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
Comments
-
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
4 -
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.
7 -
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.
4 -
Of course can't predict the future but curious of others who have been able to
2 -
No plan yet have called some in home care places very expensive.
4 -
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!
11 -
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
17 -
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.
2 -
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.
6 -
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.
2 -
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.
7 -
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.
4 -
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.
6 -
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.
5 -
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.
3 -
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.
3 -
I was able to keep my husband at home until the end mostly because he had early onset. He was 57 and I was 53 when it started. I was in good health, so I could do it. I had a hired caregiver who came in twice a week for three hours. That enabled me to get much needed respite.
My hubby was able to walk, feed himself and dress with some supervision. He was fully continent until close to the end. If these factors hadn't been true, I would have been forced to place him, I think.
8 days before his death, he suffered a major seizure and fractured both shoulders. That was his brain's signal that the end was near. I needed a lot of help after that, but he was already on hospice care and they helped me a lot.
1 -
I put my husband in memory care just over a month ago and very disappointed. He is almost not verbal because his Alzheimer's affects his frontal lobe but he knows what he wants to say which makes it even more frustrating. My experience is that they treat him more like he's in assisted living than memory care. Many aids and no time to get to know my husband or his speech patterns. They are supposed to check on them every 2 hours but I have a camera in the room and the last time it was over 5 hours between checking. They will also ask him if he wants to eat rather than just saying it is mealtime and taking him out. He may or may not respond in a way they understand so sometimes they will just say okay then let's get in bed as early as 5 pm. In my opinion so they won't be bothered. I am going to try a smaller care home with only 5 residents. I will monitor by hidden camera and voice recorder (let them sue me I don't care) and see how it goes. He is partially incontinent. Sometimes they check and sometimes they don't. Don't think they use a water barrier cream although they said they did. He spends hours in his room walking in circles and taking bedding off and folding it and putting it back on when he could be put in the common area for some stimulation. You will never know what is really going on without a camera no matter what you are told. Yes, there is short staffing and changes of personnel. Sorry but you are still paying usually $10K a month and if staff can't be provided you should be told up front. Also, in my case, I don't use their doctor. Apparently I have to noticed my husbands health conditions myself then which I was never told. Within 2 weeks his feet and lower legs were swelling greatly. I was never informed and I had to take him to the doctor and get a diuretic prescribed. It's actually looked painful. have to deprive myself of every extra and reduce my food intake to almost nothing and hope my car doesn't breakdown just to pay the bill. If that is the type of care he is going to get I would rather go without sleep and care for him myself with some day help until he dies.
4 -
I was able to keep my DW at home until she passed. I thought I was losing my own mind by the end and I had help from two caregivers and hospice. She began constantly wandering, not sleeping and then a constant fall risk. It was the most stressful year of all, her stages 6 and 7.
Have you called hospice yet? I believe your spouse would likely qualify. When I called an they explained the type of help they could offer me, I burst out crying. It was so overwhelmingly helpful what they were telling me. Please don't wait to call. They will come assess him and if he qualifies, they'll kick right in. They were so amazingly helpful and Medicare pays for it all. No charge to me whatsoever.
Big hug.
4 -
What services did your hospice provide? Do they all provide the same things?
0 -
Yes!
0 -
Hi sherryandwilliam,
I am making the grand attempt to keep my dear wife at home as long as I can. Ten and half years so far - it has been hard but I am still hanging in there. And there is nothing wrong with making the decision to place your loved one in a care home when you feel you just cannot do it anymore.
Hospice is wonderful, and I want to suggest to everyone here to look into it. Certainly ask about hospice If your loved one is at Stage 5 or further. It provides tremendous help, and it is comforting to have a care team evaluate your loved one (and your state of mind) regularly.
I asked my wife's primary care doctor about Palliative Care, and she got that started for my dear wife. In turn, the Palliative Care doctor recommended hospice services pretty much right out the gate, partially because of how long I have been caring for her with NO help (a common theme here).
Your loved one can be "in hospice" anywhere: at home, in a care home, or even during the day at a day care facility. They go where your loved one is. They provide a nurse, bath aid, social worker, chaplain, various therapists (like music), and volunteers to sit with your loved one to give you a break. Please ask about hospice. It does not mean your loved one is close to death, but they are there for you if that is also the case. Another great benefit is the 24/7 phone access to their nurses if your loved one has an episode.
Your loved one may or may not be renewed for another round of hospice after the first 90 day period. Even so, please ask your loved one's doctor about it and do not hesitate to have them in for some much-needed support.
