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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.

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Good advice here. Your and your mother need to stop being scared and sit down together and decide what you and she actually want and need going forward. Not what your father needs and wants at your expense. He is in denial about his physical issues and getting old, he does not move at home, he has not faced needed to formalize arrangements like POA and all his denial and unrealistic behavior is holding you and your mother hostage. You do say if you have a job you go to but that is a factor if you are not at home. How will she manage him and want does she want to do. For better or worse does not mean chained to LO as caregiver. Your parents are not that old so planning needs to include how long money will last. Don’t expect rehab facility to figure it out for you. Or to consider anyone but the patient. You have to speak up. And while an appeal a discharge it is not always successful. My FIL was in rehab for 10 days. I made it clear that his living arrangement was IL where he supervised his very dementia impaired wife. He has become super confused from UTI and his own dementia. But he was discharged when he met PT goal of walking 75 feet with walker. He could do that but he could not get up out of chair in order to do that. He never got even close to his prior baseline and could not longer manage in IL. We elected not to pay out of pocket for more care. We had 24 hour sitters with MIL while he was in hospital so he went back to IL with caregivers for a couple of weeks til I moved them to memory care I am a nurse and a case manager and was still shocked by how fast he was discharged and by his actual condition at discharge.
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This WAS my late mother. She was in rehab unit of SNF and we expected her to then transition to the LTC unit of same SNF. The staff pulled a fast one on us (her also in the meeting) and said "Ma'am, you're too well to stay here." They were wrong - DEAD WRONG as less than 48 hours later she suffered a stroke there.

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!
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feelinglost8 Oct 2019
I'm so sorry you had that experience, and I hope it doesn't sound selfish to say I hope I can avoid it. It's kind of nerve-wracking because this place has their SNF short-term rooms mixed in with the LTC general nursing rooms (maybe this is the norm, I don't know?) so some of the room as so personalized and some are so generic. And I think only one room in my dad's hallway has changed to another resident/patient. So they either keep rehab patients a long time or it's a lot of LTC.
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I know it's scary, feelinglost, but don't panic. My father, nearly 93, has been in SNFs more times than I can remember since I moved him into an Assisted Living Facility near me 8 years ago because he was losing the ability to walk. He has been wheel chair bound for 7 years. The last time he went into an SNF was following respiratory arrest 6 months ago, resulting in him being sedated and on a ventilator for nearly a week. When he was moved to the SNF he could not even move at all! But, after 6 weeks of therapy, he was sent home able to care for himself (due to being wheelchair bound he does have help dressing, but that is nothing new). Then, for 4-6 weeks after returning home, he continued to get out patient physical and occupational therapy as he regained his strength. Everything was paid for by Medicare and Supplemental. He owed not one dime. And this, essentially has been the same scenario every time he has been in SNF. It has always been in the 6 week range. Your Dad will regain his strength. These places do a phenomenal job with their patients. The process is slow, but it happens. My Dad is now happy and healthy (for a 93 year old!).
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.
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feelinglost8 Oct 2019
Thank you so much for sharing you story! I was kind of fearing that it'll be SNFs over and over and over again, so you reassured me that that is possible and survivable. The nurses and aides at this SNF are generally so kind and patient, with our questions and worries. My dad complains some, but I suppose that's to be expected. My mom and I were actually planning to try and contact the Social Services person tomorrow with our questions... she got a message to Nursing after the meeting, so maybe she'd at least know who to go to and how to get them to contact us (the PT is three days late on returning a call).

Best wishes to you and your dad!
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Didn't read all the posts so sorry if I repeat.

