relationship before this because he could never really be bothered about most things. Now it is even worse – I work, support my daughter who is a single Mom and so kind and caring. He does nothing all day and I am responsible for every facet of our lives. He sits looking at his phone and complains that he has to walk the dogs. He gets angry so easily and gets in my face or puts his fist up at me or pushes the furniture. I am so tired. It’s hard to know what’s dementia and what is meanness. I would really like to leave him but feel a sense of dread about how I would do this. Money is not an issue – it’s just how do you get your head around it. I am 66 and feel so lonely. Sometimes it would be so nice if I had a partner who cared for me. I don’t like coming home.

    • Ilva A Hertzler

      I have found this site to be very helpful. I don’t have it as bad as I thought, after reading many of your posts.
      I depend on my children/spouses, my church, our extended family for support and understanding. Most of all God is the One who cares and understands everything. I need to the Lord in all of my life’s cares and frustrations.

  • Christine McMullan

    I just found this site & after reading a number of the personal stories of primarily women who are looking after their husbands who have dementia.
    My own experiences with my husband came flooding back. Until someone has gone through it there is no way anyone would understand, or that the aggression & anger & confusion are not something the sufferer chooses to do. It is the complete disruption of the memory & thought patterns. Medication can help only so much but allows the caregiver to keep their spouse at home & not be sent to a facility where quickly loose what semblance of normalcy they still have. I can hosnestly say that looking after every aspect of my husand’s person care, from showering, shaving, foot/hair cuts/ & nail care, wee my way of showing how much I loved him, even if he didn’t know who I was at times.

  • Donna Geiss

    so many people echoing what I’m feeling. A few weeks ago my husband asked me if his wife had left him. The first thought I had was, I should have left you twenty years ago when I had the chance. I know he has a disease, I know I should have more compassion. We’ve been married a very long time. We’ve had lots of good times, but thru it all, he was always very selfish. Everything was about him. And now, it seems, it is really all about him. I don’t know if I can take much more. I can’t leave him alone, I can’t volunteer like I used to, I have to do everything. And I’m tired. The kids say, oh, we will help you. And they try, but they all work, have families of their own, and are busy living their own lives. I’ve had it.

  • Carla

    Hi! I’ve read all these posts. I feel so ashamed of myself for feeling the way I do. My husband has early onset dementia he was diagnosed in May 2020. He is now 57, I’m 60. He had to retire. He was a corrections officer and so am I. I still work full time. He has no family that will help! His sister was furious at me when I asked her to help me find a home for our aggressive dog he took in. She told me it’s not about you! My brother needs that dog he’s home all day by himself. I told her you don’t understand all the stress I’m under working full time and dealing with everything. She replied how dare you I took care of o my father who had dementia. Well I don’t think she slept with her father and he certainly wasn’t her future! How cold and uncaring can someone be? She is of no help at all! My husband never had children this is our second marriage, so it’s all on me! I’m so sick & tired of people telling me enjoy the time you have now! REALLy! He doesn’t engage in any conversation and he’s always watching T V. I’m so sad, lonely and depressed! I want a life! This isn’t fair! I raised my boy’s I never thought I would be spending my days and nights with someone who can’t love me anymore due to this god awful Frontal lobe dementia! Friends, and disappear and family and expect you to give up your life! They better take a walk in our shoes. Society judges us if we don’t want to care of the person with the illness! I’m trapped! Help!

    • Rob

      Thank God I came across this site, it’s comforting to know that I’m not alone. My wife has some form of dementia, awaiting results at the moment.
      I like many of you feel life is slipping by and I feel very alone. My wife who was once the life and soul of the party hardly talks, watches tv all day, she can’t write, talk, make a sandwich for herself . She makes tea but sugar gets all over the place, she can’t tell the time, can’t add or subtract, I’ve no idea if she is happy or sad, we have no intimacy whatsoever. I like Deb feel I’m living with a dead person who I resent d sad I much. Her family is as joke her mother doesn’t care snd I feel like running so fast away and for that I feel bad. I do my best, but get so angry with her because she can’t talk to me about anything. I’m fed up.
      Even after shouting at her she just sits there with this blank look a former shell of herself.

