Some of you know my story. After unexpected passing of a mid-sixties parent, I have responsibility for sibling with MS... very compromised and declining, many cognitive issues and a personality that is difficult at best.
I have a great deal of experience with elderly caregiving, dementia, etc. However, between dealing with a different disease, a younger person (40s), and the hoops and crazy of Medicaid, I am finding myself once again reaching out to this community.
The MS forums have been useless in ways that have surprised me. Most of the MS literature won’t even touch the serious cognitive decline that can come with that disease. It seems to be written for people with milder symptoms than my sibling has.
I use a great deal of what I know from dementia caregiving, but the logistics of placement, especially group home vs SNF, as well as how to handle any issues until social worker actually gets him placed, are wearing me thin.
I have spent months getting him on Medicaid, so much paperwork, so many overlapping meetings, one hand not talking to the other... this I expect from government funding. But I can’t seem to really convey how compromised he is... this is in part, due to him. He has all of the hallmark elder dementia traits we speak of so much here on agingcare. He says he can do things he can’t ( 12 years ago driver’s license was taken away), doesn’t recognize his own cognitive issues (I can manage, I am fine, but I want you to do everything for me).
Anyway, Social Worker is looking at a very small group home with a caregiver. I am not certain SNF wouldn’t be more appropriate.
Has anyone else had ANY experience with this? Just throw stories at me. I can sift through what is applicable. Will try to post more details later. Thanks.