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Mom, 79, lives in a memory care facility. She also has co-morbid bipolar disorder. I get a call from the facility doctor and he says mom is refusing hygiene and has developed incontinence sores from dirty diapers. His recommendation is she go on hospice which I think is a bit unusual. This would be hospice #3 in the past 7 years. I believe they are wanting to take the liability off their staff and place it on hospice. I am traveling down in a few weeks to assess her. Past refusals of hygiene usually mean a new caregiver is annoying her, or they are giving her caffeine soda. This facility likes to give ultimatums if I push back though, like we will kick her out if you don't agree to this. Should I just agree to not rock the boat? She's DNR.

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I can’t imagine how refusal of hygiene would qualify for hospice unless she had sores that were causing sepsis. Refusal of hygiene seems pretty typical with dementia.
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Reply to LucyImHome
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Mom sounds completely miserable and tormented in this life, bipolar and dementia have to be a horrible combination. Refusal of being changed can have severe consequences such as bedsores that become septic. Staff cannot fight her on changing as they cannot risk injury to either mom or themselves. No winners here. I agree you should visit and see in person what’s going on, from both perspectives. Hopefully mom is on medication to calm the combative behavior, perhaps it needs adjustment. Wishing you both peace
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Reply to Daughterof1930
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Pogo123 Aug 15, 2025
Thank you, yes she's had a miserable life. I've been dealing with her behavior since the 1980s so it's just normal life for us and we will get through it as usual, but boy do I wish this would end. Doc is prescribing an antipsychotic and we will bring the geriatric psychiatrist back. I think the facility sent him away a few years ago and nobody will tell me why! She was very stable a few months ago so I'm not sure why the sudden change.
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Bedsores are awful and not likely to heal without proper hygiene or even with proper hygiene if they are bad enough. Most likely the reason she would be in hospice is due to her dementia and debilitated condition.
Hospice gives another layer of help, keeps your mom from having to go to the hospital and perhaps will help her with any pain she might be in due to her condition. If she has been on hospice two times before you know how hospice works.
If she passes while on hospice there is a different protocol. Ask hospice to explain this to you so you can be prepared.

Why would you push back? Your poor mom must be in misery.

I’m sorry she is in the condition.
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Reply to 97yroldmom
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It's not the aides that are annoying your mom, it's the dementia and bipolar disorder that is causing these symptoms. Is she on any medication at all to ease these symptoms? Pain medication for the pain these sores are causing?

Some facilities are better than others when it comes down to treatment. Is the memory care facility even set up to handle the dual diagnosis of bipolar disorder being layered on top of the dementia? And now they want hospice involved? How is this going to work any better for your mom's behalf? My first question is how are they going to handle the hygiene issue and the sores?

For many of these places, it is all about the money and not helping the patient. This sounds like pure neglect on their part. There are ways of getting a client or resident cleaned up instead of letting them wallow in their soiled briefs and soiled bed linen.

I would go with the hospice suggestion. At least they can prescribe pain medications and provide the comfort your mom needs at this point in her life.

Patient's have a right to dignity and cleanliness.
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Reply to Scampie1
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My dad recently qualified for hospice, he has advanced dementia severe sundowners, anxiety, aggression. He is incontinent of bladder and bowels I don't think just one thing makes them qualify but I will take any help I can get for him. He lives in Memory Care and often forgets why he is there and gets angry I hope that Hospice can help calm him down , provide more support. Plus he loves attention so he's getting more
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Reply to Brandyrae75
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What is your goal with her care? I’d carefully consider the doctor’s opinion. Based on my experience of having a family member in AL, the facility was experienced in the care of people and I trusted them. If you don’t have that trust, you might explore options. When my LO went on hospice while in MC unit in AL, she got more attention. There were extra eyes and additional care. They also provided support for me as her family caregiver. Incontinence supplies were also provided. She was on hospice for 2 years.
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Reply to Sunnygirl1
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Go hospice!!!
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Reply to jules925
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Incontinence sores can be painful and cause death . If you believe there are some things not being tried regarding her refusals of care , I would go visit now . Not wait a few weeks .
The longer you wait , the worse those sores would get . I always found going in person got more results from staff.

Going in person asap would also give you a better view of how much she has declined in general . I would go now and see her in person . You may end up thinking this is the actual time for Hospice and keeping her comfortable may be the best . Or you may decide to move her to another facility .
Either way I don’t think Hospice is a bad idea , no matter what facility she is in .
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Reply to waytomisery
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Pogo123 Aug 15, 2025
Thank you. I live out of state and have a job so this was the soonest I could get down there. The doctor did not seem to have a sense of urgency so I assume it's not bad enough to be an emergency.
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Hospice is exceptionally lucrative; witness Hospice organizations being bought up by hedge funds as proof. They provide some help to facilities for certain. However, your supposition that they are ordering hospice because of refusal of hygiene is also not correct. They are ordering it because of many factors, including sores which may go septic and kill at any point. She may or may not qualify; that just depends on how well they "snow" the federal government into released the funds yet a fourth time to someone unlikely to have a REAL end of life diagnosis.

This is the system at work.
At some point it really isn't important to you whether they get in this extra help or not. They are working the system I would imagine; in that you're right. I am so sorry this dreadful quality of life is so ongoing. It's very sad in fact that this may NOT be the end. I surely do wish I had some answer and am certain in that we ALL feel the same.
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Reply to AlvaDeer
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Why wouldn't you want hospice? It would provide extra eyes on mom, additional people to take care of her, and more communication (from another point of view) with you.

It won't cost you anything, and the benefits for mom are many. Follow the facility doctor's advice. There's no downside for mom or you.
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