Hi ccordone, Paul chiming in here. My partner is in long term care, has been for over a year and a half. We have similar situations in being primary caregivers with little or no help and PALS with pain issues.
Long term care or not? That's a tough question. I didn't have much of a choice. It was unsafe for my PALS to be at home alone while I was at work and he was afraid being there with out me so the decision to go was his. Full time home care while I was at work was too expensive.
The adjustment period was awful for both of us. No one really wants to go into institutional care.
At first it was okay, mostly positive. He could still talk and had use of his hands so he could do some personal hygiene and feed himself. No one there had any experience with ALS so lots of teaching.
As he has progressed to total care, things are still mostly positive but only because I'm there so much, 40 + hours a week. There are 5 PSW's and 1 nurse providing care to 49 residents. Over an 8 hour shift that doesn't leave a lot of one on one time and he requires 2 people to work with him.
I take care of toileting, feeding, bathing, ROM exercises etc. i don't have to worry about laundry, meal prep, that kind of thing so I can concentrate solely on his comfort.
He is safe and there are some truly wonderful people there trying their best to look out for him but there have been problems. Putting him to bed with out his BiPAP, breaking his wheelchair, losing parts of his breathing mask and the list goes on. Although there is a lot of consistency with care, there is also a lot of times he has people who have no familiarity with him, his routine or any understanding of his disease.
He is 2 decades younger than most of the other residents so socialization and activities have been a problem. Because he has specific needs, text to talk machine, no one has time to actually practice with him.
In the broadest sense, he is taken care of. If I'm sick or get stuck at work, I don't worry he won't be looked after. As a person with specific needs no, it's not possible, they don't have the time. That's were I come in and fill the gap.
For me, it works. I have no commitments other than work and him. My house is a disaster, don't care. Grown a beard so I can sleep 5 more minutes and not shave. I can't imagine trying to throw in taking care of a child. I can't say it's easier but my focus is him rather than him and everything else.
For an ALS patient, look at the resident to PSW ratio, the lower it is the better.
For pain management, lots of things over the years. Try to identify the type of pain. My PALS has 3, muscle pain from spasticity, joint pain from lack of movement and nerve pain. Currently he is taking hydromorphone extended release, dilaudid and Lyrica. Medical cannabis was also very effective. he's also been on the max dosage of baclofen to help with the spasticity
As has been previously mentioned, ROM exercises have been very effective in helping provide pain relief.
I can't think of anything else, feel free to post any questions you have or PM me if you like
