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Hi Everyone, because my husband and his sister delayed getting proper care for their mom with Stage 5 dementia for a year (despite my pleading), she ended up in the hospital last week and is still there. Now they're moving her to a skilled nursing facility for a month. Because of her decline, she's now having trouble eating, recognizing family, and is hallucinating. The issue is that none of us live in L.A. where they live. We're in AZ and my husband's sister is in NJ. For 3 years I've conveyed to them that they need to have a long-term plan for her, and I've done all of the research legwork, connecting them with dementia specialists, physicians, assisted living places, adult daycare, in-home care, etc. Instead, all we've done is drop-in visits once or twice a year, scrambling to get her appointments, her hair washed, her clothes cleaned, etc. I've known this just wasn't sustainable. Two years ago I found 2 assisted living places in L.A. that we all toured and liked, but they have a 3-4 person waiting list now. Last year I found an excellent place 5 minutes from our house in AZ and literally walking distance to a next door hospital. Adult daycare is also 5 minutes away. Now, however, they want her to go into a skilled nursing facility for a month. I understand if she needs some physical therapy, but my ultimate fear is that something will happen and she'll end up staying there. Family won't be there with her regularly, as my husband and sister are leaving, and their dad is 86 and lives an hour away from the facility. I want some good quality time with her while she still remembers me and to have her near us so we can see her a lot. I'm angry and frustrated at them for delaying her care for so long until there's a crisis. I don't know if it's just denial or control, but their mom is paying the price. Sorry to vent. I'm just really upset.

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If her rapid decline has happened since she has been at the hospital chances are it's medication induced. It happens A LOT. It may be something you can look into, even over the phone. Also knowing the type of dementia is helpful with any medical stuff. At any rate, if it's medication they can get her off of it and it might buy you a little more time to get them to come with you. Good luck!
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I know it's incredibly frustrating but you've been trying for three years and they have refused to listen. You aren't going to change them now. So you need to just let it go. If you want some time with her, go visit by yourself and then arrange to call or facetime with her regularly. Just accept that you've done what you could and have peace of mind because these are not your decisions to make. I'm sorry.
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Assisted living places that include memory care were designed to help people with relatively minor physical and cognitive deficits. Unfortunately many are filling up with those who have very high needs which in my opinion does a disservice to all residents, those with higher needs are less likely to get adequate care and those with fewer requirements will of necessity have theirs pushed to the back of the queue. Bottom line is if she doesn't recover she will need that higher level of care, and you should begin to look for an appropriate facility.
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