"You're not the only one dealing with issues!"

Medicare covers Home Health for acute care/recent discharge from a hospital or Rehab, but not custodial care. The person also has to be “home bound”- it takes a considerable and taxing effort to leave the home and leaving the home occurs primarily for physician visits. Home health and personal care agencies can provide caregivers for custodial care, at private pay. There is a “Waiver” program administered by each county Area Agency on Aging that is income-based and pays for caregivers. For military veterans, there is a Dept of Veterans Affairs caregiving program, also income-based. Some people use Adult Day Care a few days to a full work week, many provide transportation and accept Medicaid clients.
Private pay with an agency or business usually requires a minimum of a 3 hour block, but they can provide up to 24 hr care. You’ll see alot of different staff people, but usually the shifts will be covered by somebody, in case of call-offs. Employing a person you find on your own can work, but there will be no coverage back-up.
It sounds like you are carefully thinking about what to do. As long as you feel safe in your country, having affordable access to caregivers is a big blessing.

rxw1853- Do you mean Medicare won't cover certain things in your host country or the US?

Everyone has problems and some want to tell you theirs. I really don’t want to hear theirs and I don’t want to tell you mine. Makes it hard to help someone like that isn’t it?

That is great information, @centre, thank you!
Merry, I meant to say Medicare coverage in the US. We have Medicare but can't use it outside the US. Currently I'm self-insured in my host country - there is a public hospital network, which is pretty good, but the key advantage is affordable access to caregivers. There's no subsidy but their salaries are very reasonable.

Hi Merry- You asked if I’m still struggling, I guess you could say we’ve “graduated” to the next level. My husband, after the ring went on, revealed himself to be a very easily irritated person, who coped with any level of frustration by screaming and “acting out”. As the years went by, and I now know dementia was creeping in, I coped by working alot of hours and keeping out of his way. COVID was actually a blessing as eating out was no longer an option, it had always been a possible opportunity for a melt-down and I’d be on edge.
The last year at home, he became even more angry and uncooperative with me- wouldn’t eat what was prepared, wouldn’t let me set up a pillbox or participate in the meds, wouldn’t shower or change clothes, turned night into day and day into night. All this culminated in out-of-control diabetes, delirium, and encephalopathy- off to the ER with a friend’s help. He was admitted, stayed 2 weeks, had two major meltdowns in 8 days for which Security had to be called. His PCP and the hospital neurologist said he could not be handled at home. For my work, I had visited every assistive living in our county, the one I liked the best had an opening, he went by w/c van, although fully ambulatory- I was afraid he wouldn’t get out of the car if I took him.
Fast forward a year and 3 months, he is at his healthiest ever with the structure of the assistive living, the diabetes is under good control, he’s made a circle of guy friends who hang out together, he loves to tease and chat with the staff. I visit twice weekly for an hour each time and make sure he has the things he wants and needs, take him out for drives and stops at the Dairy Queen drive-through in good weather.
I’m still struggling a bit with being in the house alone and being in charge of all the things that keep a house going, but my brother and SIL live nearby and we’re all close.
I’m also struggling with my husband’s mood and something that just happened two days ago. I’ve had very mixed feelings over the past year with his new mood- very pleasant, very appreciative, never a hint of irritability. Has he mellowed with the proper medication and the dementia? Does he remember how mean he was and feel regret? Does he have insight that he should be nice as I’m the one who gets him what he wants? Maybe I should take him home? But two day ago, in the DQ drive-through, he suddenly erupted and I was right back in the old days. Sometimes God sends a warning, I’m thinking this was one and I better pay attention.

Centre, thank you for sharing. Sending lots of hugs and prayers!! I am curious if your husband started showering and changing his clothes again. If so, did the doctors say what might be causing this? Is it just part of the dementia? We struggle with the same thing with our loved one...and it is becoming increasingly worse as he has also lost control of his stools and refuses to let anyone clean him up. His clothes are now very dirty and stained. 😓 Yet, he has the "right" not to shower...so no one can force him to clean up and he becomes very angry and loud if anyone tries.

honestly i am so sorry you are dealing with this. I had my best friend come over to myhouse and she said something so helpful to me and this is why we are best friends. She asked me : How can I help you? Can i text more and check in, text less and give you space, clean house, grocery shop, etc. you tell me. It was so refreshing to have someone not just say it but have actions behind it. I feel like these are the ones that I want to keep the friendship. she was going through alot at the same time and was never upset with me for not "checking in with her or asking her daily about her day, etc" she knew my overburdening load of caregiving and the stress of working full time while doing this was overwhelming

