Husband has dementia and Parkinsonism. His neurologist had him sign up for physical therapy. He listens and tries only while there. Advice?

I have a simple answer.....there is nothing you can do. These people are NOT going to cooperate and listen and do what they should do. Let them know if they do NOT cooperate they will be placed somewhere and he will be forced to do the work. And if he still won't cooperate, then place him and have a life that I think you deserve.

janpatsy: Thank you for the update. Will pray for you.

I am not sure what to say, however, my step father will listen to an outsider before he will listen to my brother or I. So he will do PT when an outsider comes to the home, but when we ask him to do it with his wife, he just doesn't do it and she doesn't press the issue.

Might want to hire a skilled therapist to come to your home and see what the result is.

I gave up trying to get my mom (with dementia) to do anything physical.  She gets mad and says she walks all the time.  The only place she walks to is the dining room to get her meals.  It is useless to have the conversation.  She doesn't remember it.  I have accepted her limitations and I am trying to enjoy what time she has left.  Acceptance of her situation was huge for me.  It took a lot of the stress away that I was carrying unnecessarily.   

I hope you get there.

If PT is not provided in-home, could it be?

Getting out might actually be better though, if he can be encouraged to walk to car, to facility and back.

If they provide written instructions/pics for practice at home, can you modify those to be all good pics/demos he can use and maybe have a chart he can check off with each so he gets a reward (star, treat, whatever might work?) With short-term memory loss, those with dementia forget they need to do this, they just did it or think they did it already! Using the pics and a chart with some kind of reward could help, if he's willing to participate.

Clearly if he refuses to do anything, it would be futile and frustrating for you to continue. If you can find any way to motivate him to do ANYTHING, it would be better than not.

Our mother only has the dementia aspect, but refused to even work with OT/PT when they came to help get her walking with the rollator again. You have my sympathy there. Funny that she can sit in her transport chair, and "walk" it while sitting in it - seems like way more effort to me than using the rollator!!! She is guaranteeing wheelchair sooner rather than later. :-(

While I believe that the neurologist had good intentions for your husband, he may not be understanding of the burden therapy places on both of you. Physical therapy is beneficial when the individual has the ability to carryover the treatment from the therapy facility to home. Someone who has dementia is unable to do that due to short term memory deficits so as much as the therapist, you, and your husband try, the results are not what are expected. I vote for discontinuing the therapy and enjoy the time you have with your husband.

New doctor

It would be a challenge for anyone with dementia AND Parkinsonism to follow a PT regimen. Perhaps his doctor could readjust this plan.

People with PD tend to have problems initiating movement so it's hard for them to exercise without help. Walking, even with assistance, is the best exercise. Do you have a friend or relative that can help him walk?

There's another option, based somewhat on rewards.   With dementia, it's hard to remember, but perhaps you can reach beyond that and address a reinforcement pattern, by rewarding him with something he enjoys.  

Does he have favorite foods, or something that he especially likes to eat, or see?   If so, they can be encouragements, but I might start at the therapy facility since that's where he apparently will do the PT.

I'm curious as well.  How does the therapist encourage him to exercises, or does he primarily follow his/her demonstrations?

I think I would talk to the therapist and ask to work along with him/her, so that your husband patterns himself to cooperate with both of you.   Then continue to guide him at home.

I think the Doctor is not being particularly honest with you. How does he expect anyone with Dementia to follow PT? Maybe the Doctor thought it wouldn’t hurt anything for him to try. If you can’t get in home PT, I wouldn’t worry about making him practice at home.

Unfortunately, when people have dementia, you cannot reason with them or fix them. I see only two options: You either ignore them and their needs and save your own sanity by letting them lie in the beds they insist on making for themselves or you remove them and place them. There is no other way - been there, done that - it is useless. Think of yourself and take care of yourself. If they go down hill, it is their doing and you can't stop it. You do not deserve this crap from these people. Get over guilt and effort and take care of yourself. Nothing else is going to save you.

Try movement therapy.  Put on a CD of his favorite music; it can skip the PT instructions and move directly to stimulate his brain (unless he hates music).   Start moving, swaying, even tapping your feet, just to get him started.  

