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Got the call this morning that the (idiot) physical therapist who'd been working with my dad said he wasn't progressing so... Tuesday.


The woman of the phone gave us the number to call for an appeal. She said that we can appeal twice. Is this right?


My mom and I had made it clear to the therapist that we thought my dad was worse than he'd been before, that he would not be safe at home.


I know this means maybe LTC is the best option but... we're going to appeal because this place has promised so much, pretended to be so helpful, and... it's been lies. They promised a home visit at the 'paint the picture' meeting - there hasn't been one. They promised to work with him on getting into a car - they didn't. They've done next to nothing in terms of occupational therapy. He's not trained safely on a walker, like they promised.


Basically, if we bring him home, they said he'll need someone walking with him all the time, he'll need help with hygiene, someone will have to help him out of a chair...


Yesterday, for the first time in a stay that began 9/21, a doctor saw him and asked questions about how he was before he fell and had to be there and what he's done there. My dad told the doctor that he hadn't been in a wheelchair before (no idea why anyone thinks that), that he hasn't stood on his own while there because someone is always hanging onto him. The doctor knew he has an appointment with a neurosurgeon on Monday and said "we'll talk more after that." And... when do we do that if they discharge him Tuesday?


I just... I feel like all the people at this place tell a slightly different story, all to get people to go away.


Maybe I'm naive.


Anyway, that was a bit of a vent but I'm so in need of advice and words and support.

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Linda22, you're right... I am incredibly lucky to have this place as a resource. I hate to say I'm lucky others have been through this but... I promise to pay it forward, share what I've learned from all of you and from my experiences whenever I can.

Even the financial person we talked to today, who has only worked there a few months, said she's floored by how complex and convoluted and stacked the whole system is.

It's so unfair that our parents worked their whole lives... earning money, saving money, paying into Social Security and Medicare/Medicaid, just living... and this is what they get.
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anonymous123913 Oct 25, 2019
Lost, our parents saved (or at least mine did) to be able to afford end of life care.

If they bought long term care insurance, that pays for AL/NH in part. Same way an auto policy pays out for accidents.

Medicare pays for hospitalization and doctor bills. Paying for LTC is a who other level of coverage.

My mom paid north of 10k per month for nursing home care for 4.5 years. Believe me, I know what this costs.
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Lost, please STOP thinking of yourself as dumb.

You are up against a system that counts on your thinking that way.

Unless your financial advisor knows ALOT about Medicaid in your state, I'd engage a medicaid savvy lawyer.
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feelinglost8 Oct 25, 2019
I am thinking of myself as dumb and you're right, I have to stop.

I hope I haven't sounded dismissive or bothered by anything you've said. I cannot thank you enough for what you've said.
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Lost, one of things that you need to get used to is responding to these statements that therapists and SWs make.

"What exactly does that mean?" is a good opening line?

It's one of the reasons that people hire Geriatric Care Managers and Elder Care Attorneys. So that they don't get snowed by the professionals who are skilled at "slinging it".

"What is the end goal here?". Where do you see my father in 4 weeks? How much is this going to cost?

We are all much to polite. Ask the hard questions.
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Read this:

https://www.payingforseniorcare.com/longtermcare/nursing-home-level-of-care.html

Lost, I'm going to suggest that if you are transitioning to private pay (in my area, Skilled Nursing costs $10K per Month or more) you need to get an eldercare attorney involved to protect your mom's share of the money. (sorry, chicken gravy was burning...)

So, mom is the "community spouse" and should not be impoverished. A good eldercare attorney will petition for her to have enough income and assets to protect her way of life.

PLEASE do this ASAP.
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feelinglost8 Oct 25, 2019
Thanks for that link and your advice. I have been trying to talk to my mom about an eldercare attorney. She's worried about how much it'd cost to have one. She has a financial advisor that my parents have used since 1996 who did contact an eldercare attorney to see if she should do anything in terms of trusts and fancy protections like that. The attorney said no. But I feel like a second opinion wouldn't hurt.

The financial person today said she thinks it'd be to spend down half of my parents assets until my dad has $8,000 and then be qualified for Medicaid. She said they'd ensure that my mom can maintain her way of life, and suggested if the house needs a furnace or a roof or windows or even new carpeting... now is the time.
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Thanks to Barb for referencing your early post.  I read it, and can understand the frustration and feeling that you're not getting the "straight story."

