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Me and my two brothers are the caregivers for my father who is 90. Before his stroke, he used a walker but was able to take part in daily activities for his age. He is in the SNF, currently can no longer speak or swallow (which think is temporary since he has shown signs of progress by making sounds that are increasingly complex and being able to take sips of water), and was not able to move his right arm and leg. In the last couple of weeks, he has managed by force of his own will to raise his right arm. He's fully cognizant of what's going on, he responds to questions with either a head nod or gesture which we understand from years of caring for him. His 100 days of covered Medicare are up, and the other two insurances will apparently not cover anything else, so they sent us a bill for room and board for the past week. They're no longer giving him physical therapy (which they were doing only 2x a week) and basically he's there taking up a bed. But they did have me and my brother come over for training on the PEG pump and ancient hoyer lift they had, which even the two nurses training us had trouble with. If we take him home, we can get him to his primary care physician (who is a physician at NYU Medical Center) and he can get him a prescription for a PEG tube pump and hoyer lift. I have already spoken to him and he told me that he wants to see and evaluate him himself. But I believe both measures (PEG and Hoyer) are temporary because my father has an extraordinary ability to bounce back. He loves to work and loves to do everything himself. The SNF is now billing my father directly. If they don't release him into our custody then we will not pay, and we will not authorize his being signed into Medicaid as he has Emblemhealth and Blue Cross along with Medicare. If they want to hold him hostage then they will have to agree not to be paid. Basically, our minds are made up, we want him back home, he wants to come back home, I'm sure they won't miss him because he is combative and has been known to slug nurses (accidentally of course). My question is this: How do we approach the nursing home, with security downstairs and on the floors, in this time of COVID? We'll sign any waiver, any hold harmless agreement so that the nursing home can be absolved of anything that happens. We want our father back. How?

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It sounds like your dad needs a lot of care at this point. He may improve but exactly how and when are unknowns.

Can you get home health services for him? Personally, I do not think I would be willing to take him home under these circumstances. Why are they no longer doing PT? Usually they only stop when the person is no longer making progress.

I would NOT rush into this. While the current situation may not be ideal, bringing him home will have it's own set of issues.
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Your father is not being held prisoner or 'hostage' at the SNF; you can check him out of there against medical advice if you want to. Him not being able to properly swallow is a HUGE problem, and being on a PEG feeding tube is another problem you'll have to deal with without medical training. Swallow issues lead to aspiration pneumonia in a New York minute which can cause death; I know; my mother was hospitalized in 2019 with that very thing. If I were you, I'd ask your dad's PCP to go into the SNF to evaluate him before you take him home. Taking on a medical liability of THIS magnitude is likely a whole lot more than you can handle. Even though your dad has recovered in the past & has the spunk to want to recover again doesn't necessarily mean he will be able to. He's never been this age before, and things tend to change dramatically after a stroke.

The SNF may not be ordering anymore PT for him as he may have made all the progress the therapists feel he is capable of making. Which is another thing to take into consideration for the future.

If he cannot afford to private pay for care at the SNF, and if they accept Medicaid, you can apply for it to cover his long term care. Medicare & the supplemental insurance only covers so much, and long term care is not one of the things they do cover, unfortunately. See an elder care attorney for the details; even if he's not staying in the SNF now, it may become necessary down the road and you'll need to line up all of your ducks for that possibility. Know what to expect and don't get blindsided.

Please think long and hard about what you're getting ready to do, and have caregivers lined up to come into your home to care for your dad once you do take him home. You can't do this alone, trust me on that.

Best of luck.
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USR359 Aug 2021
We're not doing anything alone I can guarantee you that. He's always had his team of doctors and specialists and was able to be taken to the hospital when the need arose. Read my other answer and you'll see why we are qualified to take this on, which won't be any different from what we've been doing before except for the PEG tube. I've been around medicine and the likes of doctors and nurses for my father (and deceased mom) for the better part of my life. Me and my brothers live with him in our apartment in the projects. So you see, we are very poor, and we're not about to pay any nursing home to turn our father into a vegetable. Because that's what the stay there amounts to. He's been in and out of hospitals but we've never seen anything approaching the negligence of the place he's in today.
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Yes, I can get home health services. We've had the Visiting Nurse Service come, we've had a physical therapist make house calls up to three times a week. They're no longer doing PT because he's exhausted his allotted 100 days, and his other insurances will not pay because he was placed there for rehab, not for long term care. He actually IS making progress, and I've seen this first hand. He is NOT allowed to sleep. He shows all the signs of sleep deprivation. His hair is matted and dirty so they're not bathing him properly. He's crying and asking us in gestures why are we not taking him home. We are aware of the issues. We've already gone through the wringer with my mom who passed away in 2018. Me and my brother are used to taking shifts, and my third brother helps out. We are well-prepared for what is to come, which will not be a picnic. It will be in some ways worse than before. And none of these decisions are being rushed. If it was just me, if I had my own family to take care of, then yes I might have to leave him in a nursing home, but not there. That is the nursing home where my uncle, my father's brother, died. He has told us in no uncertain terms, adamantly, that he never wanted to step foot in that place again. Nothing here is being rushed. We're already trained on PEG tube manual and pump feedings. We're familiar with lifts like the Hoyer and the Sara Steady, which would be better for my father since he can now operate both his arms. We are veterans of two patients who are our parents, and we're not giving up on them. The nursing home has.
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USR359 Aug 2021
When I said "They" I meant the nursing home.
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NHs have to make a "safe discharge". As long as you have done everything you need to do to care for Dad, I see no problem. The swallowing is serious though. He could aspirate his food and cause pneumonia. I would try to get their doctor to discharge him. If you do it AMA, they do not have to send u home with prescriptions or supplies. Dad is not in prison. You can tell them there is no money for him to stay and he is not applying for Medicaid.
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If you all can handle dad and his care being at home, bring him home.
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As far as the PEG unit the SNF needs to write up the script with his discharge papers.