      I sympathise with all of you in the same boat, wish we could all get together and talk more, we just have to be more patient I guess, easier said than done, hss as nag in there guys. Love to you all x

    • Sadie

      Omg having read your comments I feel so much better and realise that losing your temper/resentment etc living with someone with Alzheimers is not unusual. My partner recently left our home in a temper because I was going to use the car. He drove from our home over 150 miles and got lost. This resulted in his son in law rescuing him and taking him to his daughters (who I do not get on with very selfish self centred person. Always resented our relationship since he was so different with me than her mum). Seven months previous to this he stated he wanted to go live with his daughter because all his family and friends live there. I was devastated but at same time was glad to see him go. We agreed to keep in touch and go on a pre booked holiday five weeks after he left. It took almost three years to get the diagnosis but like all the similar comments above he was not the same person and had changed due to the disease. However as I predicted he went to live with his daughter who he no longer recognised as his daughter and within three weeks wanted to come home. I had missed him and having gone on holiday I agreed he could come back home. I gave my all to be less impatient with him, ignoring his moods and strange behaviours. Like so many the conversations were no longer there. However eight weeks ago he left albeit I know in an anger mood but his daughter has taken his phone away and I have no contact whatsoever. This has been difficult and I have had many tears and sadness. But reading all the comments I now realise since he is only four years into this disease he is only going to get worse and life would be so hard (I had already been finding it hard been a carer whilst also working without any appreciation from him). I have come to terms that our relationship is now over he is 71 and I am 58. I admire all those who continue to care for their partners but now realise this last incident is a blessing. I know he will likely end up in a nursing home but where he is living now he will certainly have more people to see whereas with me that would never have been the case. I am now grieving for the loss of my partner and also the future we had planned. I just now try to hold onto the thirteen years when we travelled around the world and made many lovely memories. The hardest part is dealing with how it has ended which was on a sour note. Although friends say he will have forgotten. At least his sister is willing to let me know how he is going and our last contact was that he was fine and did not even mention me. She felt he no longer knew she was his sister and that was only seven months since he lAst saw her. This disease is absolutely cruel for both the person and the carer. I just need to move on but have been finding it very hard. Reading all the comments I now consider me to be lucky that I have escaped and only hope he is living a good and varied life as opposed to the one where most of the day he just sat watching TV.

  • Sue Jolly

    I am amazed at the number of people who are dealing with spouses or partners that are showing signs or have been diagnosed with dementia! It feels like each of you have been living in my home and watching what I am going through.

    I’ve been married 49 years. I’m 68 and he’s 75. About 6-7 years ago, he started to complain that he was “turning 70 and getting old”. He went on and on about it every single day! I finally told him that if he wanted to stop at 69 that he could because “I know people”. I threw a surprise birthday party for him with 80 relatives and friends. OMG! He was even more depressed after that! Over the past 5 years, I have pulled away. I no longer love him…in fact, I f#$%&ing hate him! But I can’t leave as I have a son and two grandkids living with us and have to provide a safe place for all of us to live. I avoid him as much as possible. He takes his keys and drives himself to the store (occasionally). Confronting him to no longer drive (I’m concerned that he will lose his attention on the road) would most likely cause an outrage and some physical actions. He’s thrown things out of anger. Our medical doctor has done some testing, but he doesn’t see the day-to-day things that are going downhill.

    Ever since talking himself into being old, he now looks old, acts old, behaves more like a child, and is all bent over when he walks. I want to give up and walk out! My immediate family has seen these changes and understand how I feel. I spend a lot of time at my younger son’s with my two younger grandchildren just so I won’t be home with him. Intimacy went out the door over 20 years ago. Even hugs and “I love you” haven’t been said in years. I can’t go back to that. I wish I could get out of this marriage, but like I said, I have a responsibility to my son and older grandkids to keep them safe (that’s another story).

