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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.

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Did the therapist tell Mom directly that more PT will not help her walk?

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.
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If the therapists believe she has peaked in her ability to improve, they won't keep going no matter what amount of money you offer them (in the U.S.) because of how they get paid (through insurance billing codes) and they probably don't have any way to bill for it privately, don't have the facility and don't have liability insurance. We tried this with my own MIL and once she stopped improving (or refused to cooperate) they were done. Period. If they refuse your mom, I think she is done with rehab as well because it would be unethical to continue, and you are not the one who decides her medical prognosis. Should she have an appendectomy just because you think it will "help" her? Of course not. The same is true in physical therapy. Healthcare differs by state so maybe you will find a loophole and if you do please share it with the rest of us. Thanks!
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I think I would tell mom "I'm talking to the doctor about that" and " the doctor is talking to thectherapists, mom".
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So, I know that you would like to help your mom. I understand this. You say that you want to give her hope. Does she want hope or has she given up? Do you think that you want hope more for yourself than your mom?

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?
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Riverdale Jun 2021
She asks me to pursue this. I have accepted the reality. A director at the facility told me there would be cost to have them work with her that I would be responsible for. They did try PT and billed Medicare and determined she was not likely to physically support herself so of course it could not continue.She feels she has become somewhat stronger but I doubt she is strong enough. While I would love to have her be able to walk I accept the reality.
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There is a certain law of diminishing returns, it's true. More is not necessarily better. Are the PTs working with your mother at all at this point?

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.
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There could well be ethical concerns here; you might ask them about that. If they truly assess that PT would be of no help, and could possibly harm a patient there are certain places they "cannot go". That is my only thought, because as is a more "norm" in all things USA, you can follow the money, and once people are willing to PAY a lot of ethics go out the window. I would ask them to discuss honestly with you, and tell them all you told us.
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I’ve worked with PT’s before and never knew any of them to work for essentially cash. They bill insurance, be it private or Medicare, and patient is billed for what portion isn’t covered through whatever billing service is used. PT’s all want to be able to document progress, and aren’t likely to work long on what can’t be changed or helped. I’d hope you can end this discussion with your mom, blame the medical profession, and move on
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If she is keen to move then IMHO any movement is beneficial, even if it never leads to any improvement. Anybody who has had PT in the home knows that the therapist comes in for one session every week or two and you are left to do your "homework" in between, so it seems to me that you don't necessarily need a licensed physical therapist to continue to work with your mother. Think outside the box, a student with an interest in nursing, personal training or kinesiology who has half a brain should be able to follow guidelines and simple exercises.
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Riverdale,

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.
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Riverdale Jun 2021
I will look into that. There was just another Covid case and the facility went back into lockdown but they are easing restrictions. I just am not sure I can bring a total outsider in but maybe they might have some answers to your suggestions.
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My husband with vascular dementia, who had been walking very slowly and falling a lot, developed aspiration pneumonia, which led to sepsis, and septic shock. He almost died twice during that time, and by the time he got out of the hospital, he was completely bedridden, and under hospice care.
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.
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Riverdale Jun 2021
Thank you. She does do some leg lifts and arm exercises. She was not expected to survive. She was on oxygen for around two months. As much as she has avoided many medical interventions she does love therapy. I will have to be a dog without a bone trying to get them to discuss this with me. Even if it proves pointless I feel I have to try rather than totally avoid the subject which would be much easier for me.
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I could've written your post. My mom had back surgery that rendered her right leg useless. She was in the hospital and rehabs for 5 months, it was supposed to be a relatively simple outpatient procedure, done by a neurosurgeon. PT during all that time could not get her walking, came home to home health care and they could not help. My mom still refused to give up. Now she's in the nursing home because she ran out of money to pay for 24/7 in home care. She has been unable to use her leg for 7 years.

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.
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Get her one of those bike pedal things you can use while sitting in a chair. If she does that daily for a month, then consider paying for a few sessions with a personal trainer who specializes in older people to help build up her overall strength.

It's probably safe to say she won't progress past the bike thing, and you'll only be out about $40.
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I don’t know if your mom could do the exercises, but maybe she could follow Chair Yoga on YouTube?

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?
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I paid for private PT for my dad while at home (after the agency had released him). I just flat out asked the therapist if she worked "on the side for cash". It was $80/session for a fully trained physical therapist and $60 for an assistant therapist. Like your mom, dad loved having the therapy so I felt it was worth it and they did get him walking pretty well. Now, however, he still wants it but he is so unstable and weak that I'm not paying for it any more. I did get him the little pedal bike thing. The memory care facility has morning chair exercise class and yesterday we took him to it. He couldn't follow the directions at all. I think a Youtube video might be a good idea for your mom to do some chair exercises and yoga.
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My sister decided after several cycles of PT that she would work with mom during her visits. Our last PT left sheets of exercises to be practiced so the sitter could repeat them also.

At least work on her upper body and chair exercises for her legs if she willing.
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1st of all - - most seniors aren't motivated or interested in physical therapy. If she is, I'd do what I could to get it for her.

