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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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This is an old question . I appreciate the advice, it may still come in handy . FIL is in the hospital currently , very ill, we are not sure yet , but are considering palliative care in SNF .
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Beatty Jun 2023
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No showering = no car rides. Simples.

Unless maybe in a convertible though a carwash 😜

Way, my sister thought I was a little mean I think when I set my rule: no adult continence briefs = no rides in my car. Actually even my DH may have agreed. I pointed out they were quite welcome to use (& clean up) their own cars.
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CaringinVA Jun 2023
Very sensible boundary, for sure. I can only imagine the lingering odor that this situation would produce in one's vehicle. Yikes.
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I agree with the others. It is time to move him to Memory Care.

At Memory Care, they probably have options for bathing. In AL, I was told that patients can refuse care because the premise is that they are of sound mind, however deficient in something else, like mobility. It is also assumed that they will remember to take their meds, can do their own laundry, etc. However, when one is in MC, residents are assumed to have a "faulty brain".

If the current facility doesn't have MC, you may have to research a few facilities to see if they will take him. You might want to start now since many have waiting lists.

Regarding your last question, since he can barely walk with a walker, you have a reason why visits would be limited to the grounds of the facility. Have you talked to his PCP about his behavior?
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I, like other commenters in this thread, also do not see how his assisted living facility can allow his hygiene to be this neglected. It definitely seems as if he needs to be placed in a memory care setting, due to his full incontinence, inability to bathe himself, and his immobility. The assisted living facility should have already recommended that he be placed in memory care by now. You may wish to look into having him placed in another facility that will provide for his care and needs better. It should not be hard to transfer him to a new facility, since he is immobile, and can not really resist/fight you back/argue once he is actually physically moved to his new facility. He may be scared and confused when he is in an entirely new facility, and it may seem harsh to move him against his will (if he does not wish to move), but he will overall be much better off once his hygiene and all other needs are properly taken care of; he will probably calm down as time goes by and he gets used to his new surroundings.
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I am surprised the AL let this go on. They usually have a standard for cleanliness. He is at risk for breakdown of skin, infections etc. Trying to reason usually doesn't work.
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Way2tired Mar 2023
I agree. We are beyond frustrated. FIL very stubborn . Therapeutic lies don’t work . Telling him it’s doctors orders etc doesn’t work . Nothing works . Next time he lands in the hospital may get him discharged to MC
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Deciding not to take him out anymore seems to be the least of the issues here. No, you are not mean - who would put up with that?! But the bigger issue is his mental and physical condition and apparent inability to make rational decisions about his care and hygiene. Frankly I am surprised that the AL isn’t making more of an issue out of this. Bed sores can become serious and the AL will not want liability. Perhaps his physician can suggest an antidepressant that would help make him more compliant. You could also discuss whether he needs a higher level of care at the present. If he continues on his present course he most certainly will end up with a UTI or something worse. Plus he will be socially isolated. Frustrating problem for sure.
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Way2tired Feb 2023
I agree the facility is too easy on him as far as showers and toileting . He’s been on an antidepressant for many years. The PA that sees him there is useless . She told us she thought he was fine and just stubborn . FIL agreed to a cognitive test done by therapy because he wanted his medication back that I took away . We were told it showed mild dementia , however . I think he’s moderate . Maybe he tested with the worst score for mild . Maybe his score was almost in moderate range . Yes we are very frustrated , Which is why I b***h on these threads . Possibly the next time he lands in the hospital for more than 2-3 days we can move him to MC or to rehab first while we set up MC .
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It sounds like your FIL is beyond the level of care that an assisted living facility can provide.
If he is incontinent, immobile, and has sores it is time for nursing home and memory care placement.
He has dementia but even still it is not his call to refuse the staff at the AL. He has to be showered or at least washed up especially if he already had sores.
You are not being mean for not wanting a car that stinks of urine and crap. It's right to not take him out to a restaurant because the other diners don't deserve that.
If he likes to go out so much, that can be used as a bargaining chip. A staff member can tell him that you're coming but he's not going out unless he lets them give him a proper shower.
Also, you put down protection in the car. I literally used to use puppy training pads on my car seats if I was transporting an incontinent client. There was always the rule that if they refused the shower that they would not be coming in my car. The pads can also be used on furniture in his apartment too.
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Way2tired Feb 2023
The two small sores healed when he was in the hospital for GI bleed. But I doubt he lets them check for new ones . He walks with a walker but barely . They put down washable pads but he removes them. Will try to push MC but don’t think hubby is ready for the blow up yet
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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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Way2tired: Your FIL requires a higher level of facility than assisted living. No, you are not "being mean" to decline taking him out to dinner. FWIW, who would be hungry with malodor present? Without bathing, his skin is going to start breaking down.
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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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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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When my father was in AL they evaluated him every 6 months. They told us what he needed if he wanted to stay. Ask to have him evaluated again.
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Way2tired Feb 2023
FIL is frequently asking to be reevaluated because he thinks he belongs in independent living , no matter how many times we tell him that his mobility is the problem , and he has medical conditions that warrant AL.
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Lol who wants a feces encrusted stubborn old fool in their car?

