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Mom is 84, very frail, with dementia. Dad placed her in AL facility 1 yr ago. At first it seemed ok. She is increasingly refusing to comply, won't walk to dining rm, won't eat from tray in her room, won't shower or wear depends, is incontinent. Still recognizes me and my spouse. Dad refuses to worry about this situation, which is neglectful, isolating and she smells and sits on a urine soaked chair. I'm retired health care provider, strong enough to deal with her and she responds well to me. Can have home care several afternoons weekly for personal respite. I feel her care level woul improve from around 1-2 to 8-9 with this change. She is very low energy and sleeps until noon or 1 pm. Am I crazy to consider this? My conscience won't let me leave her where she is. I am the oldest sibling, have DPOA and can be a much better advocate. Thanks in advance.

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We moved a relative with dementia across the country after she lost her spouse. We put her into a memory care facility and I was appointed guardian and conservator. Within a few months she began falling regularly. Fell 4 times in one week, cracking her kneecap and hitting her head. Fell right in front of the staff there. I learned that the real difference between MC and AL is a lock and the price. My relative had knee surgery and then was moved to a rehab facility. Medicare would not pay a dime for rehab because she could not bear weight on that leg. Nobody is allowed to bear weight on a leg immediately after knee surgery! Anyway, she went downhill quickly, suddenly refusing to eat. Died 2 months later. IF you are going to move her, I strongly advise NH or FREQUENT sitters and help if she is in your home.
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"At present I know I'm more focused on her needs than those of myself or spouse."

But when will you be able to step back? Will you be able to, if you move your mother into your home? Is this fair to your husband?

I say move your mother into a facility closer to your home, rather than into your home.
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sorry not a direct answer to question but if shes incontinent
... getting washable incontinence chair pads/covers and bed pads +wheelchair etc (not saying she doesn't need the adult diapers) helps a lot. I know its difficult.
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It seems that the most reasonable solution would be to move her to a better facility as a first step.
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Answer to your question, I Don't think Mom would do well with the change. Even with your training, it will be a 24/7 care. She will only go down at this point. Also, maybe a AL isn't the right place for Mom. Time for more hands on care.
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Sorry, didn't read all the posts. I am surprised Mom has lived this long. Has the facility helped in any way. Their aides should be trained with dealing with stubborn residents. But, I also know they can't force her. My MIL actually will herself to die. Get a doctors order for Hospice. The will come in an evaluate the situation. If Mom falls under their criteria, then she will have an RN do check ups and an aide for bathing etc. Also, diapers at no cost and I think medication. Your Mom may do better on Hospice. She will be kept clean and comfortable. If you go this route, make sure the cost for her care by the AL is adjusted to show they r no longer doing it all.
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Ok, so the assisted living is private pay if she’s on Medicare only. Have you explored hiring extra help where she currently is and getting updated assessment before you move her. Are doctors in your area accepting new patients with her issues? Again, if it becomes package deal with Dad? You could be in over your head quite fast. And an understanding spouse might not stay that way for the next five years with no travel etc....
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I appreciate all of your responses. It would be much easier if her current situation could provide memory care, but Dad didn't consider that when he made this choice for her. The failure to eat has gone back several years, and was especially bad when she was at home. At that point I stayed with her for a week at a time when Dad was hospitalized, and she did amazingly well with me there. Much of this I suspect is due to isolation, which may be no better in another facility. She also has chronic gi issues which I have a good handle on, but the food service staff doesn't seem to understand. She is subsisting on ensure and yogurt. I'm fully aware that a move of over 300 miles would be very disruptive and an irreversible decision. At present I know I'm more focused on her needs than those of myself or spouse. We can have home care as little or as much as we want, it would be paid for privately. It's impossible for me to predict how disruptive it will be for us. Currently she tends to get out of bed most days, partially dress herself, and walk 8 feet to a chair, where she sits for the remainder of the day. Some days she doesn't get up. There are certainly other health or mental issues that are being missed.
I'm willing to bathe her in bed, change diapers, or whatever it takes. Can't anticipate how I might feel long term, but expect at least 3 afternoon shifts weekly of home care provider to help or take over for 4 hours. I know she could take much more time than I now anticipate. I'm still gathering information before discussing this with Dad, who could either hate or like the idea. She is on Medicare and has a healthy enough estate that we can afford 24 hr care if needed. I'm not sure how I feel about residential memory care. I see it as a last resort for her. I would feel the need to visit daily, of course. I'm very grateful to hear from those who have btdt.
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Are you crazy? No. You are compassionate. And perhaps overly optimistic.

