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We have night home helpers (very expensive!) because the worst he does happens at night -- sundowning. He has had two people with whom he got close. One of them had a tragedy at home and had to stop working. So yesterday I was told that a new one, very nice and experienced, would be taking the 3 days the other one took. I told them he objects to strong scents and conversation unless he starts it and she was informed of this. So at about 7:30 she called me (my husband and I live a few small houses apart, thank goodness) and said he got very angry at her, told her she was wearing perfume (she wasn't) and ordered her to leave, go home immediately. I talked to him a bit and said this meant I (who right now am quite sick with some kind of stomach flu) would have to go to his house and take care of him. I calmed him down by saying that she seemed very nice and intelligent (he agreed) and if it was so bad, couldn't she go upstairs and take a shower? He began to mellow. I talked to her about the shower idea and she said she was familiar with the "invented anger object" in people with dementia. We talked over his pill schedule (he yelled in the background "NO TALKING!" About 10 minutes later I called him (partly because I was so angry myself, although I know an angry response from the spouse does NOT work) and he said cheerfully that everything was all right. I told him that lately his demands have been embarrassing to me and cruel to both me and anyone else in the picture. I asked if he still wanted her to go and he cheerfully said "No, we worked things out." (I think he had demanded that she get no closer to him than across the the room--difficult to give meds, water, and so on) and probably she said that she would take a shower with his OWN soap if he demanded it and certainly would before she comes the next day. I, still angry, said that his display when she arrived was not acceptable. He responded with what has become his standard excuse for these things: "Oh, I was just joking around with her."
We haven't been able to get a diagnosis on TYPE of dementia except for "dementia and cognitive decline" from our PCP. (He does take Seroquil at night to calm him down). Does this kind of "anger demonstration" happen with a specific type of dementia? During the day his main problem is that his short-term memory is just GONE. And does anyone have suggestions about how to deal with these little "shows"? Frequently they involve a demand to change something that either CAN'T be changed or would be hugely expensive and involve a lot of work to get in place. I'm 73 and have some chronic illnesses. Dealing with a hospital stay of 3 weeks (serious infection) that brought sundowning to the fore (I got about 5 hours at home to sleep for 3 weeks) and then trying to take care of him myself (he absolutely refuses to leave his home) drove me into a near collapse. What kind of future can I expect, does anyone know?

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No way in Heck would I suggest that a caretaker get undressed and take take a shower to make the patient happy. Not normal. What are you thinking? How about his living arrangement changes so no one is there without others around in case this weird little anger issue get worse.
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betskand Apr 2023
After thinking about it last night I started to agree with you. Not an appropriate response. I apologized to the helper. I'm not sure how we can change his living arrangements -- he hates people in his house and refuses to leave his house (and is still lucid enough not to make this happen easily). I think as he gets worse the living arrangements will HAVE to change.
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Not to sound nosey but why do you have separate houses?
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betskand Apr 2023
Actually for a mundane reason. We got married 30 years ago and both had small condo units -- I can walk the separation in two minutes. We live in Santa Fe where the house prices are enormous, and our condos each had a bedroom, a study, and a kitchen. To get that much space in a single house would have been impossible for us so we just kept the two houses. Before he got sick and started with the dementia we probably spent more time together than most couples...reading aloud to each other, playing games and so on. So the two houses were not for reasons of not getting along. And they eliminated disagreements like "You left the toothpaste open!" He was much neater than I and our body cycles were different -- I get involved in things at night, he has a fixed bedtime and would hate having me doing things. Actually, I very much recommend separate but close houses as a marital aid. When this comes up in stores (different addresses on debit cards, etc.) the person (almost ALWAYS a woman) says "That sounds wonderful."
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Working on getting a proper diagnosis might help. Rather than a PCP a Neurologist or maybe a Neuropsychologist might give you more answers.
I think you should contact his doctor now and see if another medication could be tried or an adjustment in the dose.
You just never know when anger issues could become violent.
I understand that he does not want to leave his home BUT this might be a situation where for his safety and the safety of the caregivers he is in a Memory Care facility.
Your future?? His dementia will not get better, his anger will probably get worse, he may become more violent. These are just guesses but I am probably not far off.
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PCPs/GPs know a little of everything and alot about nothing. Meaning your husband needs a Neurologist who is more familiar with Dementia than a PCP. The Neuro will test him and run the tests that will determine what type of Dementia he has. This needs to be known so the correct meds are given.

I will assume here your husband has never been easy to live with hence the 2 houses. You do realize he will continue to decline and need more and more care. One day you will not be able to reason with him at all.

She may not have had perfume on but smells from soap, hand cream, hair spray and washing detergent may be very strong. You may want to tell the agency that husband is sensitive to smells period. Ask that aids coming into his home be scent free. There are laundry detergents that have no smell.
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In general, and usually, things just get worse. You may try speaking with the doctor about the anger issues, if there is anything to try other than what you ARE trying. Sadly you may also need to consider how long you can continue realistically in home care, and when it is time for a facility. Some dementias, such as frontal lobe, and etc. have more episodes of anger than others. You may want to consider a complete neuro-psychiatric eval, but a dire outcome of diagnosis and prognosis would lead them only to suggest institutional care.

You should try to speak with your husband when he is calm to let him know that if these episodes continue in which he is abusive to caregivers, that he will be unable to stay home, that he will have to move to memory care for his own safety and for the safety and health of others. If there are ANY control mechanisms remaining this may help a little, but it is overall unlikely.

I am so very sorry. You will have to wait and see, and come to some decisions. If this care causes your own health crisis you will be no good at all to your hubby; I know you know that.
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You have a few extenuating factors here. 

How long ago was the hospitalization? At 93, following a 3 week hospital stay, did he spend any time in a rehab? Three weeks is a long time to be in a hospital. It might be too soon for an accurate diagnosis on his dementia but I’m wondering if he has been tested for a UTI? UTI’s can mimic all sorts of mental issues.  You can have him diagnosed with a simple pee test at an urgent care, right now, today. Ask them to run a culture if it shows he is positive for one to make sure he gets the right antibiotic. Often he will be given an antibiotic immediately, that’s fine, but also ask for the culture just in case the one he is given doesn’t knock it out. 

if it is a UTI and he gets proper treatment, he can noticeably improve.
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betskand Apr 2023
He was in the hospital for a massive infection through his abdomen starting from his gallbladder. They couldn't remove gallbladder because it was so swollen that it had adhered to his stomach and colon. He wasn't given a real diagnosis for dementia there but started sundowning so dramatically that the hospitalist put him on Seroquil, which he still takes.
I actually mentioned a UTI in the hospital and since; no one seems interested. I need to get our PCP (whose clinic has a lab) to run a test and a culture. This is a good idea, thanks!
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This whole situation is worrisome and sad.

I’m concerned about having the aide showering at his house. Not only is it an unusual request, it’s a vulnerable situation for her and opens a Pandora’s box of possibilities of misunderstanding. It doesn’t seem like a good idea for either party.
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betskand Apr 2023
The aide didn't take a shower but sort of ignored my suggestion. Later, thanks to vegaslady, I realized it was a terrible idea and inappropriate suggestion. Yesterday I called her to apologize and also told her that since I am new to home health care and also dementia, I will gladly accept any correction or thoughts about my way of handling my husband or anything I say or do that is not appropriate for home health care. She is very nice, laughed and said she understood that it was a bizarre moment for me (his just ordering her out of the house) and that I was trying to think of anything that might resolve the situation. In that, I also wasn't understanding that his anger was not actually about real factors but was a way of venting anger about his new helplessness.
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It is ok for you to say you cannot do this.
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