I wouldn’t get within 10 ft of him, much less let him in my car.
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BurntCaregiver Feb 2023
@Zippy

Agreed, but he probably doesn't even realize he smells so bad. It's dangerous for him to be feeding himself if he's got pee and crap all over him. He could get really sick.
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Not at all, if you ask me.
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With dementia he should not be in Assisted Living. He should be in Memory Care where there is more help for him and a better staff/resident ratio.
If he remains in AL you can hire a shower aide that will come in and give him a shower.
this should also be discussed with the facility director. I can not believe that they would allow him to go 9 months without a shower. I would think that would be considered neglect.
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Way2tired Feb 2023
I agree. They say they are trying not to push him too much and get him to agree to help slowly . He showers himself occasionally .
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Nursing Facility could be the solution until the incontinence is resolved: his condition tells me he should not be leaving the facility at all.

Gastroenterologist can help resolve the incontinence problem.

Geriatric Psychiatrist can evaluate and medicate his stubbornness and other mental problems.
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Way2tired Feb 2023
FIL refuses psych consult .
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No amount of cleaning is going to get that smell out of his room. I know. Everything has to be washed, everything. The curtains the rugs, his clothes. The smell penetrates everything. You have to open windows and hope there is a good breeze. My nephew just gave me a pair of pants to mend. Not sure if he had worn them or they had just been laying around but I had to soak them overnight. If FIL has a fabric chair he sits in, that will need to be shampooed and deoderized. If he has peed on it, its gotten into the padding. He may need a new chair. I have to Fabrez the seat of my car my nephew sits on. As soon as he sweats, the smell is there.
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pamzimmrrt Feb 2023
I use something called Angry Orange for pet smells, and my DD uses something I think is called My Pet Peed.. both on Amazon. May help short term until new items can be gotten, of they are not affordable, both are fabric safe and work miracles in the short run
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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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Speak to his doctor about the incontinence. Perhaps something can be done medically (would a catheter be better?) Speak to the staff at his facility about his hygiene, the bed sores and the odors in his room. Perhaps they can schedule cleaning for the room when he is at meals, and can also collect his laundry at that time. They can get disposable pads (for incontinence) to put under him in bed, and on his chairs. If he will accept it, ask them to do this. Ask them their advice on how to help him with toileting so that they can change his pullups. Sometimes men prefer male aides for dressing, toileting and showering. Is that an option at his facility, or could you hire a male aide for him a couple of times a week for showering if he would accept it? If he is no longer practicing hygiene, it is not mean to not take him out. This stage may pass and he may become more accepting of help in later stages of dementia. All the best to you and your dad.
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Way2tired Feb 2023
Thank you for the input. We have done all of those suggestions . FIL is VERY STUBBORN. The only thing he allows is the aid to stand outside the shower at times . Sometimes he refuses shower when they go at his scheduled day and time and they are able to get him to do it later if they ask him for a time to come back . He is very controlling . Have thought about hiring an outside aide but he would tell the aide to come back another time too often . They clean his room when he lets them . FIL removes the incontinence pads that they put down . He refuses toileting by staff . At one point they brought a male aide over from the memory care unit. Aide reported that FIL cursed him out and told him to get lost . If it goes on much longer he should be put in memory care. Have started looking at some. As some seem to have some who still talk and others don’t . Want the right fit for FIL . Thanks again.
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First off, nope. You’re not being mean by any means ! Secondly, I know that here in MO, in any AL facility there is a strict guideline for showering/bathing. At least TWO times a week. No choice there. So why does the AL get to ‘ask’ him if he wants/needs to shower?
Maybe I don’t fully understand your questions??
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Way2tired Feb 2023
AL says they can’t force him . He has a scheduled shower twice a week . He maybe let’s them stand outside the shower once a week while he does a poor job of showering himself . They have been very patient with him . Doesn’t help that the Physicians assistant that comes to the facility told us she thought he was capable of making decisions . FIL recently took a cognitive test ( because he wanted to prove he doesn’t need help ) which showed dementia .
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AL is not sufficient care for your FIL. If he cannot or will not keep himself clean, he does not get to choose his care level anymore.

Don't worry about appearing "mean.". Your FIL does not get to impose his smelly self on you or anyone else
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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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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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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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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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I don't think it's mean. I think it's a natural consequence for his behavior, though he really can't control his behavior much due to his dementia. You are under no obligation to take him anywhere. I wouldn't dwell on the lack of showering. Just make up some other vague excuse up to tell him as to why you can't take him out anymore. I think the ALF might want him to have more help or go to MC in the near-ish future.

Good luck.
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Beatty Feb 2023
"I don't think it's mean. I think it's a natural consequence"

Couldn't agree more.
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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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