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
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.
284 thoughts on “Is it normal to fall out of love with your spouse?”
Janis Rahman
I have been working with someone who has Alzheimer’s for almost nine years. I have recently been reading “On P,unto” a book by Greg O’Brien who suffers with early onset Alzheimer’s.
This has given me so much insight into the emotional upheaval of this disease.
I encourage anybody dealing with this horrible disease to read it.
Lynn
Thank you.
Lynn
Can’t find it in Kindle books
Pat
My husband of almost 40 years had early on set dementia. It’s not that you don’t love him anymore it’s that your marital status changes from partner with love and care for each other to care giver with no intimacy or affection which is very difficult. I was fortunate as he died after a little more than 6 years it was very difficult as I worked a fill time job out of necessity and tried to care for him. I never knew what I would find when I returned from work. Federal and state programs only help those willing to quit work to get help. Eventually I had to seek help and put him in a nursing home as I couldn’t leave him alone. He only lasted a few months. Looking back after 12 years without him I still miss him terribly. I am in a new relationship which is not anywhere near what I shared previously. I am happy I am not alone, I believe you only get that one shot at head over heels in love once in your life.
Jo
I have known my husband had early dementia for two or three years before he was formally diagnosed with LBD last January. I was pleased to have a diagnosis and know it wasn’t me and I was also excited that medications would help us have at least a year of near normality but his condition has worsened quite quickly and his passive negative attitude and psychosis is really getting me down. You say that to are happy your husband only lived 6 years I pray that we don’t have to suffer that long. I feel young and energetic but his condition and what it is doing to our lives frightens me as I WANT to live and he has given up. He wants me living on his level because my energy annoys him. I love my husband he has cared for me for the past 50 years and I accept it is now my time to look after him and I am trying really hard but sometimes I wish I could run away and be free. Thank you for giving me the space to have a rant!
Laura
I miss my Tony. He has LBD and I have felt so alone in so many ways. Lost as well.
My Tony was always the one who would pick me up and now I stand alone even with him standing beside me.
Sheryl L Hogan
I share your feeling of aloneness with them beside you, it is more sad then them being gone and left with the memories.
Dee Ricketts
I understand, my husband was my best friend, we did everything together. Now I never know what to do. Sometimes we go to an area we use to hike and he loves it, other times he thinks we are on the wrong road and is anxious. I try to plan things for us to do together, but I end up in an argument allot of the time, and it defeats the whole purpose.
sharyn Thomas
My husband has Parkinson’s with dementia. I am very alone and lonely as my children live a long way away.
They have no idea how it is!
When we speak on zoom they think I’m taking over the conversation. They say “let dad speak” He does the right thing for a couple of minutes, they are happy he has let them know things are “fine”. I’m like a duck, calm on the surface and paddling underneath like mad to keep things going.
Trudy
My husband was diagnosed with LBD 4 years ago. At the time, the Neurologist told us he had 3 good years left. What’s that supposed to mean? There have been so many changes since then. My David has gone from a strong, dynamic, force to be reckoned with individual to a frightened little old guy that needs help dressing. I still have a hard time wrapping my head around it. I have run the gambit of anger and guilt so many times. Then, I get angry with myself for getting short with him and have to dig deep, close my eyes, take a deep breath and strive to put things in perspective. I still love him, but in a different way. He wants to be intimate, and I try, but when your changing wet pants, cleaning bottoms, and wiping drool, it’s hard to see him the same way. We have 7 children so it’s not like we never had that in our lives, it’s just different.
Thank you for the question. I know I’m not alone, but like so many, when you’re in the trenches, sometimes it feels like it.
Nancy Beardslee
I will check out that book.
My husband had sepsis and then brain damage for the last 4 years. I am 72 and caring for him was physically and emotionally draining.
After 2 years I went to the bank to see what I do. I took money out of savings and additional loan. I visited him several hours every day. He did come home to die for his last 4 months. I have never felt bad for having him in a long term care facility.
Carol Wright
I was helped by dropping expectations and verification of the historical ME… I did not expect nor demand that MOM recognize me as her “daughter” nor expect that she would appreciate all I did for her for 13 years.
I did not dwell for the loss of the person they WERE. I realized I could love a cat/dog for what they were, and not expect conversation. I imagined mom as a dog/cat personality. As her mind deteriorated, I related to her as “bird mom’..then my pet iguana.
What you can experience is pure deep BEING, a recognition missing ironically in our daily interactions
Kris Alvarez
Thank you. This is extremely helpful.
Martha
What an imaginative thought… loving your cat that can’t talk to you, etc. I believe this idea will be very helpful to me as my husband’s dementia progresses. Thank you!
Charmaine Liang
I thought I was the only one. Over time you fall out of Love with your loved one, but the feelings I have is deep pity and you almost become the parent to the Alzheimer’s sufferer. I can go on forever, but at a time when we should be travelling & enjoying our lives together, with the children more grown up now, you become a parent to a young child again. How sad & heartbreaking??. My husband has had early onset for about 10 years now, he is 66. I am 58.
