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So my father has been in a SNF at a nursing home for what we hope will be short term rehab since September 22. So he's still under the Day 1-20 of the Medicare pays for it thing. I went to a 'care meeting' with my mother today and... I am more confused and upset and anxious and scared than I was two days ago when he seemed out of it. Has anybody been through this sort of thing?


I don't really know the point of the meeting. A Social Services coordinator was there, someone from Dietary, a Nursing Coordinator, an Activities Director, and (briefly) his primary physical therapist. The therapist said he's walking 60-80 feet and more or less getting used to a walker (he has issues with contracture on his left hand and needs help gripping it, I guess). The therapist says some days are better than others and that there are still problems with stability and turning and shuffling and walking... all of which led the the fall that landed him there (on top of a host of other problems). Anyway, this seems sort of like progress.


Anyway, the Nursing Coordinator said when the 20 days ends and that his supplemental insurance will cover the rest for days 21-100 but... it'll be up to physical therapy when he's strong and stable enough to come home.


But... they talked around him, saying "if he can" when the sign-in sheet was passed around, talked about "do you hold his hand when he's walking around?" and when my mother said she wanted him to be able to be independent enough to get up and around the house on his own (neither she nor I is big enough to trained enough to do physical lifting and care safely... as we were doing before he got hurt) and somebody said "you can get a lift chair" as if that was the only chair he'd ever have to sit in.


Shouldn't that be when they start saying "maybe consider long term care"?


So... I walked away kind of terrified they're about to say "he's fine, you have 48 hours to take him home."


Is that bad of me?


How long do people usual spend in short term rehab at SNFs?


Do other ones have the 48 hour notice rule?


My mother and I (I live with my parents) have a lot of fears about how life was before and how it could be again (he won't do exercise or move around much at home)... which of these people who were at the meeting (and seemed very scripted) do we tell about these fears?


Should we have a meeting without my father there so we can feel more free to say them?


How do I talk to my father, even to my mother about them?


How can anyone at a nursing home having a meeting about this sort of thing, asking if someone will be there 'most of the time' to help him and if we've walked him around my the hand, even suggest that's a good way for anyone... him or us... to live?


Am I overreacting? Panicking for no reason?


Am I awful for asking these questions?


I adore you for having read this far in my panicked post and appreciate all words of advice, experience... that you might have.

No need to worry. Yet.
What you described sounds like a normal care meeting to me. It’s simply a status meeting with the whole team and they always include the resident (unless they refuse).

if you’re not comfortable speaking candidly in front of your father, contact the Social Worker privately to make sure s/he understands the situation at home. Be clear that you and your mother cannot provide hands-on care for your father at home unless he is able to transfer independently. This is no time to let any feelings of guilt or obligation get in the way of an honest assessment of your and your mother’s abilities.

The SNF will not release your dad if he can’t be physically independent and there’s no one to transfer him. However, if the two of you just nod your heads as they discuss care plans that include your physical assistance, they will plan to discharge home. You have to speak up.
Also, if you haven’t already, start planning financially for long term care. Talk to the SNF’s business office. If Medicaid will be in the picture, you need to get your ducks in a row. It’s a good idea to meet with an elder law attorney.
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feelinglost-

I really feel for the situation you and your parents are in. It sounds like you are not panicked about financial issues involved in your father's care but about how you and your mother will manage to care for him if they release him before he's fully mobile.

Unfortunately, I think you're right to be worried. I believe these meetings are called to make sure the patient will have the support they need when they go home. Generally they want to release the person as soon as possible. I honestly don't know if the fact that your father has supplemental insurance will play into how long they will keep him. The one time my mother was in rehab, they required her to pay the patient's share for days 21-42 up front (estimating her rehab would be 6 weeks) and released her when that time was up.

I believe when you're in for rehab, they have to release you when you're not continuing to improve (AlvaDeer, please correct me if I'm wrong). So that will figure into when they decide to release him. He may still need a lot of help. He may always need a lot of help from this point on. If he doesn't want to exercise or move around at home, it's likely he won't want to do it at the rehab, either, and that may put a cap on how much progress he's actually able to make.

No, they don't think this is a good way for anyone to live. Unfortunately, they don't concern themselves with that. They want to make sure the patient has support at home, even if that means someone helping him walk, get up from a chair, bathe, eat, and everything else. If you don't think your mother and you can provide the assistance he needs, now is the time to apply for a permanent nursing home spot.