Something I learned years ago is that rehab facilities have their own goals, set by their owners or franchise management, and those goals don't necessary need to be related to a patient's goals, or condition.

That's happened to us, most recently a few years ago when the therapists clearly were hostile to my father, which was a drastic change from previous stays there.    Two clues helped me figure out what was going on:

1.   A few friends who had visited told me they were seeing a difference in patient rehab goals.  I don't know how they figured that out, but they were reliable, and I believed them.  One noted that there appeared to be more knee replacement patients than before.   Another friend confirmed that observation.

I called other units of that group and learned that it had in fact segued from general rehab into specialty areas.   E.g., the one closest to me took only terminal pulmonary patients.    That was a stark change from the chain's goal when it first entered the rehab world.

2.   The social worker (so-called) suggested AL.    I've been through this before, but decided to play along, asking if there were specific facilities she would recommend.   There was: an affiliate of the rehab facility, a  specifically business related entity.

She left the facility shortly thereafter; perhaps she didn't get a SW degree to provide referral service to the chain's other units.

It was obvious to me then what the goal was and how the early recommendation for discharge was designed to guide us into a long term commitment with these affiliated companies.  

There are unseen links in medical facilities and between medical people, some good, and some good only for them.  

During my father's last hospital admission, an NP met with me to discuss future planning.   She was the most unsympathetic, low class, rude bitch I'd ever dealt with.   She didn't even discuss medical issues, she just segued quickly in her recommendation for hospice care, but only at a group home run by someone she knew.  

If you think I wasn't steaming and ready to tell her where to go, you'd be wrong.   But I decided to play along and report her later (which I ultimately forgot to do).

I don't challenge personal, private or corporate goals like those, so I focused on getting good home therapy and took him home even though neither of us felt he was ready.  


Has the social worker recommended a specific facility for your father?   If so, you might ask how she came to make this recommendation, and if the facility is related to the rehab one where he is now.   Don't let on that you're trying to determine if the discharge now is intended to "guide" you to one of their other entities.

As to proceeding, I think you really need frank assessments from the neurosurgeon, and probably an orthopedic surgeon as well since your first post addressed those aspects.  

If you  and the neuro and ortho feel he could still benefit from more therapy, ask THEM for suggestions.   And ask or research your area to determine if there's a Rehabilitation Institute available.   Take some time to review this site:

https://www.dmc.org/our-services/rehabilitation

It's the local Rehab Institute which goes way beyond PT.   When I got PT for a meniscus tear, one of the patients was a stroke patient doing PT on a mattress, with his legs in the crutch braces.    It wasn't the first time I was surprised to see a stroke patient getting therapy at a rehab facility that was hospital affiliated. 

Even if your father would be best in LTC, he might be able to benefit from treatment at a Rehab Institute before and/or during LTC, and hopefully thereafter.    Learning how to move with restrictions, and how to adapt, would be far more positive than the apparent lack of anything worthwhile at the facility he is now.
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feelinglost8 Oct 25, 2019
Thanks very much for sharing all that and your advice.

I'm furious at the physical therapist, and I want to report him as soon as I figure out who to report him too. Aside from not seeming to have done much of anything, my mom and I went to a meeting with the social worker and left my dad with the PT (who had again been trying to show us how good my dad was walking, despite my dad saying he didn't feel up to it) and, while we were gone, the PT told my dad "you had to know you'd be discharged sooner rather than later" and "we just have to get your wife and daughter on board." Which seems so manipulative. And when my dad said he didn't feel comfortable and safe with the walker, the PT said "you'll get used to it."

The social worker told us that if we switch him to long term care, he does qualify (based on some score that is out of 18, the higher the number the more help you need) to stay right there in the same room on the general nursing floor. Which, since our only real problem is with the therapy department, isn't a bad thing at all.

She did say something about a three-day-a-week program of therapy, but I think she said that'd be private pay. And she said if he switches to LTC, they'd evaluate for a program of basic things that an aide would do with him as 'restorative therapy', and that if things improve, you can get a 30 day window of skilled therapy, 5 days a week.

Which would be, I guess with a goal of going home?
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" I don't think he would be safe at home as he is right now. Which is part of the reason I don't understand why they're discharging him to home and never really suggested that having made all or most of the progress he can means that maybe LTC is our safest option. Do you know what I mean?"