Bobbie
Wow. That’s me!
Maureen
That’s me also except that I have been diagnosed with terminal cancer. My thoughts and emotions are all over the place
Merafe Peschke
My husband’s since 2009 with Parkinson so many years taking care of him my feeling tottaly change bcoz of my stressed, anxiety, depression were not conversation his answers if I asking something.i CNT handle anymore everyday I cry.
Pat W
I have the same situation. You are not alone. This is so difficult with no help. No talk, only nasty comments from husband in nursing home. I am not wanting to go to see him but must, as nobody else goes.
Mary
This is me too . My husband has BVFTD and is in a nursing home. He says horrible things to me and never hugs me anymore. It was our 54 th wedding anniversary yesterday nothing from him not even a kiss. I too question my love for him anymore. It is so hard . I see all our friends retired and enjoying their time together but not us. I cry frequently and really feel low and just a means to his needs. It is lovely to share with others experiencing the same.
Mary
Me too. His demands and verbal abuse to me is awful. I am just a means to his needs. Likewise I have to visit the nursing home as no-one else goes. It is very difficult
Marty collins
I have recently been diagnosed with dementia. I DO NOT want my beautiful wife to
Go through this. What should I do?
Kristie
Wow. I think I have it pretty badly too. Not only is my husband 75 and has severe alcoholism, he has alcohol induced dementia and is blind in his left eye. He ghosts me to go get alcohol when I’m sleeping and I’m left looking for him everywhere. I’m exhausted. Confused. I love him so much. I have Attention Deficit Disorder and self medicate. I need to find him to say that I love him and I’m sorry. I treated him like all I wanted him for is his money. I even cheated. I was wrong. I don’t want to lose him. I’m scared. I don’t know what to do to find him. He’s out there somewhere but I don’t even know where to start looking. I had a tracking device on him but it said it couldn’t get wet and he took it off to shower and I forgot to put it back on him. Nobody will help me find him. Not even the police. I don’t know what to do.
Christopher Evans
Me too… We’ve been married now for 5 years this year together for 7 years. He is 55 now he was diagnosed at 50 I am 44 and I had to get a part time job just to get away. My mom also has it she is in late stages.. I noticed that even I am having nerve issues – my head shakes when I think of him dieing.. He is my world I love him but there are times I say things out of anger and I regret saying it later cause I know he can’t help it.. So I feel really guilty of emotional abuse towards him and hate my self… He has become physically violent at me in the last 5 years the last time I was paying rent and he came inside the business office and started cussing at me and ripped my shirt he just bought me about a month or 2 before that. Anyway they called police he was arrested for domestic violence and battery and not to make contact with me.. but I made contact with him and everything has been ok.. since we left where we lived. I just don’t know what to do minute by minute most of the time.. He always talks about his days as a international Corporate Attorney of 25 years he started at age 21, he graduated high school on a Friday that same weekend on Sunday he also graduated college with his 1st degree at 15 but now he just don’t care about anything and I’m very sad to see him like this…
Shirley Czerniawski
I don’t k ow why I say mean things to him because after I get him in bed for the night I feel so bad and then the next day I try harder not to say mean things and I try harder to show him love he still tells me he loves me
Debbie
OMG! You are all telling my story. My husband and I are both 67. He was diagnosed 3 years ago. I am RN and noticed the changes and asked for a meeting with his doctor. Testing confirmed. 2nd marriage for us. Been together 20 yrs and married for 16. He now asks me if I ‘live around here’ and talks about his wife, Debbie, but doesn’t seem to that is me. He thinks I am someone hired to take care of him. ? One of his daughters takes him to lunch once a week. The other one is in denial and rarely makes contact. I am so burdened. Prayer is my refuge.
Everyone take care and be strong.
Andrew
Mine is similar, the deficits are outweighing the pros, no motivation, she has died yet lives, dementia at 38 or diagnosed, and she now just is bombed, nothing is left.. Thanks for sharing, I am struggling .
Sue Vanlaanen
This is for Marty Collins. Marty, you asked “I have recently been diagnosed with dementia. I DO NOT want my beautiful wife to
Go through this. What should I do?” My response: Dementia’s path for every patient and every caregiver is unique, but it’s probably unavoidable that there is a difficult road ahead for you both (I know, I’m a caregiver living through the same anguish many have expressed here). You know what I most wish I had from my Alzheimers-addled husband? Messages from his former self, telling my what a great job I’m doing, how he loves and appreciates me, with reminders of the person he once was and the happiness we once found in each other. If I could have maybe a year’s worth of notes to open and read once a week, and then reread, I would not feel so alone and disconnected from the husband I pledged myself to 28 years ago.