Love Bill_2001
3 -
My DW’s doctor referred us to hospice a couple of months ago but she was denied by them. At that time DW needed help with medications, oral care, showering and dressing. She is still mobile but is now in pull ups as she’s had accidents lately. Should I maybe reapply with hospice?
1 -
What hospice offered was this:
- At least weekly nurses visits, though more if you called for more. They did checks on overall health and discussed medications and options and care.
- They brought over a hospital bed, a toilet seat, a walker and a wheelchair.
- They gave me all the bed pads, adult pull ups, clean wipes, mouth wipes, etc. that I needed.
- They took over all medications and I could call them whenever I needed to talk to them about the meds. They worked with me on what worked with my DW and I often got the new prescription that same day. This was a HUGE relief for me.
- They took over showering my DW.
- They offered in home pastoral support from whatever type of religious you practice.
- If I had an emergency, they would take care of getting my DW an ambulance to the correct hospital.
- In-facility respite care if I needed to get time away from care.
It was incredible support and care for us.
5 -
It won’t hurt to try again @blacksparky And if you have more than one agency where you live you could try a different one. I pray that they come through for you this time.
2 -
We kept my mil at home through her death at stage 7. By that point, we had round the clock care in the home and hospice. She was totally bed ridden and couldn’t do anything by herself. Once they can’t walk, sit up, and are bed ridden, the care becomes harder because you can’t move and lift them by yourself. Plan for in home assistance. Ask agencies if the home health care workers can administer injections. If they can’t, you will need to bring in skilled nurses if it becomes necessary.
2 -
My DH is in stage 6 of Vascular dementia and Alzheimers. I was his sole caregiver and had planned on hiring help if I got to the point I couldn't handle it. He was still walking and eating but mostly incontinent. He became aggressive and started refusing care. Ultimately after a stay in the hospital and a month in transitional care I was forced to put him in a memory care facility. Now he is in a wheelchair. I visit him every day and miss having him home. The last few years have been very hard. During the last year I only left the house once a week and sometimes not even that often. I gave up just about everything I enjoyed doing. I ended up retiring because it was too hard to keep working. I sure tried to keep him home.
3 -
I am planning to keep my DH home the whole time. I am 56 and working full time from home so I do expect needing help down the road.
I did use hospice while caregiving for my aunt and they were amazing! They taught me how to change briefs with her in the bed and how to change her sheets with her in the bed. So much easier than hurting yourself trying to get them up.
3 -
Like many others I kept my DW at home until she passed but it took help from several sources. I was her primary caregiver for the entire time but did have some part-time help which started at a few hours a few days a week up to about 6 hours per day seven days a week. I employed two ladies who became part of the family. Tried services to start and fired them pretty fast. Finding good people who really understand caring to someone with AD is hard. Many claim experience but I found out quickly, their textbook training was pretty worthless if not just bad care. Hospice was provided over the last 8 or 9 months and was terrific. They do have to periodically evaluate the status but, in our state, as long as they are able to document a continuing change and decline their services are renewed. The help from the caregivers I employed helped me to find a few hours for myself and to run errands, appointments, etc. which helped me survive. The physical aspects of being the caregiver can be very hard and I can easily see where some ladies would find it more than what they can handle. In some cases it was almost more than I could handle and did strain my back a few times. I am a large man and my DW was a petite woman so I had an advantage. There is equipment to help and hospice can assist. Hospice also arranged for a few visits from a physical therapist to evaluate and suggest techniques and "tricks" to allow me to do the work.
4 -
I hope to keep my LO at home, I am planning on getting help. I have an ADU, it may be what I'll need to entice a health worker here. We live in a rural area where the cost of living is very high and there's not a lot of services available.
0
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
Read more
Categories
- All Categories
- 638 Living With Alzheimer's or Dementia
- 353 I Am Living With Alzheimer's or Other Dementia
- 285 I Am Living With Younger Onset Alzheimer's
- 17.8K Supporting Someone Living with Dementia
- 5.7K I Am a Caregiver (General Topics)
- 8.7K Caring For a Spouse or Partner
- 3K Caring for a Parent
- 229 Caring Long Distance
- 180 Supporting Those Who Have Lost Someone
- 12 Discusiones en Español
- 1 Vivir con Alzheimer u Otra Demencia
- 1 Vivo con Alzheimer u Otra Demencia
- Vivo con Alzheimer de Inicio Más Joven
- 11 Prestación de Cuidado
- 2 Soy Cuidador (Temas Generales)
- 8 Cuidar de un Padre
- 23 ALZConnected Resources
- View Discussions For People Living with Dementia
- View Discussions for Caregivers
- Discusiones en Español
- Browse All Discussions
- Dementia Resources
- 8 Account Assistance
- 15 Help