    Do I feel guilty for feeling this way? Absolutely not! What we had long ago will never return. I know it’s only going to get worse. For now, I wake up each day and thank God I’m alive. I try to keep a positive outlook when I am with others. At the same time, I can’t show him any affection or sympathy because he doesn’t even seem to understand that he has deteriorated. So I mostly keep to myself or find time to spend with just a few close friends. One day, I hope to be able to live my life more fully.

    Thank you all for sharing! It feels good to know that I am not alone…that we are not alone. I will keep each of you in my prayers that soon we will find peace.

  • Angelika Schwarz

    I hate that I seem to have lost control. Everything is about nurturing my husband’s needs; unfortunately to the point where I feel totally frustrated exasperated and even angry … not really at him, but at the situation. In those weak moments, he feels I’m angry at him and falls into a depression. I’m not even free to express or live out my helpless feelings. It’s like I’m caught in a cage of emotions. And yes the guilt.. I feel so damn guilty when he breaks down and cries because I can’t keep my emotions to myself. I hate myself, I hate this illness, I hate our lives. There must be some way to stop the cycle. The only solution I can think of is to sell our house and live in assisted living quarters, where I can get help. Has anyone here tried doing that? How did your loved one adjust? How did you adjust?

  • Gloria Bales

    I have been touched with each of your comments. The most difficult thing I found was with my husband’s Frontal Lobe Dementia is his Type 1 Diabetes.
    I noticed something was wrong just after we retired and moved to the country.
    At 60 I noticed a change in his personality. We are both 70 now and I have had to deal with many changes in his personality. He changed to angry frustrated in the early years but now he is kind and polite. I lost any help I had like Day Program and PSWs who would take a walk with him. We would walk 3 to 4 times a day. Then assisting him with his 4 insulin shots a day became difficult and he had Low blood sugar unawareness and Bowel problems also had pnuemonia and almost died. He has just entered Long Term Care and they cannot handle his health problems very well. First he was in a secure area and in COVID isolation. We have had both COVID vaccinations but they are letting up and I just have to wear a mask now. I had him put in a private room and out of the secure area. It is better he can have things in his room now. He has a keyboard because music stayed with him. A TV with DVD player and I come everyday . He cannot operate these things on his own. He walks up and down the halls until he almost drops. His feet hurt. The first month his blood sugar dropped to 1.7 or it may be in the 20’s. They cannot be checking his blood all the time like I did. He has fallen and is now limping. He was found in a significant amount of urine once. They make him eat in the hall by himself because of his excessive tapping. When I am not there I worry all the time. I am still madly in love with him and just had our 50th wedding anniversary. I miss him . I have learned to love him even though he is not the brilliant man he once was. I find the finances extremely scary now with our income cut in half.
    Yes, it is very difficult to let go. You have to have God’s help and leave him God’s hands . Having such control over him for so long it is difficult to leave him in care with such short handed staff who yes, do not all seem to understand his memory is about a minute long and who do not seem to really understand Type one diabetes with feet problems etc. He can come out with some pretty intelligent words but the comprehension is not there and it tricks the staff into thinking he knows what he is talking about. I do not know how long he will live but his mom is 101 with dementia in another nursing home. She has had it about 14 years now. They both seemed to get it around the same time. Hang in there.

  • Margie Cantrell

    Thank you all so much

    For allowing me to know …I’m not loosing my mind all alone

  • Ruth

    Hi I am in my 30s and my husband is only in 40s but I’m afraid he has want his relative had LBD. He doesn’t remember things and always talks about the past. He use to be articulate and more active. Now, it’s had for him to speak without stuttering. It takes him long time to process information. I love him but I don’t want to relive what happen to his relative. His relative would have outbursts and other stressful stuff. Then we had to deal with their family. My in-laws are not so kind people who are bullies.the whole thing gave me ptsd. I just want to get out of the marriage before it gets worst. I know it’s selfish but I have already have panic and anxiety. I can’t deal with the stress. Don’t know what to do. My husband refuses to get medical care too. I stop being in love with him. I love him and want the best for him. I am not sure I want to be part of his life .I don’t know if I should stay or go.

