Reality of ongoing PT with my 90 year old mother and telling her the truth. Should I be honest with her?

My mother has refused PT for the past 21 months she's been in Memory Care, basically. Since she became wheelchair bound due to neuropathy. She was told 1000x that she would lose muscle mass if she refused PT and if she refused to move herself around in her wheelchair. And she has refused. She's fallen another 28x in Memory Care to add to the 40x she fell beforehand in Assisted Living. She's developed ulcers on her butt from refusing to move, that required wound care from Home Health and various different w/c cushions. She's developed a big toe wound from edema in her feet, also from refusing to move or to raise her legs. She weighs 200 lbs now.

I was asked to buy her a new adjustable bed bc it's taking 2 caregivers to get her up in the morning. She's lost core strength from refusal to do PT as well. She too will insist it wasn't offered, or she wasn't feeling well, or 100 other excuses she has in her bag of tricks.


The exacerbation of her condition has occurred due to her own decisions, not mine. I have raised heaven and earth in an effort to make her understand the consequences of her own actions. She makes poor decisions day in and day out and then complains about how hard her chosen life is.

We make sacrifices for the life we want or we sacrifice the life we want.

Your mother has made her choices and is living with the outcome, as is mine. These choices have nothing to do with us. They have everything to do with our mothers and their power or lack of power to deal with the truth and reality. We have no control over that.

I can pay for my mother to have PT until I'm flat broke and she STILL won't make the effort.

Soon she will go to live in Skilled Nursing and a Hoyer lift can be used to move her about, if need be. I don't feel guilty about that because I've done everything humanly possible for the woman the past 10 years she's lived here. I will continue to do my best for her, too, while she continues to put forth NO effort at all. Yes, it's sad she's made that decision, but it doesn't cause ME depression because I did not create her situation, she did. And living 94 long years of life on HER terms, that too.

Realize it's not your job to fix your mother. Just to love her as she is and accept her on her terms, and that her life is as she wants it to be. If not, she will make the required changes, to the best of her ability, as will my mother. In the meantime, it's THEIR lives. We have ours, and we need to move on with them.

Good luck

Riverdale
I apologize as I know this isn’t the question you asked. I thought it might be helpful to you nevertheless and wanted to clarify an incorrect notion I read on the forum from time to time about the circumstances under-which Medicare ceases to pay for therapy. Now what I’m going to post refers to services provided to a home bound patient and not a NH patient. I’m not familiar with what services are provided in a NH having not had that experience. But you might speak to your mothers doctor and ask for orders to be written to continue your moms therapy based on her declining without the therapy.

‘If you meet Medicare’s home health eligibility requirements, Medicare should cover your care regardless of whether your condition is temporary or chronic. Medicare covers skilled nursing and therapy services as long as they:

Help you maintain your ability to function

Help you regain function or improve

Or, prevent or slow the worsening of your condition

Providers and agencies may worry that Medicare will not cover skilled home care if you are no longer showing signs of improvement. However, Medicare should not deny your home care because your condition is chronic or unchanging, or when additional care will not improve your ability to function—as long as the care is medically necessary to maintain your condition or to prevent or slow deterioration.”

My own mother had OT for years at home to keep her arm operational. Medicare paid for every penny.

I have no idea how Medicare works when one is in the NH but to me it would be worth a conversation with your moms doctor. I’m sorry you and mom are going through this difficult time.

https://www.medicareinteractive.org/get-answers/medicare-covered-services/home-health-services/home-health-care-for-chronic-conditions

There is “fact”, there is “truth”, there is “reality”.

If HER reality is different from yours, no matter what the reason is, you really aren’t accomplishing anything by attempting to convince ce her that she has to believe what you believe.

You ask if you should make her “very aware”. You understand that she “doesn’t process reality”. If she doesn’t process reality, will you be able to make her aware? Probably not.

You assume that she is “sad to be immobile now”, but you may indicate that you believe that because you are feeling great empathy for her losses. Has she given you any reason that she herself is depressed by her lack of mobility? Does she take part in activities in the NH. Is she willing to move from place to place in the wheelchair?

In my experience, the most comfortable way to interact with someone in your mom’s situation is to stay with HER IDEA of what’s going on, and to talk about things that are helpful and encouraging to her about what she’s ABLE to do, and not so much about what she isn’t able to do, or why not. Since you BOTH KNOW ALREADY that she’s not likely to walk again, she’s not likely to benefit from or enjoy too much discussion about that.

I just wanted to update here as I always appreciate replies. I talked to PT today because I have had an inner wrestle with whether I should attempt to pay for private PT for my mother. The suggestion was no. She at times refuses the PT offered which she has not been telling me. All I hear is that she needs more PT. It is felt she presently is not at all strong enough to manage to stand let alone walk. Sometimes she claims she was not offered PT earlier in the day.

I have lamented how sad her physical state has made me for years despite my efforts as well as how unrealistic she has been. That could be understandable now but she has been this way for a long time in many areas of life. I have accepted that my mother is odd. I just now have to continue to kindly be frank with her regarding the reality of her mobility and the inner knowledge that I am doing the best I can by her. There just has always been the sadness for me that perhaps if I mattered more to her she could become better but I have to abandon this thinking or else I will fall into a depression that is hard to live with and my family does not deserve of me.

Riverdale,

I am so sorry that you and your mom are going through this difficult situation.

I hope you will find a feasible solution soon.

It really is hard sometimes to know what direction to take.

