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.

203 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.

  • 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

  • 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?

        • 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.

      • 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…

          • 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.

        • 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.

        • Nancy

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

        • 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.

        • 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.

      • 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!!

      • 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

        • 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?

        • 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.

    • 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

    • 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

    • 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

    • 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. …

    • 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.

  • 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”?

  • 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???

  • 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

  • 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.

  • 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!

  • 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.

  • 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.

  • 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.

  • 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.

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