My DH has dementia. I remember him as a brilliant, responsible man and it is so hard to watch the decline. Any advice?

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My DH has dementia. I remember him as a brilliant, responsible man and it is so hard to watch the decline. Any advice?

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My daughter is currently living with us which is a great help, but she might leave at the end of the summer to pursue her own interests. I am not sure how to be his wife and caretaker at the same time. I find my patience is thin with the constant repeated questions and need to direct him concerning daily living skills. He does not do well in an institution. We saw that after a rehab situation. I want to keep him home, know that extra care is needed but find that to be hard to find. I have loved and honored him for almost 40 years of marriage and know that an institution will kill him. How do I take care of myself and honor my vow to him to keep him home. My own health is less than stellar. He is 12 years older than me and 83yo. His situation was exasperated by throat cancer and the chemo and radiation he received. He is free of cancer now. He also had kidney cancer 15 years ago and with the one kidney removed he was cured of that. He and I have been through a lot, and I will not abandon him now. He was looked up to by his colleagues in ministry for his clear and convincing statements on justice and mercy. I am tired and concerned and guilty about my own impatience. I, too, am retired clergy.

Alzheimer's & Dementia Grief Guilt Spouse

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My Significant Other of 10 years was well-known & respected in his field, too. He had been retired for 15 years. His slide into dementia & cancer was steep & swift - he died 2 months after his dr. suspected something might be wrong with his liver (official cancer diagnosis came a month before he died). He made his last informed decision 2 months before he died. After that, I couldn't help him understand what was happening, & I couldn't assuage his anguish. As much as I tried to be kind & gentle and explain things simply, it didn't always work. I felt guilty & angry. It wasn't until after he died that I fully accepted that his brain was damaged.

It’s important to get help. I had home health aides, including a live-in and eventually, an overnight, so I could sleep. Getting help didn't mean I was abandoning or failing him. I just could do no more. Getting help with his care meant I could be his companion - something as simple as sitting on a couch together after dinner without worrying about getting him ready for bed.

He became profoundly weak, & his mental state added a terrible layer. I wanted so much to reconnect with the man he was – I think that's a common desire. Was he the confused, angry, anguished man who couldn't remember how to operate his stair lift, who insisted on walking to the bathroom in the middle of the night even though he could barely walk, who accused my family of hating him because he wasn’t in a photo that was taken before we met, or who thought one of his adult kids was terminally ill? Or was the man I knew lurking someplace because he knew me, our relationship, our adult children & grandchildren? The truth was, the man I knew no longer existed because certain nerve connections in his brain were broken. I cared for him at home until his agitation forced a 911 call. He died 10 days later – 2/14/22. He was 83. It was a sad ending for a wonderful man.

My journey was short & operated at warp speed. But it also helped us avoid financial issues. You are at the beginning. No one knows what you & your husband will face, but I do know that honoring your vow to him and keeping him at home is not the same thing.

Learn what you can about dementia. Be realistic about finances. Learn what services will be available to you and take advantage of them. Learn what coping mechanisms work for you. You’re not a saint: you’re human & you’ll make mistakes. Know your limits and try not to allow guilt and anger to guide your decisions. You might find Teepa Snow helpful: www.teepasnow.com.

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Home care sounds like a good option since you are not considering placement. A lot of home care quickly becomes more expensive than placement in most facilities so it would depend on how much care you would need to bring you relief.
Caregiver support groups have been helpful to some.
The truth is that you are dealing with what is the most common end of life scenario. Typically, husbands often become ill and require care sooner than wives. It doesn’t make it easier just because it is common.
I wish you well and relief from impatience which can be so hard to deal with.