Does your healthcare experience include extensive working with persons who have dementia?

I have a feeling that you could get better results with your mom than the AL is getting. For one thing, the attention would be one-on-one, and she MIGHT comply somewhat just because she likes you.

On the other hand, her dementia has clearly gotten worse in the last year. An AL is no longer an adequate care level for her. She should probably be in a nursing home or perhaps memory care. I think it is entirely possible to provide AL level care in a private home. But I think it is very difficult to provide a higher level of care than that.

I wonder if it is feasible to move mom to an appropriate level care center near you (not AL), so you could visit daily, and be an informed advocate for her care? That might give you the best of both worlds, so to speak.
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I think it would make a lot more sense to move mom into a facility near you so that you can advocate for her but still remain in a daughter role and not her 24/7 caregiver. If you spend much time on these boards, you will read story after story of burned out caregivers who moved loved ones into their homes only to regret it. You're doing it with the best of intentions but the day-to-day stress and struggle wear you down. My mom lived 1.5 miles from me in a facility until her death at almost 98. I spent a LOT of time and effort on her care but I could still go home to the privacy of my own home at the end of the day. I would have gone bonkers if I lived with her. My mom had some kind of dementia but was continent up until the last week of her life. She was also able to heat up her own food and keep her daily routine. But she still required a ton of work and oversight from me. If you want to move her in with you, please spend some time on these boards reading threads about caregivers who move parents in with them.
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I wrote a long response which condensed to *it could be a very bad idea*. How long have you spent with your mother at any given time since she went to AL? Is the ability to deal with her a short-term deal as you visit prior to the recent refusals of care (or) have you spent 24 hours with her for 2-3 days at a time recently during the refusal periods to see how she manages with you. You won't have the facility doing laundry, cooking, or cleaning when she moves in with you. Are you hiring assistance to do that or will your own family be filling in? The caregiver respite a couple of times per week? Is Mom paying for that? Is she on Medicaid - if in another state, she will have to qualify again in your state for Medicaid and the programs vary widely on what is covered, waiting lists for "in home" waivers, etc. What if mother refuses their care and help in your home? What if she refuses to go to bathroom and leaves your furniture soaked in urine? Are you going to use the "going back to a facility" stick to get her to comply? Is it possible to examine having her transferred to an AL or perhaps memory care facility near you where you can check in on her more and manage her care while being able to stay a daughter. Will you be expecting (whether conscious or not) to have siblings offer to give respite or help? I would not count on it - they may play armchair quarterback and offer you helpful advice or demand financial reports. You sound like a great person concerned with care, but your own health and retirement could suffer greatly if you offer it up without planning for "the next stage" which you might not be able to manage at home and could happen quickly.
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Kcg, if you are a retired health care provider than you have an idea what is all involved. But I would think it would become a whole different ballgame when it is your own parent compared to a client.... and you wouldn't be able to "go home" after your shift.

It is something you can try, and as we all know any type of move for an elder with dementia worsens their dementia quite a bit. At Mom's current Assisted Living does the place have a Memory Care section where she can move, still be in the same facility, still see the same people, and eat the same food?

How would your Dad visit your Mom if she is moved out of State, or would you move Dad too to stay in your home.

Is Mom self-pay or on Medicaid? If the latter, then Mom would need to re-apply through the new State. Each State has their own rules and programs.

Here's a good article: https://www.agingcare.com/articles/Living-with-Elderly-Parents-Do-You-Regret-the-Decision-133798.htm
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