Joni
We have been on this journey for 2 years now, it became noticeable when my husband was 53. Too many things were happening that had me suspicious, because his dad had early onset at age 59, so I watched my husband more closely due to that. It took until this past June to finally get a diagnosis of FTD.
He is a different person. I sit in silence most of the time. My 18 year old is at home but she has a life so she’s not always home, and right now with Covid going on, I’m limited to outside visits with my granddaughter (my oldest lives in a fearful Covid bubble) so, needless to say, I’m lonely.
I’ve become verbally abusive as well. I’m so angry all the time. I’m so relieved to know I’m not alone. I am always so ashamed of myself.
How do you get through the loneliness of being single but married? I just turned 51. I’m not ready to be done with companionship and mutual attraction.
I find I’m tempted to step out of bounds, so to speak.
How do you resist, when you’re feeling so vulnerable.
Penelope
Oh my! I am 81 and caring for my 86 year old husband who has significant dementia but still has most of his “being present “ mind. I cannot imagine your pain but know that someone out here is thinking about you and hoping you can find the strength to realize that you can only do so much and then you have to let go.
Linda
My husband has had early onset for 6 yrs he’s 64 now and I’m 59. He was doing really well till we moved to FL last year to be near my son. That changed everything. He’s been going downhill ever since. I work from home thank god as I couldn’t work outside the home now. I feel like I cry every day. I’m having extremely hard time dealing with this. I’ve gained so much weight He really needs help doing almost everything now. I get so angry and resentful sometimes. I know he can’t help it. I know I have to reach out to talk to someone but I find it difficult to do it
Mary
Linda n all others… I know that I feel stuck a lot of the time too. It seems so hard to make a phone call to reach out. But if you can push through n do it, you’ll feel temporarily better. Or ask someone to call you on a regular basis. Looking forward to something you enjoy doing or being with a friend you enjoy being with…makes all the difference in the world. Can you call your local Senior Resource Center or Alzheimers Association? Please connect WITH Teepa Snow online. She speaks of Positive Caregiving n is an expert in dementia care n is nationally known. Also, for everyone…i put pictures of my husband n I out all around the house to remind me of our love n commitment to one another in sickness n health…rich or poor…for better or worse. I try to remind myself to SMILE n celebrate any Joyous moments that occur. I do get 3hr breaks 4x/week n although I’m usually doing food shopping or misc errands …sometimes I get in a walk at a nearby park or scenic location. I pray a lot with my husband n read aloud our devotions. We sing songs together. He likes to read n read n read the same thing over n over. But it also helps him feel he’s contributing. It’s taken me a long time to get comfortable with the VA Support group but I’m glad I’m in one. Good n fun Memories don’t come to me on their own, but it’s worth the effort to relive those times to give me a sense of calm. I’m glad I saw this site as I’ve never heard anyone say theyve fallen out of love with their husband before. I totally get that! But I don’t want to stay there. So I pray I can learn to love him in whatever present or unprejudiced moment we are in. He’s still my husband n although I’m his caregiver…I’m first his wife.
Mary
It’s Mary again. I was also going to add n forgot to include that medication has helped a lot of my husband’s inappropriate /dangerous behaviors and angry outbursts.
Also I couldn’t figure out how to change the word unprejudiced to “unpresent” in today’s earlier post.
Lastly, does anyone from the Alzheimers Assoc ever respond to any of these posts?
Thank you.
Lori
That’s me too. My husband is 67 and I’m 59. He was diagnosed three years ago but we’ve noticed a change five years before then. It’s hard for anyone to imagine what I’m going through.
Deborah Demeo
Omg..You are living my life!…I loathe this disease and I can honestly say I have fallen out of love with my husband… He has early onset for 3 years …hes 62..and I’m 56..living a nightmare that I truly cant handle ..
Elizabeth
I guess I too have become an unwilling member of the sisterhood. I hate coming home from work any more. The minute I walk in it’s all the things that went wrong during the day and left for me to fix. Am I a horrible person for wanting the day to come when he’ll need a facility and I can have some semblance of a life
Lily Long
I also think I a part of this sisterhood too. Unfortunately my husband still functions on high level in areas of finance as he was the president and coo of one the largest companies in the world. He can fool people and refuses to be tested. But our life has become a living me hell. He now treats as if I am one of his former employees and does not want to see people at all. He refuses to see a neurologist. He has many health issues, now gets words very confused and is obsessed with the news. Misplaces everything, needs help dressing. Has left his phone in the refrigerator etc. He is very angry with me.
Others soothe him, such as doctors and attorneys, staff not wanting to be cut off the money train. This has been going on for about six years. I do not like him anymore, but still want to care for him, but feel it may kill me first, even though I am quite a bit younger. I am so isolated, not being able to share with others. I do not have family.
Jo Ann Fowler
Well you are my story too. My question is
What do we do to fill that need for companionship
My husband is still high functioning but loves to go shopping. He would be happy with a closet full of new clothes weekly…however forgets they ate there. In church he puts his arm around me but this is just routine. He is a tv addict. Old repeats daily he has seen before. Sad..I want someone who puts me first again. How do you all fill that void????