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"I find my patience is thin with the constant repeated questions and need to direct him concerning daily living skills." Repeated questions and directed daily living skills will multiply exponentially as the disease progresses. Couple that with the toileting needs, bathing, feeding, dressing, med administration, doctor visits, falls, sleeping irregularities, etc., you will be too exhausted to be annoyed. Dementia gets worse and worse. Currently, your daughter is there. Even if she isn't actively involved in the care of your husband, her presence allows you freedom that you will not have after she leaves. The comparison between rehab facilities and memory care facilities is inappropriate. Rehab facilities are an "extension" of a hospital. They care for patients' physical needs. Memory care facilities provide a home away from home for people who need help with activities of daily living. My husband just barely existed while in rehab. In memory care he lights up every time one of his caregivers brings him a snack, takes him to the bathroom, dresses him, shaves him, and talks with him. He is emotionally healthy. In memory care, both his physical and emotional needs are met with respect.

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I saw that with my dad who died five years ago tonight so its on my mind.

Lucky for him he didnt really start ALZ until age 91, so he got it late, and it went fast, two years. Hard at the time but in retrospect probably best. I wanted to keep him at his home with my mom, I would agree to live there too but my mom vetoed it, and she was probably right . But broke me up to bring him out of his home of over sixty years to some institution

But its hard to watch, I dont know if there is any advice to make it easy.

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KLJ0925: Imho, the term 'institution' sounds a tad scary. Locate a CARING, compassionate place for your DH (Dear Husband).

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No, an institution won't kill him but 24/7 may kill you.

Rehab is far different than memory care. Memory care focuses on stimulating the mind, so there are lots of things to do to keep that stimulation going.

My mother's MC had retired doctors and dentists and even one man who was a neuroscientist. He and I talked about things I could never hope to understand, but he also had dementia. So did the other people living there who were still smart and interesting.

I feel like you think the man he was is too good for an "institution." (Calling it that certainly doesn't help get past your own personal prejudices about one.) I beg to differ.

The bottom line is that I'd hope you would honor your marriage vows which I take to mean ensuring he's cared for the best possible way. You doing it may not be the best way, so try to be a little more open-minded about care possibilities and also work on getting your head around the man he is rather than the man he was.

This is life, and we change every single day. I'll bet he doesn't have as much hair as he once did and maybe yours has turned gray, but I would hope neither of you spent time mourning what the other once was and resenting what age had done to each other.

Pull up your bootstraps, recognize that long lives bring change, and learn to adapt, or this part of your journey together will finish you off long before it does him.

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Thank you for your kind reply. Some earlier ones were quite cruel, but I was able to hear what you said and will carefully ponder it. By "institution" I meant anyplace that houses people whether for or nonprofit. I know there are many fine places that take patients and care for them. I was not meaning to disparage them as the rehab he stayed in for 2 months was one such place, but it still was difficult for him mentally.

I didn't understand until recently how being a caretaker takes such a toll on one and makes it difficult to be the spouse. Until one lives it, it is hard to understand.

Finding a place will take time if I hope to find one which is within visiting distance. Cost for a decent place will also be a serious factor here in NY.

I know I have to begin to look as there will probably be a waiting list, so please keep me in your thoughts and prayers for strength to do this.

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On dying at home: This is what my dad wanted to do, and he did. Cancer and dementia. He had no idea how hard it was for me. And I had caregivers to help. Also a housekeeper once a week. Finally it was over.

So let's walk into his home, a beautiful South Florida villa. He'd been seriously ill for almost 8 months. His hospital bed is on the sun porch. He loved to look out at the greenery and sky. The carpets are stained because he had accidents, bladder and bowel. Sometimes his bowels would just empty when we stood him up. We took precautions, the three and more caregivers and I. But it still happened. And food and drinks were spilled. He fell and bumped into things, leaving marks on the walls and furniture. His walker is in the corner. And the oxygen tanks. And the Hoyer lift. A stand to wheel his catheter bag when he walked outside. His suspenders tossed over the back of a chair. He needed them because his pants wouldn't stay up when he lost so much weight.

