Thank you Mindysan33. If there is any good to come of this it has made me much more patient and forgiving of other people.
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Dabidoh - I’m truly sorry for the pain you’re going through. My experience, while nowhere near as traumatic as yours, is depressing in that “friends” and relatives more or less abandoned us. Hang in there. You’re a good person!
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There’s already a franchise for that
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It could thrive in places without universal healthcare systems.
A good long-term institution or nursing home in my country could costs more than US $ 2,000.00 a month.
An elderly day care could be a cheaper alternative.
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My sister and I have been caring for my father with Alzheimer’s as a team for about five years now and every day is a waking nightmare. Even if he’s having a good day and not creating continual messes and stress, we’re held prisoner- we can’t leave him alone for even a second. We can’t have social lives or stay fit or take vacations. We’re barely able to hold on to part time jobs by switching off with each other. Many nights he gets out of his bed again and again and again and wanders around, so we can’t even sleep- then when he finally settles, he’ll sleep 3 hours and be up again, his human need for rest completely eradicated by the disease.
We decided a few months ago that we couldn’t take it any more and decided to put him in an elder care facility. We spent two months getting his long term care insurance straightened out and touring places, trying to find a facility we felt confident in. We finally found a great one and moved him in… only to have to pull him out less than three weeks later because of profound incompetence, negligence and staffing issues. The facility was clean and pleasant-seeming, but failed to take even the most basic care of our father. We had an interview with the executive director herself before moving him in where we put together a care plan, mentioning every relevant thing we could think of- his deafness without his cochlear devices, his behaviors, the fact that his food needed to be cut into tiny pieces because of his bad teeth, his incontinence, everything. All of it was completely ignored once he was moved in. He spent entire days deaf because his caretakers weren’t even told about his cochlears, or were too incompetent to charge his batteries, or to put the devices clearly marked L and R on the correct sides of his head. His food wasn’t cut up, he wasn’t given walks as we’d been promised, the position of Memory Care Director was vacated the same time he moved in and never filled, even with an interim director, and some nights we’d visit to find 16 dementia patients under the care of a single nurse, who had been hired off Clipboard (essentially Uber for nurses). There was no continuity of care, no accountability, and no response to our complaints and attempts to help resolve issues.
Finally we took him to our second choice of facility, trying to get him transferred there, and that’s when we found big scrapes on his knee and elbow, as though he’d fallen or been roughed up by staff. These injuries were never reported to us or to his doctor. They didn’t even put a band-aid on them. That was when we decided to move him out that very night, unable to stand the thought of him being at risk for even a moment longer. We signed the deposit check for the new place, only to be told a moment later that he wasn’t welcome there because of unspecified behavioral problems… as reported by the first facility, who often didn’t even know he was deaf and probably assumed he was just being stubborn, or who may have even confused him with an entirely different old man, which we saw happen at least once during his time there. So in addition to being abused and neglected, he was blacklisted.
Now he’s at home with us again, and will be until the day he dies, because we have no other choice. Our two months of effort were for absolutely nothing, and we got to experience the joy of seemingly having our lives back for a couple weeks, only to be utterly crushed again. All of which leads me to what I really want to point out- even if your elderly loved one with dementia has decent insurance and the cost of care isn’t an insurmountable obstacle, the entire elder care industry is so corrupt, understaffed and broken that it may be impossible to find a facility that will treat your elder like a human being. The expectation seems to be that people will drop their elderly relatives off at one of these places and simply wait for them to die, without ever checking on their care or giving them another thought, and we were treated as crazy for actually visiting and trying to ensure he was getting the basic care we were paying for.
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Thanks Blah, back at you I’m sure. The ghosting of friends & family when in need seems to be normative behavior. Those people who do make an honest effort are heroes.
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I had neighbor with Alzheimer’s and then dementia. We knew each other my whole life, he was a great neighbor and friend.
When it first started he would tell me the same story at least once a day, I would listen like it was the first time I ever heard the story.
Later when he started to get dementia and get very agitated and angry he would accuse me of stealing his tools. I handled it the only way I knew, I told him he could come over and take back everything that was his. Most times he would forget he was angry and we just talk.
Once he wanted the skylight off my garage that he said I stole. Okay I’ll get up there after dinner and remove it, he would forget and all would be good for a bit and then he’d start again.
He passed away years ago, I miss him.