A private meeting without your father there might be a good idea. In your place, I'd want to know how much independence they think he will ultimately attain. Unfortunately, they probably won't be able to tell you that, because a lot depends on him and his motivation. There's only so long that a rehab can and will keep him, though. And given his lack of self-motivation and the fact that he landed there to begin with, he probably will never be better than he was when he went in. If I were you, I would assume that and start making plans accordingly.
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feelinglost8 Oct 8, 2019
Thank you for your thoughtful answer, CarlaCB. It was stark and honest and I need it. You're right that I'm more panicked about health and safety than financial things, at least right now. Before he fell and was hospitalized and had to go into the SNF, I was terrified that my mother or I would get hurt helping him. And everyone at the hospital talked about how often that happens.

My mother and I do have things we want to be more of less sure of... like him being able to get up from a chair on his own... when/if he comes home. We didn't get a chance to ask today, not even just because he was there but because it was so rushed.

We probably do need to start making plans. Just don't know how to start... or even if it is time to start... I just hate the idea of waiting for another injury at home.
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Feelinglost, please do not let this be handled by any attorney that is not certified in elder law.

I can't begin to tell you how awful this could turn out if the person is only jumping on the elder law meal ticket. It happens, they don't have to have any special training or schooling to say "elder law" please get a certified elder law attorney. It will be cheaper than paying for the education of an attorney that wants to handle elder law. (I know that lots of people believe that you will be paying more for a certified specialist, not so, they do this everyday and they don't need to do research to represent you, which you pay any attorney for their time scouring law books to find precedence and laws. It is cheaper to use someone that does this everyday.)

I learned the hard way to not trust professional to professional referrals. Please do your own due diligence.

I know it seems like a lot, but a bad elder law attorney can create irrevocable damage.
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feelinglost8 Oct 10, 2019
Thank you. I'm sorry you had to go through that, and I'm so grateful for the warning. It's frustrating because I can't find any elder law attorneys in my city (in northwest Pennsylvania) and the closest one seems to be three hours away. That does seem to be the one the financial guy is contacting, he said he was contacting someone in Pittsburgh for general advice for my parents about trusts and protecting assets, so the distance seems to be a good sign. But I'll be sure to verify before anyone signs anything.
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If you don't feel like you and your mom will be able to care for dad when he's ready to be released from rehab, then TELL them that! Normally, a SNF will tell you that an elder is not suited to go back home due to his limited mobility, etc, and that he'd be better off STAYING in their facility as a long term resident, if that's what they feel to be the case. If they feel that he'll have adequate care at home, then they will release him.

I definitely do not think you are a terrible person for asking the questions you're asking......you are smart and sensible. Because caring for a person at home who suffers from mobility issues will only land him back in this situation again and again, and may even land YOU and mom in the hospital, realistically! Your dad may ultimately need long term care in a nursing home, but you won't know that until his stint in rehab is finished. Also, check out his insurance to see what the benefits are for days 21 -100 in rehab, and how much they will pay and what his co pay will be, etc.

I have to tell you, the scariest time in my LIFE is when my dad was put into rehab back in 2014 after he'd broken a hip. He and my mother were living in an independent living apartment and his mobility was worsening on a daily basis. Yet he refused (of course) to use a walker. He fell and broke his hip, had surgery, and went into rehab but was NOT making progress, according the Medicare guidelines. So, every day, they'd threaten to 'release' him from rehab and admit him into the Long Term Care section of their facility as a resident. Well, what about MY MOTHER? She couldn't very well go live with him there! I felt like I was having a nervous breakdown (as the only child) at that point. To make a long story short, I found an Assisted Living Facility *ALF* that would take both of them and that's what I did: I moved them from IL into the ALF together. My dad passed in 2015 but mother is still alive and now in Memory Care. Sigh.

It's a long, hard road with these folks, I know. And I feel for you and the panic you are feeling right now.

All the best
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feelinglost8 Oct 8, 2019
Thank you! You can just do that? Tell them that even if they think we meet the criteria for caregivers at home that we're not comfortable with it? I realize it could still be possible that he doesn't reach the goal of coming home, and I might be panicking for nothing (but panic never listens to reason, does it?). It's almost a double-edged sword, though, because I don't want that for him if it doesn't have to be but... I don't know if it has to be. I don't know how to know.

He does have other medical issues (some that are even still maybes until they can be tested for after this fracture heals) that could mean it's going to get worse.

His supplemental insurance does cover 100% of what Medicare doesn't for days 21-100, so there's that. And he may not exercise at home, but he works in rehab for some reason so maybe he'll get more time.

They just threatened to 'release' your dad to long-term care? Like told him "work or else?" but never carried through on it?

Thanks so much.
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Feelinglost, please go to www.nelf.org and find a certified elder law attorney in your area. If dad has to go on Medicaid you really want an attorney that knows how to ensure that your mom isn't left penniless. There are rules and regulations that require someone knowledgeable to protect the community spouse and ensure the best care for the Medicaid recipient.

I would do this like tonight and starting tomorrow make appointments to get this sorted out. It takes a bit of time.