Debbie
Dear Lily, it has been a long time since you wrote your post. And I hope that things turned out better for you. What you describe is what I went through for a year and a half, he could fool anyone before he was diagnosed, everyone thinks of him as a cheerful very sociable person, and they have no idea how awful he was and now is. It took a year and a half for me and the gp to get him to accept going to be tested properly, and the meds worked great. before he was diagnosed I described to some one that I felt like a little insect with it’s limbs and wings being torn off little by little, i had to haver anti depressants. I described him to myself as a gorilla chewing on glass when he used to literally shake with anger in my face, threaten all kinds of disruptive things, tell me to leave if I didn’t like it. I came on here this evening having typed in “Alzheimer’s – my husband feels everything is pointless”. He has hurt me so much, but today like loads of other times, it’s all about him, he doesn’t care about our home, the garden, and feels that we should break up, he asks why I stay, he accuses me of being on the telephone having a conversation. I could go on, but the point is he would rather disrupt our life together by breaking up and not understand how that makes me feel. I fell out of love with him in the year and a half before he was diagnosed, how could i love someone who was destroying me?. I stayed, just like so many out there And so many of us cannot honestly, truthfully say that we are staying because we are in love. I love him, and care about him and remember what our short life before Alz was like and it was wonderful, I’m ashamed sometimes that I am here because I need security, continuity, and yet I also don’t want him to be alone. Today, like many before I just don’t know what to do, don’t know how to respond to him.
Sue
Oh my God. Your situation is identical to mine. I am looking for support, venting, questions, etc from someone whom is in my situation. Would it be possible to communicate further? Thanks in advance, as well as I do understand that our lives are unnaturally chaotic & mentally incapable of doing otherwise normal or easy things. I’ve refered to this as “my cup has reached it’s capacity or my accounts in the negative”.
This is literally going to kill me & I absolutely know it. I can’t…
Sherise Scott
I understand quite well. My husband was an attorney, there is an age difference of 26 years. My husband was diagnosed with dementia in September 2019. However, earlier in May of 2019 my husband was driving home from work and hit another car. I was on my way home when I saw his car parked on the side of the street. He claimed the other driver was at fault but I knew better. The worst for me is when my husband kept saying “there is something wrong with my brain.” Even though I always stated the opposite to him he knew something was wrong. If I can say anything to you that is to get his doctor to revoke his license. Get your finances in order. My husband had a law firm. I was fortunate to have worked and manage the office. Get your locks changed so he doesn’t wander. Get cameras in your home and start locking things up. My husband has a thing for salt and pepper shakers and silverware. I had to lock them up because I would find them all over the house. Right now, I just ordered some adult diaper. He can still us the restroom but he has have problems with wiping and he wont let me do so. It so much, but remember “this too shall pass.” What I have learned is having patience and compassion. Yes, I have been very upset at my husband because they will do some mean and strange things. If he is in the VA, get help there.
Kay Thurston
I am married 6 years been together 12 to a now retired anaesthetist. I was widowed at 50 this is my second marriage. I noticed 8 years ago small lapses in my husband’s memory which has now deteriorated further, he is constantly on the phone to banks etc. As passwords are a nightmare for him, he constantly loses items, his short term memory is becoming shorter by the month and he has become obsessed with his diet and health and covid has increased this obsession. We argue and I guess have tolerated each other for sometime. He was a very demanding, controlling person before but has become more so. I am writing this have left him over some petty argument and him informing me he thinks it’s better we part. I don’t think he realises how much input I have in his life for him to function.
A divorce feels imminent and I really didn’t want this. I have cared for a very close relation who had dementia so understand the commitment needed to give to care for someone with this illness and was willing to care for him. He helped me so very much when I was widowed and now I feel I am giving up when he needs me most. He will not go to the Dr as he said it is just an aging process but it is becoming more obvious everyday. I have told a close friend of ours what I think his problem is as most people would not believe me as he can still function very well in lots of ways.
Its makes me very sad to think about what will happen to him as his children are not and never been in contact with him for many,many years and the rest of his family I feel will take advantage of his diminishing memory…this is happening now.
I know my life would be very much easier for me to walk away like he wants me to….but would it be happier knowing that I let him down at a time he needs me? I don’t think so. This is a terrible illness.
Anthea Millier
i feel the same
Barbara Hannah Bready
I am in the same position, life seems so sad. Actually the best part of the day is when he is asleep. He treats me as if I am the help, will not listen to anyone fights with me. I am so sad.
Sue Bates
I feel the same also
Hanna Peterson
This is for Cherise Scott: there is an after market Bidet that can be attached to any toilet. It allows a warm water cleansing and then drying after a bowel movement. Look it up on Amazon.
