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Alzheimer's, behavioral variant, dementia, dementia unit, dementia ward, FLD, frontal lobe dementia, frontotemporal dementia, FTD, memory care, memory care facility
The decision to put your loved one with dementia into a dementia care facility is agonizing. I’ll talk in another post about how we came to that decision. But for now, I just want to remind people that, even though you’re most likely paying more than you can afford for people to give your loved one top notch care, you need to be double checking that it’s actually happening. Even with my mom visiting my dad several times a week, things get overlooked. She assumes that the people who are paid to care for him are caring for him. Go figure. When I was home for Christmas, I noticed that his fingernails were long and really jagged where he’d bitten pieces off, so I filed them down. His skin is really dry with all this cold weather, and my mom has provided multiple bottles of lotion for the staff to slather up his stomach and back because he gets really itchy. I think they’ve mostly been good about that, but no one has been trimming his nails on any kind of regular basis, and it definitely hasn’t been done since I was there for Christmas. As a result, he has scratched himself raw and drawn blood. I teared up when he lifted his shirt to itch and I caught a glimpse of the bright red cross hatching marking up his stomach. I took a photo, but I will spare you from having to look at it. Mom asked someone a week ago to make sure that his nails got trimmed, and as of yesterday, it hadn’t been done, so we did it ourselves again. We are paying obscene amounts of money, and are really disappointed that this basic care has not been provided. I ended up going in today to talk to the higher-ups and the nurse in charge about this and a couple other things, like making sure there’s soap in the wall mounted dispenser in his bathroom, and making sure there’s always a staff member around in the main living area to keep an eye on the residents who aren’t participating in activities. They seem chronically understaffed.
For the most part, his care is good, but on several instances, we’ve basically had to shame them into basic things like changing him out of his pj’s in the morning and into regular clothes. We’ve had to write letters, hang signs in his room explaining the difference between pajamas and not-pajamas, and talk to staff members reminding them of our expectations, which I don’t think are unreasonable. We’re not asking them to weight on him hand and foot (although, honestly, for what we pay, they should be), but they are always reactive to the issues that pop up (and usually only because we’ve had to speak up about it) and are very rarely proactive in preventing the issues in the first place. You would think Dad was their first dementia patient and they’ve never seen these things before.
So, if you have opted not to keep your loved one at home, check on them. Regularly. Even if the staff seem to really care. If they don’t live nearby, find someone who can check on them. Regularly. If you can’t do that, consider moving them closer. Even the best facilities can slack off if family members aren’t there to advocate for the residents.
All of that being said, I am pleased to report that he was having a good day yesterday, and was very smiley and happy to sing along, and tolerated his manicure admirably. He was definitely out of it Sunday and today, but I’m awfully glad for the giggles we got out of him on Monday. And I’m a sucker for his hugs and kisses. Those moments when he genuinely laughs are like rainbows stitching up my heart.
I agree with this 100% We have to be our loved ones advocate.
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Yes, everyone in a care home for any reason needs someone on the outside advocating for them
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My dad took care of my grandmother who suffered from vascular dementia for a very long time, to avoid, having to put her into a facility. I relieved him on Sundays, & other times if necessary until it just became too much. Luckily, the facility was excellent, but as soon as she went in, she was done, & didn’t stay long.
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My husband and I moved in with my mom to help care for my dad, but he was so young and so mobile that we just weren’t able to keep him safe on 23 acres of land that included a pond, railroad tracks, and tractors, mowers, cars, etc. He’s been in the dementia care facility for almost 4 years now. It’s supposed to be a really great facility, but we are frustrated at times.
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I hope they get on the ball.
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And this is why my mother will never leave to visit me across the country. She’s experiencing the same thing with my father.
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It’s so hard to get the appropriate care, isn’t it? We still take short trips, but we have a rule that at least one of us needs to be within driving distance from my dad in case of emergencies. And we get friends to check in on him, too.
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