Yes, the doctor said it’s very common with dementia BUT it’s much worse with men when family members and/or female caregivers are the helpers. That pulls in big emotions from decades of being “in charge” and “the man of the house” and accelerates quickly to the “you’re not the boss of me” attitude and angry refusal to cooperate.
By the time my husband was discharged from the hospital to assistive living, he had not showered, changed clothing, or brushed his teeth in over two months, becoming furious with my attempts to encourage or help with any personal hygiene. BUT at the assistive living, he takes two showers weekly (with a full clothing change), allows his shirt to be changed daily (but not socks :/), and brushes his teeth with encouragement from the male aides. He sleeps in his clothes, socks, and shoes (won’t allow shoes to be removed). He wears adult incontinence briefs, doesn’t like them wet or soiled, will take them off while sitting on the commode. I have a bin of briefs next to the toilet, he changes independently. The key for him is a helper who is not related and a guy.
When I was working in Home Care as an OT, it was a rule of thumb that if caregiving was needed by a family member, an adult grandson got the best results if you have one available. I think again, with a son, the big emotions are too close. Perhaps call a home health nursing agency or caregiving business and see if they have any male aides. Or try a female and everybody else leave the room. Some men with dementia would let wives help, but a lot wouldn’t.
Another method I saw used on a dementia unit I worked on, is to do (what in our rural county is called a “farmer’s bath” or a “spit bath” ). Men tend to laugh if you say, “ Come on, we’re gonna wash the stink off ya!”). Prepare ahead of time- clean clothes, a smaller towel, at least five of the large washcloth-size disposable wipes you buy at CVS/Walgreens, warmed in the microwave, a nice cup of coffee ready, quiet music. Pointing out the coffee and gesturing to his kitchen chair (turned sideways with a hand towel placed on it) is cueing in on a familiar behavior and may elicit cooperation. Keep up chit chat. Once seated, pull the arm not holding the coffee out of his shirt and wash quick with one of the washcloths, apply deodorant, then the next arm, flip the shirt quick over his head and quick put the clean one on just one arm and pull down, reach under to wash his front and back, changing wash cloths as needed, then the second arm goes in. The idea is to limit the time he is uncovered and will feel vulnerable/“not right”.
Next have him stand, quick pull down his pants and underwear, have him sit and quick place the smaller towel over his lap. Take off shoes, socks, pants, underwear. Use a new washcloth on each leg. Put on fresh underwear, pants (hope you’ve gone to sweatpants), and socks, put shoes back on. Have him stand- new washcloth for privates front, new for privates back, pull everything up and he’s good to go. If he allows time for lotion, that’s all to the better- offering a back rub and foot rub gives a chance to get some on. The great thing about the washcloth wipes is that they do not have a soap product so there is no problem with drying residue. If he will allow a shower or wash-up at the sink, the product “Cetaphil” also isn’t soap-based, no need to worry about thorough rinsing. For the face and neck- a lot of people like to and can do this on their own. You can offer that cloth while getting busy with other body areas. When seated again, dry shampoo for hair once weekly, electric shaver if he’s willing. At home, my husband stopped shaving and wouldn’t allow help, so he soon looked like Grizzly Adams 🙂 For haircuts, I still take him to Walmart- he is willing to get the haircut because afterwards we always walk around and he loves Walmart- the tool section, the electrical aisle, plumbing supplies- you get the picture 🤣🤣
Hope this is helpful 😊

Whoops, instead of replying directly to you, I wrote my response in the Comment box, please look for it, should follow this reply note 😊

Hi @denisefrey, my husband has moderate Alzheimer's Disease, diagnosed in 2019. For a while, he was resistant to showering and washing his hair. He broke his hip in Jan. 2022 and while he was in rehab, I had the tub removed, a shower bed installed with grab bars and added a shower seat that hangs over one grab bar. When he came home, I realized it was easier to get in the shower with him, then give him instructions from outside. Now he loves to shower and washes his hair whenever we're in there - usually every other day. Then he thanks me for the wonderful shower. When I asked him why he didn't like to shower before, he said it was because he didn't know what to do.
Prior to all this, I noticed that he wasn't cleaning himself very well when, doing laundry, I saw his underwear. I installed a bidet toilet seat cover, and while he was resistant to it in the beginning, he's taken to it very well.
I remember my mother-in-law, always a fastidious woman, told me she hated showers in her later (declining) years. She said they felt like sandpaper scraping her skin.
Of course, everyone is different, and this may not be helpful at all for your situation. I wish you the best.