His medical supplies mingle with the food in the fridge. There are plastic bags of medical things and also morphine. Pills here and there, especially in the kitchen. Many bottles, many dispensers. All sorts of aids in the bathroom for toileting and showering. All kinds of bandages and boxes from catheters and other supplies. We had to make room for all the equipment throughout the house, so furniture and other items are piled in the dining room. We can't eat there. He can't either.

The whole house smells like a sickroom. Bodily fluids, disinfectant spray to cover the odor. Antiseptics. Rubbing alcohol. Ointments. Paperwork from his hospitalizations. Folders pertaining to chemo, appointments. Large message boards for caregivers, for appointment reminders. Little papers with phone messages. Always dirty dishes to be washed, large bags of adult diapers to be disposed of (the garbage can, which was built into the ground, wasn't large enough for all the room that we needed between trash pickups). Always laundry to be done.

Dad crying that he wanted to die. Hospice doctors, nurses, a minister, OTs, PTs and visitors in and out. Never quiet in the house until nighttime. Difficult to leave the house to buy food, and I'd cook it only to have visitors stop by and eat it. Dad begging doctor to give him a shot to end it. Doctor saying no.

This is what dying at home looks like.

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Thank you for that heartbreaking answer to dying at home. You have just convinced me that I will not do that to my husband if his health deteriorates to that point. I hope you are doing well . God bless you.

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I think it’s very normal for you to feel guilty about putting your DH in care.. it shows you’re a good kind person devoted to your husband .
I too have always wrestled with that decision when my husband went to
care. But you have to be realistic and you have to make right decisions for both of you now.
It’s a smart decision to get your husband the level of care he needs.
it will protect both your health and safety and his. He will have eyes on him 24/7 with professionals… a doctor … neurologist … occupational
therapist … activities… someone else to do the grunt work … and you can visit every day … bring him snacks presents … take him outings …
and be loving wife he sees everyday.
there’s no way you can replicate that
at home no matter how many hours of help you have. The house will no longer be safe for him… and he’ll feel isolated with an exhausted wife and caregiver..
there are no perfect answers but in my opinion the best we can do is turn them over to a whole team of experts in safe environment.
I found nice small private care home
closeby … visited everyday… and my husband always happy see me and this allowed us to continue beautiful husband/wife relationship.
you didn’t make vow to keep him at home … your vow was to do best for him (and you)
You’re still his best advocate and you’re still taking care of him.
best of luck

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I understand your sorrow and pain in watching your very talented and respected husband declining with Alzheimer's. My DH was a Research Director for a major chemical company with many patents to his name, and I watched as he withdrew into Alzheimer's until he was unable to form a sentence, and we communicated mostly thru sign language. I was his sole caregiver until he died at 91; and I was 90! He was a mere shell of his former vibrant inventive self. But I remembered a line from an old movie with Paul Newman and his wife in which she was a professor and poet and was diagnosed with Alzheimer's and she was grieving and saying, "But I won't even know who I am". And her husband replied: " But I will know who you are"! That comforted me when my own DH was declining. As long as we and their associates remember the wonderful men they were, we haven't lost them. They live on in our memories.
I hope this helps a little.
Jaypy

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I love this! But I am even more impressed that at 90 (or older, can't tell), you are on the internet and posting in this forum! You are amazing!

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Allow yourself to grieve. Grieve the future you had envisioned. Grieve the past that he's forgotten. And meet him where he is now....don't hold the man he was against him. He has brain damage. He didn't choose but it happened and now he
has a brain that is failing him.

