Constant dilemma. What would my position be if they flat out refuse regardless of my willingness to pay?

The reason why PT doesn't want to continue with your mother isn't because she's overweight or because PT can't be beneficial to her.
They're not continuing with her because they aren't interested in private-pay clients because they can't collect enough.
Whereas if it's insurance paying, especially Medicare or Medicaid, the sky's the limit on what they can charge for the service and insurance will pay it. Then they send a second bill to the patient for what insurance didn't "cover". This is why they don't want to deal with your mother who insurance isn't paying for. The same with a nursing home. They like to get the private cash-paying out of the way as fast as they can to make way for the real money - Medicaid.
When my father was in the nursing home on private pay the cost was ten thousand a month. For the first two months he was there Medicare and his secondary insurance was paying. The nursing home collected $80,000 which comes out to ten thousand a week.
If you want your mom to continue with PT, see if her doctor or maybe some other will order it. Once they find out insurance is paying, they will open mom back into PT with open arms.

This post and its answers have been very helpful. I'm 71 and my spouse is 68. I've had constant experience with resistance and non-communication with some of the staff on my spouse's PACE program (Program for All Inclusive Care of the Elderly) in my state. While the overall program is a Godsend in terms of comprehensive medical care for my spouse, a stroke survivor of normal weight for his height with many ongoing health issues, the PT segment depends largely on the interest and motivation of individual staffers. The head of PT in our program consistently refused to communicate with our outside and out-of-pocket PT for years and I have kept the records on that. The out of pocket expense was significant enough to be a medical tax deduction but we gladly paid it until the outside PT retired. Then, a PT staffer for the PACE program advocated successfully for a tendon-lengthening foot and heel surgery that has eliminated spouse's need for strong painkillers, i.e. Tramadol, and he is able to place weight on the foot without pain. When COVID hit, our PACE program allowed in home PT, but our advocate staffer left when (apparently) management over-scheduled the in home PT staff to the point where our advocate felt she could not do a good job and she left the PACE program. Many of the exercises she had my spouse do at home with me alongside, I did not feel safe doing with just me, because he has balance problems and if he isn't caught before losing his center of gravity, he's on the floor, with a high risk of head injury or other trauma. We've been thru that a few times on our own. We do stretching and resistance exercise but beyond a certain point I have to nag. I feel as if early on I transitioned from wife to caregiver, not to mention losing my ability to work and my freedom to leave the house for more than an hour without having a sitter come by. Despite the ruling of Jimmo vs. Sebelius, it's the availability of PT staff to deal with patients who may not be fit enough or motivated enough to accept and do PT, that may be a damper on the availability of PT services.

Riverdale, I am so happy you are having success!

Please check to see if the footstraps are adjustable. I was on a recumbent bike at my gym the other day and realized that the pedal straps could be adjusted. If not, perhaps the company can provide a larger strap.

I just wanted to update and thank all of you. I bought the foot pedaler. PT had tried it with her but not to the extent my husband and I did.

We braced it against a wall and made sure her wheelchair was locked. After much effort she was finally able to pedal on her own. This is the most movement her legs have had in 7 months. I am hoping it will continue. It requires her to be in her socks as the shoes she needs don't fit in the pedals. I will just have to be sure she spends some time in her socks and gets help with shoes when she wants to pedal herself out of the room.

It was so gratifying to see her able to move her legs. We positioned the table for her food and phone near her and also had all this placed within access to the TV.

I am somewhat annoyed PT could not have cared enough to figure this out but such can be life in a NH. I just hope this routine can continue. As I mentioned it took us at least 10 minutes of moving her legs ourselves before she could do it on her own. Thanks again for that suggestion.

Imho, there may be another reason as to why the physical therapy company is not returning your calls.

Ask her to start doing upper body (wheelchair) exercises to build up her arm strength and chest strength. If she complies with that and can hold herself up with her upper body, then PT would be worthwhile. It would at least give her something to shoot for.

Ask you family doctor
for auggestions.
maybe he can recommend some “exercises” that will help her where she is. Maybe something with balance and just overall better wellness. I know you don’t want her to lose hope but you want to be able to get some benefit if you pay for some sort of service. Good luck and wish you well.

My question is this. Where is this P.T. located? Part of the nursing home? What about seeking an opinion from an outside independent P.T.? You really need many more facts before you make a final judgment what to do. Have your doctors given input on this. Sometimes there is nothing that can be done via P.T. I am an example - tried and tried, nothing works so no more rehab.

Try another provider, if you are willing to pay, surely there is someone that will provide the service.

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.

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.

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.

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.

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.

Seems insurance companies limit the number of weeks for PT. Have you considered hiring a trainer at your local gum?

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.

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.

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.

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.

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)

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.

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.

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/

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.

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.

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?

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.

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.

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.

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.