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.
Let me add that there was another patient there whom we befriended. A recent amputee of his leg, the SNF was ready to boot him out and he DIDN'T EVEN HAVE HIS PROSTETHIC YET!
Please call the SNF, tell them your fears, and ask who you should talk to about them. Most of these people are very empathetic and will do their best to guide you through this difficult time.
Best wishes to you and your dad!
Boy, do your parents have a good supplimental if its going to pick up what Medicare doesn't pay. Medicare pays 1 to 20 days 100%, 21 t0 100, 50%. So his supplimental is picking up the other 50%.
Care meetings are basically them tell you what they have been doing and what they plan to do. They leave no time for questions.
Medicare determines when a person has reached a "plateau" and needs to be discharged and the supplimental goes along with the findings.
I would make a list of questions. Then ask for a sit down with the DON (Director of Nursing) or the Social Worker. Explain that if Dad does not improve enough to do for himself that he will need to be evaluated for LTC. That there is no way you or Mom can care for him. And, if you can't afford private pay passed the 100 days tell them. I would consider Medicaid even if Mom and Dad have a little saved. Mom would be considered a Community spouse with assets split. Dads split would be spent down. They can't leave Mom impoverished, (more to this so u will need to talk to Medicaid. For me, I would do the application not depend on the facility)
You can call your Office of Aging to see what kind of help they can provide.
But the thing was, he wasn't even able to walk. The man helping mom get him into the truck, had to go get more help. When she got him home, he could not take one step, not even using his walker. She had to physically move each foot (one being a prosthetic leg) forward, and then lift each foot onto the steps at the back porch (less steps than going up basement steps). They are both 74 yrs. old. She was underneath him, pushing with her body while moving his feet. Can you imagine! It was awful. But see she said insurance dictates when someone is ready to go home from nursing home. He is there again right now, after another fall and not being able to walk. It's a nightmare! I feel your pain feelinglost8.
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.
Do ask all the questions that you have. You are the "customer" and you need to know. As you find solutions to specific problems one at a time, you will begin to feel in better control. It is overwhelming to guess about everything at once without any concrete answers.
And my mom and I both felt like we had a tiny bit of control after we talked to her, and we're going to talk to more people. So thanks for reinforcing that this morning!
When a resident is in rehab, the rehab team meets once a week and discusses the progress of each resident receiving rehab. If the resident is progressing then the rehab will continue another week and then it is reviewed again. When a resident is going to be taken off rehab Medicare only requires a 48 advanced hours notice be given. Most communities give you more time than that. However, if you feel your loved one could benefit from more therapy you can appeal the discharge. The staff should automatically ask you when they are planning to discharge your loved one if you want to appeal. This is a quick appeal process and is done within 48 hours. I have had many clients win this appeal and receive more time in therapy. The average stay for a resident in rehab under Medicare is around 20 days. When the determination is made to discharge a resident from therapy they are required to have a discharge planning meeting.
Note: Under Medicare guidelines just because someone is not progressing does not mean they automatically get discharged from therapy. As long as the resident requires skilled care (under Medicare's definition of skilled care) then the resident should not be discharged. If you need help with getting additional therapy you should call your local Long-Term Care Ombudsman Office for assistance. They are the Federal Advocates for residents in long-term care. There is no charge for them to get involved and help.
If the community is going to discharge your loved one home then you can ask for a therapist to do a home evaluation to ensure your home is equipped and a safe environment for you loved one to return too.
If your loved one is unable to go home and needs long-term care then the social worker at the community should help you find an appropriate placement whether in that community or help you transfer to another community.
Ask all your questions and let the home know any concerns you have with your loved one going home. They can set up all kinds of resources for you including home health.
I hope I answered all your questions, if not re-post and I will respond.
Good luck on your journey and let us know how everything turns out.
I learned more from you than I have anyone in that NH, so thank you.
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.
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.
All I can suggest, is do not be afraid to ask questions until you get a satisfactory answer. It seems that you and your mother may not be able to handle taking care of your Dad. I would suggest looking for a Long Term Care
Facility. You will need to pay for his stay after his rehab is done. What usually happens is your parents will pay from their personal savings monthly for his care, and if the money runs out, then apply for Medicaid. There is more to it then what I just stated. You will need to talk to the Office Mgr of the Facility to find out how it all works.
Good luck. I feel your fear. It definately took it's toll on me and I had to fight for everything to make sure that my Mother was well cared for. They even dropped her once she was in their care and she also had numerous falls while under their care and this was a decent Facility. They are always short staffed. Once he is in a Nursing Facility the best thing you can do is visit on a regular basis to check on him. Good luck.
So... I think that's made my mother settle on calling everyone on the list they gave us until she gets answers to her questions!
Yes, have a meeting without your parents. Clear the air. Voice your concerns. Be FIRM about the boundaries that you will be following. It is totally reasonable that he has to be independent IF he is to come back home.
We also have to complain about an awful speech therapist who was in today and went on this long, convoluted tangent about when to take pain meds and when not to, whole paragraphs about how trying Tylenol first is good and how the more powerful stuff (he's been prescribed Oxycodone) is better saved for when it's a 6 or higher on the pain scale... despite not having access to what his doctors actually said, which was to take them because they will help him heal and help him do better in physical therapy.
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.
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.
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.
She was able to live at home until the end, but she needed a lift chair as well as the walker, and she needed someone to help with meals and other necessities at home. The last few years, she needed a wheelchair to attend medical appointments or go to the library or a restaurant - she could not walk very far even with the walker, and uneven pavement would trip her up. We needed to have a ramp installed because she could not walk even a few steps to come in the door.
Yes, it places a big burden on the family members providing the care. It's doable if the family is able and willing to provide that much help. That's the worst case scenario though. Maybe your father will improve and it won't come down to the hard decision about his future.
They are training my father with a walker, but the contracture in his hand makes it hard for him to grip anything, and we were talking about getting a wheelchair for when he had somewhere to go, at least.
A lot of his mobility issues seem to stem from, as a neurologist said in March, from having two sets of fused vertebrae in his neck (from a car accident in 2000). A lot of people ask if he's had a stroke because his left leg drags a bit behind, his left arm is curled in, his left shoulder is a bit lower than the right - on good days, the contracture in his left hand, and droopiness on the left side of his face (he had Bell's Palsy in 2007) but... nobody has seen any medical, definitive signs of a stroke.
After his heart attack and bladder cancer in 2016, he's kind of... just sat and quit... just about everything. In a way, I don't blame him at all. In a way, I wish he'd have fought and still be fighting harder.
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.
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.
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
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.
First, though: your father shows no sign of cognitive decline, dementia, any mental deficits at all, is that correct?
The nursing home marked him as having short-term memory issues at admission and a therapist seems to regularly test his memory. So... maybe some signs? I don't know. Probably.
And he has a pending possible diagnosis of NPH.
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.
So... maybe we're being naive in thinking he can come home? A different hospitalist said he could but...