Pamela
I feel exactly the same and have the same thoughts. Thank you for helping me not feel alone
Sue Bates
I feel the same also. I feel like I am going to die. This is killing me.
Claudia Veiman
I feel the same but am 76 and I am sure he will out live me. So I pray for strength to keep going ( the crazy one day at a time) I do get out to play bridge or visit my sister
Susan
I also dread coming home. The weekends are torture when we are together all day. He looks for things to needle me about and he is always angry with me. I say things to him that are not nice and the guilt consumes me later. Not sure where the fine line is as to if it is the dementia talking, or him. He does not take care of any huge decisions or finances. Everything has been on my shoulders for some time. I am 66 and he is 69. I try to keep busy, but if I spend too much time away he gets jealous. So sorry for what you are going through.
Lisa
I had noticed subtle changes in his personality and attitude towards me over the last 3 years, we have been married 19 years, he has recently begun to lose things and tell me I moved them. He has also made some rater large monetary mistakes .
He acts angry and says these things are my fault. He is pleasant sometimes but can change to sullen and quiet in a moment.
He is very jealous of anyone or anything that takes me away from him.
He is 83 I am 60 and i am miserable and do not know where to turn.
Jean
Now I know I am not alone. My husband has been progressing for 9 yrs. I’m younger than him by 8 yrs. I had to quit my job to take care of him. I’m no longer able to get paid help to come in so I can get out for a few hours any more. He has to know where I’m at all the time. His new thing now is he just wants to die. When he takes none of his word my any sense at all. I hate my life.
Kelly
My husband was diagnosed with early onset parkinsons 5 years ago. I had to google dealing with spouse with Alzheimer’s looking for info on how to deal with someone who is no longer who they were and you no longer like them. At all. Can’t be in the same room without being angry and resentful. Parkinsons and the parkinsons medication can change a persons personality entirely. My husband was a practicing trial attorney at my practice 5 years ago. Now he is home and resembles part meth addict part Alzheimer’s. I still work double to pick up the loss of him and still have two teens to get through college. I always did everything other than what he did at work. Everything. And worked. I never got thank you’s or bday or Christmas presents. I never got any support with any problems running my law practice that employed him and gave him tons of freedom to enjoy time with the kids I didn’t get. But I came to terms with it because he was fun, fun for the kids (no parenting but fun) and being together was generally happy. Now all that is left is all the bad qualities I decided long ago I could deal with because I really liked being around him. The lies about money, selfish, destroying cars, Never appreciative – let it go. Now it’s all lies, breaks everything, he is depressed and selfish, guilts kids who don’t want to be around him, never did anything for himself before and isn’t going to try to overcome any challenges even for the kids. Nothing to like anymore. I hate who he is. I’m angry because I never know what is the disease and out of his control vs what is just truly him, minus the gregarious part because he is only concerned about his state of ill being. Which is horrible for him I know. But I also know if the tables were turned he would not do anything for me. He’d tell my 15 yr old daughter to shoulder it. And if I was gone he’d guilt them into never leaving and caring for him. And knowing that makes me deeply hate him. Followed by guilt. Then hate. Then guilt.
Joy
I too feel that living with my husband who has had Alzheimer’s for four years is killing me. The stress is unbelievable. Having to keep all the balls in the air, find things he has lost and put up with his bad moods is making me feel suicidal. He was such a lovely person before the illness but he is extremely deaf so I find repeating things louder and louder exhausting. I lose my temper with him and then feel very guilty, but trying to understand his frame of reference is making me doubt my sanity. My heart goes out to all of you living in this hell.
Nancy
My thoughts too. Feel guilty but he exhausts me daily.
Debbie
Oh how everyone is singing my song! My husband is 71, I am 65. He has been having issues for more than 10 years and has become less and less capable in the last several years. I had to retire to take care of him. He is decent in the morning, even though we have conversations that are nothing, just about the dogs or he wants SEX. All the time, he talks about it, like 150 times a day. Problem is, I don’t know this man anymore. He needs help with everything and I am not attracted to him. He is not who I married at all. In the afternoon he sundowns and goes back in time to high school. I become his sister or his mom, he has no idea who I am, not even my name. Wants to go home…I have no where to take him. Dr. says it is time to put him in a home, but I can’t afford it. He punched me the other day because I took the phone from him as he was calling his sister using 911 as the number. He wanted her to pick him up and take her home. I wish she could, but she lives 3,000 miles away. He thinks he is a teen which is why he is hypersexual, however when a person has no idea who you are, does nothing for themselves because he can’t, calls me names, is unappreciative for everything, pees on the floor, etc., it is not happening. I sometimes feel really hateful feelings and then I realized that is because this man is nothing, NOTHING, like the man I married and is a man I would NEVER marry in a million years! Yet, we are all supposed to deal with this, and I am to the best of my ability. But don’t beat yourselves up for how you feel, this is not the person you married and probably would not have married. We are lonely, alone, depressed, sad and widows of living people. We all deserve a hug, we are in the trenches…Hang in there Ladies, believe me I know it sucks, but knowing we are not alone in our feelings and lives is comforting. Bless all of you for what you are going through!