  • Lucinda McGuire

    I was diagnosed of Parkinson’s Disease a couple of years ago, I had severe fatigue, difficulty with mobility and sleeping. I was given medications which helped but only for a short while. So i decided to try alternative measures and began on Parkinson’s HERBAL TREATMENT from Kycuyu Health Clinic, It made a tremendous difference for me (Go to their website www. kycuyuhealthclinic. com ). I had improved walking balance, muscle strength and improved vision

  • anne

    hi all
    I am saddened to read how many women lives are blighted by their husbands illness, with this in mind I wish to share my story.

    I am partically telling it to women who feel its their duty to sacrifice their lives to support a unchangeable situation; as I did

    I am 80 next February and my husband of 60 years marrage is 83.
    He now has undiagnosed dementia . and a condision known as POSTAL DROP. which means his blood g0es to his legs when he stand up and he falls due to lack of blood to the head.
    He has always had behaviour problems, and alcohol misuse. I now believe these were due to his abandonment as a baby.{but I also know they worked for him to get what he wanted therefore he had no wish to change} As a young woman I believed these could be overcome with love and care. I was very mistaken , I now feel I have never been loved ,only used. I feel I have always known this. I am an intelligent and logical kind of woman, so I don’t know why I accepted this life , other than I loved him, How sick is that. So the question I ask is how can women love an abuser. sadly I believe are we or believe that an other adult is our responsibility. if that. is true then who cares for the carer.
    On a brighter note I am still look forwards ; I know this because I renewed my passport yesterday. My best wishes to all caregivers

  • Cat B

    I am sobbing.
    EVERYTHING I’ve read here, is going on with my husband (70 yrs old, I’m 64). In fact, its now become quite clear that I’ve been seeing these changes for several years now.
    I thought he was depressed, dealing with an anxiety disorder, struggling with burn out at work or had just become apathetic in our marriage–he’s always been a self-centered man, workaholic and stubborn beyond belief. Even thought it was maybe “us”, so we had been seeing a counselor/therapist for the past two years which was my suggestion …it didn’t improve things; in fact, things have become worse with his disconnect and apathy.
    Being a nurse, I had suspected for awhile that something neuro or psychological was happening. After my husband retired (8 months ago), I gave him an ultimatum, be evaluated by a neurologist for the forgetfulness or we don’t take the extended road trip we had always dreamed of when he retired.
    The neurologist diagnosed him with MCI, but I am seeing WAY beyond “mild” neuro-deficits .The changes are impacting my husband (and me) daily in everything. They are interfering with my husband getting through the day, as he forgets conversations from the day before or the morning of and can’t stay on task to get anything done without a struggle. Everything is major frustration and drama for him. Life has not felt enjoyable for a long time now because he complicates even minor issues.
    The neurologist was flippant and unconcerned about my concerns and downplayed the seriousness of the changes I had have been seeing.
    The MRI revealed that there was some deep vascular insufficiency in his brain. Doc said “I don’t think its AD” but was quick to suggest a new AD drug soon to be “FDA approved”. Suspect to me and I believe another opinion is in order. I also think a PET scan is in order.
    EVERY comment and experience the spouses have shared here, is our situation. It making so much more sense to me now!
    I just thought he was being an as* b/c he has become so cold and disconnected; even watches me cry out of frustration and just stares at me unemotionally or walks away.
    This year, he pissed off our tax guy we’ve had for 40 years (I’m now learning that he had made multiple calls and texts to our tax guy and asked the same questions repeatedly about our tax returns and then didn’t understand our tax guy’s instructions). So our tax guy (and friend) said, “Find someone else. I’m done”, leaving us in a lurch.
    My husband always handled the taxes–it was his deal. I was happy to let him do this b/c, frankly, I was busy doing everything else.
    So I contacted our tax guy and (nearly) pleaded with him to do our taxes, explaining that my husband was struggling with a few things and not himself. I also told him that I would be handling the taxes from now on…I didn’t want to take on this responsibility, but I really have no choice.
    Yes, completing taxes is a huge learning curve and even more frustrating, is my husband can’t remember where he put all the paperwork or all the W2 forms, tax docs we need to file. I’m beyond frightened for him and for our future.
    Thank you all, for sharing your hearts with such a sensitive and private issue. I have learned much. I need support because right now, my husband doesn’t have a concrete diagnosis…my family and our friends have noticed changes, but say “He’s just adjusting to retirement”.
    If anyone can suggest an online support group, especially for spouses who have MCI but not definitive diagnosis just yet, I would be most appreciative.

