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My husband and I are all my father- in -law has to look after him . Father- in-law has mild dementia according to assisted living facility . I think he’s heading into middle stage. He can barely walk with a walker . He’s totally incontinent . His hygiene is awful . He’s already had small bedsores that were discovered at the hospital when he had a short stay for a GI bleed . We have tried everything , including telling him of risk of infection , sores, and falling if he attempts to shower by himself . Told him the assisted living can kick him out . ( He chose this facility ,after we took him to about 7 places, because it had a big room and he liked the food samples ). He will not let staff help him . Occasionally he would shower in the beginning by himself when he first got there. But now his walking is worse and he has so much difficulty getting out of a chair, ( even one with arms ) , that there is no way he could use a shower chair on his own .There is a shower chair in his large shower . He says he stands in the shower. I think he occasionally goes in now, holds onto the bar and just lets the water run over him . He’s not using soap or shampoo . He thinks if he shaves and dresses himself that he doesn’t need help .He also wears the same pull-up all day which ends up leaking and he has stained all the upholstery in his room as well as in my home . We no longer take him back to our house . He kicks all the staff out of his room including PT, OT, and the psychologist . We can’t stand the odor . We stopped taking him in our car to a weekly dinner out which he was demanding . My adult children won’t visit anymore due to the odor . It took weeks to get the smell out of the car. We told him we are not taking him out unless he lets the staff shower him . If we end up never taking him out again are we being mean ?

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I think that FIL is no longer at a level of ALF. Certainly he is not in one that has him at a level of care where he is showered, by/with the help of male attendants at this point. He is acting out against staff and I honestly cannot imagine ANY ALF that would allow him in ALF care, rather than memory care. This truly is not fair to patients, who like my own brother who was in ALF, are basically safe, neat, self caring, mobile, competent in social situations, and getting whatever level of care they require, as well as not acting out.
If your father in law is being allowed to reside in a residential facility smelling, incontinent, unshowered and developing sores I am dreadfully worried about all residents in facility there.
I don't even want to go to the question of going out for lunch. This sounds like a much larger issue of inadequate placement and care, especially with mention of bedsores which can go septic and kill.
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lealonnie1 Feb 2023
This! What kind of an ALF allows an elder in THIS condition to reside there?? FIL belongs in Memory Care Assisted Living where he'll have way fewer choices about most things, including his shower days presided over by aides who do everything for him using soap and water.

This ALF is WAY out of their league allowing this man to live there with bedsores, not being cleaned up after or having his brief changed every two hrs like clockwork. FIL is being grossly neglected here OP, I'm sorry to say. It's a silly question to ask if you're being mean here.......move FIL to Memory Care Assisted Living stat and you should have no more of these issues to deal with. After a while, however, the smell of urine can permeate everything which means you no longer take him anywhere. You do your visiting and meals at the MC now especially that he's this-close to being in a wheelchair anyway. Once my mother became wheelchair bound, all trips off the grounds of her MC came to a halt. It was just too cumbersome and dangerous for us to try to maneuver her girth in and out of cars, etc. Plus dementia reaches the point where taking them out of the bldg is a very bad idea bc sometimes it's very hard to get them back INTO the bldg.
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When you say "primary care provider" are you speaking of a relative, or an employee of the AL?

This is not stubbornness. This is more than mild dementia. He needs a higher level of care--the bedsores are an indication of that.

You are not being mean.
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Way2tired Feb 2023
Primary care provider is a PA (physicians assistant ) who works under a doctor in a geriatric practice . She comes to the facility . We decided to use her as it’s easier than using someone outside the facility .
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No. And his dementia is probably worse than mild.
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Way2tired Feb 2023
Thank you .
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If FIL can stand in the shower and hold onto a bar with one hand, he can use soap in the other hand on his torso (crutch and armpits, where the smell comes from). If the smell is so bad, he can’t be cleaning up after the incontinence. He probably just turns the taps on and doesn’t even get wet.

He is at the stage where it’s pointless expecting him to make good decisions. You can try ‘forcing’ him to let the staff help, by refusing to do any of the things he likes, including taking him out to dinner. You can consider where he should go, now that AL is not enough – and tell him that’s the next step if he resists the care that he is paying for. You can talk to management and see if they have any suggestions. Many aged care staff are clever enough to get residents to do things they don’t really like, so it might help.

But to be honest, if the smell makes you puke, I wouldn’t go near him myself! I've met too many old men who think they are the boss. And I wouldn’t inflict him on other people in a restaurant, so no dinners out and no smelly car.
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Yes this can happen & I certainly have empathy for your situation.

