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You have a very tricky situation there. The problem is what happens when you're not there. If she's pretty nonverbal it will be hard to know anything. Can you have a camera recording? They did allow that where my dad stayed but I didn't put one in, didn't know if I should or not or how to go about it. What to do. It helps to try to be friendly with the staff though I know that can be hard to do usually if you can they are more helpful. You are in a really tough situation with your brother as well. You may need to look at other places to see if that is the problem, sometimes the staff really don't do their job or they do but they are understaffed and can't work with all the residents. The same problem could come at a new facility also. Has the irritability gotten any better? Staff will usually avoid the more irritable patients though they do the job they get out fast and move on, maybe she is still being fiesty with them. She may even act different when you aren't there. Also I think you should start writing about what happens each time like when you visit and what you observe and what you ask then what the staff or manager say. If you have it written down it is your account in case something happens. It can show the discrepancy in what stories they each tell you. I'm sure the facility doesn't really want to lose the pay from having her as resident. Tough decision but you have to make one. When you visit, though you're probably exhausted, maybe can you be the one who helps her get up and get around a little. That may be the only therapy she gets if they aren't providing it.
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We had an Aunt with Sundowners and knew that she wouldn't adjust to the Caregivers. A demanding woman she wanted to stay in her home: but Re luck ently, we agreed to and chose to let her sleep at our home, every night, then would transport her back to her home daily. It seemed awkward but we both quickly adjusted. Obviously, her own home and our help made life livable, even enjoyable. She lived on taking care of her personal essentials, and we enjoyed the experience of living with a person who was living in her past - often repeating stories of her life in the 1920' and 1930s. JCD
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Jimmy35 Aug 2021
I think you qualified for your Saint's wings! Find out what works and do it!
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I live in assisted living because I can't walk - but I am l00% functioning, still working two jobs at 87 l/2 years old (51 years and 15 years as a Power of Attorney) and do 99.9% of what normal people do against impossible odds - but I force myself to succeed. On two occasions I nearly lost my life because no one stepped up to the plate (emergency heart surgery after I was unconscious for 25 hours saved my life because I dialed 911). The other situation was critical too - but I made it. And there were two more times. I do it all myself because I cannot depend on anyone to do anything. They are understaffed, underpaid, and do what they must. I would consider another facility and see how it works out.
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Dragonfly39 Aug 2021
Thank you so much for your reply. God bless you for giving me a 1st hand account of living in a ALF. What a strong lady you are. I will be you one day as I don’t have any children and out of cousins and such I’m one of the youngest so don’t think I’ll have anyone looking out for me either. I pray for good health for you for many years to come. You sound like an amazing lady. I’ll update on mom soon.
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You should go with your gut. I also highly recommend having a camera in the room if you have a loved one with dementia. They do not have a voice and rely on you to advocate for them. Based on the things I saw in my moms high end memory care facility on camera, I would never have blind faith in the caregivers in these facilities.
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Dragonfly39: Imho, you have every right to question why they are keeping your mother in bed all day, e.g. it's easy for them, but your mother is the individual whom they are supposed to be caring for.
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I am so sorry you and your mom and brother are going through this.
My sense is your mom needs a higher level of care than this memory care facility can provide. They do not have the medical resources a nursing home has. My mom recently went from ALF to hospital after delirium we thought was triggered by a uti. It wasn’t. She was dehydrated. Anyway, after a terrifying few days when we thought she was mentally gone, (hospital security called; sedating her with Haldol), she spent 2 1/2 weeks in rehab and returned to herself. She is now back at the ALF. I say all this bc during that time I was looking into memory care and learned they don’t have the medical team like a rehab or nursing home does to deal with the delirium (should it return).
I do not think the ALF is enough for my mom and in looking for her next placement, I will be looking at nursing homes, not memory care, bc I don’t think they are equipped to handle my mother’s needs. It sounds like your mom’s needs aren’t able to be reliably met where she is. I would visit some nursing homes, check their medicare ratings and talk to the staff and residents there.
Wishing you some good support in caring for your mom.

Oh! And if it’s less than 30 days since she left rehab, you can ask for her to be returned bc she was prematurely discharged—which is what it sounds like with her not walking.
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Unfortunately, many facilities do not force them to do anything - easier for them. Especially, if she is nonverbal, the longer she is left in bed, not bathed there will be more deterioration in both her physical and mental decline.
I had a similar situation with my Dad and we made the call to move him.
Don’t forget, they get money for each client.
If I were you, I would get her out fast. Once done, put in a formal comply with the state.
Been there & Done that.
Good Luck & Hugs
Nanakw
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My mom had long term aphasia from a stroke when she was 70 and wound up at 93 in the hospital after a UTI. She was not moved and her dementia took off from the hospital experience. I was told as much by a doctor at the rehab I placed her in when she couldn't hold up her own weight. I was hoping the extra pt at the rehab would help her make one of her miraculous recoveries. But things were not great at the rehab either and I couldn't visit due to covid. Looking back I realize she was declining even before the UTI.