  • Norma Den

    May I join this forum from South Africa? I came across it yesterday by accident, or an Angel brought it to me most likely. Just reading these comments I realise I am not alone, lonely yes, but so many of these stories are similar or the same as mine. I’m 76 & hubby 82, married almost 58 years. Family are as supportive as they can be, but my daughter is a busy midwife, does so much more than her duty towards us and helps beyond what one could expect. She looked at this today and has the same feelings as I do, friends seem to have melted away, though some practical strangers are being very supportive.

  • Christine Mann

    My partner and I have been together for 5 1/2 years now. I lost my true love 9 years ago to cancer, a 4 year fight. I ran away at the age of 67 to Southwestern New Mexico which I love. Met S 2 years after I was here, married in church but not legally on paper. I always noticed something was ‘off’ for these past 5 years and could not put my finger on it. Now I know, we split up 5 months ago which is still killing me. He was in denial of his dementia condition, but now after seeing him for the first time in 5 months finally admitting he has problems. But he still blames me for the fights and breakup not realizing they were caused by his actions and words. I did not want this to end like this and I still feel guilty I asked him to leave even though he ‘tripped out’ . Get a support group or counselor, I did last December and was helped through this dramatic change in out lives. The guilt will never go away. Pray.

  • Staci

    I read nearly every story. I’m 64 and going thru the same. Also my husband had a mengioma last year and now it has returned. It helps me to not expect anything from him emotionally anymore as it is a waste of time. There is no right way or wrong way. We are all trying to survive. It is hard, lonely and just plain awful. Mine has vascular Dementia. I get it.

  • Anne

    I have read a lot of your stories and like many of you I am trying to survive. My husband of 58 years has vascular dementia. Today I feel quite angry and lonely. Your posts have helped me. Thank you all.

  • Sharon Douglas

    My husband was diagnosed with early stage Alzheimer’s and early stage Huntington’s disease. He is aware of what is going on some of the time but he refuses to bathe or do any of the things the doctors tell him. He could hardly get around because all he does is sit in front of the TV all day. He refuses to go for a walk or to a senior center and he refuses to bathe. I was beside myself as we cannot go anywhere when he is dirty and stinks. I didn’t know what to do, I could not physically overpower him and make him do things and when I ask him he tells me I am not his boss. There has been little if any progress in finding a reliable treatment. His Primary care provider introduced me to Kycuyu Health Clinic and their amazing Herbal treatments. The treatment is a miracle. the disease is totally under control. No case of delusion, disorientation, forgetfulness, making things up, hallucination, Muscle weakness, jumbled speech, loss of appetite or confusion in the evening hours.

  • Curt P.

    My wife & I were together since our teens & married at 20-years-old. I just turned 61-years-old. She was diagnosed with a primary brain tumor (not alzheimers) and due to the brain surgeries, chemotherapy, radiation treatments & tumor has severe dementia & physical handicaps. I and my daughter has been caregivers for 16-years & I wonder what our next 16-years will be like. My wife survived the terminal brain tumor thus could outlive me. There are no support groups for terminal brain tumor survivor caregivers so here I am reading your sad story’s. She however is nice but the dementia is significantly impacted her/us. She is not capable of much communication & I still am in my career thus still working. When I retire in a few years I shall have a nice pension & more time to care for her but my job is demanding & I am exhausted an mentally taped-out after all these years. I miss an emotional bond with the opposite sex and of course have not had a sex life for 1 1/2 decades. I am sad. Financially it has been hard too but I have financially recovered from those initial huge medical expenses not covered by insurance as we did nonFDA experimental treatments that were also out of network for our insurance. I am sad for everyone in this group & wish I had a social group to join but terminal brain tumor patients don’t usually survive & thus no groups. I add I love my soul mate wife with all my heart. One day she will wake up & not know me but I will know her. Past few days I been reading these posts in bed & it helps to see others in caregiver situations with a spouse with dementia. She was a very pretty athletic 45-year-old when this happened & she kept our social life going. All our friends have move on as married people hang out with married people & singles with singles so we are right in the middle…. Are’t we…? Sorry we have this in common. Take care of yourself too everyone… yes, life is lonely now…

