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?
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.
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.
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.
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!
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.
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?