Martha
It’s the same for me. I feel so mean being the way I am. I just need to be left alone for awhile. The children never offer any help. I think they refuse to see the situation, just so they don’t have to do anything. He is killing me day by day.
TVDavis
I, too, hate coming home from work. My husband turns 76 in less than a week, but I’m younger, and I feel like I got cheated & duped. I think doctors and others knew something was wrong & just kept saying it was “normal aging” when I expressed concerns about forgetfulness & strange emotional swings. I have to travel in about two weeks & I am exhausted from the strain of caring for him, looking for aides that won’t break or steal everything in my house, that also don’t eat up my entire salary, just to sit and watch TV with him all day while he eats a sandwich. He feel out of bed in his sleep less than two months ago, and he is now a whole new level of awful to deal with. The hospital trained him to wet the bed, so now I’m changing diapers and bed pads every day, while still getting him up & to the bathroom all night, because he still soaks the damned diapers. I have an aide come in for a few hours three days a week, and I have to do everything anyway. She couldn’t figure out how to open a mouthwash bottle! For $22 US per hour.
Sorry for the rant, but I completely understand those who say they’re widows. I got two years of an ok husband, and six years of a slow-moving disaster that I’m alone in dealing with.
Lois
so sorry for your situation. I feel I am at the start of the road you’ve already travelled. My husband suffered a stroke 9 months ago, the clot affected the pre frontal lobe. he has convinced clinicians that he is unaffected. he knows that I believe the stroke has prevented him from knowing what is appropriate language (nothing sexual thank goodness) but often very rude and insulting. he laughs hysterically after he’s done this and says he’s ‘joking’. When I tell him a joke needs to be funny he tells me I need to get a sense of humour. (one example- referring to ladies at his Sports club as ‘vermin’ and he’s bought a pullover embroidered with the logo ‘The Verminator’. He’s not been able to wear it yet as the club has been closed due to bad weather and the holiday season) I have hidden the offending pullover and replaced it with one the same colour but I live in dread of him realising what I’ve done. he has forbidden me from speaking to anyone about his stroke and warned me I should be very afraid of what he’s capable should I disobey him.
He believed I had my GPs private tel number (different aspect of my life) and wanted me to call it directly to get her write an emergency prescription for his gout. I told him I couldn’t possibly do that. he gave me the most sinister look and said ‘you’re refusing to help me,’ in an intimidating mono-tone.
if I knew a sure fire way of committing suicide I would but also I can’ leave my son to be responsible for this guy he no longer recognises as his father (tho I’m the only one who gets screamed at. others get lectured at until they manage to get away from him. there is no social life I can have with him. I am an abused servant.
Annette
I have just discovered this blog and while I can do little to help, I may be able to help you with your husband’s night time problem. My husband is physically unable to get out of bed at night and I have found that Forsite Maximum Absorbency Protective Underwear – lined with – Tranquility Top Liner Super Plus Booster Contour Pads give us a dry bed and clothes -every night! Hope this helps with one of your many trials and tribulations.
BJ
I, too, hate coming home from work because I’m afraid of what I’ll find. It’s never anything big or too bad (not yet anyway), but a million little things. I paste a smile on my face, but it fades very quickly. Feels petty to even say what the little things are, but there are a lot.
My husband was a lawyer, had a stroke, and now has dementia at age 62. Prior to that, he had a brain injury from a car accident, then was an alcoholic. I had to go back to work as a lawyer – it had been 16 years since I stopped practicing because I ran a small event planning business. I closed that – needed more money than that brought. Now I work SO HARD, and my formerly hard working, witty, kind husband is a shell of what he was. Doesn’t initiate conversation, no initiative at all. If I don’t ask him to do something, he does nothing. Other than the laundry, I do everything and I’m exhausted. More than that, I get angry and annoyed all the time. Friends are planning for retirement and I see no end.
I also feel alone – maybe our friends are uncomfortable around us? Very little socializing (even given Covid).
Has anyone found that their friends are staying away? Sorry for the long rant…my first venting!
Jeff
I can totally understand. I think I actually hate my wife now. Haven’t been in love with her for sometime. I have been with her 44yrs. Wow.
I think what’s it going to be like living alone. Great I hope. I’m in great shape workout at gym. Getting into body building. Wow I’m 69 look 50’s. She’s always wanting sex. Not why? Haven’t slept with her for 10yrs. Wow.
Anyway it’s very hard I’m also alone no kids parents family to ask for help.