I am sorry that your dad is so ill, I hope that he improves and is able to come home, but if not it is good to be prepared.
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feelinglost8 Oct 10, 2019
Thank you! I hadn't known about that site. My parents' financial advisor is contacting an elder law attorney he works with for them but your link is a good resource I'll add to my list.
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You were part of a very careful and about as thorough as they get care plan meeting. They like family and patient there. And yes, you got all the facts and you got them right. As far as how long he can stay, medicare will cover him for these first days, yes, unless he reaches a point where he cannot or willnot cooperate, or he has reached a level beyond which they do not feel he can progress. At that point he is not a "rehab" patient and the choice is to return home to you or to be placed.
I think that what you are saying here is that you fear he will return not well enough for your Mom and you to care for him.
I think you are right in this fear. That will likely be the case.
You need NOW to go to social services and saying that he will not be coming home if your Mom cannot care for him at home. He must be independent in many things for him to return home. That it is your feeling he may NOT be. And it is not a question of lifts and hoyers and this and that, you will NOT be caring for him at home with equipment if his needs are too great for your Mom. So that you will need placement if he does not make excellent progress.
So that will then be on them. Make no mistake, they don't want to do the work. They want you to take him home along with their platitudes of "we can get you help" (they can't) and "We can make this work" (they can't and won't).
So start now. A visit with you and your Mom (AFTER you and your Mom talk this out together) WITH A LIST of the things Dad must be able to do to return home to your care. If he cannot do them he will need placement. PERIOD and no argument.
This puts them on notice. They will coordinate more carefully with PT. And you yourself will know how much progress he is making.
Make contact with the doctor. Give him a letter to his hands or on the chart. Dear Dr. Manderly. I need to tell you that I feel that my father may not be able to return home to the care of my mother. In order for him to return to our home he must be able to do the following: (make the list). If he cannot do these things my Dad will need to be placed. Call me with any questions. your name.
If, 10 days in, Dad is not making progress you will know this. That is the time to recontact the social worker. She or he is your touchstone; you are VERY unlikely to see another care conference. They don't have them often. When my bro was in I assumed weekly. We had one in the 28 days he was in. They do it by law. You won't see it again. So you have to be there and on them every second. You must be strong. No argument. Stick with "It seems very unlikely he can return home."
My brother's 28 days was paid by his medicare and his supplemental completely. They "bought him more time" when PT was done by claiming need for wound care. Doctor didn't want him leaving before a one month repeat MRI.
Keep on them.
But more than that, you and your Mom must level now with one another about what you can do for him at home and whether he needs placement. Then must let him know. Whatever way is best. The therapeutic lie of "you need more therapy and time before we can take you home" OR the truth "We can't do the care at home any more and couldn't be more sorry. Expect rage, tears, depression. Who would NOT have those things in these circumstances.
Good luck. A day at a time. Do not let them bully you into care you KNOW you two cannot accomplish.
Hope you will update us.
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lealonnie1 Oct 8, 2019
The SNF my dad was at for rehab was more than happy to KEEP him in their long term care section when he stopped making progress. Same went for the SNF mother was at this past May. In fact, the social worker calls me monthly to see how she's doing and if she's ready to move there yet. They will even help me with Medicaid application.
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Hi Feeling Lost
i have been reading through your thread seeing if there was anything I might add that would be of any help.

When you see the therapist ask what they have as dad’s goals and where he is on those.
Depending on the condition of the patient, sometimes just sitting up in his chair can be considered therapy. I think your idea of having a list to discuss with the therapist is a good one.

You mentioned a financial advisor and Medicaid. It’s important that your mother, as the community spouse, is protected. Each state has slightly different rules for Medicaid but it is important that the person who helps you with Medicaid is well versed in your states laws. It’s often recommended that you see a certified elder attorney with experience in Medicaid.
Be very careful of how you sign any paperwork. It’s best if you don’t.
Are you the DPOA for your parents? That’s another thing to check on with the attorney.

Let us know how your dad is doing.
Your parents are fortunate to have you.
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feelinglost8 Oct 9, 2019
Thanks so much for reading through all this and sharing with me. I appreciate your kind words so much.

The financial advisor is helping my mother get in touch with an attorney that he's coordinated with for years.

I know what POA is but I don't know what DPOA is, or at least I can't think of it right now. Anyway, no, I'm not. And my mother isn't POA for my father, because he's been unwilling to take that step, despite telling everyone in medical situations "my wife can sign for me." The financial advisor they have has also talked to my mother about how to talk to my father about signing one.
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Dear Lost, no you aren’t over-reacting, it’s a difficult situation and you can’t see your way through it. The ‘point of the meeting’ is probably that it was a requirement for them to hold it, even if from your point of view it didn’t achieve anything except to confuse you more.

