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.
74 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
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.
Anthea Millier
i feel the same
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.
Nancy
My thoughts too. Feel guilty but he exhausts me daily.
Donna
Me either
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 ….
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
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.
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.
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.
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
Rbert C. Whittaker
I am 80 my wife who has Alzheimer’s is 76 and we have been married now for 55 years. She has had this illness now for about 28 months. We had long term health care which enabled me to place her in a senior care facility. She has become pretty much a shell of the person I once new and loved. I attended a support group for a while but many of them experienced more advanced issues and instead of being a help I found it depressing knowing I would soon face the issues they were. Long Term Health Care is expensive. About four thousand a year but considering the care that will be needed in a facility it will cost as much or more per month then the insurance per year. It is worth every dime if you come to need it. The love you once shared does change, it has for me. Some people will think it is terrible. First there is the anger, then sadness, being a lone not having the person that shared everything gone is like they died. There are no words that I can express to comfort you and none that will take away my pain either. Only those who experience this can fully understand. Good luck and best wishes BOB
Joy
Thank you for sharing your feelings dealing with a loved ones dementia. It helps
me feel much better about myself knowing I’m not the only one with negative
feelings towards my spouse while dealing with such a terrible disease and a
situation that seems to go on forever.
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
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.
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. ❤️
Gary
Wow, all of these writings are so helpful in not feeling alone. My wife was diagnosed 6 years ago with Mile Cognitive Impairment and has just recently been diagnosed for Posterior Cortical Atrophy. Basically, it’s Alzheimer’s evil twin. During the pass year, there has been a noticeable decline. She now needs help getting dressed and showering. Ok, that’s not too bad but I know what’s coming. I’ve read enough on the progression. I know that 5 years from now, my life is going to be completely different. We’ve been married over 40 years and I still love my wife but I also see how she is changing in her personality. To be honest, I’m scared. This is not how our retirement was to be. We have lost friends and family who feel uncomfortable spending time with us or my wife. I need a break sometimes. Our girls help out as much as they can but I sometimes feel like a prisoner in my own home. I’m only 62 years old and should still be enjoying life but this is the promise I made in the presence of God (in sickness and health). Our girls tell me to find new friends. Not so easy when I can’t leave her alone. And if its another couple, also not so easy to find a couple who is understanding to my wife’s condition. Ok, enough for now. Felt good to just say how lonely and isolated it can be to be a caregiver.
Carol
I am so happy to find this page. I keep reading advice about dealing with your “loved one” and I wondered if I was the only monster who didn’t love the dementia patient at all. I had a miserable marriage that I stayed in for my children who loved their father. Now at 75, I care for a man, my husband of 55 years, in his nineties who I dislike. He is my constant shadow who complains and criticizes and never ever has a positive comment. At least I know I am not the only one.
Tracey
Reading your posts has made me feel I am not the only one!! My husband had a work accident almost 5 years ago and it has brought on dementia. He is almost 71 and I am 53 and we have been married 16 years. He is always telling me he loves me and wants a cuddle, but I am so exhausted from working 7 days a week to pay the bills and still having to look after our 11 year old daughter I am beyond exhausted!!! It has really affected my health and have lost my friends. I feel so alone.
June
It is a relief to find out that growing to “hate” your spouse is not some terrible stigma but actually a very common thing. I find that the person I spent the greater part of my living with has become someone I don’t want to be around. I know inside he is the same person, but the outward manifestation make it hard to “see ” that person anymore. The idea of thinking of the person as a dog or cat makes it easier to handle the day to day frustrations and expectations. They still need love and care even though they may not want or appreciate it.
Deborah G Savage
I’ve refused to go to a support group. I imagine them talking about how much they love their spouses. I don’t feel the same. Although I was madly in love with him, I am no longer. I don’t hate him.
For no clear reason, I find that I’m angry (mad) alot. Well, maybe it’s the fact that I’m retired and spending my retirement confined to my home, most of the time.
He has no friends. Although there are people who I believe genuinely care about him, he doesn’t care much for them, so he says. He has four children, only one comes to visit.
