Just wondering if any of you wise people here can help me brainstorm. My mother is immobile in a wheelchair after a serious septic infection last November. She can ambulate with her feet but cannot even stand alone.
She thinks PT will help her. They do not. I have a call in to them to inquire what it would cost out of pocket for them to work with her more. They are not rushing to return my call even though I have clearly stated I understand this would be a cost we would pay for.
My mother has often had a lack of realism. I do feel though that I should try to help her until it may prove fruitless which is likely.
I realistically can only take this to a certain level as she is on private pay which is a little over 9,000 a month and the fund we are drawing from could run out depending on how long she lives.
While I want to give her a sense of hope I also have to factor her lifelong lack of reality. I have posted before that this has become my worst nightmare. She has been overweight for years. Oddly now she is losing some weight but not any large amount. I do not say "I told you so" even though I think that. Some previous calls to PT have gone unanswered but awhile back when I inquired about this they actually said not to waste the money. I will continue to pursue the cost issue. I guess I am wondering what my position would be if they flat out refuse regardless of my willingness to pay.
What you may need to do is take her to her doctor. Hopefully PT sent him their report. When u make the appointment, ask if they have the PT report if not ask if they can request it. Make sure they know why ur making the appointment. Then her doctor can review the report. He can then tell your Mom how he feels. No matter if Medicare pays or u private pay, they need a doctor's order to take Mom on as a Client.
If the doctor feels further PT will not help Mom, HE needs to tell her. Sit right down in front of her, look her in the eye and tell her that further PT will not help her walk. Then when she starts again you can say, "Mom the doctor sat there and said PT will not help. And without an order from him, PT cannot be ordered." There is nothing YOU personally can do.
What has the doctor told you about PT? Some people are helped by it and others aren’t a candidate for it.
I have always been told that physical therapy works best when combined with occupational therapy. What therapy has she had in the past?
If she were on our books, and she wanted to work at mobility, we certainly wouldn't tell her no however unrealistic it might be that she'll be leaping about like a young gazelle ever again. There are so many things she *might* be able to improve on, such as standing with a stand-aid, with or without a sling - that's certainly what springs to mind.
There could be a dozen reasons the PTs aren't getting back to you, not limited to their (slightly snotty, I have to say) attitude that they won't waste their time/you shouldn't waste your money; don't forget the Covid Chaos going on out there, for a start.
I think that I would check into a chair exercise instructor and a massage therapist to come in and "work " with mom.
Both could help build her strength and help her feel better.
They would probably be cheaper than paying a PR to entertain her desires.
The chair instructor could set daily goals that mom could reach on her own and a massage is just yummy.
I hope you find something that helps her feel like she is making the effort and she is being listened to.
He too had aspirations of walking again, and getting out of bed, but I knew realistically that was never going to happen, and it never did.
If it makes her feel better, maybe you can just try and do some simple leg exercises with her, either lying down, or while she's sitting in a chair. Wishing you and her the best.
She insisted for several years that she could walk if she had good enough therapy. My brother and I kept telling her that everyone had done all they could. I was very sad for her and it broke my heart to keep telling her that. Therapy is very expensive if you pay for it out of pocket.
It's probably safe to say she won't progress past the bike thing, and you'll only be out about $40.
Maybe there are elderly wheelchair bound walking programs on there?
Since PT wouldn’t be coming in daily anyway, maybe there is SOMETHING on there that she could do, “in between”? That way, she might just feel like she moved her body in some way?
At least work on her upper body and chair exercises for her legs if she willing.
2nd - - you need to contact Medicare for advice. The OLD standard was "improvement", but that changed in December 2013 with the Jimmo Settlement. Here are the critical words:
"...to maintain, or to prevent or slow further deterioration..."
Many health care providers either aren't up-to-date or refuse to acknowledge or apply the change. The end result is that more PT should be financially covered than actually is.
____________________
The Jimmo Settlement Agreement provides for the re-review of certain Medicare claims under clarified maintenance coverage standards for the SNF, HH, and OPT benefits, applicable when a patient has no restoration or improvement potential, but that patient requires skilled SNF, HH, or OPT services to maintain, or to prevent or slow further deterioration of, his or her clinical condition.
https://medicareadvocacy.org/medicare-info/improvement-standard/improvement-standard-update-cms-revises-medicare-policy/
It is unusual for a medical team you are offering to pay privately to refuse more business, sometimes we just have to accept they know best and our wishes are beyond what is possible, we have to have realistic goals.