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First let me say this, your husband is a lucky man to have your love.
Not everyone loves their spouse.
My husband is far healthier than I am. It's expected he will live to 100. Sadly he and I can't stand each other. But, off my dysfunctional marriage. I have read all the various comments. You have to decide in your heart what you feel is best. I can only think of my parents care. Both stayed home, my father had Alzheimers and mother hired help around the clock to care for my father. He died at home. Mother was lucky as she lived till 97. And her mind stayed good. We the children hired help when Mother became too frail to care for herself
The last 2 months of her life hospice came to her home and provided care. I must admit now I wish I had spoken out about the morphine that was given . I know it caused Mother to die sooner. Mother refused to go to an assisted living facility ( before she became down).
Since you are a person of faith. Seek God for comfort. Peace

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First let me say this, your husband is a lucky man to have your love.
Not everyone loves their spouse.
My husband is far healthier than I am. It's expected he will live to 100. Sadly he and I can't stand each other. But, off my dysfunctional marriage. I have read all the various comments. You have to decide in your heart what you feel is best. I can only think of my parents care. Both stayed home, my father had Alzheimers and mother hired help around the clock to care for my father. He died at home. Mother was lucky as she lived till 97. And her mind stayed good. We the children hired help when Mother became too frail to care for herself
The last 2 months of her life hospice came to her home and provided care. I must admit now I wish I had spoken out about the morphine that was given . I know it caused Mother to die sooner. Mother refused to go to an assisted living facility ( before she became down).
Since you are a person of faith. Seek God for comfort. Peace

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You can both move together in a Continuing Care Retirement Community:
(copy and paste)
https://www.aarp.org/caregiving/basics/info-2017/continuing-care-retirement-communities.html

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I won't repeat what's already been said about placing your loved one in memory care. I, too, dreaded it with my husband. The deciding factor for me was when Covid hit back in 2020. We had no family nearby to help out, and I realized that if I got sick or fell and broke a hip, or whatever, we would have an immediate crisis on our hands. He simply could not stay alone, could not drive, get groceries, pay bills or anything. If you're the one and only person doing all these things without backup, it's not a safe situation for either of you. It took a while for my hubby to adjust and accept, but now he's so happy when I visit. We hold hands and get smoochy and enjoy each other's company. I love being his wife again instead of all the other roles I played as caregiver, and I sleep better knowing he is safe and cared for.

God bless you as you work through this greatest challenge of your life.

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Rehab is a much different situation than memory care. The goals of rehab are completely different than memory care. There are many communities - many with religious affiliations - that have wonderful memory care options. I urge you to tour them with your daughter while she's still available to you and think about what would happen to your husband if something were to happen to you. Many offer respite stays.

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I did not read others responses but I want to tell you about my experience. I did not want to place my daddy in a facility and when I did it was not good. He didn't like it and they did not do the care taking that I thought they would. Anyway, I ended up placing him in a group home and they were awesome. They treated me like family and they treated my Daddy like family. They cared for him and did for him. When his birthday came they celebrated with cake and ice cream! It was wonderful. If you can you may want to try a group home. Now with covid restrictions relaxed you should have an easier time getting in to visit. When my Daddy was place it was in the middle of covid and WOW what a problem it was. But the group home understood and because it was a home... they had an outside entrance to his room that we could sit outside and visit with him daily. It was close enough that I did go everyday and visit. You can also try Visiting Angels in your area. They are bonded and insured. My friend worked for them and they did different household chores and visited with the client. You can get your rest and do your errands while they are there. Prayers for you and your family!

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Many people have already given advice based on their experience with placing a loved one in a care facility. I can’t add to that since my mother is not there yet.
I do know what it is like to watch someone transition from a vibrant active person to someone who needs help and is drifting further from the person I knew all my life. I cope by trying to take the days one at a time without any expectations of my mothers ability. I think of the future only as much as I need to prepare for her care as she progresses. I also accept that the past is gone and she’ll never be the same. When she talks about the past her memories are not always accurate but I don’t correct her anymore and I let her enjoy her memories as they are. Often her memories are actually of things I’ve done but she wished she could have done. At least now she apparently thinks that she did get a chance to do them so I don’t correct her.
This forum also helps me handle the stress since I know that I am not going alone through this, and often how lucky I am that my mother doesn’t have the advanced problems many do, though that day may come. Many people do need the in person support that is available through support groups and/or by turning to their faith and that community.
Accept offers of help and hire people to reduce your load, even if it does ultimately mean placement in a facility. I see each stage of hiring more help for my mother as an opportunity to get back to having more quality time with her and not get bogged down in keeping up with her care. I also don’t worry as much when I do go home since I know she has people at least checking on her daily. (I live two hours away so I can’t visit daily.) I can also take better care of myself so I can be there when she needs me. I hope that when it comes time to place her in a facility that I will be able to spend most of my time with her being able to appreciate having the time with her rather than cleaning constantly or whatever and not being able to simply be with her. I suspect I will just end up watching tv with her or something but I will be there for her to share her comments or ask questions about what is going on.
Basically I try to take one day at a time and accept that she will continue to evolve into someone different than the woman I remember, but also appreciate the person that she is now.

