Add me to the list of people who are about to snap!

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For those of you who don't already know my story, I'll recap: My 83-yo mom had a stroke 3 mos ago. She's been in rehab for most of that, where she had a private room and was making physical progress. Then she started to backslide (her muscles on the affected side clenched up) and she "plateaued." So they move her into a shared room in the longterm unit with a roommate who plays the TV at top volume all day. That was a week ago and she is miserable. There's no way she can live in this place. So I've made the decision to move her back to her apartment, where she has lived alone for 30 years. I am working with an agency to set up 24/7 care. I know it will be for the best, but it is a massive adjustment to go from an independent life to having no independence. Anyway, I am losing it with having so much responsibility. I am an only child, divorced with two teenagers and a full-time job. My mother's boyfriend very helpful in many ways, but he's 84, so I can hardly ask him to do a lot. I'm panicking about setting up the homecare, as there is so much involved--getting equipment, moving things around, finding the right aides, hoping my mom doesn't insist on drinking too much (which she does), etc, etc, etc. I'm also meeting with a lawyer about her finances and spending down to Medicaid. It's another full-time job as you all know, and I am not even her actual caregiver. I am so stressed out and feeling so alone. This whole thing is on ME. I have wonderful friends and family, but no one whose arms I can collapse into and sob.

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Hi Robin,
We are in the process of spending down some of my mother's assets so that she will qualify for Medicaid eventually. (Some of her assets are protected in a trust.) She is home with 24/7 care. We are very lucky that in NY State, Medicaid will cover 24/7 in-home care once she qualifies. The private rooms in the SNF are not eligible for Medicaid coverage, apparently. It's much better for her to be at home, though now she is kicking and screaming about having 24/7 care, which she insists she does not need. Sigh.
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If mom can't afford a private room, how can she afford to stay at home with 24/7 care? Did I miss something?
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Hugs to you & add me to the list! After 16 years of caring for Mom, I've reached the end of my rope. During the Christmas holidays 2015, I knew I couldn't do it anymore. I realized I was in survival mode. After Christmas I made arrangements for Mom to have a full time caregiver. I was looking forward to having a LOT of the physical demands off my shoulders & just managing her care with caregiver. In other words, detaching with love. Then in February, she fell & fractured her hip. After 6 weeks in rehab, she went back home with caregiver. First thing she asked me was if I was going to stay with her. I said that I would always take care of her, but it would be different. This past August she had another emergency surgery & is now bedridden & dementia progressing & on hospice. This experience has changed me. After so many years of enabling her life long martyr syndrome, dependent, indecisive pattern, I've grown impatient, but I know it is much harder on her to accept her declining health, severe physical & mental limitations.
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Thank you, Sendme. Hugs back to you!
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Xinabess, More hugs for you-the last few days have been difficult?
{{{{{Hugs, just more hugs}}}}}
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Xina. There you go, Your mom will be better in her own home. Good luck, and take things one at a time. It will be much easier.
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KatieKate

You forgot to mention,holidays are extra for home care aides,and NH, medicine, PT,etc are extra and can add up fast.
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Thanks everyone. I'm trying to be optimistic about her going home, not terrified! I know there will be problems, but nothing can be as bad for her as being where she is now. That is pretty much the only SNF for her, since many of the others don't admit longterm patients and/or are nowhere near me. Being in her own home has got to be better. She has only been in the longterm for one week and her mood and morale have plummeted.

Her building is amazing too. They have a senior center, with activities, a social worker, an a nurse who can check on residents. It's a NORC (naturally-occurring retirement community) with lots of elderly residents. So there will be that support in addition to the aides. The key, of course, is how well my mom and the aides get along. Sigh. I have to go to work now. I can't think of anything else!
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Xina, having someone just to reassure and comfort us would definitely be a blessing. I hope this works out bringing your mother home. If nothing else, it will give you a chance to look for better places. Sometimes we learn of residential care facilities and other places that we didn't know before.

If it does seem to be working out, I heard there are state-run programs called PACE for seniors who are aging in place. They work with either Medicare or Medicaid. There are certain restraints on the program, but the program sounded promising to me in providing medical care. It may be something you want to look into to see if anything is available in your area and if your situation would work well with it. I don't know enough about PACE to offer any advice.

Fingers crossed for you and your mother. It sounds like you know what you're doing. I think you should trust your instincts and know if it doesn't work out, you'll be able to find a better place than the one she is in. I know you're going to need to vent. We'll be here -- it's not like we can go anywhere else. :-)
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So sorry Xina, I hope it all works out for the best!
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