    • alice High knaub

      These comments that I just read were all spot on! most of us can see ourselves in all of them. What we are going through is ABUSE! not intentional but nevertheless ABUSE! This country does not care at all for what carers are going through… and most carers do not have the money for the expensive nursing homes that promises to take care of the afflicted.. There is no doubt in my mind that carers are very likely to die before the spouse or partner. They have absolutely no daily stressors and remember nothing of the mental, verbal and physical abuse. Yes! you can have carers chat rooms and get togethers but something more needs to be there to help . Why can’t the government step in and have organizations that have people who will come and be with the affected I myself have been trying for over 2 years to get help from the VA all to no avail. It is a giant behometh that needs a total tear down and start all over again. I have contacted my government leaders and they might mean well but nothing gets done. This tragedy about caregivers is heartbreaking, and it seems like no one is listening. They hear you but they do not listen. We are all in crisis mode…

  • Michele Wilson

    My husband is 58 and has been diagnosed with dementia. He has not been able to work for 2 years. I have had two jobs and am in End Stage Renal failure. I am on nightly dialysis and am waiting on a kidney transplant. I have come to resent my husband for not being the one to take care of me. We are working to get him disability. I should be getting disability since I am in organ failure, but you have to have commercial insurance with Medicare to get a transplant. He promised me that he would take care of me during this illness, but it is the other way around. I love him, but I am only 48 and I am tired. He just sits around or lays around. After work, I still have to clean house and cook supper. He uses the excuse that he just doesn’t think about helping. I know this sounds harsh, but I see people with down syndrome working in the grocery store and think, why can’t he do at least something.

    There is no intimacy anymore. I feel more like his mother than his wife. What do you do to change the way you feel. I feel guilty that I feel this way, but it is what it is.

  • Elizabeth A Newton

    We need to stand up as women and stop killing ourselves by taking care of someone who will most likely die after us. The statistics are horrible. I refuse to longer care for my husband. I will not do it. Maybe it is ethically and morally wrong but he will wind up on care anyway after I am dead due to stress. I say no more and you should too.

  • John

    I hope it happens to you someday and you get the same sick treatment. You are deserting a loved one. You are a terrible person.

    • viki

      John- you are a troll and need to go away. The authors on this post are expressing feelings of exhaustion, frustration, anger, and isolation just to name a few. Caring for someone with dementia is isolating and emotionally draining not to mention financial concerns. People need a safe space to vent and to get some support – if only momentary. Do not judge another until you have walked a mile in his/her shoes.

      To those to have spoken here, I hear you and I share your feelings. I too am exhausted and walking this road alone since my loved one is now on his own path locked inside his mind. I wish I could change things for you as I wish I could change things for me. I thank heavens for the Researchers who are seeking cures but in the meantime, early onset dementia has captured my DH and I am a prisoner by proxy. Sometimes life just sucks…..

  • Awilda

    This is the most physically and emotionally devastating experience I have ever had to deal with. At 72 my husband has Lewy Body Dementia. I often ask myself what have I done to deserve to be in this situation. I don’t know. But the stress is such that I’ve been experiencing mental fog, slightly off balance, for over a year. The doctor says it’s stress. My husband is kind and jocular most of the time unless he gets into a psychotic spell in which he gets angry. I’ve been trying to develop the skills necessary to survive him, but one never knows!
    I envision my trip to Europe, savoring the sights and sounds!
    It’s a hard road… Will I make it?