He was psychologist, so he thinks he knows all the tricks of the trade and has refused to accept the diagnoses (I understand that). He has vascular dementia. He does not always remember how to get into and out of the car or how to fasten his seatbelt or he’ll try to get out of the car before I’ve stopped. I’ve hired home care aides. They come for 6 hours, 3 days a week to help him with bathing, washing his clothing and to do light chores, those things that he use to do, like take out the trash and clean his bathroom, change the sheets on his bed. They do things to keep him engaged. He remembers some things very well and other things are some made up version of memories and there are some things he doesn’t remember at all (He purchase $50,000 worth of gold from, then sold it for $6,000. He bought that gold using a credit card. He does not remember that or so he says). He thinks he is well, but he’s not. He doesn’t want to bathe, he eats all day, swallows food without chewing, and watches TV all day. I’m not sure why, but he looks under my bed and in my closet, often. He picks up the phone and listens in to my conversations. My biggest challenges are having a conversations with him and knowing his mental state, at the time. I’m never know if what I’m saying is what he’s hearing. We’ll be talking and he’ll get this look. I’ll ask, what did I said and he say something that is not at all what I’ve said. The other day, he talked about our baby. He was still born. He was not talking about our baby. We have no children, together.
The neurologist told me he would get stronger, but he would not get better. That he needs to be supervised 24 a day. At the time, I wasn’t sure what she meant. I am now. My job is to take care of him. I TRY TO KEEP HIM SAFE. I don’t always know what I have to do. I don’t always like him.
You know what? I think he’ll out live me.
TimV
I thought I knew everything.
I was a corpsman in the navy.
I was a nurse for 27 years.
Top of the pyramid for 8 years.
Sure is a fast ride to the base.
Caregiver of my wife 100%
for 12 years now. Her family is
22 minutes away so to far to
come visit. I’ve stopped being angry.
If your looking for understanding,
Try the wheel of emotions in
Elizabeth Kubler Ross
On death and dying.
This is a complete Ambiguous Loss.
I do the best I can , for me I find
comfort in my style of religion.
I am saddened her family will never
Have the peace I have.
Do your best ,smile and cry.
Very few people ever signed up for this trip ,- willingly.
Nadine
It really is a relief to hear your fellow caregivers expressing the same feelings I am having. We’ve been married nearly 60 years and he had been a wonderful husband, father, and best friend until about 5 years ago when his whole personality changed. He refused to allow testing and our Doctor then said that it was obviously Alzheimers w/Dementia but that was as close as we could come to an accurate diagnosis. Some days are still good but most are a constant tug-of-war. Last Christmas he threw our electric knife at me – because he couldn’t get it back into the box we keep it in. Most of the time he isn’t like that, And when he gets mad, if you just wait a little while he forgets he’s mad at all. I feel as tho I am just hanging on and oh how I wish I had him back like he used to be. God Bless all you care givers. Please pray for God to give me the courage to carry this through to the end, and I’ll do the same for you.
Kathy Miller
I was a caregiver for 35 years for Alzheimer’s and dementia. Then my husband was told he has C.O.P.D. and dementia. I had to stop my job and stay home with him. I have not a lot of problems taking care of him with all my skills, but am very lonely. He’s always been my best friend and lover.Now I have neither. I can’t get out much.The one thing you should remember even he doesn’t know you he feels comfortable when your around that something know one can give him but you. Hang in there as long as you can ,but some times you have to let go.
Louise
I’m 57, my husband is 66 and we’ve been married six years. I waited a lifetime for someone who understood me, “saw” me, and supported me in my life goals and purpose. We adored one another. About 4 years ago, I started to see changes and first called the doctor, but he was still working so nothing happened.
We just had our sixth anniversary this weekend and all of a sudden I realized that he had almost all 1o signs. I’ve taken care of both my parents and my grandparents to their deaths, and both my parents had brain tumors. I’ve moved across the country several times to tend to my elders during their end stages, and I have no family of origin left. My son is on the autism spectrum and I have a major disability myself that’s genetic, progressive, and limits my activities and abilities already.
I MISS my husband, he’s already a shadow of his former personality. Everything has already fallen into my lap – financial planning, organizing our lives, making meals, and it just kind of happened.
My husband is currently sweet and loving and will do housework if I make it easier for him. He loves seeing me naked but he’s like a 14 year old boy in his approach nowadays, which makes sex with him weird. I’m not connecting with the person inside anymore, and he can’t see me. He also doesn’t understand why I’m sad about “losing him” when he’s right there in front of me.
Because of my own disability I know that I won’t be able to take care of him at home once that middle stage establishes itself. I guess it depends on whether he wanders or gets agitated, so time will tell. But his symptoms are progressing fast, every 3 months he becomes noticeably less capable than before.
Thank you all for your honesty. I feel more prepared for what I have to face and that my intuition (after all those years of caregiving for my elders) about what is going on with my husband is right on.
I’m so grateful for the few good years we did have and the ten before he finally convinced me to marry him (it took 3 tries as all my other marriages failed).
