Hi everyone, I reached out the other day because I am fairly new to this entire caregiving scenario, granted I am not doing the direct caregiving as I live far away from my dad, but recently he had to be placed in a short-term rehab facility after a stint in the hospital, it seems like he had a sudden cognitive decline that occurred over the span of maybe a week, to the point where he went from being able to care for himself to not even being able to use his cell phone, make it to the bathroom, etc. I’m finding it really difficult, a month into this entire situation, finding any answers or a definitive diagnosis. Once they got his kidneys back on track, and he was clear of UTIs, his cognition has not returned. It’s on me now to find a neurologist that can run an assessment, but they are all months booked in advance. My dad is in a skilled nursing facility, he is allowed to stay there even though his Medicare has run out and we are going to private pay, but if he starts becoming a wandering risk, they will require him to go to a memory care facility. I’m trying to have all my ducks in line as I am completely overwhelmed managing this entire thing, navigating his finances, navigating Medicare and the eventual transition to Medicaid. Has anyone had any experience with almost sudden cognitive decline? He’s had some memory issues for the last six months or so, here and there, but been able to manage on his own and I hired Visiting Angels helpers to come a couple of times a week to take him to appointments and out for food. It was kind of a sudden decline that started at the end of January, and by mid February was when I had to make the call for the wellness check that brought him to the hospital. I can’t believe how difficult it is to get more of an assessment or more definitive answers about what he has going on. He has hallucinations, and then periods of long clarity where I’m able to have decent conversations with him. Some days are better than others. It’s very difficult not to get frustrated with him as he asks me when I’m going to come home and help him, I was just there two weeks ago and I lived 3000 miles away and have three jobs. I’m barely treading water right now. Managing his situation has become a second full time job. He is not able to care for himself, but he talks about going home. It’s so hard not to get frustrated on the phone with him, because sometimes he does sound very clear in the head, and I have nobody to help navigate how to manage talking with him in this type of a situation. Does anyone have any experience with somewhat sudden cognitive decline, sudden in the sense that he went from being able to take care of himself to not being able to do so in the span of like a week or two?
You are telling us he is in care, and NO ONE will assess him until months out?
Not even when he was hospitalized.
I am afraid I can't imagine intervening in all of this without being there with him.
I wonder when the last time was that you visited your father and found him living alone and thriving? Because I sure "missed it" being so far from my brother. It came out of the blue "with the call from Desert Regional Hospital".
Really, without any evaluation and diagnosis you are up against it. I am afraid you are going to have to take family leave if you are currently working and go to assess all of this, everything from him to his home, to the care and MD evaluations that is going on (rather NOT going on) for him right now.
My brother had a similar thing at the beginning of his problems. I hadn't seen him in a year, at which time his balance was poor. When I got "the call" he had had an accident and he was found to have "early Lewy's dementia" as an "incidental finding". When there he told me he had known he was "failing" and indeed in his mailbox was an envelope addressed to me, but with his address, so mailed back to him. Seemed sudden but he had been suddenly hanging up on me and saying his phone was out of whack, and the phone company telling me it was fine.
I had to fly to Palm Springs and that was the beginning of a very busy year that no, I could never have managed and still remained working. I was retired. Was made his POA and Trustee, we had to see lawyers, get that in place, sell his last little home, find an assisted living facility. Very daunting year to be certain.
I do wish you good luck.
Ask if the nursing facility has any geriatric specialists who visit, and put your father on the list to see him or her. Also ask for the doctor to call you when he or she is there, so you can describe the sudden decline.
This sounds horrendously challenging, and I'm sorry for it happening, especially so unexpectedly.