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Hello all.
Some of you have seen my posts before and I won't get into too much detail, but my mom has been deteriorating over the last 2 years. I had her in a lovely independent living facility, but I had a feeling the independence part wouldn't fly for too long. Of course Covid complicated things, but mom was already dealing with dementia and ESRD (which could be of course VERY closely related....most likely vascular dementia). But anyway....
She had tried to leave the facility, at night, and at one time became very agitated with a staff member when they told her she could not leave (this was actually at 4 in the morning and she had her bag backed and was heading home she said). Anyway, I was told that she really cannot stay there. They have given her some basic AL services (her meds, prompts for meals and dressing), but they believe she isn't safe there (she tried to walk out the back through kitchen and people on their smoke break just happened to see her).
I did finally get her hospice, and she is now on seroquel so her leaving/ wandering at night is MUCH better. But she falls frequently. And she doesn't really do much/leave her apartment. They want her to call them when she showers but she is stubborn and still wants to do it herself.
Anyway, I started the Medicaid process and she will most likely qualify in the next week. I also have 2 different skilled nursing facilities that I believe have open rooms/beds available.
I had also talked to a company called PACE, which if you aren't familiar is a Medicaid program that allows a person to stay in their home. In this situation we would bring her back home with us. The nighttime stuff and wandering worries me and I'm just starting a new job as an NP and my husband works full time and I have a 14 year old starting high school, so I'm a little worried that even with the PACE program I may be over my head.
My questions are this...
1. Are there people in nursing homes/skilled facilities that are still fairly mobile and do they do activities kind of like AL facilities? Can it be a positive experience? I feel sick about the prospect. The one we are looking at professes that they are a home like atmosphere and offer all that...
2. Does anyone have any experience with PACE?
Sorry for my long-winded note. Just trying to get all the info out there.
This has been a long-gut wrenching journey that started with my father taking his own life and I just want my mom to have some peace and I'd like to be at peace with some of this. May not be possible. Life Is hard. I get it.
Just wanted some input from this supportive community! Thank you all in advance.

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I think you know mom can’t live with your family. You have a busy life, no way you could handle this.

Honestly it sounds like she’s ready for skilled nursing care in a memory care place. I’ve gone through it with 2 parents. Assisted living, memory care, mom died and I moved dad 3 states away to be near me. He’s on hospice now.

Ive been pretty lucky with care facilities. My mom refused to take part in any activities. Dad is not really able now.

Visit some places. Life is just not good at this point . Don’t over think this or expect too much. Keep mom comfortable and cared for.
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My Dad was in the PACE program. It is a decent program if you are just looking for part time care (Dad went to their day program three days a week) but not for full time care.
I agree with everything Barb said especially this..."what we envision as what is"best" for our loved ones is actually what would have been good 20 years ago, not now."
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EB, I get your anguish; I think most of us want our parents to have what THEY would have wanted in the past. Unfortunately, that may not be what they need right now.

PACE, as far as a know is not going to provide 24/7 care, which, with her wandering, is what mom needs right now. I just don't see PACE as a viable alternative for her care right now.

Let me tell you a cautionary tale. I had an aunt and uncle; they moved far away from their adult kids, which may or not have had to do with the fact that uncle had developed dementia.

Eventually, she admitted to her far away adult kids (and to my mom, her SIL) about the dementia, but she declared that things were "fine" at home and that she was managing well.

One day, one of my cousins (one of her adult kids) was on a business trip and paid a surprise visit. He found his mom beaten black and blue; uncle (the gentlest guy on the planet) was beating her up to get the key to get out so that he could wander on the highway at night. She wouldn't tell the docs about this, because she thought they would "lock him up". So instead, she locked him up at home and endured the beatings.

Cousin got APS involved, had his dad moved to a memory care/NH center where he was well cared for. Aunt visited every day, still convinced that only she could care for him. Sadly, she had a massive heart attack about 3 months after he was placed.

Uncle lived for an additional year, happy as a clam at the MC/NH. Never, ever asked again where his beloved wife was.

Please understand that sometimes what we envision as what is
"best" for our loved ones is actually what would have been good 20 years ago, not now.

Please get an assessment of what your dear mom needs NOW>.
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ebmick1973 Aug 14, 2020
Oh my word. Bless that whole family's heart. And thank you for sharing. I know that if mom goes to a place I will visit frequently, and I'll keep a good eye on her. And I agree, I need 24/7 care...it is just a hard decision.
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