Should we go into a Care Facility?

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Coup

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CALS
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CALS here -
It's been a wild four months since we got our diagnosis. My mom was up and dancing at our wedding in August, and since then her health has gone completely downhill. She was diagnosed with ALS in November at Mass General and has since lose her ability to dress, toilet, walk and adjust in bed unassisted. She is losing her ability to speak and to eat solids and it's all we can do to keep up with scheduling appointments in time to get ahead of her next need.

Long story short, she lives in a rented townhouse. It's old and cramped and was cozy when she was able-bodied. She cannot use the toilet safely and need someone present to help her off her commode frame over the toilet every time she uses the bathroom. My wife, brother and I are her primary caregivers at the moment, but it's becoming increasingly clear that she needs around the clock professional help, especially when we are at work. We are working to get her a PEG and she is already on a BI-PAP when she needs it.

I am becoming increasingly uncomfortable with her living situation and the lack of accessible infrastructure. The landlord has offered to help remodel the house, but it seems unrealistic. We have an opening at a wonderful assisted living facility nearby and as POA I am tempted to insist she goes. With COVID we are worried we will be unable to visit and to help her retain a sense of normalcy in this major change. I also am concerned she doesn't have much time left given how quickly this has progressed.

Should I prioritize her safety and get her into a facility while I risk not being able to see her daily? The last thing I want to do is shove her into a care home and be unable to see her. Every care facility in my area is at least 1-2 years wait list, and we have a really rare new building opening this month - I think we should jump on it. Based on my research and her progression, I don't think we have 1-2 years to wait. I just want some perspective on care facilities and who has experience with non-specific ALS facilities

Thanks for your input and this forum has been so helpful.

-Coup
 

Nikki J

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So sorry.

very hard question.
first are you sure this facility will even meet her needs? Assisted living care is usually pretty minimal. Her needs are going to increase probably pretty fast from what you said.

as far as the visiting goes if you can’t be there regularly that is another huge problem both for supervision and just plain interaction / human contact

can you not use the money you would spend on assisted living on home care? if she can’t managed her present living arrangement and can’t live with one of you can she be moved to a better apartment near you?

we just had someone with a very similar situation. A few posts into it we discuss living arrangements
 

lgelb

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I'm sorry she and all of you are facing this. Agree with Nikki completely, and do check out the thread she linked to.

Especially with what sounds like fast progression, as in the previous thread, a good tradeoff could be to consider maybe a rental + paid assistance that would meet her needs vs. a facility where basically you would have no control even about seeing her, and very problematic as she progresses. I doubt she would be able to live in the level of care in this building for any length of time.

Just to remember, acting on her POA is something that should kick in if/when she is unable to articulate her own wishes. It doesn't sound like that's the case.

Best,
Laurie
 
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