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You are so right on with your response. I have gone through identical situation with my MIL. She was once the brightest women I have ever known. To see her as a shadow of herself is extremely hard. I learned the phrase "one day at a time" from my mom who didn't have dementia but suffered many years from complications from breast cancer. My MIL has been declining with dementia for about two years since she had two falls. She didn't bump her head, but fractured a hip with one fall and a shoulder the next. Both were within two years of each other. With each fall, the dementia got worse. She is 91 now. She has been diagnosed with pancreatic cancer recently and doctor said she had about six months to live. She is declining so fast now both mentally and physically it is astonishing!! If she has two months, we would be very surprised. She was progressing slowly with the dementia until the cancer. Now her progression is going down hill every day. She went from loving the family visits, to my biggest fear of taking a while to recognizing us on our visits. Very hard for her to communicate, still walking with a walker, but VERY slowly because of her weakness. I still take care of everything else for her house and personal business. In the early stage of her dementia, I started resenting her for constantly finding things wrong with all the things I did for her. We would actually get in arguments, which we never had before. Then I had a revelation, I was being childish and taking everything personal. One of the most important things I learned after some time is that you can't argue with someone with dementia. Especially someone who has always been strong willed. They are always right. Let them be as long as it isn't something harmful to them. She couldn't help what was happening to her. She had lived alone for 20 years since her husband passed away. She had taken care of her own home and personal business and was extremely independent. All of a sudden, I was doing all the things she couldn't do anymore. That was all gone for her. That is where I learned to grow up, not to blame her, not take things personal, continue doing things for her, just not listen when she complained and drop the stupid resentment and just love her again. It has been hard to say the least. We are fortunate to be able to let her stay in her home with caregivers. For those of you that are the caregiver to a loved one with dementia, my heart goes out to you!! I just can't imagine living with that 24/7 no matter how much you love someone without resenting what a change to your life it is. No one dreams of that is how you would want to spend your later years. All I can say is get as much help as you can for yourself as well as your loved one. My heart is with you!!

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My wife cared for her 97 year old Father at home afflicted with Azheiners and Denentia. She did this for 3 years until her physical and mental health took a deep toll. We decided to co-share this responsibility with a Rest Home until he passed away a year later. She felt NO GUILT.

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I am truly sorry to hear about your husband and your health. Everyone’s journey is different, but we can learn a few things here and there from those who are in similar situations.

My husband has advanced dementia. He’s bedridden, cannot talk anymore, and depends on others to clean and feed him. Similar to you, I care for my husband at home because I KNOW he receives better care at home and for less. I have been caring for him for 10 yrs and he has ZERO bedsores so far. In MC or NH, he would be covered with bedsores which can appear after a few weeks. They are painful! Why so fast? Pure logic: MC and NH have one caregiver for 10-13 residents. There is no way your husband will receive 1-on-1 care. So, if he pees and poops in his pants or diaper, he’ll have to wait until someone comes along to clean him up. Prolonged exposure to wetness and waste will speed up sores appearance. There are other examples too, but those are two biggies.