There is the stress of moving your mom vs continuing as it is. I wouldn't expect things to get better there. What you see when you are there is probably even better than when you are not. I don't see a reference to your mom's age. Wondering if she can express her wishes and feelings even with her aphasia.
I would talk to an outside neurologist if she has one asking considering where she is now, what would be the best way to go. Maybe even talk to her primary as she/he may know your mom well.
There are places that prioritize walking with the patients, moving them and assisting with their independence but it's not easy to know which ones actually do these activities from outside reviews. Maybe talk to some people who know first - hand the experience with another facility.

Hoping you will take care of yourself as well.
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Move her! You shouldn't feel bullied because you question your mother's care. She needs to be able to be as active as possible for as long as possible. Sounds like they are "restraining" her just to make it easier on themselves, and that is detrimental to your mother. Trust your gut and find a better place for her.

In my situation, my mother in law was in hospice, and and we disagreed with their care (they were making it easy for them to handle her). So we fired the hospice and got another one. It was a horrible experience as the hospice was totally unprofessional and violated the law while we were going through this. That told me I was doing the right thing in moving her to a different hospice service, and I fought them until we got her transferred without ANY cooperation from them. My gosh. My only regret is that we didn't do it sooner.
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My mother was in a rehab facility and they were horrible to my mother until I hooked a camera up in her room, when they noticed it, they put a huge note outside mothers door saying “your under video surveillance” everything was peaches and cream after that!
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Move her because you won’t have peace of mind worrying.
If the aides are avoiding you, that’s huge red flag.
I did not like a placement she had (years ago) so I called her doctor, told him I wanted her to move to an assisted living with private room and bathroom.
He sent the order to the supervisor, I gathered her belongings and wheeled her to my car, with her oxygen tank, and she was much better off.
Long term care insurance enabled her to have more options.
Long before that circumstance, my cousin was an absent POA. She never visited places, she decided from afar which was inadequate.
During a visit, I found her scratching her shingles, hands all bloody, soiled herself, the whole hallway stunk, so I called the state omnibus.
He was there within an hour.
They had tons of violations and understaffing. Closed for a few months to address it all.
No regrets making that call.

Your instincts are talking to you.
Listen to them.
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My experience tells me that you need to be her advocate and make sure that they deliver quality care, not just what their supervisors will tolerate. I see it frequently: call lights on all up and down the hall and the staff laughing it up in the office.
There were simply no nursing homes where I would place my wife with dementia. I undertook the task of caring for her at home with caregivers whom I supervised and worked with. We became like a family and provided 24/7 care for her for 2 years. It was expensive, yes! But, she was happy, clean and knew that she was loved.
Anything less is simply neglect.
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Put a camera in her room if you are able. I would not feel bad about moving her if you get the same unacceptable answer from the administrator. She will get better care if they know you have no compunction in removing her. Make Contact with an ombudsman for sure, if nothing else for future reference.
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Nayners24 Aug 2021
Yes, yes, yes to the camera!! In my personal experience with my aunt and horrible caregivers, the camera was my witness. I didn't hesitate to send video to the caregiver company. Many caregivers are in it simply for the money. They do not care about the client. Just the thought brings tears to my eyes.
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UPDATE: Thank you to everyone who replied just knowing others that are going or have gone down this road has given me a little piece of mind. We couldn’t get her pain under control and the Dr feels her dementia has progressed so we made the decision to put her on hospice care. In doing that I was given the option to place her in their Comfort Care Center/nursing home. It is a little further from my home but only 25 min drive so not terrible. She seems to have done well with the move. But I fear the Dr was right. When they try to get her out of bed now she refuses screams and fights. She does wake for a while during my visits sometimes she is “with me” sometimes she isn’t. I did follow much of y’all’s advise and visited many nursing homes in my area. None of which I felt were right for mom. I again looked into getting in home care for her but with my brother I just feel that is too much for him to handle and watch. I have to be very mindful of the impact of this on him as well. I don’t wish anyone be in the position but I know many are in balancing their family with the care of a loved one. The old facility administration was actually very helpful with her move. CNAs weren’t vey helpful but that’s ok. The facility even gave me a refund for the days we didn’t use after I paid. I will never know for sure that I have made all the right decisions but I have to trust that I am doing what I fell is right for my moms care during all of this. I was with my father when he was placed on hospice but he had cancer (my step mother made all the decisions for him) and his time in hospice was more clear. Although I had hoped my mom would bounce back, I’m afraid that she has started down the road to leaving us. She made her advanced directives very clear in her trust so I know I am doing what she wanted. And in the new place they have made her comfortable without sedating her which is a very fine line to walk when you have a new pt. I am at ease in the new place and have been with mom everyday at different times to make sure she is getting the care she needs. As we all do, I wish my moms road was easier.
Again thank you to all who gave their advise and wisdom to a newbie who is just trying to navigate a path that is so difficult to go down.
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Momheal1 Aug 2021
You are an Amazing Daughter. Surrounding you in Peace - strength and comfort. 🦋
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