I wanted to pass along a very late thank you and update. Light background: after a few years of cajoling and worsening dementia, we convinced dad to move across country to be with the rest of the family; he lived alone in his house & neighbors were at their wits end looking out for him. A very difficult process we had to squeeze into a week. He barely qualified for assisted living and after a bout with COVID and a week in the hospital, his dementia got worse and they wouldn't let him come back. In 1 week we had to find him a suitable memory care facility, but had to convince him it was just like assisted living (with locked doors for the OTHER residents who couldn't be trusted to go outside, wink wink.)
After a few months there, he began to not recognize us. After nearly a year, his prostate cancer got more painful, his dementia worsened, and he couldn't tell us from the caregivers. (He was also deaf as a doornail even with hearing aids, and mostly blind. No wonder.) He fell almost EVERY DAY. Bruised all over, but never cracked or broke anything. True to his usual personality, he refused to acknowledge his limitations.
A few observations: - Seroquel SAVED us. Some on this forum think it's evil, but his doctor said it was safe to do a trial, and thankfully it worked well. We'd have had nowhere to place him becasue physical aggression is what gets you kicked out. (He'd gotten occasionally aggressive and hostile toward other residents.) - Having 3 other siblings who cared as deeply as I and contributed equally in different ways... sounds like a godsend, right? Except we all had different opinions on what should be done; one sib went behind our backs and did things without telling the rest of us (typical). Emotions between us were extremely high, with old grievances surfacing, crying, anger, and pure rage, for nearly 2 years. It made the situation so much worse than if there'd been just 1 or 2 of us.- I was appalled at not only the cost ($12/k a month, Seattle) of memory care, but the lack of communication from staff about what to expect. We thought he'd get a choice of what to eat; frequently not the case and he went hungry due to so-so food quality. He kept asking for his toothpaste, shaver and toiletries, but they locked everything up. (They have to treat everyone in memory care the same or others will come in the room and eat the wrong things, etc.) We thought so many things would be different. But staffing was low, and they didn't have time or interest in getting to know dad and what might help him as an individual. I saw him sitting for an hour waiting for food after the server forgot about him but nobody checked. He got dragged out to common areas for group activities even, toward the end, when he didn't want to go - because there are not enough staff to let residents stay in their rooms. (They have to keep an eye on all of them as a group.) They forced him to come to the dinner table the day before he died, because we were there and they thought we wanted to see how they convinced residents to join a meal. (They yanked hard on him in bed, and he DID NOT WANT TO GO.) I could give many more examples.
I came away deeply disturbed by all this, along with the horror of watching dad decline. But especially by the "warehousing the elderly" aspect of companies that build fancy places to take huge $$ but can't get enough staff to give residents better care. This is the industry, I get it. (Dad didn't want an adult family home; we had to find a building that looked like a nice hotel, basically.) I appreciate that there was a place to put him that wasn't "the worst", but it truly felt like hell nonetheless. Thank you for all the advice and listening last year when this came to a head.
Last, I'd like to find a way to improve things for families who are blindsided like we were about the realities of AL and memory care, if anyone has any ideas. Best to all!
Any aide working in Memory Care should have hadva seminar on Dementias. Also, a resident cannot be forced to do something they don't want to. Its against the law even with Dementia present. With any care facility, family has to be involved and Advocate. It will never be perfect. My daughter, RN, has worked in NHs for 25 years. I went to her before I complained. She explained to me aides schedules. What to complain about and what to let go. I have to say in my experience the AL and later the LTC Mom was placed in were good to my Mom. She was easy. I never accused, I asked. Daughter says you want those aides to like you. I so appreciate what they do. Means I did not have to. Toileting was the worst for me. But, this was before COVID. Our area now has a problem getting aides.
I wanted to also say - and in NO WAY do I mean this against the care staff - that many caregivers' accents are so difficult to understand, I wonder if it contributes to residents' confusion. Example: a caretaker in the dining room repeatedly commanding dad from behind to "seet, SEEET!" (He's nearly deaf.) "Seet! SEET! Come SEET! SEEEET! Eeet eez time fa dinna." What she didn't know or have time to do: get his attention, make eye contact, and do a little pantomime. (In other words, treat my dad like an individual.)
I should add: there were many examples of kindness and gentleness, probably way more than we knew. It was probably the norm. But you know how it is - you remember the bad stuff. (Since families were welcome day or night on the floor, we could observe a little without staff knowing. And there were 4 of us to report back to the others.) Another positive - the managers said that as he got worse, costs would rise - but if that posed difficulties, they'd work with us on keeping the monthly rate and points lower than "market rate" which would have put him closer to $14.5k a month. (Though, was it a genuine discount or just creative accounting? )
Anyway, a caregiver's job in memory care is SO difficult, and we felt bad for many of them. There were usually 4 on shift for the 20-25 residents. So many bathroom issues! On the walkie talkies they each had, we constantly heard motion monitors going off when residents moved around in their rooms; these were cues to go check on Mr. So and So, but also continue to help manage the 15 people in the common room at the same time. AND Mrs. Smith needs help in the bathroom, AND Mr. Jones' bed has fresh feces on it, and the two residents at the end of the hall are fighting. Plus the cook sent dinner up for 20, so get everyone to the dining room, fed, and then over to the TV. Some caregivers were friendly and warm, others were more mechanical. I appreciated those most who were kind, welcoming toward family, and patient. But thank god there are people willing to do this work, or we'd all be up the creek. My dad had always been a very difficult person, though most of us loved him. But none of us could handle caring for him. I started calling it a bargain with the devil- pay someone else to deal with the hell of a family member with dementia, basically having to trust and hope that things go ok. When I told a senior staffer how painful and difficult it was for us to visit dad in memory care, dreading every visit (1-2x weekly for each of us), she seemed genuinely surprised. There's some kind of disconnect there. Again, I wish I could work to educate families.
Anyway, thanks again for listening. It took 8 months for me to have clear mental space to get back here and write, after an incredibly stressful 2 years. And I haven't even told you the half of it. It has been the hardest thing I've ever done personally, and we've done as a family. Thanks for your kind answers, and SnoopyLove, yes indeed, what a journey. I'm happy to report that we siblings are back to normal, no permanent rifts, and living our lives again like it was BDD (before Dad's dementia).
My deepest condolences to you on the loss of your dad.