And then there is the issue of money. I disagree with anyone who thinks MC and NH are better financially. Those facilities are businesses - they are there to make money. The cost of staying there is already high and then if your husband needs additional care, you have to pay for private caregivers to be with him. That is more out of pocket money. When facilities know that your husband has a private caregiver, they will cut back on THEIR responsibilities and expect your caregiver to do the work, leading to their burnout and resignation. You’d be back to square one. More headache and stress for you.

Last but not least, it is much easier to leave your parents, siblings, or relatives in a home. It is VERY difficult emotionally to do that to a spouse.

My advice: hire a live-in caregiver. Cheaper, 1-on-1, and you have control over his care.

I have been down this road before and swear I will never put my husband through that again.

Just my humble opinion …

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I too am a worried spouse. My husbands parkinsons is progressing and rven with a live in helper 4 days per week am finding it increasingly difficult. I am alone for three days and feel exhausted mentally emotionally and physically. Mu husband is a big man- falls frequently, has hearing issues, loses everything like his glasses, phone, etc needs help getting dressed, etc. when we go out , the walker goes in and out of the car- its all a lot. Maintaining a home is work with healthy adults. I fear for what happens when hes bedridden.

i truly dont think i can manage that too. Please dont make anyone feel guilty for placing a loved one in MC or Nursing home. I dread it

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A lot of people with dementia do not fair well in rehab. Perhaps the hospitalization led to delirium which might have cleared up over time. So you cannot compare the hospitalization with going to MC. You also need to consider the quality of life he has now. What is your quality if life? Clearly you are suffering and you do not have the disease. I recommend that you try again to put him in facility care.

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My husband was also a retired minister and was diagnosed with dementia when he was 65. I, too, intended to be his caretaker until the end. When he was 70, we moved to a 55+ community, which made home upkeep much easier. Gradually, he lost the ability to drive, then to find his way around our neighborhood. One day, I realized that he could not be left alone for 5 minutes - it was a matter of safety. When he began to wander in the middle of the night, I had an alarm system installed. If he opened an outside door, the alarm would go off and wake me up. By this time, the dementia was progressing rapidly and each day required new problem solving skills. In April of 2021, I found an Adult Day Care Center and scheduled him for 2 days a week. I explained to him that he could visit there and I would come back and get him after I had finished my errands. I'm not sure he even knew where he was or somedays even who I was. 4 months later, I knew I could not continue - I was seriously sleep deprived and realized one person is not physically capable of doing this job. I found a Memory Care facility nearby and moved him there - the saddest day of my life. However, by this time, he was oblivious to where he was or who anyone was. He continued to go downhill mentally and physically over the next 4 months and passed away peacefully after lapsing into a coma the last few days of his life.
I tell you this story only to prepare you for what lies ahead. Just make decisions one day at a time, and you'll know when it is the right time to place him where he can be safe.
God be with you!

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Please look into faith-based facilities in your area. You don't mention denomination, but in my area I have a choice of Lutheran, Presbyterian, and Mennonite facilities. Any of these places would provide my dh (former preacher with dementia, but also heart failure which I assume will take him before I need to make a choice about a place for him) a place of fellowship, a place to talk about Jesus, a place to worship.

As for feeling guilty, I think you might end up not feeling guilty if you are able to get him to a place that is going to provide him with the best care possible in the safest way possible.

But then comes the kicker -- you feel guilty for not feeling guilty! When dh was in the hospital a few years ago, it was such a relief to come home and know I'd be able to sleep through the night. And then I felt guilty for feeling that way!

And maybe, as many have said on this forum, replace the word "guilt" with "grief." Because if you are able to place your dh somewhere, you will begin a grieving process, and that is okay. Acknowledge the grief because it is part of having loved and been loved.

