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My mother has early onset FTL dementia, she's 53 and started showing signs at 46. I'm 25, she's been living with me full-time for the past three years. One thing the dementia did was turn her from an introvert who was scared to go outside, into an extrovert who will talk to anyone willing to listen.


She mostly watches TV all day, day in and day out. She occasionally will go hang out with one of our older neighbors, but it's rare, mostly due to them not being sure how to handle her on an off day. She used to read and do word searches all the time, and would get tunnel vision, so it passed the time for her. But I think the word searches have gotten too hard for her. She circles the letters, and then connects them by a line. She's said she doesn't think they put the worlds in the puzzles anymore because she can't find them. She's also slowed down on her reading. I honestly don't think she remembers the story for more than a couple hours, and gets confused.


I haven't been spending a lot of time with her as of late. I work from home, so I don't have an excuse. I'm not entirely sure why I'm pulling away from her, but the thought of spending time with her beyond making sure her needs are met or taking her to the doctors, gives me so much anxiety.


I feel terrible and like I'm failing as daughter. I'll eventually get her into assisted living with memory care, I've saved up enough for about four months so far, I need a year's worth before I'll push anything. The place she wants to go to (where her older sister is) doesn't take her insurance.


Until then, are there programs I can get her into that offer daytime supervision but also gives her a chance to make friends and get enrichment of life? She's still able to dress, go to the bathroom, and eat by herself (she's not allowed to use the oven or stove anymore.) I feel like she's wasting away in front of the TV, but I don't know what else to do until she can go into assisted living.

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When I had the help of APS I filled out a form for long term Medicaid. They said the only reason they denied her was because she didn't have SSDI, that when she did receive to apply again then, but I haven't been able to find the forms. I'll contact Agency on Aging. Thank you.
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She has medicaid/Aetna for medical insurance already. But the facility told me this morning through email this.

"We are a private pay, long term care community that does not accept Medicare or other insurances, with the exception of long term care insurance. "
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You can't get Long Term Care insurance for someone who has been diagnosed with Dementia. I think perhaps you mean that you applied for Medicaid on her behalf?

Call up your local Area Agency on Aging and ask them how to apply for Medicaid for your mom.
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I tried to get her on long term care insurance a year ago, with the help of APS, but she was denied for not having SSDI at the time. I talked to the facility she wants to go to this morning, and they said they take long term care insurance.

I want to reapply for the Long term care insurance, but I can't find the forms anywhere, just a bunch of provider sites that look sketchy. I had the help of APS back then, but they closed our case due there not being an issue they could handle. I called them due to one of my mother's episodes where she scared the crap out of me. She's been good since my step-sister has come to live with us.
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Everyone has the right to vent. If you don't you will blow a gasket. This is a safe place. You won't upset anyone here everyone understands.
I agree with Barb don't spend your own money. If she has no money start applying for Medicaid now. Can you change her insurance?
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She gets SSDI, but it's only $1099. The facility her sister is at costs $5300, though her sister is more advanced than her, but her dementia mainly effects her speech. She doesn't have any assets of any kind. The car she brought with her has a value of less than a grand.
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AS, we all need to vent.

You don't need to spend your money on mom's care. It's mom's funds that should pay for that. What are her resources??
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Sorry for the venting. I didn't mean for that to happen.
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