*Refusal of care* it is sometimes called. Refusal of personal hygiene or self-neglect.

Your FIL has lost ability to maintain his personal hygiene. He also lacks insight to know this & lacks flexibility to allow help.

So it becomes a dilemma between his right to refuse (Right to Rot) vs everyone's right to NOT have to smell him!

My views are;
1. It is not reasonable FIL be left soiled & therefore much higher risk of bedsores & infection. 😱
2. It is not reasonable for the staff or other residents to put up with such odours 🤢
3. If IS totally reasonable you don't bring him to your home.
4. It is ALSO totally reasonable not to take him out in your car or in public.
5. It is reasonable family stop visiting if the environment is offensive.

Has he seen his Doctor recently? Sometimes something for anxiety can help soften the mood to allow care tasks to be done.

Basically he will need a team of 2-3 aides to arrive & shower him in a chair. He may give in once outnumbered (many do). If not, or he is violent, back to the Doctor for another reivew - ? psych eval.
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Way2tired Feb 2023
Thank you , very helpful . Am waiting for call back from primary care provider for next steps . If you like you can read my reply to AlvaDeer for more info on the struggle we had with primary care provider who thought my FIL was with it , which is why it has taken this long to get a dementia diagnosis .
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To cont.. I'm actually quite glad personally you raised this question. In our modern world I am all for the concept of checking for consent for everything, of protecting individual rights. For people to decide for themself where possible. We have to move to a dementia-friendly world too, based on the dire predictions of future dementia stats.

But common sense!
I always try to go back to that.

Once incontinence became a regular issue, I set a requirement: No incontinence pants = no ride.
Unable to manage facilities at my home = no visits.
Unable to manage out for a meal = bring an aide or not invited. I was left at visiting LO in their environment only, but like your adult children Way2tired, I am about to draw a new line there too. Just too smelly. I know LO can't self-care (not blaming) but I do not need to see, smell, deal with. I have no enduring POA so can do nothing more than *Advocate* (which I have done by writing to the Doctor to highlight the issue).

Way2, I feel you & your DH can advocate for FIL too. By speaking up to the AL Manager & forcing a Doctor review. Maybe this will obtain a new approach, meds or even a transfer to Memory Care?

Let us know how you get on.

I also feel sad to withdraw my company but have to weigh up sad vs the yuk factor.
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I love my NP but there comes a time the Doctor she practises under needs to step in. She does not make the decisions, you do. You have a diagnosis of Dementia. Doesn't matter what the NP thinks, she is not a Psychologist or a Neurologist. She is a highly trained Nurse.
Your FIL is passed what an AL can do. Memory Care is the next step up. Thats where he needs to be or in a nice Long-term care facility. You make that decision. He can't the NP can't. Unless Dad has a Medicare Advantage plan, under traditional Medicare you do not need referrals to other doctors. I took my Mom to a Neurologist without a referral.

I am so sorry for your sister. I think you need to realize that her decline will be fast. That you as one person cannot care for her. She needs to be in skilled nursing as the disease progresses. A man in our Church suffered from ALS. Its debilitating. His wife was a nurse and cared for him but she had a lot if support.

The Uncle, why do you and husband feel he is your responsibility. You have done a lot of caregiving are u not burned out. I guess u know your limits since FIL is in an AL.

FILs smell, I have a nephew with hygiene problems. But he also has a "smell" problem that is a physical problem that his Dr says nothing can be done. But that does not mean I have to put up with it and I don't. I tell him he stinks. He goes no where with me without a shower from head to foot. My daughter will not allow him in her house unless showered. So if FIL asks to go out, tell him he stinks so ur not taking him. I am really surprised the AL has put up with it. Its not fair to the staff or residents. And me, I would not be visiting. No by law they can't make him shower but there are ways to get around that.
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Way2tired Feb 2023
Thank you. Will not be taking him out unless he consistently lets staff help him and odor improves.
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He's way beyond assisted living. Time for memory care, because they don't take no for an answer when it comes to hygiene and continence.

You can bring dinner to him and share it in his room with him.
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Way2tired Feb 2023
Today FIL told hubby that he’s showering himself again and doing PT and OT so he can pass evaluation to move to the independent living building . Of course that will never happen.
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Short answer - no, you are not being mean. You have rights too. His lack of hygiene creates problems. Consider bringing in meals from places he likes - to enjoy in his home.
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No, HE is being “mean.” You know good and well you are being perfectly reasonable not to let a stinking, gross old man call the shots. Let him stay right where he is, 24/7/365.
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BurntCaregiver Feb 2023
@Emma

He might not be aware of how bad he stinks if he's gotten used to it.
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