After years of trying, we finally got my widowed 94-year-old father with Parkinson's, MCI and/or moderate dementia, and metastasized prostate cancer to move across country where all of us "kids" are. Since August 1 he's been in a nice $7K/month ALF that he chose on a previous visit. We shipped a bunch of his stuff across country and put as much of it in his apartment as we could. He isn't "happy" there but is sort of resigned to his fate, and he wanted to be near us in his final time.
In the last couple weeks, his evening behavior has gotten erratic; it didn't seem to be a problem at first, but I've had 2 alarming phone calls where he either sounded very depressed, confused, hostile and/or almost drunk... and there have been 2 alarming visits by the kids, where he's hostile, very anxious and confused, agitated and paranoid. He thinks the ALF is watching his every move and getting ready to 'throw him in the loony bin.' The days are getting shorter, so that could have something to do with it, and we're in heading into gloomy/cloudy NW fall and winter, not getting much light. He's a loner, not interested in most activities except having his kids visit. He's lucky we are so caring, since he's been a difficult guy and a true narcissist his whole life. He doesn't think the rules of aging, illness and death apply to him and is always talking of the day he can drive, travel, etc. again. He's mostly deaf (doesn't use his hearing aids since they're lost within a day; can't remember to adjust the TV amplification device he's using as an aid to hear folks). He's blind in one eye and half blind in the other. So essentially, he's pretty isolated. He does go to the dining room on his own for 2 meals a day. He's annoyed that the aides who come to dispense his meds (which he could have "handled himself" he says) just walk right in. They knock so softly and since he's so deaf, their sudden presence startles him. We installed a doorbell and some of them continue to just knock lightly and walk in. I made a sign saying "Please ring doorbell more than once, do not just tap and walk in." Hopefully it's better now but they seem to ignore the doorbell, tap, and walk in. Neither of us like it.
With all that, do you think the stress of the move is catching up with him? Is it all downhill from here? I'm guessing it won't get much better given his age and diseases and such. I scheduled a doc visit for Tuesday to discuss PT/OT since he is very unsteady on his newly-accepted cane, but refuses a walker. He doesn't agree there are any problems (he's a lifelong denier of everything) so rather than talk in code at the visit, I send messages to the doc. The ALF is pressuring me to get him to accept a walker that works for the Parkinson's gait, and I've been trying. The doc may have better luck.
The other big problem is that some years ago, he put together a revocable trust, health proxy and a POA, and made my sister POA. This was before he got Parkinson's in his mid/late 80s. When he moved across country, he and my sister agreed that she was to handle renting his house out and helping to manage his finances, but with this recent worsening of evening mental state he's now questioning why he made a POA and whether his "incompetent kids" really know what they're doing. I'm worried that because he's still competent, he might upend the whole apple cart and we'll have to handle that nonsense. It's very painful and stressful for me. I surely do empathize with him; after all I'm the empath in the family - too much in fact. Anyway, this weird behavior is only in late afternoon and evening (so far), and I understand it's sundowners. The rest of the time he's his usual unpredictable, somewhat cranky self, but much more manageable than he used to be. He often expresses his gratitude and love for all our help. It's taking 4 of us kids spinning plates to help this guy get settled and visit him, and it's exhausting. What was my question? LOL. Thanks for listening. :-)
Another reason for decline might well be because of time difference. If he was on East Coast and moved to West Coast the time difference is quite substantial. (I get goofed up with an hour change 2 times a year)
Changing POA if he is competent, and the Attorney would determine that talking to him can be done. Who would he make POA? Another sibling? If so is that a bad thing? If he has a diagnosis of dementia it is possible that an attorney would not be able to change POA.
(is renting the property a good plan or would selling it to pay for his care be a better option?)
By the way, look for a doorbell that will flash lights so that he also gets a visual that someone is entering the room.
Make sure your Dad is not suffering a UTI. I agree with Grandma1954 about the time change being an issue. Read up on strategies for Sundowning, like putting timers on all his lights so they go on early. Talk to the admins or director of activities and ask that he be encouraged to go to an event in the afternoon (or when he is sundowning). Paranoia is a feature of dementia, as well as negativity, loss of empathy, logic and reason, and memory. Watching negative or frightening content on tv won't help either (even the news).
I wouldn't be so quick to jump through hoops to for him to change his PoA. Has he had a medical assessment for cognitive and memory function? If not, I'd work on getting this done so that everyone knows where he stands and whether he *can* change his PoA.
Learn to use "therapeutic fibs" to keep him calm, since he will probably be less and less able to do this on his own as he continues to decline.
I wish you all the best on this journey. Be sure to watch some Teepa Snow videos on YouTube to help you learn about and understand dementia and methods to use when engaging with them so time together can be more productive and peaceful.
When he moved in we were told that some resident ambassadors would reach out to him and this has not happened to my knowledge. (I think there are about 150 folks in the building.) It's hard to know what to expect of the ALF beyond doing a morning check in and getting him his meds 3x a day. One problem is money, of course - the med administration cost extra on top of the base fees, which we expect, but something like charging $500 a month for staff to once in a while stop and remind him how to adjust his hearing device... well, you can see the problem. We have to pick our battles. It's part of that "point system" of assisted living care, which I can't find much about online but know it's common in ALFs. We're in Seattle and this is not the most expensive ALF around here, but is more expensive than many.
RE: the sundowning tricks, he's likely to override them, like turning off any lights that come on early.
When I took my mother off of her doctor recommended daily dose of Mira Lax, her sundowning improved - it took a few weeks, but now one year later it's pretty much disappeared.
Mira Lax is polyethylene glycol which is a petroleum based chemical that gets into the brain and wreaks havoc.
I have no earthly idea why doctors don't recommend using good old Milk of Magnesia. It works and it's not toxic.
Your Assisted Living Facility seems much like where my father resides. They feel that they are responsible for making activities available and keeping the residents generally safe, however, they are firm believers in the autonomy of the individual to make their own decisions on whether or not to participate and to be able to live their life on their own terms. I think it sometimes seems like they are ignoring the resident, or not doing enough to "make" them participate. My dad, like yours, no longer participates in activities and I'd love him to get out of his apartment more but he's still capable of making the decision if he wants to or not and just says "no". It's a bad decision on his part but it's his decision. I've learned to just accept it, although I keep encouraging him (and he keeps getting annoyed at me.)
I think stalling techniques are best for your fear of him changing the POA and the revocable trust. I'd not bring it up or try to discuss it with him as it might make him dig in more firmly on making changes. If he does bring it up just give a non-answer such as "I understand you feel that way" but don't do anything to help him do it such as contacting a lawyer or anyone that can actually get the change accomplished. If he can figure out how to contact the lawyer on his own and get the changes made on his own then he'll probably be deemed competent to make those changes but I doubt that he'll be able to do that. Just deflect that whole discussion. He's probably just acting out in the only way he can right now to express his displeasure at getting old and being uprooted and he's lashing out in the only way he knows.
The first few months of assisted living are hard for both the person living there and the people who realize that it was a necessary transition. Start pulling back on your visits, which might encourage him to participate in activities (or not). Don't allow him to be dependent on you for everything, including his entertainment and happiness. He needs to find his own way.
Legitimate question: can a 94 year old with Parkinson's really find his own way? I don't see him as being able to create a social life in this new scenario, sorry to say... but you're right, I don't want to be solely depended on. I have 3 siblings and we share visiting duties but if he goes a couple days w/o seeing one of us, he gets anxious and calls with whatever problem crops up, even if it's not terribly important (to us).