But you need to give us more information. How old are you, your mother and your father? Are there any other relatives closely involved in this? How is your father’s mental health – if they ‘talked around him’, were they assuming that he wasn’t mentally competent? Same questions about your mother – are you dealing with dementia in either parent, or simply with father’s difficulty in walking?

There is lots of experience here, and you can also just vent if that’s what you want to do, but more information will give you more help. Best wishes, and keep calm while you learn more.
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feelinglost8 Oct 8, 2019
Thanks, Margaret. I'm sorry I didn't even think to give that further information! My father is 71, my mother is 65, and I'm 37. I honestly don't know about his mental health. The nursing home has him marked as having short-term memory issues and a speech therapist (I think) keeps testing his memory. But nothing has been diagnosed. However, he's there because of a burst compression fracture in his L4 vertebrae and, while doing MRIs and CTs for that, they found both degenerative arthritis in his spine and fluid on his brain and think it may be NPH. But they can't test for that until his back heals more. So there are follow-ups with a neurosurgeon at the end of the month. What I've researched about NPH, though, is that it's basically a form of dementia... eventually. After problems walking and with incontinence issues. And a hospitalist said the L4 fracture will cause lasting neurological damage and more trouble with mobility.

So... maybe we're being naive in thinking he can come home? A different hospitalist said he could but...
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Thanks, I'm sorry, I realise worrying about that too probably just muddies the waters even more (hugs).

The point being, though, that in the absence of any confirmation that your father cannot make decisions, the person who decides whether he is discharged home or to a short term or longer term facility is him. So the person you and your mother need to be honest with when it comes to discussing the care plan, and how it's to be delivered without risk or harm to anyone, is... him again.

The ?NPH and the short-term memory issues and the repeat testing etc - with everything that's been going on (his back injury, possible pain relief in there somewhere too?) I think it's probably best to take deep breaths and wait. Don't forget that the fracture will have caused a heck of a mess in relevant areas, and that common types of pain relief can also affect mood and brain function, so that trying to assess him at the moment must be a bit like trying to find out if there's a nail in a burst water main.

Going from Day 1 to now, would you say he's made continuous progress in rehab, more or less, allowing for off days?

Does he want to return home is your key question. If so, your next questions will be:

When?
With what support?
With what equipment?
With what plan going forward?

You and your mother, with your father on board too once you've explained it to him, must insist that the home is assessed and your father's needs are assessed before anyone will sign any discharge paper.

You and your mother and your father are all at risk if your father depends on manual handling and the family has neither the training nor the equipment nor the support to do it. It sounds as though you have all been "managing" somehow, and you're right - that's how the fall happened.

Maybe you are panicking, a bit. Who wouldn't?! That's okay. But things do not have to be how they were before, and the best way to make sure of that is to be honest to the point of blunt about the practicalities. All kinds of difficulties can be overcome; people with all kinds of disabilities not only live at home, but cope *alone* at home. If your father wants to go home that's fine, but it won't happen and it won't go well unless everyone faces up to the realities of his needs.
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feelinglost8 Oct 8, 2019
Getting my father to talk about any of this stuff is nearly impossible, and my mother says it's always been impossible. So thank you for the questions to use as prompts and I'll try to get us to talk honestly about this. I know we need to.

Every time he's had a medical issue (heart attack, bladder tumors, stamina and mobility issues, his hand) we've said "why didn't you say?" and he's said "I didn't want to admit to getting old" so he's not really one for facing reality.

Even the day he fell, he'd been unstable that day and we asked him to let us know when he was getting up. He "wanted to prove that he was still capable" and got up on his own, while we weren't in the room, and fell.

A speech therapist asked him a couple days after he was admitted to the SNF if he thought he could get up and go to the bathroom on his own. He said yes. She said no, and that they'd be watching for 'impulsivity' but... he behaves there. I'm worried he wouldn't do that here, because he hasn't always when we've worried and asked. He's resented us for it.
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One other point to be made here: while rehab in a nursing home may be paid for by Medicare and supplemental insurance, long term care is not paid by Medicare and may not be paid for by insurance either (depending on whether he has supplemental Medicare insurance or long-term care insurance, or both). So having him admitted to a nursing home as a long-term care patient requires money, unless he qualifies for Medicaid and the NH has a Medicaid bed. Medicaid requires not only financial need but a very high level of disability to qualify. Mobility issues alone probably won't qualify, as long as he's able to feed, wash, and toilet himself, and does not have severe cognitive decline. So the nursing home's decision whether to admit him as a long-term care patient may well hinge on financial considerations, not just medical ones. Unfortunately.
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lealonnie1 Oct 8, 2019
Good point Carla.
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