Stay strong you’ve made it this far
Mary
I feel the same. We have had a horrible relationship anyway. He did some awful things with money giving a lot to my stepson without asking now we have to remortgage our house by the way and being mean to my son… his stepson. I did everything for him and still do. He is 79 and I am 64… work full time as an ED in a large pediatric urban hospital, level 1 trauma and exercise, teach spinning classes I don’t like him and I say mean things… I hate myself and want to divorce him but I feel sorry for him
Betty
It’s not wrong of you. I feel the same way only worse. My husband was physically and verbally abusive to me from the time we got married. Now he has dementia and he’s just mean to me. He’s 78 years old and I’m 76 and I just want to put him in a nursing home so I can have a few years peace before I leave this world. I just don’t know what to do anymore. I’m very depressed and I just want it to be over. I would rather be dead and have to be forced to take care of just hateful man anymore.
Jan
I feel exactly the same, haven’t loved him for about 30 years before dementia, he’s had dementia now for about 5 years. I really don’t like him & should have gone years ago. Now scared of upsetting my adult kids if I leave.
Maria
No you should not feel guilty! Watching my husband’s once brilliant mind slowly atrophy where he no longer can carry an interesting conversation is awful. I’m praying for this to be over!
Geraldine taylor
No, not at all horrible. I know you wrote this last year, am just reading it now.
I used to cry coming home from work and then faced. Y damage, bizarre mess …
It was hell on earth.
Are things better for you now?
Arletta
Dear Elizabeth and all others
I am in a similar position. With no cure at this time, my husband was diagnosed with bone cancer multiple myeloma, Amyloidosis, and kidney cancer. I was 57 and he was 55 For the past 10 years it has been a challenge and a half. At age 65 now he is not able to walk. He loses control of his faculties a lot. Both of his knees caps are detached from the patella and are up in his thighs. There are so many other complication around his condition. Now he needs total knee replacement on both knees. On top of that he has glaucoma with amyloid and has hard time seeing with the progress of it. I am 67 and doing just about everything for him. After 10yrs I almost forgot how nice things were before. My days starts with me mentally asking what my day will be like and at the end I am mentally and physically exhausted.
I get so saddened sometimes, angry and disappointed thinking why me, life is not fare and I don’t deserve to be in this situation. I was a good wife. Am I being punished. I pray all the time and it helps. I feel guilty when I wish we were never married sometimes. I feel selfish when I want my life back. He doesn’t have any type of dementia so he knows and feels so bad. I hear him crying sometimes when he is by himself. We have been together 25 years and I have never seen him cry until now. He prays a lot also. We have to pray for each other to stay loving to our husbands. I have to endure and be strong for it could be me. I hope I help someone as all of you have helped me. Peace and blessings!
Donna
Me either
Jinny
Hi Donna
I would leave ig there was enough money to for a good home. Or get him his own little pad. Or mY e leave him the home & live in an RV !
Chel
I’m the same
Anthea Millier
Oh , I understand I am the same….don’t think I will cope . I don’t love him and he has not loved me for years ….
Mary
I have the same going on. I’m not in love with him anymore. He has hated me since he came home from the Hospital after open heart surgery. I know that should be a different group. The comments are the same because pumphead causes dementia and Alzheimers. Even when doctors won’t admit it. It’s a nightmare that I can’t wake up from. Divorce has been an option many times. People keep talking me out of it. I’m also raising our Granddaughter. Her and my kids all see the difference in him.
Debbie daricha
I totally hear you I’m in the same boat it’s sooo frustrating omg!
I feel like I can’t take this anymore!
He can’t remember anything if I don’t lay it out he forgets..
Today he forgets his water bottle that he had with him always .. oh I must have set it down to take a drink I’m like ok I’ve told you to put back in your lunch bag every time.. this is the 3rd water bottle in 4 months..
I’m hating him more everyday I call him stupid idiot I can’t help it!
Not fair and he doesn’t think he has a problem really!!
Toni
Same here. I understand your situation completely.
Nancy
It is a daily struggle. He was never an easy person in many ways, but now he is getting impossible. Everything I say, no matter how innocuous, turns into an argument or some bizarre contest of wills. I don’t like taking care of him; I don’t want to be his mother. I am 73 and he turned 74 in September. We’ve been together almost 30 years. I can look back and see the deterioration has been happening for a long time. His general health is good and I am so resentful that he might use up my own health that I can barely stand to be in the same room. He has become “helpless” and does nothing around the house. I feel guilty at the same time I loathe him. I know it’s crazy of me to expect him to be normal, but instead of compassion for his situation, I just feel rage. To make matters worse, he is obsessed and preoccupied with sex. I really cannot deal with it. Even when I relent, he is no nicer or appreciative. When I hear of women who say they love sex in their 70s, I honestly think they are all a bunch of liars.
