Anyone able to keep alzheimer spouse home until death
I have been trying to find anyone with experience keeping spouse at home with help of hospice until the end. My husband is finishing up stage 6 right now. And so far I have been sole caregiver with no outside help. He is 71 can still walk. Can eat on his own like a 2 year old. I have to shower and dress him. He just had covid for the first time and after that was a decline where I now have him in pull ups. I escort him to the toilet each time. He seems mostly content with me and doesn't get aggessive. He gets frustrated with me at times but goes out of it pretty fast if I respond correctly not escalating his emotions. What a crazy new life I have. We have. The worst I am forgetting the man he was because this has been going on so long eight years probably closer to ten. The beginning my denial was so strong. Thanks for any advice or answers. I am 70 and want a future for myself and some resources left for me to live out my life. Not being selfish just realistic
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My spouse and I are a few years younger, but in the same situation. I've found some help to start coming next week. Up until now, I've been able to leave him alone for a couple hours at a time. I hope to keep him at home, but who knows.
He was on hospice for a few weeks a couple months ago. They were very helpful, but discharged him because he can still walk and feed himself. If he progresses to a walker, I'll ask for another assessment.
I'm anxious to hear from others who have managed in the home
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My best friend and I, both now widowed, kept our spouses with AD at home until they could no longer walk. They then went to memory care where they could receive better care than we could provide.
Other posters on this board have reported that they literally broke their backs lifting their spouses. In fact, it is not unusual for both members of a couple to enter nursing homes simultaneously because the caretaker ruined his/her health supporting the other.
Since I think it is very possible that you will be forced to place your husband at some time, I suggest you see a CELA in your State to learn how to retain some resources for yourself when/if that happens.
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I was able to have my husband at home until he died. It took outside help. A few hours per week at first…then 24/7…than hospice.
Do have your plan B in place now in case you need it.
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Of course can't predict the future but curious of others who have been able to
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No plan yet have called some in home care places very expensive.
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My husband is also Stage 6. A little further along than your husband, been wearing incontinence underwear for about 8 months, sometimes he goes to the toilet and lots of times he doesn’t. I was also the sole caretaker until 2 months ago when I found an amazing caregiver (found her on Care.com). She comes 4 days a week for 6 hrs each day. I went from feeling overwhelmed to “I have a life again”. I plan on keeping him at home but finding the right caregiver was a game changer. I tried 4 others before I found the winner. She really genuinely cares about him. And he knows it. And she has worked in hospice and in nursing homes. I think you should try to find help. It makes things feel manageable. Hugs and prayers to you!
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I was able to keep my DW at home though to stage 8. The last 18 months I hired a woman and paid her $500 per week and room & board. Her task was to keep the house, I took care of my DW. The helper really just did the house and cooked maybe 1-2 times a week. On one or two occasions she was an extra hand with physically moving my DW.
My education was in psychology and counseling, I think that helped a lot. I also raised a son who had behavior issues so I Iearned patience the hard way, over the decades.
Her neurologist had a NP who was available pretty much 24/7 via email. She had prescribed seroquel which was very effective at controlling delusions. A small dose (25mg) in the early afternoon for sundowning and then a little at about 8 before bed. Served crushed in chocolate pudding or apple sauce.
We did quite literally everything together, shopping holding hands, Dr's appointments, hers and mine. What ever she said i acknowledged and supported. In the grocery store I would say "yes that a good idea, lets get in on the way out". I don't think I ever said no the last 2-3 years.
Every night after she went to bed I read posts here to know what to expect next. I had Depends 3 months before needed and when they were needed I threw away all of her underwear, so it was just "what's available". I installed a bidet toilet to keep her clean, that helped.
It was challenging sometimes at the time but in retrospect I still miss her and treasured our last years together. Good luck, I think wives are easier than husbands. Rick
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My DH is 72, in Late Stage 5 and I am 66, still working full time. He has had deficits for years, and in hindsight, I now see the early signs. I now have a companion with him 4 days per week while I work and his brother and sister cover one day per week. I always planned to keep him home but have toured MC based on advice here. I also have a CELA and have legal documents in place. I couldn't do this 24/7. He doesn't like the companion and kicked him out Friday. Thank God he isn't quitting. It is possible to keep people at home but we all need help. I've been a home health director for decades, a nurse by trade. And that certainly helps me.