How are they transferring her from bed to wheelchair or armchair?

I mean, this is the thing: initially too weak to sit up. Now able to sit up? Able to move legs over the edge of the bed (with or without help) and sit up to the edge of the bed? Able to "bottom walk"? Able to place feet? Able to pull up to stand with both hands using a stand aid, with or without assistance of 1 or of 2?

It's a matter of small victories. Giving up on PT because "she'll never be able to walk again" denies her the opportunity to take those first steps by easy stages. You can pretty much guarantee that she won't be able to walk again if they won't even work on it, but then I'd call that a self-fulfilling prophesy.

And "bedsores" is a misnomer - they're pressure sores, and you can develop them just as effectively by sitting too still as lying in bed. There are special cushions and there are barrier creams and all the rest of it, but the only really effective prevention comes from mobility. It's worth the effort!

I admit I'm feeling especially touchy just now on the subject of giving up on people because of one client, whose husband was insisting that she couldn't dress herself even as - with a lot of encouragement and prompting - she was pulling her jersey on. Any opportunity to praise achievement is good for morale, and how is that a waste of time?

A former police officer died at the age of 100 recently. For years after his retirement he walked all over town. Of xpcourse as he aged it became less and less maybe just getting around the block he lived on. At 98 he lost the use of his legs. He asked his DIL if she thought it was because he was getting old.

I don't think its so much your Moms weight but the septis that has caused the problem. A few of the members have said it really seems to drain people. Since Mom does not fully comprehend things, I would not explain why she can't walk. I would ask the PT if PT can be started again at a later date. Maybe they started too early. Mom was still too week. And if Mom has a hard time comprehending what is said to her, that makes it that much harder for the PT to get her do do things. My Mom forgot from day to day.

Suggestion from a person who was overweight, you never continue to tell people about their weight. You get the opposite result, they eat. Its a self esteem thing.

You are not honest about the circumstances LEADING UP TO, but you should be very honest about the circumstances of where you are at, and you should speak with her with PT present. That due to illness, condition, weight, they are unable to proceed with rehab and it is unlikely she will be anything now but bedbound. You say she cannot retain, so she may not even remember, but you will have been honest. You do I assume, now have end of life decisions made with her and drawn up in health care directive. Ask her her wishes regarding palliative care, hospice. Being bedbound will lead inevitably to recurring sepsis, likely from bedsores, and etc. What you look at at this point really is end of life care. I am so sorry. I don't feel a patient should EVER be lied to. But also, I don't expect her to retain a lot, and it makes no sense saying it over and over again.

At 90, weighing 200 lbs, having survived sepsis, and not processing reality, the PT regimen necessary to make meaningful improvement would need to be continuous. Medicare won't pay for that. Does your mother have the financial means to pay for a private physical therapist to work with her daily? Can she sit up in a chair? There are exercises that your mother can do while sitting in a chair. As long as the NH gets her out of bed into a chair she can follow along with chair exercises. My late MIL watched Sit and Be Fit videos on YouTube.

Riverdale, my mom, who recovered well after a broken hip despite being 90 and having had a stroke was also rendered wheelchair bound after sepsis. She was not overweight.

I think the NH tried PT a few times but finally settled on getting my mom mobile in a wheelchair and maintaining enough core strength so that she could continue to use a toilet with assistance.

We never, ever laid out for mom any sort of "this is the end of walking", or "you're never going home again".

Once in a while, mom would say "what's wrong with me?" and we'd say "you had a stroke". She was surprised by this information evevry time.

Riverdale, I feel for you because your wish for your mom to have had a better life is so palbable. I know you would never say "I told you so". But know that it IS okay to think it. At least I did. A lot.

My husband after developing aspiration pneumonia, ended up with sepsis and septic shock which almost killed him. He was not overweight, and ended up being bedridden after all of that. Now he was moving very slowly prior to this and was falling a lot too, so it really didn't surprise me that he could no longer walk after all he'd been through. I brought him home under hospice care where he remained bedridden for the last 22 months of his life.

Now if she is in a nursing home, I know for a fact that they do use Hoyer lifts when needed to lift their heavier patients for various things, so I wouldn't be concerned about that. And I'm sure she is not happy about not being able to be mobile anymore,(it was hard for my husband to accept)so I would just support her in any way you can, and just let her know that you are there, and that you love her no matter what. Best wishes.

My lap top has just wiped my reply, grrr.

What is she able to do? There are other ways to build on her remaining abilities besides formal PT, and if she makes progress on those then you have a good argument for reassessing her eligibility. So far at least I don't see any need, let alone justification, for crushing all hope.

I told you so rarely gives satisfaction except to the person saying it!!!

What have they tried? Weight aside (how heavy is "heavy" if it's not a rude question?) what are the mobility issues? Can she sit up, for example, with or without the aid of a bedstick, a grab rail, a profiling bed etc.?

I've already made myself unpopular with one PT this week so I slightly hesitate, but ...

Showing no progress towards what outcome? Are you satisfied that they're not being too rigid about expectations?

They are stopping it because she is showing no progress and I feel I have to make this reality known again but fear her feeling no sense of hope

If she wants to continue PT, you should advocate it.

At the same time, you should be honest with her about the reality of what might be achievable, and what she has to do to make it worthwhile.

Do you mean she turned down a session once, because she wasn't feeling up to it, and they have stopped her PT without any plan to offer it again subject to [whatever] conditions?