As some of you know, I am handling care for a disabled sibling (no other family to help) after our mother died unexpectedly. Last year, I finally got him into a wonderful small group home. He is very debilitated with MS and now Major Cognitive Disorder (basically the new diagnostic term for dementia). He is not pleasant to deal with. At all. I handle care because there is basically no one else. Luckily after years of caregiving, in our home, to my in-laws who both had dementia, I am good t boundaries:)
But, it is still exhausting. Especially since he has now managed to get himself booted. I knew it was coming. He is pretty much a jerk to staff, non-compliant, etc. I would have liked to see him moved to a larger facility, however, his SW is taking him at his word that he wants to move into an apartment (he is on Medicaid) where he gets care. With a roommate. And that means signing a lease and setting up all of the services we finally eliminated last year before he was moved to the all-inclusive group home.
This is such a mistake. He will be there no more than 3 months before he will start refusing care... again. I have been through this with him a few times already.
I have not worked to have him declared incompetent because, frankly, I want to push that out as long as possible, because it means that I have some say in how much I do. If I choose not to do something, at least there is a team in place that is responsible for him and it isn’t me. That also means I try to give him some autonomy. The SW wants to give him “one more try” to give him what (he says) he wants.
I told him a while ago that I will not move him again. Last summer was the last time. I am tired. Every time my DH and I think this caregiving nightmare will have a reprieve, something else comes up.
So, I am probably just going to hire movers (which is enough work as it is) because I am not doing the physical work again. Has anyone done this? Especially if they aren’t present to oversee?
I understand some people may find this cold, but we have been around this block so many times... this is a boundary for us that is non-negotiable at this point. He is never, ever happy. And he never really has been, even before he got sick. He showtimes pretty well, but he is very compromised cognitively. However, his jack—- skills have not been diminished by the brain damage.
This is probably more of a vent than an actual question. I am just so very tired of having responsibility for dementia, lol.
PSA to recent posters wondering how they can keep the parent at home so they can feel “happy”, most of the time you can’t. And if you are already having a hard time saying no to unreasonable requests, it gets worse.