If he is NOT progressing, many rehabs will use that as an excuse to discharge. Ask them about Jimmo (I got my mom additional PT by arguing about stability and flexibility, but she was a LTC NH resident at that point and private pay, so I don't know if Medicaid pays for this).

Discharging him because he's not making progress has ZERO to do (unless you raise it) with him being appropriately discharged home.

Tell them that he can no longer be cared for at home. Period. Deal with the "more therapy" issue down the road.
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feelinglost8 Oct 25, 2019
Everybody pretended like they'd never heard of Jimmo. It was odd, and telling.

Somebody in the finance office said they are transitioning from physical therapy based terms of care to physician directed based care, and it started on October 1 but they're not billing for it until November 1. So we're just missing the cutoff, which is probably why they're pushing him out... my skeptical self says. She called it PDM... something.
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Also, it is far, far easier to go from rehab to LTC, than it is from home to LTC so don't let them do the "we'll send him home with support services - let's give this a try". It's much more difficult to make the case for LTC when they think (erroneously) that he was released to home, so it must be possible for him to be at home.
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feelinglost8 Oct 25, 2019
Thanks, that was a good thing to have read just before our meeting. They agreed with that when my mom said it and didn't even try "give support services a try" on us.

This may be because there's some score about needing help with things (I forget what they called it) that the worst/most help required is 18? And he's at 15 so they said he'd definitely qualify to stay in his same room on the general nursing floor and get help with dressing and bathing and all that.
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Call the "discharge coordinator" or social worker at the rehab and TELL THEM that discharging Dad home would constitute and "unsafe discharge". Those are the magic words.

Tell them that ONLY elderly mom is there to care for him and to pick him up WHEN (not IF) if falls and that either he needs to stay as a rehab patient or needs to be transitioned to long term care.

As how to make that happen. Make it clear that dad will NOT be coming home.

Do not fall for "we will get you help" or "we can make this work". Be stubborn. Say "NO, it will be an unsafe discharge" as many times as you need to. Instruct Dad and Mom NOT to sign anything without YOU being present. "We need to wait until our daughter/son gets here".
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feelinglost8 Oct 25, 2019
Thanks so much for this advice. I read it right before our meeting with the discharge coordinator/social worker and it was incredibly helpful. We talked about safety a lot. She, and then the RNAC, ended up explaining about 'restorative therapy' that aides would do with him if he's there long-term and that if his injury starts to heal and people notice physical improvements, he could even be moved back to a skilled rehab program for 30 days. And that a goal still could be to go home one day, that some people do stay for seven months or a year and then go home.

Oh, and I'd told my mom what you said about signing things and both times she was given a paper to sign today, she had me read it first.

I felt better, only a little because this is a harsh reality to face, after talking to them.

Then we talked to the financial person who helps with Medicaid applications and that seems insane. Like... how do you have a goal of going home if you've spent down half you money?
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From a recent answer to a previous question:

"I'm glad that the case manager is looking into placement now; start touring rehab as soon as she gives you places. You'd be amazed at what can be accomplished in 2 weeks of rehab, but whether dad goes home or continues to reside in a facility is a separate issue, not to be confused with when hell be ready to leave rehab. 

Leaving rehab means he's at the point where he's made all or most of the progress he can. Whether he goes home or stays with self- or Medicaid pay is a matter of "will he be safe at home with the care family can provide?""
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feelinglost8 Oct 25, 2019
Right, and I don't think he would be safe at home as he is right now. Which is part of the reason I don't understand why they're discharging him to home and never really suggested that having made all or most of the progress he can means that maybe LTC is our safest option. Do you know what I mean?

You did make me remember a question I had... does Medicaid pay for rehab at all? That's probably a dumb, obvious question and it doesn't, but I thought I'd ask.
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So, he'll be discharged from THERAPY. You want him to become a permanent LTC resident. Two very different things.

Have you applied for LT Medicaid?
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feelinglost8 Oct 25, 2019
Honestly, and again maybe I'm naive, I don't know if he has to be a permanent LTC resident. I'm hoping for some answers from the neurosurgeon on Monday, that'd tell us one way or another. He had x-rays and a CT scan on Monday so I'm assuming those are what the neurosurgeon will talk about next Monday. It's the first follow-up appointment.

And no, we haven't applied for Medicaid yet.
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