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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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Please put me on the list to receive Chocolate.

Hugs, Xinabess. More hugs coming. Sorry I am not very helpful. But here's another hug!!
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Xina, please keep us up-to-date on how it is going once Mom returns home. I hope everything goes smoothly. I'll keep my fingers crossed.

And whatever you do, set boundaries as this is your mother's decision to go home to live, thus she needs to take full responsibility for that decision. Oh how I wished I had known that years ago for my own parents, I wouldn't be a walking zombie today :P
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There are only a few private rooms in her current SNF, and they are reserved for Private Pay patients. Even with a Private room, it's a really bleak place. My mom is truly unable to stay there for her mental health if nothing else. Going home seems like the right thing to do for her and I have to assume that once things fall into place, there will be no reason for me to have to rush over there all the time. I'm sure there will be issues, but there are in the SNF too, plus there's the very real guilt of leaving her there when she is desperate to leave. Home care is happening.
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I recommend chocolate, I'm having some now ;)
And seriously, you don't need to have every little detail in place before she comes home, just focus on the main stuff and work on the little things as they come up.
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Ask, beg the doctor to re-admit her to rehab?

More hugs, holding you up in cyber space, hugs hugs.

This is a tough situation. Talk to the discharge planner in the long-term unit.
Shouldn't they be helping with these solutions?
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I think Pam is right on this.

A private room is not more expensive than 24/7 care.

Even if you use non CNA help..you cannot expect the hourly cost to be below $20. That is if you use and agency...I strongly recommend an agency because you will need the have coverage if one aide doesn't show up or gets sick or any other thing which would leave your mom alone. So..you do the math... It's $480 per day...assuming there is no shirt differential to pay. It's $3,360 per week.... It's $15,120 per month. Hey..private room in a NH is only about $8,000 per month (only). And..it gives you the peace of mind to know that help for her is a buzzer away
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Xina, the logistics of trying to do what is best for our parent can be mind boggling. I know how it is, only child, too, no one to hand the baton off to. My parents were very independent and didn't want any help. Snarl, snap. But being the quiet good child I rarely raised my voice. My parents never realized that helping them logistically was like having another full-time job.

I know your Mom wants to be home, but sometimes our elders no longer get a vote when it comes to their care, unless they can take care of logistics all themselves. But guilt forces us to do everything, even though we have a full plate already. So, let's pile more onto that plate until it cracks !!

It's nice that your Mom has a boyfriend, even if he can't do the heavy stuff, he can be there to fetch small things for her. And that alone is a big help. Just hope he and the caregiver don't lock horns as he may want to be the "boss". But who knows how everything will work out until you try it. For your sake I hope everything goes smoothly.

I tend to think like the others on this thread, Mom should stay in continuing care until she is able to fend for herself. Get her a private room. This would give you much more time to getting all the ducks in a row.
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Xinabess, Can you wait until after Saturday to "Snap?".
The beds in an acute care psychiatric facility are much scarcer then, you would be much less likely to be admitted on a psychiatric hold, and the weekend doctors are only on-call. These docs don't want the responsibility of admitting someone,
especially if they just need hugs and some support for a time.
Can you get through with some advice, and many many hugs? Can you order pizza delivered tonight-just hug whoever comes to the door?

HUGS, BIG TEDDYBEAR HUGS, TO YOU, XINA!
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xinabess, for your own health, do not move her back home. If she can afford 24/7 nursing, she can afford a private room in a nice facility. This plan you have will kill you first.
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Aw Xina. Hugs, just for a start.

this is so very hard. Can you set up discharge for, say a week or two from now to give you time to get things set up? It's so great that her building will modify the shower! that's huge.

One thing I want to suggest. I want you to consider staying over with your mom the first night she's home (with the aide) just to make sure that the handoff happens. ONE NIGHT. Not more (I did this for an elderly friend several years ago, it gave all of us peace of mind). Make sure that there is an agency plan in place for "the next aide can't make it in". the solution is NOT to call you. Either the aide stays a second shift or they get another aide. YOU are not available. Make sure that is very very clear to the agency.

One other thing. Make sure that the agency knows that in an emergency, they call 911. Not you. This plan is only going to work if 24/7 aides can keep your mom safe and comfortable. If there's going to be an "emergency" that involves your travelling across the bridge to rescue her, the plan is a no-go.
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