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Hi. My mom is 90. She's had macular degeneration for years, and can just barely see anything going on, leaving her pretty much functionally blind. My hubby and I put on a room for her about 20 years ago, and she's been here ever since. I fully intend to see her through until the end. 2 weeks ago, I could tell she was altered and took her to the ER right away. They kept her overnight, and basically just gave her fluids. Her BP was up, which is very abnormal for her. I'll spare you all the details, but they believe she had something like a TIA. Way less than a stroke, but more than a TIA. Since then, she's had lots of weakness in her legs, and has gone from her cane to a walker, and a wheelchair if she needs to be on her feet more than 4 minutes. Her mental capacities are diminished. Just a few weeks ago, I was OK with leaving her alone for 6 or 7 hours once a week, but no longer. I've found a friend that can sit with her while I'm gone, and I just got her set up with Medicaid, and hooked up with a 'care organization' that work as a team to figure out her needs and mine (thank heavens!!!) I feel like I'm floundering. We've suddenly gone from somewhat dependent (due to the blindness) to not being able to leave her alone at all. She's not that out-of-it, but just enough to forget her cane, etc. It's like telling someone they're just a little too drunk to drive, in spite of their protestations to the contrary. Is there anyone else that's caregiving for someone that's blind? Is there any advice for anybody about things that I'm not thinking of? Any and all advise would be incredibly welcome (and I guess I just need to whine a little, too, if I'm to be honest with myself ;-) ) Thanks! Sandy

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It sounds as if you are managing to keep ahead of the game, Songofhands, and I take my hat off to you - you are not only doing a terrific job for your mother, but also being sensible enough to make sure that you are well-supported, which is the bit that took me forever to figure out.

The suddenness of this recent change in your mother could be significant, or it could be that she has stepped down a level to a new plateau and will be there for some time. I do know that with vascular dementia, often associated with a series of TIAs and small strokes, there is unfortunately no way to know which.
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My mom was living independently with her AMD until a bout of sciatica kept her in bed for a couple of weeks. I moved home with her temporarily and even though she recovered from her sciatica it became clear she shouldn't be alone any longer. She didn't really need any physical care at that point, just a little more help and companionship. One day mom wouldn't/couldn't get out of bed. I finally called an ambulance where after many tests the ER told me "sometimes they just get tired" and called an ambulance to send her home.I was beside myself with grief and worry and so totally overwhelmed that I made arrangements for her to get a crisis bed in the nursing home. After I toured this home I cried all night; it was old, it wasn't local, their palliative room was the size of a closet, and I just couldn't do that to my mom so I declined the bed and was bumped off the waiting list. I truly believe that mom would have died in that nursing home because she had totally given up at that point.
Fast forward, mom did eventually rally and get out of bed and was able to get around with a walker. Today, years later, she lives with me in a house I bought with her needs in mind. She is wheelchair dependent and needs help with all her ADLs. It was a steep learning curve for me, thank god for the internet and AgingCare because there was no help from the medical community.
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I have some folks that work with Medicaid...an organization that helps you keep a parent at home...on Thursday. I just got her approved last week. I'm sure that they'll be able to give me some good suggestions, but was wondering if there was anyone here with a similar situation. Thanks for the suggestions, though.
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At this point, I'm planning on her living here with my family and midwifing her into her passing. This is her palliative and hospice care. I guess the suddenness of her deterioration took me by surprise. Trying to get my feet back underneath me after all the rapid changes. It really did help just to write some of this stuff out.
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Did anyone mention Hospice or Palliative Care?
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