Realizing that my whole future will be different than I expected, that I won’t have a partner and am alone again is a huge grief. I love the man in the next room, this shadow of my dear heart, but he is not the man I married. I will care for him as best I can, as I would want him to care for me.
It seems 100% normal to fall out of love with someone who isn’t there anymore. Your brain is smelling your lover and telling you they are there, but repeated experiences of not being loved and cared for by your partner tells your brain not to respond with those feelings of love. I mean, that’s normal. It’d be pretty screwy to have a system where the default reinforced staying with people treating you badly. It’s normal and healthy to want intimacy – emotional, physical, and sexual. People do better when they have that in their lives. Life is complex. Living is hard. Be gentle and compassionate towards your selves, people. You are doing your best and that’s often enough.
Joyce
My husband has vascular dementia after having embolization for an AVM in 2008. I have NO husband, no sex, no touching, he’s very selfish, quick to yell at me. I can’t take it anymore & don’t know what to do. We will be married 50 years in September. I am so hungry for affection.
He was always quick to yell & get mad, but it’s magnified since his AVM. I don’t know who to see or talk to.
I want to get up & leave.
Susan clancy
I’m so glad to find it’s not just me. I married my husband only 9 years ago, after dating for 9 years. I remember being so happy that I found him, and now I’m alone with this stranger who knows me still, but just to do his bidding. I miss the man I married and I will have to keep going as long as I can.
Dan Bland
I know we all feel the pain. I have chosen to be my wife’s sweetheart and leave most of the caregiving to others. We are fortunate to have access to a good memory care facility and I can visit my wife daily I am still a good handholder and foot rub expert and can help with the other things when needed. I have my own health issues but she’s the top priority.We visit in different ways now,and she doesn’t always know who we are,but I do,and after 55 years there are too many wonderful memories to let me get overwhelmed.I cry all the time .I laugh too.
Rita
My husband was diagnosed 5 years ago at the Mayo Clinic with Posterior Cortical Atrophy – a rare form of Alzheimers. He had symptom for at least 4 years prior to clinical diagnosis. Today he is 62 and I am 57. I am reaching the point where I am considering memory care and day to day life is becoming too difficult and so very stressful. With the help of my husbands sister we are going to start the conversation about the future and what that might look like. I love my husband but am no longer in love with him. Its so hard to be care giver and lover. Impossible really. Makes me feel better I am not alone. My faith, support from family an friends has kept me going. I want to start the transitioning to memory care hoping we can start with certain days and then move him when the time is right. Its all so hard. So much guilt for me. I have tried to be the best wife. This is horrible disease for everyone involved.
Any tips on how to have an effective conversation? Am so worried that he will just want to kill himself.
Stephanie Jenkins
My good husband died June 14, 2018, Alzheimer’s and vascular dementia. He suffered a lot from a stroke on January 1st until he died June 14. We had an epic love story. I wanted to take care of him until the day he died. Stroke caused him to be difficult and he didn’t sleep. He moved counterclockwise on some tumbling mats because of agitation and restlessness. for several weeks. Very difficult to watch.
ruthlockley
Ruth Lockley
My husband is 86 and has Alzheimers which began in 2013 or even before.
It has developed very gradually but has accelerated since being in care in
2018. I can relate to so much of the experiences mentioned by others but I
am fortunate as he has retained his sweet nature even though he is much
more withdrawn and quiet with minimal ability to converse now. He just
“lights up” when I appear. A very contented man all our married life and
has always been a lovely, happy and very open and outgoing person.
With all of the difficulties I am just grateful that now is the
time to cherish him and remember how wonderful it all was. It can be
wonderful now too in a different way as my days are focused and giving
him some joy and pleasure in any way I can. i.e. little outings, a movie
date in his facility room. Sitting with him while he sleeps. Holding his
hand and particularly sharing photos of our life together. We still love
going to church together which has been an integral part of our marriage.
Yes, it is hard but it is also a very beautiful time. “To love and to cherish”.
Paul
My wife is 56, and diagnosed with MS 6 years ago, with an early onset Alzheimer’s diagnosis 3 years ago. She was the best part of my life, and I thanked God every day for her.
The other day a song came on the radio that we danced to at our wedding 33 years ago. It meant nothing to her. I’ve given up thinking she remembers anything of our life. I feel like I’m dragging around my wife’s corpse. I find joy an impossible emotion now. My favorite part of the year is winter and favorite part of the day is night. Lifelong friends have abandoned her, but I understand. Who wants to spend time with a breathing corpse. If loneliness kills, I suppose I’m not going to have to deal with this much longer. It helped to read that my feelings aren’t unique, or unexpected.