They are under no obligation to provide additional treatment in the same way you are under no obligation to use them, but they are under an obligation to provide reasoning in an understandable form, and to work with someone to accept achievable goals.
By the way your "I told you so" attitude would be a real turn off, as they would find the conflict between patient and daughter detrimental to their work. You may not verbalise it, but it is hard to disguise that you have the opinion you have it. If you can I would work on not pre-judging and holding your own opinion and stick with factual questioning and getting an explanation from your mother's physios. If more can be done - according to a second opinion - then pay to have it done for an agreed period, if it can't and mother is seriously unrealistic then she needs to have why explained to her and a plan and goals for what she is going to do in the future put in place.
I would ask for her to at least be trained in whatever stretching, flexing or other simple maneuvers she can safely perform on her own, with minimal or no medical supervision.
Unfortunately the group was poorly attended, I'm not sure if that was because it was pretty lame or if folks were just not very motivated (IMO if it was better planned and more fun it may have been be more appealing)
Tell mom that they have had to cut back on "in house" rehab unless it is medically necessary (blame COVID!) and that after 4 weeks of doing the print out they can reevaluate. If you have a friend that mom dies not know have your friend come by and "evaluate" mom.
OR
If in your area the Y is open or your local Park District get her involved in a program there. Swimming might be great. Many do "chair yoga" and other programs for physically challenged individuals.
Some insurance programs will also cover some programs (think it is called Silver Sneakers)
And check your local Senior Center they may have programs as well.
And with any of these if there is improvement, GREAT. If not then it has probably cost less than PT.
I did thst with my 97 yr old Dad.
Even if ya'll don't do the one where she stands up, there are many exercises she can do from the chair, wheelchair and her bed,, using her feet, arms and legs.
Let her start with these and once you can see a definite improvement, ask PT again and if they still won't, go outside and hire a PT straight out to go visit your mom.
A better approach might be to ask if a PT could give you some lessons on exercises that your mother could do alone or with you that would help to strengthen her legs. Depending on what kind of damage occurred when she had sepsis there may be some small benefit to such exercises. If nerves were damaged so there is significantly reduced communication between her brain and her legs, there would be very limited benefit to additional strength, but it certainly wouldn't hurt.
I assume her weight is what makes PT pointless.
Feel free to reach out if you’d like to know more. I learn so much from this forum. Thank you so much for everyone’s advice. I (We) deeply appreciate it.
Patty
ez321System.net
p.s. If the body is riddled with toxins, no amount of exercise with “get rid” of organ surrounding visceral fat…subcutaneous fat that is more visible will also be extremely hard to dispel. You need to “get rid” of the toxins first or certain exercise could actually do more harm than good. Clean the inside and the outside will soon follow.
I was in a similar situation with my mom, who also has a lack of realism. We thought about continuing PT for her with her paying, but her therapists and doctor actually agreed, after I brought up that I didn't think it would help, that it was fruitless unless she opted for knee surgery.
She's had osteoarthritis for years and had never wanted to do any kind of weight-bearing exercises to support her joints and bones. She's never kept up with PT on her own that her osteo doc's PT gave her to do at home, and has always refused surgery from day one. She essentially, when living at her house, just sat around and watched tv all day. Now she is living with me and at the point of being 100% wheelchair bound, with barely able (thank God she still can) to do short transfers in and out of her chair. Her legs are bowed out due to her body compensating for no cartilage in both knees. Her docs and PT all told her that even though she was in pain, that was the worst thing she could have done was not do weight-bearing exercises years ago and to sit around all day. After her giving me a hard time about exercises, getting out and about, etc. I give up and just let her have her way. 😃
For her lack of realism, she mentions from time to time that she can't wait to walk on her own. When I tell her that will be possible with surgery, she gets angry with me and tells me I am being negative. She also thinks she will go back to her home to live one day, to which I tell her that will only be possible with an in-home aide.
For your mom, maybe you can come to a happy medium to where she feels she is doing something and getting some PT in. Exercises she can do on her own. What about seated exercises? They have those little peddle exercisers too that she could use while seated.