  • Lyzette

    Spouse’s entire family has issues with Alzheimer’s/dementia to varying degrees. He is 66 & has always been a difficult person to deal with. I’m 6 years younger. His memory issues began about 8 years ago. We noticed alot of forgetfulness with misplaced items, what he was saying in an conversation, repeating things and asking the same question several times in a row. Then he began having issues at work, not recalling people’s names even with help of office personnel directory with pictures, forgetting where documents were placed on computer files, excessive use of post it’s and scraps of paper with parts of conversations written on them, names, times, dates and pertinent details. I’m not exaggerating-hundreds of bits of paper. He retired a few years ago. He has good brain days and bad brain days. Bad brain days means he’s forgetting conversations, what he ate, if he ate, details about what I just said, what the name of a song is, stumbling over words, forgetting how the computer works, or how the thermostat works, or how his phone apps work. Has forgotten what direction to drive when going to a store. Loses his glasses everyday-and he has dozens of pairs. I usually find them all for him and put them back in their special easy find spots. He often forgets what I’ve said just 5 minutes ago, and then argues with me if I happen to look at him like “I just told you.” Unfortunately drinks alot and that makes his memory and crappy attitude 100 times worse. I’m so exhausted with him and his anger, accusations, (says I lie, hide things, move things, and make his life difficult on purpose) and the pouting. Acts like a little child during bad brain days. He refuses to acknowledge his excessive alcohol consumption and after he’s been acting out for days he behaves as if I’m the bad guy. He does alot around the house and takes care of his family quite well, he’s not incapacitated but I can see it getting progressively worse-bad brain days happening more often and for longer periods. He has been to his Med Provider and has decided against taking medication. I asked that he reconsider but he won’t. My heart has been broken in the past by him and now with this added onto everything thing I’ve been through…I don’t know how much more I can handle. He says he’ll stop drinking and try to not make me cry but that’s usually only lasts about 5 days then he has a bad brain day, starts drinking to deal with it, and we’re right back at square one. He won’t listen to reason, & he won’t get help. I’ve asked him to as have our kids. He says it’s fine and he’ll be dead soon so stop bothering him about it. I give up. I gotta concentrate on myself and stay healthy so I won’t fall into the vortex of resentment and depression.

  • Lenna

    Finding this website is a godsend. Thank you to everyone who posted about their situations so openly and honestly. My husband has severe dementia due to a number of health issues, the last of which was a stroke four years ago. He has absolutely no ability to form short term memories and his long-term memories are very spotty. He is like a young child cognitively. He is sweet and easy for me ( much more so than before his stroke!)but not necessarily for caretakers. He has no awareness of his incontinence and refuses to change his clothes when he soils himself while in their care. Because of this I don’t see how I could ever leave him with a caretaker for many hours or overnight. Like so many people have said in their posts, I’m sure he will outlive me and I feel like this situation is slowly but steadily killing me. I still love him very much but the type of love has changed. It certainly isn’t romantic love, more like what you feel for a child or even a pet who is completely dependent on you. I know that if he had any understanding of his situation, he would beg to be put out of this world.

  • Rory

    It is so sad to read these posts, yet strangely comforting. I am 78 and my husband is 92. We both have multiple health problems. We have been married 31 years, his third marriage and my second. No divorces, though, just widowhood. He has always been a difficult person — selfish and narcissistic. But we had some good times and I thought he knew I cared for him and did my best. I cared for his disabled daughter for 26 years without complaining. Now, though, it’s like the person I married died. He has severe dementia, mostly vascular. He has stage 4 kidney disease, congestive heart failure, arthritis, clogged arteries, and more. When it became apparent that I would soon no longer be able to care for him, his son and my daughter and I got together and arranged for a place in a nearby nursing home. Medicaid is pending and I have to learn to live much more frugally, as income is nearly halved, while the bills stay the same. The $75 of his income that Medicaid allows him to keep doesn’t begin to cover his personal expenses — he doesn’t like any of the versions of these products that the nursing home provides, so I must buy toiletries, incontinence products, and the only flavor of Ensure he will accept. And I would gladly manage all this. But he does not acknowledge that he has any physical or mental illness. He claims that I have made up all these maladies so that I can control our finances by imprisoning him. When I visit him (daily) I am subjected to a tirade of verbal abuse that continues until I leave. He calls me often and does the same thing over the phone. He recently got COVID and it was a relief to not be able to visit for 10 days. And that makes me feel guilty. I hate that he believes these awful things, and I dread visiting. I just wish it would all be over. My daughter, who lives with and cares for me, is terrified the stress will kill me, and frankly, so am I. I don’t want to die for him. I am reaching the point of not being able to cope.