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My DH is 77 and stage 7. I am 73 and hopefully I will be able to keep him home until he dies. I have been dealing with this disease for 10+ years. I am tired.
I have help with Hospice and the VA. Both organizations have been so helpful and I am so grateful. My son lives with me and provides extra help when he is off work. Again I am so grateful.
I am not totally positive I can continue to keep DH at home however I try not to look too far ahead and take each day as it comes. I do have a plan B.
My priority for me is to stay as healthy and as physically strong as possible. I gain strength from this site and I know others who have kept their loved ones at home until they died.
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I had hoped to keep DH at home but I had multiple doctors tell me to place him. This happened when I brought him to the ER on several occasions and his Geri-psych also said it was time for MC.
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My FIL kept my MIL home the entire time. He did end up hiring a part time person that would come in and stay with her while he ran errands. I would go over after work daily and help as much as I could. He did use a hoist to help get her up at times. He was 90 and she was 88 when she passed. He was quite amazing. Now my husband has it. He’s 81, I will be 69 soon. I plan on keeping him with me. Finances do play a role in this. Some of us (especially younger ones with older spouse) find ourselves in a difficult financial bind. We have too much to qualify for Medicaid and too little to afford long term care. I know I will need assistance at some point and have put money aside for that day.
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I too would like to keep DH at home. He's not as far along cognitively, he has VD and previous strokes but his legs are getting very weak, standing unassisted is really hard. I see his physical health declining so much. What happens when he can't stand or walk??? Wheelchair? He's 6'6 and 235. I've had back surgery and broke my back several years after surgery. I can't lift him if he can't do most of the work. Fine and gross motor skills are really declining. I have an appt with CELA in 2 weeks. I also want/need a life after this is over.
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I placed DH in memory care when his sundowning became too much for me to keep him safe. While he was there I retrofitted the house with dementia locks, gates, etc to keep him on the main floor and inside. After a year he was much better in terms of behaviors (a good balance of medications and progression of the disease) so I was able to bring him back home. He was stage 6 at that point.
It worked well for 2 months, tiring but do-able and definitely good to have him home and to be able to sleep with him — something I really missed. In the third month he qualified for hospice, which was amazingly helpful. I also hired in-home help a few days a week.
During that 3rd month he suddenly started declining rapidly, and passed within a month. I don't know what triggered the decline. So, yes, I was able to keep him home to the end and be with him when he passed. I don't expect the timeline is typical though.
Near the end (not realizing how close it was) I was planning to take a week of respite to regroup and decide if I really could continue to have him home as it got more difficult. I suggest you arrange for as much in-home assistance as you can — it's a 24-hour job. You need to keep yourself healthy and it's hard to do.
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My DWs mother had Alzheimer's too and her and her 2 sisters tried desperately to keep her at home until she passed. They were all so burnt out, they ended up placing their mom for about 6 months until she was on hospice. Once on hospice, they moved her back in with one of the sisters and she passed away at "home". That was a powerful for all of them to have her not in MC for her passing.
Though I have in my mind that I will try to keep my DW here until the end, I can't forget that 3 sisters couldn't manage it and I'm on my own with this. I'm trying to prepare myself for the reality that I may not be able to keep DW here. It breaks my heart knowing that I may have to place her.
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I have been wondering the same thing. I can not afford to pay someone to care for my spouse. He is at home and most days I think he hates me but I carry on.
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I had to place DH after he broke his leg. Prior to that, he was stage 6, and I was managing with 1aide, 5 days a week for 6 hours each day. The hospital and rehab were too much for him and the psychosis lingered at geri-psych where he became violent to himself and others. I had always planned to keep him here, so the house was ready to support his physical needs. He went back to his baseline (no violence whatsoever) immediately after MC placement. But he was so frightened there and started declining in other ways. He went on hospice after 2 weeks and I brought him home. I had 1 aide around the clock, and we were able to handle it. He continued to fail and passed a month later; I'm still not sure what happened to cause that rapid decline. I don't know that I would have ever been able to take time for a respite away, but Jazzma above is correct…you need to be prepared for what it will take from you both physically and mentally and plan for that so you can stay strong.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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