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/
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If your current provider is refusing additional sessions there is nothing to stop you using a second one to do so, you are not restricted to how many companies you can use if you are paying. However I would not do so until the first one had explained fully why additional physio will not help your mother. Maybe the damage they can affect is too severe for any possibility of improvement? This is something they need to discuss with her.
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.
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Even the simplest of exercises can assist with maintaining/improving strength and flexibility, along with aiding proper circulation. And while your mother may realistically never walk on her own again, her optimism is something that shouldn't be ignored. It may give her a boost to think that she is making some kind of progress, even if it's only negligible.

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.
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One of the group activities at my mom's NH was exercise time, do they not offer anything at your mother's facility Riverdale?
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)
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well i would think that IF they refuse even if you have the monies to pay, not much you can do unless you hire a private person to do it. I am guessing there are issues with liability IF she would fall while trying to do the PT and depending on her weight and IF she hasn't been up for some time, it might take longer than you or her thinks to get her back mobile. And that might be what they are basing things on. IF she would fall, how many people is it going to take to get her back up, will she end up hurting herself more, etc. I am sure they have standards they have to go by and IF she can't do the PT or doesn't improve after a certain amount of time there is nothing more they can do. She might just have to face the facts that she isn't going to be doing any PT. Wishing you luck.
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Can you have them at least print out some exercises she can do at home?
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.
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I would listen to the professionals. I am sure they have a list of criteria they have to follow or an algorithm that they use to determine if PT is warranted or not.  It would be unethical for them to charge you for PT that they have determined is not beneficial in any way to your mothers specific condition.   If it will make you and / or your mom feel better, ask them for a list of stretches and exercises that you can have her do just to keep her moving.  Tell your mom that PT gave her a list of movements to do and they will come in and evaluate her in several months.  Maybe mom won't do the exercises, maybe mom will forget that someone is supposed to evaluate her..who knows.
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If she's had PT before and they don't think it will help then what I would do is ask the PT and absorb what exercises they did before with your mom and you and your mom do them.
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.
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Seems insurance companies limit the number of weeks for PT. Have you considered hiring a trainer at your local gum?
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There may be more going on here with the PT than an issue with money. If they are fully booked, they really need to put the needs of those who will benefit from the therapy above the wishful thinking of someone who wants "magic" to happen. The PTs must also bear in mind the damage your mother could do to them, professionaly, when she tells everyone that the PTs charged ever so much money and didn't do a thing for her.

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.
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If the facility let's you bring in outside help, try to find a paid "companion" who is either a gym or fitness trainer. often local gyms have independent trainers they could hook you up with.
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Usually, there are some kind of open-to-everyone seated exercise sessions. Does your mother's SNF offer them. They are, in effect, physical therapy sessions and, if offered, are included in the $9k you already pay.

I assume her weight is what makes PT pointless.
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PattyLuna Jun 2021
She CAN lose weight nutritiously without exercise. I’m living proof. I CANNOT exercise traditionally due to several issues…MS, FIBROMYALGIA, VASCULAR EDS, POTS. Yet I’m not any meds for any of these. Why? Because I am on a science based nutrition protocol. I’m a Health Coach and also the sole caretaker for my 82 years young Mother who is showing the signs of dementia which we are fighting tooth and nail with a combination of education, nutrition, love and faith (I just happen to be Buddhist of 33 years and my Mom is Catholic, getting along harmoniously🙏) . I’m absolutely positive that she would be soooo worse off if she were not on this health protocol now herself. She has lost toxic weight and inflammation without exercise and building beautiful muscle tone. I personally lost 60 pounds (50 of which with zero exercise). It CAN be done! 👍
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.
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Sounds like "they" are in a similar predicament, not knowing what to do/how to respond, and so they are using avoidance as a technique. Doesn't sound like that is an option for you with mom. I guess the good news is she wants to try. The bad of course being that the reality is it sounds like it will be a waste of funds...aside from potentially giving her some hope and maybe slow progress. It sounds like with her weight and health issues hiring an exercise coach would not work due to risks and their not being a PT. I wonder if you might speak with the director. Or if the person in charge of PT may be able to be paid for their time and efforts to work with someone to guide them through what is reasonable and safe for her to do. There also are some exercise classes for people to do in chairs...for instance for arthritis or chair yoga. Maybe even some on a DVD? That you could provide and she could do on her own?? Some days it feels like we are surrounded by rocks and hard places. Bless you for being there for her, and not giving up. But to your question....if they refuse regardless of your willingness to pay...I might dig up or request a copy of your "contract" or papers you signed and consult with an elder law attorney. I wonder too with your being sure money in their pockets if you suggest you will consider switching facilities, what would happen. Nursing home admins like to have full house$. Of course in the end it might come down to $$ and that this isn't a good use of yours/hers, as you say the $$ could run out. Best of luck.
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I agree with what another poster said that it sounds like maybe they are avoiding the issue. I can see where they would appreciate the money, but on the other hand the therapists' time is wasted.
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.
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Try another provider, if you are willing to pay, surely there is someone that will provide the service.
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