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.
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I don’t have to say nothing..Peanuts56 said it all!! Thanks Peanuts!
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Hopefully, you will find encouragement each day that you figure a solution for a new problem. Don't try to do everything all by yourself or all at once. If your hospital has a Social Services Department, take advantage of their assistance and references for areas in which you need help or guidance.
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The meeting you attended is called a care planning meeting. The meeting has representatives of various departments involved with your father's care. It is mandated by Medicare and usually is held at scheduled intervals.(14 days, 30 days,60 days,90 days or prior to discharge). Medicare will pay for skilled nursing care for physical therapy as long as the individual is making progress towards the therapy goals. Once they reach their goals or they plateau (meaning that due to cognitive or other issues, no more progress can be made) the facility is obligated to discharge the person. Does that mean your Dad has to leave the facility? No, it means that Medicare is no longer financially responsible and private funds or Medicaid is responsible. The facility is responsible for holding a discharge planning meeting to arrange home care (visiting nurse,physical therapy, medical equipment). As a geriatric/ medical social worker, I would suggest that you and your Mother sit down and write a list of questions and concerns. I would then contact the social worker to arrange a meeting so that she/he can assist you. Share everything; hold back nothing! You two can arrange to meet privately so your Dad doesn't feel that he's on the spot. Good luck!
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CarrieLockhart Oct 2019
Wow, this is exactly what happened to my Dad back in June, after a fall and hip surgery. He was released just like that, Mom got 24 hour notice (I think).
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.
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I'm sorry you are going through this. It is a very confusing and overwhelming situation. I had worked as a rehab discharge planner for 15 years. Please talk to the discharge social worker and share your fears with her. You need to know what the alternate choices are should your dad be frailer then you and your mom are able to manage at home. If you want an independent specialist who will work with your personal situation, please consider hiring a Certified Aging Life Care Specialist. If you go to alca.com they will have a list of such professionals in your area. You do not need an elder law attorney to figure this situation out. In my area, if you do call one, they will just refer you to an Aging Life Care Specialist. These professionals charges half or less than what an attorney will charge you. I hope this helps. I have been a Certified Aging Life Care Specialist for the past 5 years. I would be glad to help you as much as I am able to and point you in the right direction at no charge.
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Sounds like this is your first time through this process and it is a little scary but don't panic. Rehab - also known as transitional care - is supposed to help your father get stronger and learn new ways of coping with whatever his current situation is after the fall. It's a day-by-day thing. Medicare pays as long as he makes progress. They have to meet with you weekly to give you the status of his progress. The social services coordinator is there to ensure that your father has the helps he needs to continue to live independently. If they feel he needs to be in assisted living, they will make that recommendation. More likely, they will recommend home PT/OT and possibly outpatient PT/OT after that. It is worthwhile for your to attend his PT/OT in the nursing home so you can monitor his progress and encourage him participating and getting stronger. You may be surprised at the progress. You'll need to approach this as a team effort between your mother and you. In the long term, you will need a plan for when you and your mother can no longer take care of him, but it sounds like you have time to visit places and ask questions until you find something agreeable to everyone. I always wanted my father in these meetings but you can also meet privately with the social services coordinator with your concerns and to understand this process better. You probably will go through it a couple of times.
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Invisible Oct 2019
I want to add that our third time through the social services person recommended some local non-profits that can help you find longer term care for your parent. I am not talking about a telephone service but a service where the person works with you to find, tour, interview and advocate for you. They are wonderful because they help you identify your needs and cull down the lists of places so you don't get overwhelmed. Your father's needs will change but your preferences may not.
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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 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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You are not at all awful for asking these excellent questions. Medicare generally pays for rehab for a fixed amount of time as long as a person is still making progress. If your father needs continued care after his official "rehab" is done, you will probably need to pay out of pocket until, or if, you can make other arrangements. You should begin researching home health care in your area in the event your father is sent home and still needs more care than you and your mother are able to provide yourselves.
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.
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feelinglost8 Oct 2019
Thanks. You offered the same advice that a nursing coordinator gave my mom last night when my mom apologized for complaining, she said that it wasn't complaining that it was caring and that it's important everyone have constant communication with each other.

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!
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It seems like his rehab is working with him to try to get him strong enough to go home. This is good. Make sure they continue to do that. When this happened to my aunt rehab and her independent living facility said she couldn't be released without having a caregiver(s) lined up to be with her 24/7. We had to prove that we had made arrangements to care for her. She couldn't live alone. The alternative would have been to put her in assisted living or nursing home. This is a tough time. If you and your mother can't care for him, you may have to make arrangements for a caregiver or a home.
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feelinglost8 Oct 2019
Someone did mention 24/7 assistance to us, as a possibility, and I think that scared us more than anything. Are caregivers like that expensive (someone told my mother than home health will bankrupt a person faster than NHs and Medicaid & that NHs could be kinder for my dad and for her)?
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The meeting you are describing is called a "Care Plan Meeting", they are required in all SNF's that take Medicare / Medicaid residents. These meetings happen every three months for as long as the resident remains in the community. The purpose of the Care Plan Meeting to discuss how the resident is progressing, go over any concerns from the staff as well as the resident and their family and to come up with an plan of care for the resident for the next three months.

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.
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feelinglost8 Oct 2019
That's so incredibly helpful! Especially about the "not progressing" not automatically being grounds for discharge... I was wondering if the nature of my father's injury, that he's not a candidate for surgery, that it's all about building muscle to keep bone in place would be enough to keep him there as long as possible. It's definitely something I'll be sure to bring up when they talk about discharge, and before. And that also gives me some relief that the appeals are usually granted and stays are extended.

