Is Memory Care inevitable?

KathyF1

My DH is stage 6. So far I’ve been able to be the sole caregiver. Family sometimes gives me a break. He won’t cooperate with in home care, just follows me everywhere trying to get away from them. Thank God for meds that keep him agreeable (mostly) He is incontinent and at times bowel incontinent. The underwear from Parentgiving have kept him from “leaking”. I have to help him bathe, brush teeth, dress.
So. . . What can I expect in the future? I hear they can become immobile. Is this a definite? If that happens would I need in home care ( a second person besides me) to help 24/7? Or at that point is memory care the only choice? Just trying to think ahead-

SDianeL

you are asking the right questions. Unfortunately the answer to will they become bedridden and immobile is maybe and probably. It depends on the person and what parts of the brain are affected and whether they will need strong medications for agitation. If that happens you will need 24-7 help to care for someone bedridden or place him in memory care in my opinion. There are lifts to help but it’s difficult to do by yourself. Hospice does help and provide many services but not 24-7 care. It also depends on his size and your age, health and strength. I would make plans for both. Always have a Plan B.

SDianeL

Here’s a link that may help. It explains end stage care requirements. https://www.alz.org/help-support/caregiving/stages-behaviors/late-stage#:~:text=A%20person%20with%20late%2Dstage%20Alzheimer's%20disease%20can%20become%20bedridden,and%20%22freezing%22%20of%20joints.

Aarron

Always have a backup plan in case you should get ill. I had a MC for my husband for respite care and got all the paperwork in. Two days ago I sprained my ankle, I couldn’t walk let alone take care of DH as he’s in late stage 6. Thankfully they had a room for him. Please have plan B it eases your mind and soul

harshedbuzz

@KathyF1

You've already gotten some excellent insight into your questions.

So. . . What can I expect in the future? I hear they can become immobile. Is this a definite?

It depends. If your DH has another health issue that provides a so-called exit ramp before stage 7 then he might remain mobile until the end. Stage 7 often means bed bound and unable to assist in a transfer which means 2 people 24/7 or you learning to use a Hoyer lift alone.

If that happens would I need in home care ( a second person besides me) to help 24/7? Or at that point is memory care the only choice? Just trying to think ahead-

The vast majority of MCFs that allow a resident to age-in-place, require that new residents are ambulatory and self-feeding on admission to the facility. This is done to balance the workload of their teams. If you wait to place, your only option might be self-pay at a SNF which is considerably more expensive. A stroke, broken or illness that causes a sudden loss of abilities can take MC off the table in a heartbeat.

SNFs are typically semi-private rooms and don't offer much in the way of dementia-informed activities. Another piece to this is that most MCFs will ask family to provide additional private caregivers at a certain point, in some places hospice services will meet this requirement without more out-of-pocket for you.

HB

Vitruvius

One truth about dementia is that there is no normal path. Each PWD’s journey can differ wildly from others who at first seem similar. One woman in my DW’s MCF recently died at age 100 and was quite mobile until perhaps a month from her passing, and her advancing dementia, although long running, was still relatively mild. For my DW, age 73, her decline is unfortunately very rapid and she has no other comorbidities and she will almost certainly pass fairly soon from dementia itself. Not only is she immobile but her muscles are becoming tightly contracted making it difficult to move, change or bathe her, even with two people. This is common in very late Stage 7. The hospice nurse judges my DW at the very end, Stage 7f on the Fisher scale.

Most residents of my DW’s MCF have some form of mobility issues and are often fall risks due to dementia interfering with the body’s balance control. My DW was slim and fit, but when she fell I still had a lot of trouble getting her up as she seemed unable to cooperate with my effort to get her up, sometimes to the point of being counterproductive.

MC is not a given should your LO enter Stage 7, but a good amount of extra help will be required. At an MCF the aides are experienced at this and they can go home at the end of their shift, for a spouse caring at home it is more stressful, at least it was for me. Not to discount the commitment of those who intend to keep their LO at home until the end, but it is my opinion that the care given at a quality MCF is as good as home care.

KathyF1

Thank you all for your replies. It seems the sensible thing to do is to get on the list at a MCF. So hard not knowing what is to come.
I did tour two facilities. The first- no way. Just didn’t impress to say the least. The second, much better but they do not accept those that can not transfer any longer, from bed to walker for instance. In that case their facility sends them to a SNF which they told me was kind of like a hospital, not a home.
Right now I know at home is the right choice. He is desperate to be with me, my guess is they feel so insecure that they really need their person. I assume that passes over time, when he may not know me any longer. One day at a time.