  • Jean Manifold

    I have been looking after my husband for 21 years with MS and now dementia, I crave sex and affection and feel guilty for feeling this way. Is it wrong to just have someone else for just a sex partner??

  • Nancy Whittaker

    Wow, so many similar stories, including mine. It’s ridiculous that there is so little help for this condition, and the help that is available is insanely expensive. What kind of society allows this to happen? It’s a nightmare.

  • Mary Burns

    In one way this has helped me to realise I am not alone with feelinh how I do, but, on the otherhand there does not seem to be any light at the end of the tunnel.
    I have several medical conditions going on myself, I know my partner has several issues aswell as vascular dementia and Alzheimers, I nearly died at the end of May I was rushed into hospital with a particularly nasty strain of pnuemonia, my partner did not tell my sister, my daughter or my son. They were worried as I wasn’t answering my phone. I have changed my next of kin now as I have been told that because I have Broncietasis and Emphasema I am open to infections. I was told I wasn’t to be my partners sole carer but I have ended up being just that as there just doesn’t seem to be the help. While I was in hospital his family rallied round to help him but more or less as I got home they, apart from his daughter, disappeared. She lives miles away and is a single parent! My son and daughter live miles away as well. We used to live nearer to them but my partner wanted to move nearer ‘his family and friends’ Hus main friend died early this year, when my partner realised his friend was very poorly he wouldn’t go to see him. That is how he handles things ‘head in the sand’. Sorry I have waffled on a but, that is the main thing I miss….being able to have a proper conversation!

  • Grace Grimaldee

    I am on cancer number 2. Husband of 53 years has major cognizant loss and giant inoperable brain Aracnoid Cyst, so full Alzheimer diagnosis will not apply. We are 74 & 73. He lives in a silent world. Doesn’t comprehend the spoken word. Can barely make a sentence. Still fully functional in personal hygiene and keeping up with his Rx drugs. I am blessed in those ways, but every day is full of surprises and challenges. All vitals like blood pressure and others are teenager numbers. He will outlive me because he is driving me crazy. When we go anywhere it is same as having a corpse in the car with me or at restaurant table. There are many things he has done that qualify for total committing to memory care home but we do not have 10-12K per month for that. I have not read 1 solution to caregiver problems other than hire a sitter so I can go to lunch or dr appointment out without him or find a daycare for this kind of illness. These are temporary solutions to a very permanent problem. When I return home, the monster is still there. People tell who have no experience with this tell me, “Awww, he can’t help it.” True, but I can’t help feeling like I am living in a never ending nightmare.

  • Amy Deacon

    I am so grateful I found this thread and for the brutal honestly of everyone who wrote a bit about their story. My rage towards my husband’s early onset dementia (we’re still fighting whether its FTD or EOA) left me with breast cancer, six figure debt (that my husband acquired in secret) and two children to raise alone. And with all that – I was/ and still am the bad guy. Family and friends criticize and judge, and eventually tuned their backs on me and my kids.

    I was so full of anger, hatred, resentment – but now I know I am really full of sadness and fear. No one understands how stressful and suffocating being in this situation is. The husband gets a pass because he is sick. However, while his diagnosis explains his actions, it does not excuse his actions or erase my reactions to them. It’s not fair that I am expected to act like Mary Poppins through all of this. I am only human. I have genuine feelings (whether positive or negative) to all the shit he puts us through – I don’t like this new person, in fact I despise him.

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