We had another neighbor, just recently, go through the same thing. She would walk up and down the street, she always stopped to talk to us. Toward the end she would talk gibberish, we just smiled and listened. Some days I could see the frustration because I believe she knew we couldn’t understand but she didn’t know why we didn’t understand.
Very sad when she passed.
Here’s the problem I saw with both of them. My neighbor who would get angry with me was the best neighbor to me and everyone on the street including the kids. His garage was always open for anyone that needed a tool and he helped anyone with his decades of knowledge.
When he got sick none of the parents explained to their kids what was going on so they avoided him. Even adults took it personally when he yelled at them and a few would argue back with him.
I tried explaining but they just couldn’t handle it.
I wish parents would explain to their kids what’s going on and not try to hide it from them.
We’re fortunate that we have the resources so our daughter can care for us or get help caring for us. We also have all the documents in place just in case we can no longer handle our finances. She’s our only child and we expect her to take care of us (not be our nurse, just make sure we get proper care) but we don’t expect her to be financially responsible.
This country needs more resources to help care for our elders and more education for our kids and how to treat the old people because those kids, sooner or later, are going to need help themselves.
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I’m glad you can find a bright spot. That can be hard…
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It seems that the coverage, including internally in the cities, is very patchy.
The city i’m currently living (são paulo state’s countryside) has an adult daycare called “Centro Dia do Idoso,” but i don’t know exactly how it works (i’ve seen them all walking around the neighborhood some times and they seemed well cared and with enough caregivers), and because they are subordinated to the social assistance and not the health system (SUS), i guess they have even more funding problems.
I also know that the city my grandparents are living also have something similar, and also some private options, that might been affordable for middle-class families, if i understood it correctly.
The secretary of social assistance from your city might have more information about it.
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I am so, so sorry you are going through this. So sorry. I hope you and your sister can find some peace.
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That exists where I live - a while back, I played a concert at a place like that. I think it’s a great idea for all involved - both the seniors and the caregivers.
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It’s hard when they get aggressive and paranoid. My father is kinda gradually starting to lose his marbles, and he’s going the aggressive/paranoid route, and I’m terrified of what’s coming. Right now, he’s still functional enough to live independently (with my mother for help), but last week, he couldn’t find some lawn chairs that were supposed to be left in his garage. He instantly jumped to the conclusion that they were stolen, ranted about the terrible crime rate in his (very safe) neighborhood, and talked seriously about the thieves who sneaked into his locked garage, took just the lawn chairs, and left the garage closed afterwards.
Turned out he put the lawn chairs somewhere else and forgot about it.
He has always been a kind and gentle man, and he has been a wonderful father to me, and it’s very hard to see him like this. I’m dreading the years to come.
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This is a hard subject to bring up but…
If there are any weapons in the house they should be removed for everyone’s safety. And be sure your mom has someone nearby that she can call in case she needs to get out of a dangerous situation.
No one likes talking about that but if someone with dementia harms someone it makes a very bad situation very much worse.
Something else we’ve done is put our daughter on the list of people all of our doctors can talk to. In other words if I start behaving in way that worries her she can call any one of my doctors and ask questions.
She also has a stack of legal documents that puts her in control if I ever get to that point.
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Yup, I am very aware of that. Thankfully, there are no weapons in the house (I know this for sure), and I live 5 minutes away and see my parents daily, so I can check in on them regularly.
By the way, right-wing media has made the problem 100% worse, especially for my father. It’s a radicalizing influence even for someone who is completely healthy, and the demented or incipiently demented are even more vulnerable. It’s tailor-made to feed into their paranoia and rage and to intensify it. And even though I managed, at considerable emotional cost, to get my parents to stop watching Fox News and OANN, they still get a regular feed of that garbage from their equally elderly and demented friends, so it hasn’t made a difference.
The best thing you can do for your daughter is to stay away from any potentially-radicalizing media sources as you age, with the awareness that identifying potentially-radicalizing media sources and critically evaluating them will become much harder as you age. My parents are intelligent and highly educated people. It didn’t make a difference - they still fell for all that garbage.
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I can only imagine. Caring for my elderly father is tiresome and overwhelming, and he doesn’t even have dementia
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My mother does not suffer from dementia, She is independent and is now taking care of her own health.
What I know about Alzheimer’s patients is from following the daily lives of some families from a distance.
In addition to the fatigue that families face, there is the emotional side of this struggle. That energetic mother who took care of the children is now fragile and dependent. That hardworking and proud father has become a caricature, a pale stereotype of an elderly.
It’s not easy to see these transformations taking place in the people we love.
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