I learned more from you than I have anyone in that NH, so thank you.
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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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Well, lesson one if not mentioned further down is that the meetings are required so that's why they have them; they will be happy to keep your dad so long as the care is covered so it's not likely he'll be sprung earlier I suspect. Especially if they have empty beds. You should touch base with your local area agency on aging and get linked to the long term care ombudsman office if you have one as they can explain everything and your and his rights far better. It's my understanding even if they handed you that 48 hr bs, that you can appeal...but there is a way to do that.
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feelinglost8 Oct 2019
I hope you're right that they'll keep him as long as his care is covered because it's a certain way of getting paid. He won't exercise and move and work at home, he's proven that before, but he does work in therapy and rehab settings so (fingers crossed) that stays true this time. Thanks for the advice on the local area on agency too.
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I've been through this twice with my 86yo mother. Sounds like your dad broke a hip (?). My mother broke a hip last April and had to go to short term care (STC) at a rehab nursing home. Medicare will pay 100% up to 20 days for short term care. During this time, the rehab folks will work on getting your dad moving again. You had the meeting with their staff so you know what they are doing and the time frame they had to work with. After my mother broke her hip and was in STC for 20 days, the rehab staff thought she would benefit from a longer stay in short term care. So for that period over the 20 days, which was another 2 weeks, we (family) had to pay a $181 a day as a deductible for that time. So we received a bill the following month for ~$2800. Other than the deductible, everything else was be covered by Medicare for those additional two weeks. Word of advice: during this time you need to familiarize yourself with the cost of care for your father (and mother) should they need to go into long term care/nursing home permanently. Best to you!
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feelinglost8 Oct 2019
Thanks for sharing with me, it really helps. My dad actually has a burst compression fracture in a vertebrae in his spine. He's not a candidate for surgery, which would fix it faster, and the goal is to make sure muscle encases the pieces of bone so they don't puncture his spinal column. Luckily, he's got a supplemental insurance plan that will cover what Medicare doesn't. And I hope that means he'll get more time there to be the best he can be.
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When they Mention That, Time to Consider making Arrangements to Put Him in a Nursing facility or Pay out of Pocket for a Care Giver...Only Sad Solution...
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My mom went for rehab in nursing homes four times in four years after hospitalizations. The first time she came home in under two months. The next she was only in for a few days before she went delirious from an untreated UTI and was rushed to a hospital where they also found a stage 4 bedsore. Needless to say I sent her to a different NH though that one was a 5 star Medicare rated facility. In the other NHs she was in for under 3 months. The last NH was very good. After all the calamity of dealing with hundreds of people, some very incompetent in the first 2 NHs, I took her home where she finally ended her days with a very good hospice team. They always gave me several days notice before discharging her so I could get a hospital bed, etc. For us the average stay for mom in rehab was under 3 mos. but it really depends on the progress of the rehab. I wish you all the best.
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feelinglost8 Oct 2019
Thanks for sharing your experience with me and for your good wishes. My dad is actually prone to UTIs that end up making him, as his urologist said, "loopy" so we actually did panic about that just the other day when we visited and he seemed out of sorts. But he seems fine now. It's good to know from your experiences, though, that it's not always just a conveyor belt of doing all the things as fast as possible and getting people out and home or out and into LTC.
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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 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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I can certainly understand your confusion and anxiety. I lived it myself when placing my Mother in a nursing home. They have care meetings because they are required to have them. Many of the meetings I attended for my Mother's care were very frustrating, because the staff didn't want to hear my concerns nor answer many questions.

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.
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feelinglost8 Oct 2019
Thanks so much for sharing your experience. Not wanting to hear concerns or ask questions is very much how our meeting went. Though my mother did bring up finding my father up in his wheelchair without his back brace on once. The Social Services person wrote that down and today a Nursing Coordinator called and reassured my mother that it won't happen again, that she's going to put a sign on his door that his brace must be on if he's up, that she's going to put a note in the system so that any time a nurse logs a medication she'll see a reminder to check that his brace is on. She even took the time to explain why the brace is so important, in clearer ways than anyone at the hospital did. When my mother apologized for complaining, she told her that it's not complaining, it's caring and that she should call any time with any questions or concerns.

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!
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You could voice your concerns to the people at the NH. When they said does someone hold his hand around the house, you could have said "Excuse me, are you suggesting that one of needs to be available 24/7 to do this? If so, that is just not a reasonable expectation."

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.
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feelinglost8 Oct 2019
We do plan to try and connect with his physical therapist tomorrow, to see what he thinks is both possible and good enough and to tell him what we believe we can handle.

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.
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If there's money to be made, they'll find a way for him to stay
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feelinglost8 Oct 2019
Ha! That actually made me laugh out loud... which is both a sad commentary on the way this world works and a good thing because we all need to laugh. So thanks for that, I've actually kind of been hoping that they'll get the memo about his supplemental covering 100% of what Medicare doesn't after day 20 and be like "oh look, guaranteed money... let's keep him!"
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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 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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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 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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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 2019
Good point Carla.
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feelinglost - the fact that your father may have NPH is actually a hopeful sign. He actually seems young to be having such severe mobility issues just from aging, although the degenerative spinal issues are surely playing a role in that. The good news about NPH is that relieving the pressure with a shunt can bring significant improvement, which from your research you probably know. The bad news is that it doesn't always work. My mother had NPH and had a shunt implanted, and it didn't help her much at all. She walked with a walker for the last several years of her life. She continued to fall on a regular basis, even with the walker. Several times 911 had to be called to help her up, and sometimes they took her to the hospital if she was injured or if they thought that the fall was related to a deeper problem (she was anemic and it caused her to be faint at times).

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.
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feelinglost8 Oct 2019
Thanks for sharing your story with NPH. Not much of my research was so personal so I do appreciate that so very much.

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.
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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 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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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 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, there is an elephant in your room.

First, though: your father shows no sign of cognitive decline, dementia, any mental deficits at all, is that correct?
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feelinglost8 Oct 2019
There is an elephant in my room, I know.

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.
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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 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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