Andrea
I thought I was the only one! I hate myself for feeling this way. He was the love of my life for so long. I feel so trapped now. We never had children of our own and his daughters with his ex are “too upset and can’t handle” dealing with his Alzheimer’s. Same with his siblings and his best friend … they can’t bear to see him like this. So, it’s just me …
Freida
Hi , people just don’t understand the loneliness a carer feels. We had no children together either and my husbands large family fled to the hills once Dementia was diagnosed. I feel that his life has stopped but so has mine and I was not ready to slow down yet. Miss the conversations,miss the news and gossip.miss the affection. The daily little comments no longer exist. Carer just becomes a parent again. At 20 that was ok at 72 it’s not ok.. we Carers are trapped….
evelyn
yes we are trapped i want a divorce and get on with my life now as have found love again what does that say about me .ifeel bad
Loretta Latham
Its the loneliness especially now with covid as support is practically impossible even if family tried ,the actual look of hatred in a person’s eyes toward you when you know how much they cared for you ,the guilt of being angry with someone who cannot help who they have become is unbearable when its not in your nature
Nancy
I agree we are trapped. I especially resent the entrapment since it isn’t the result of carelessness or bad decisions–it just happened. It makes me sick with rage and helplessness and guilt. If I had purchased long-term care insurance, I would put him in a facility so fast his head would swim. He would love it–being waited on and catered to and told how young he looks, etc.
Idalia
Don’t give up on him his friends his family did but you don’t give up on him I know it’s sad hang in there with him
Lorry
Your situation is like mine. My ex has had dementia for 4-5 yrs and i fell out of love and divorced him. He’s 63, me 61. I couldn’t take it anymore. So many suicidal threats.
Pauline
Ah!!! I know exactly how you feel. I have a huge sense of responsibility towards my husband but I long to have someone to talk to share laughter with hold a hand and for once in a long time feel loved. I feel very guilty for wanting these things
Nancy
I feel the same way. The responsibility looms greatly.Don’t feel guilty but I understand as I feel the same. Would love to have a normal conversation with someone. I’m so angry most of the time. Is it wrong to long for companionship?
VIVIENNe kirk
Hi Nancy
I read your comments about your husband having Alzheimer’s etc and the desire to have sex..I am in the same boat. Could we exchange stories ?
Patrick
No Pauline;
What u want is normal. We all want it. I’ve been without it for 8 yrs so I understand. So sorry for your situation!
Linny
Lori …Can’t stand the new guy. You have made my day. Thank you.
Lori Sanford
I’ve not met anyone my age that has an Alzheimer’s husband. When that diagnosis hits or the dementia characteristics surface, you lose it all. You lose income, friends, and family. Most importantly, you lose the guy you married. I can’t stand the new guy.
Nettie
I find the toileting thing is overwhelming but there is no one else. People think because you’re married it is somehow easy but it is unbelievably difficult. There’s no escape and I struggle with the feeling of resentment that rises in me when I hear him using his bowls. I feel trapped. But I’m sorry for him too. He is also trapped. A once extremely, capable and brave, kind man, now stands shakily as I wipe his bottom and put new pull up pants on him. He no longer has his sheep, His friends, His motorbike or conversations of laughter and meaning. We are all victims.
Joni
I’m 51 and my husband is 55. Our marriage wasn’t the best, leading up to when we started having him assessed (which I know realize was due to the onset of earlier symptoms) but, the damage had already been done.
I have fallen out of love as well. I find that I live my life almost completely apart from him and I’m just here to make sure he’s taken care of.
I’m ashamed to say that I have started to be interested in someone else, but have not given in to it. How do you deal with the yearning? I crave intimacy so badly.
Susan
Joni, Don’t feel ashamed of what is entirely normal. This is an area that needs more discussion. My story isn’t really any different than anyone else’s. 2nd marriage for both. 7 years married. Now I know he’s had the disease for all those years. I couldn’t figure out what was wrong with me. Now I know. I met someone recently. That person just lost his brother to the disease. I decided to move forward with the relationship and I am a better caregiver because of it. We took it very slow in the beginning but even that was heaven because it was someone who cared about me. Someone who is “giving me care” while I care for someone else. I don’t advocate just jumping into a relationship for the sake of having one. But I do believe that if you ask the Universe to send you “a right” someone, it will and then it will be a “constructive” relationship instead of one that tears you apart. You have to take care of yourself first.
Sharon
My husband was just officially diagnosed with Lewy Body/Parkinson’s. He’s been very disconnected for at least two years at age 58 his behaviors are out of control and he has done so much emotional damage to me along with some physical as well. I’m currently the caregiver for my mom who has vascular dementia and is expected to pass at any hour now. Dementia is a wicked disease and has destroyed me and my daughters.
Ettie
I’m living a nightmare I just can’t handle too but no matter how much I cry or scream out that I’m not coping and that I’m done , nothing happens . I feel completely trapped. This man was the love of my life for almost 40 years but now I don’t know him or even like him. Who can wipe someone’s bottom for 4 years and not be broken. ?
Geraldine taylor
I am so sorry. It is a nightmare, shackled to someone who is to all intents and purposes mad.
Thank goodness for this forum.
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