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Your situation sounds a lot like mine. My husband is 83 and I am 72. He has multiple medical issues, including cancer (which is now in remission), and needs daily assistance with meds and physical care and safety monitoring because he falls. And now comes dementia. It’s painful to see his decline and scary to think about the future. I’m just trying to take it a day at a time and recognize that I have more resources than many. But some days I get caught in the self pity that I wear too many hats and while he got some time for enjoying retirement while I still worked, now I will be too old, burned out and decrepit by the time he goes to enjoy much. I don’t let myself stay in that pit too long. All we really have is today. I try to find something to do different. Take him to lunch at some place we haven’t been. Go out for ice cream or to the movies. Go to an event at our community center. Sometimes I invite others to join us. Or get a friend to hang out with him and I go out for awhile.

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SandeC,
My heart goes out to you even as I have tears in my eyes. We are past the cancer, thankfully, though doctors' appointments continue to monitor. We're beyond "going out" for anything other than doctors' appointments, even for ice cream. I need to make more use of the many offers to visit so I can go to the post office, bank or grocery store for a few items.

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Hire a good caregiver to replace your daughter . Talk to elder services about a CNA to come in a few times a week for bathing and light housekeeping . Have your PCP get a VNA nurse to check on him or do physical therapy - find a grocery shopper - maybe a companion to come in and take him for a walk . Lessen your burden . Lucky you have had your daughter to help you .

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What is a dh ?

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I think “Dear Husband.”

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I recommend you buy an excellent book called "Thoughtful Dementia Care" , "Understanding the Dementia Experience". It is available on Kindle or as hard copy book. It has transformed my understanding and care for my husband, now aged 84. The author is Jennifer Ghent-Fuller, a experienced Canadian nurse, working as an educator and support counsellor for people with dementia and their families.

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Basquelady,
Just ordered it. Thank you. Now for the concentration and time to read it.

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I just read your profile. Your husband has been through so much. You have been by his side every step of the way.

Caring for your husband has taken a toll on you and you don’t have to apologize for that. I sense that you have a very strong sense of obligation to him.

Do you think that you would feel guilty if you weren’t caring for him yourself? So many people feel like they must be the ones who do everything themselves. When you start feeling overwhelmed you need to start thinking about alternative solutions.

I am glad that you have had help from your daughter but she will be leaving to move on in her life. You’re stressed out even with help from your daughter. Just think about how much harder it will be when you are caring for him all by yourself. It’s not easy now and it’s only going to get worse.

Please consider looking at a few facilities in your area. I think that you would feel better knowing that you have selected the right place for him to live out the rest of his life. You are not abandoning him by placing him in a facility.

He will adjust to being there. You will also. You will be able to visit him as his wife instead of his caregiver. You will be a wonderful advocate for him and he will know that you are overseeing his care.

Wishing you peace as you continue on in your caregiving journey.

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NeedHelpWith Mom,

Thank you!

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Everyone thinks their loved one will wither away and die in memory care AL when in reality, the vast majority outlive their money while we're wringing our hands with self imposed and unfounded guilt. They eat well, socialize well, have tons of activity, doctors seeing them in house regularly, movies to watch, crafts to make, parties to enjoy, yet we make up scenarios to suggest 19th century insane asylum conditions exist and only OUR TLC is sufficient. Never mind we're burned to a crisp and resentful about the burden.....we still try to use words like "abandonment" in spite of being inappropriate.

Your choice is to keep on doing what's not working or place dh in a memory care facility where you can both enjoy a better quality of life. You can't have it both ways. Dementia is a lose-lose situation for all concerned, so you take the least ugly alternative. My mother lived to 95 in memory care AL with "her girls" taking beautiful care of her and w me bringing her whatever she needed. I had a life, she had a life, and we managed to preserve a relationship in spite of it all and BECAUSE of living separately.

Best of luck to you.

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i think everyone is differant and what works for one doesnt work for another.....i couldnt even my mom in the hospital alone since she always wanted to stay at home with me caring for her...she died in march 2023 and although the last few years were hard, im glad she was able to die at home with me at her side.......i miss her so so much.....i know others would actually do really well in a facility if they are social etc - my mom wasnt like that and just wanted family......i actually miss the caregiving....it was hard but beautiful.....but again, everyone is differant.....

