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.
147 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
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
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????
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.
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.
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
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!!
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?
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
Same with me!
BRENDA Charlton
I understand exactly how you feel.
Barbi Strom
Same here. It sucks!!
Susan
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.
Marilyn
In some states (i.e., Florida) divorce is not possible for 3 years.
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 .
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
Susan
Thanks, Bob, for your honesty. I am experiencing very similar things.
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.
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.
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.
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