Before my my moms release the orders were put in and the feeding pump company came and met me - they trained me - they showed me the pump and they got all the info on feed and flushing speeds from the dietician (so all could also be sent to the home health agency).
I believe with the peg you should qualify for home health nursing for at least a short amount of time?

The pump company sent in their representative into me and mom and took all my moms info - upon release I had already received the pump and one week supply of the food and then they send you the additional 30 days supply. It was all delivered by a special driver set up with their company and came at like 10pm at night). The company I used was Corum - they have branches set up within some CVS stores and that’s where the first deliveries of food and the pump/bags come from. My pole to hang it all I think came by ups.
Going forward within 30 days your fathers doctors will have to renew his scripts (so get those appointment and phone calls set up ASAP) but they have to write up the first set of orders to send you home with the start up of everything and have a company come in and meet with you to get that started. My mom did not go beyond her 100 days so we did come home with therapies and then moved onto outpatient (which is where her swallow studies were done) and the outpatient rehab continued to clear her to higher foods until her swallow was then fully cleared for all foods and has since eaten on her own without issue - her full swallow did take about 6 months to be cleared for full open diet without restrictions but she was slower than most. That was over 2 years ago.
I would think with swallowing issues they would have to send him home with speech (through home health) to oversee this but I’m not educated on that of the 100 days are up.
I would meet with the case worker and ask for the food/ peg company to be set up to come in and make sure you have all the calorie intake and water amounts with specifics from the dietician before you leave.
I will tell you some foods are not covered at all by Medicare - my mom was on a special one as she could not tolerate the standard one and Medicare does not cover hers but luckily her secondary covered it 100% (most secondary’s do not).
Have the case worker also set you up with a DME equipment provider and confirm with that company that any bed - commode - walkers or wheelchairs are included in these orders as well.
Tube feeds can be done without the pump but you have to know the rate at which you dad tolerates now. My mom had to be on a very slow feed and was never able to do bolus feeds. If you do not receive the pump in time you can do the bolus feeds but just make sure you get the feed rates he is dosing now - too much can make him sick and that can also make him aspirate.
At home he will need a bed that can be put at a 45 degree angle to do the feeds at - if he is on 20 hour feeds then they will go over night and he has to be in an upright 45 degree angle so he doesn’t aspirate as well.
sorry I am rambling - I am just remembering a lot of this as I type as my mom has been off of hers for 2 years. She does however still have a peg for fluids only as I learned after many UTIs (which can really hit them hard) that I will always have to supplement additional fluids as she just doesn’t drink enough - so she is on overnight water only while she sleeps.
Make sure you get the correct bed so that he is always as a 45 degree angle to tube feed. Wishing you the best.
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If you bring him home, make sure to have professional care helping him with his medical needs.
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I am confident that you and your brothers will be able to take better care of him than a nursing home. The familial part (that is missing in a nursing home) will help him improve greatly.
I'm not a doctor, but you have the familial part and the physical care part. I feel both are just as important to his recovery. The nursing home isn't going to try as hard as you and your brothers will.
A peg feeding tube is easy to operate. I did it for 3,4 months on my mom until she got strong and was approved to eat anything. It never clogged and I slipped her a little extra protein (Nestle) that was made for feeding tubes.
Godspeed!
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USR359 Aug 2021
Thanks for your most excellent reply!
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Tell the SNF that you want your father discharged to [home address]. Work with them and his primary care physician to make the correct preparations. There shouldn't be a problem. Has something happened to make you think there will be a problem?
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You love your Father, that is clear. You want to care for him yourself, I understand. It's a great plan. Call it Plan A.

If you have to change to Plan B at any time, it won't mean you don't love him. Remember that.

You mentioned believing the PEG feeding and Hoyer lift are temporary, that he will bounce back, he's worked hard & can still do so.

Recovering from stroke does take sheer will & stamina. Also much brain plasticity. If he doesn't recover it is not a failing on his part, not a weakness, or from lack of effort from him or you. Remember that too.

I admire your optimism & determination. Your Father sure has a great team in his corner.

But you have also described a 90 year old man, become hemiplegic & dysphagic by a stroke - which is a serious life threatening event that causes brain injury, often permanent brain injury. He is now a 'stroke survivor' which is already an achievement. How much recovery can be made will take time to discover & can be a road of heartbreak & acceptance as well as celebration.

I wish you & your family well. Be hopeful. But be realistic too.
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"Me and my brother are used to taking shifts, and my third brother helps out. "

So it is only the one brother who did the PEG and Hoyer training with you. It sounds like the other brother won't be doing as much. Could this become a problem?
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