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It's clear that you love your husband, and you've been through a lot.

I want to add my voice to the others:

You don't know that an institution will kill him. We don't know what will eventually cause our deaths. You and husband are clergy, so why aren't you on the page that "only God knows what will take him," or "it's in God's hands now?" I've been counseled in those words by many fine clergy persons.

Have you forgotten this? John 14:27 "I am leaving you with a gift—peace of mind and heart. And the peace I give is a gift the world cannot give. So don’t be troubled or afraid." What good is your faith if you aren't availing yourself of its comfort now?

You would rather keep husband home because you won't "abandon" him. How is it abandoning to get him to a place where professionals care for him? You're the best caregiver you know how to be, but what if you miss a sign that a professional would know immediately and be able to alleviate his suffering? It isn't okay to provide him with insufficient care. It isn't okay to make assumptions based on what YOU want to happen rather than God.

You could be with him every minute if you choose the right care facility. How can you make decisions that need to be made now if you're exhausted and can't think straight? Your health conditions would improve, perhaps, if you weren't under the stress caused by caregiving (that you do not have to do other than your own stubborn beliefs).

You saw that husband didn't do well in a rehab situation. That was then, this is now. Here's one of my favorite philosophical quotes: “No man ever steps in the same river twice, for it's not the same river and he's not the same man." This is from the ancient Greeks, before Socrates, and has inspired people throughout the ages to reflect on how things change and how we change along with them. And how we MUST change or make (frequently terrible) mistakes.

Please choose a clergy person that you trust to counsel you about the guilt that is causing you to throw yourself under the bus of your husband's long-term illness. Trust in the God who shows us the way when we really need to see it, and thank him for the time with your dear husband.

I'm sorry if I've come down hard on you, but I am caring for my husband too. I understand the decisions we have to make, and I know how difficult it is. From my perspective, you're going down the wrong road. Could you possibly believe that God has guided you here? And that those of us who responded are his messengers sent to wake you up to a better way of thinking? Just a thought.

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It is very hard to watch the person we love and married decline before our very eyes. However it is part of life especially as we age, and especially with any of the dementias.
My late husband too was 12 years older than I, and when he developed vascular dementia years after having a massive stroke, I too wanted to be able to care for him at home. Not so much because of what he wanted, but because of his very limited speech since his stroke, I knew that he would struggle trying to let others know exactly what he was needing if he were to be placed somewhere, and might suffer because of that.
I am grateful that I was able to keep him at home until his death in 2020.
Was it easy? No, but once he became bedridden, I hired an aide to come put him on the bedside commode so he could poop, and by then he was also under hospice care so their aides came twice a week to bathe him and a nurse once a week to check on him.
While I respect your wishes to keep him at home, I hope and pray that you will also know and honor your own limitations. We're all only human and we all have our breaking points.
What saved me(literally)was my local caregiver support group that I attended once a week. There is something so very powerful about being able to share with others what you're going through and who understand because they're going through similar things. So please find one in your area.
Also make sure that you're taking time to do things that you enjoy, as that will keep you energized and give you more patience for the journey. It can be something as simple as taking a walk around your neighborhood, going to lunch or supper with friends or even going to church.
Also educate yourself as much as possible about the disease of dementia. as that too will better help you understand what your husband is going through. I always recommend the book The 36 Hour Day to start, along with the many helpful videos on YouTube by Teepa Snow, a world renowned dementia expert.
And then of course again know your own limitations. There may come a day when you'll have to do what is not only best for him, but for you as well. And that may very well mean placing him.
40% of people caring for someone with dementia will die before the one they're caring for from the stress of it, so PLEASE, PLEASE, take good care of yourself, so you can enjoy this last journey with your husband best you can.
May God bless you and keep you.

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My DH has dementia. I remember him as a brilliant, responsible man and it is so hard to watch the decline. Any advice?

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