You might also want to read up on the use of music and movement as therapy for Parkinson's Disease patients:

https://danceforparkinsons.org/

The Parkinson's/Dementia combo is hard to overcome. My mom couldn't get past the immediate discomfort of PT to see the long-term benefit and just refused to work with the therapist. She became bed bound within three years of her diagnosis simply because she refused to move. Now I can barely get her to lift her hand to scratch her nose. It is frustrating, but there is absolutely no reasoning with dementia. My mom barely comprehends the concept of "tomorrow" and certainly not "the future".

I like CountryMouse's suggestion of an in-home aide to do PT with your husband. Your husband might co-operate better with a "professional" than with you b/c he may just try to shut out advice from his wife. I was thinking that you could do the exercises together or that you could assist him with passive mobility moves, but he still might resist your efforts and feel you are *nagging" him. An outside helper might get better co-operation.

Just lost my mother who had both Parkinson's and Vascular Dementia. Mom fell in February and broke her hip, she was never able to walk unassisted again and became bed bound after 3 months, except when I would transition her. The most helpful and sensible information I ever received was a PT who said to me once that due to both conditions, she was unable to grasp the 'no pain, no gain' concept so it essentially does not help them with anything long term, but that it would help keep their muscles more flexible. To me, that was worth at least transitioning her daily and keeping her moving as much as possible. Best of luck!!

Discuss this with the PT as well as the dr. If there has not been an improvement then I would see no reason to continue. And the PT's notes should reflect that.
If this is frustrating for him and you that is another reason to discontinue PT.
Take what you have learned and try to adapt it for what you both do day to day.

I am in the same situation. My husband, with Parkinson's and Neuropathy  is in a wheelchair and refuses to do any exercises what so ever !  There are 6 steps he has to take to get to ore car which is in the basement of our building. When he wants to go out ( nearby casino) that is the only time he will venture to "move" .He makes the steps going down, but very difficult going up.. But he does it ? So I consider that therapy. Ha Ha. What can I say ? Sometimes they need an incentive (like a child) to get them going. I told him I would keep a chart and give him stars each time he attempts some movement (like a child) and it works at times. Humor helps also. Don't give up but do the best you can. I know, "it's tough" !!

Boy can I relate. My husband has the same diagnosis with orthostatic hypertension ( low BP ) to boot. He’s had physical therapy two different times, but he doesn’t continue the exercises. I try to encourage him, but he’s either ‘frozen’ or sleepy, or light headed. It’s ridiculous!
We would walk as much as we could, while he could.
I suggest walking together; and don’t be hard on yourself.
These diseases are hard enough.

Truthfully, I believe physical therapy will help the dr more than a patient w dementia. They simply will not cooperate w instructions or anyone telling them to do anything. They just want to be left alone & have nobody bother them. I can’t tell you how many times I tried to have my mother get physical &/or occupational therapy. She just refuses & tells therapist to do it or sends them away. Hugs 🤗

If you can get some in home PT and ask them to teach you in the environment that you will be helping him would make it easier for you.

My dad can understand others far better then he can me. I think it is a game that he plays to not have to do what I say. Which is only what the doctor said, but he can't swallow it coming from me.

I never had any luck with exercises, I just took him places that he had to walk. When he got tired I would take him home. I figured at least he was moving so it had to be beneficial.

I would call his doctor and ask if they could prescribe some in home PT and maybe some OT to help ensure that the house is set up to be the easiest environment for you to help him.

I have fought the PT battle with my 92 y/o mother for years now. Despite the fact that she knew she'd become wheelchair bound, she STILL refused to do the 'homework' she needed to do to remain ambulatory. We went back & forth for years, and she's now wheelchair bound, due to her refusal to put in the required effort to stay OUT of the wheelchair. Her choice.

You can't force your husband to do something he doesn't want to do, or something he doesn't understand. I guess you'll need to let it go and not think you're doing something 'wrong'. You're doing the best you can.

Why not receiving IN-HOME PT sessions? And the exercises should be manageable for him to do with you when PT not visiting. Are there chair/seated exercises to do? Can you hire a Caregiver Worker to assist?

PT greatly helps. Ask if home health can be ordered? The PT and OT will take care of working with him. They also send a nurse.

It is not wrong for you not to want to coach your husband, especially as things are with its not working for either of you; but it would be wrong just to abandon the practice sessions.

Options:

get trained in how to lead these exercises - ask the PTs who work with your husband's neurologist to show you, and to let you participate in outpatient sessions. Your husband's dementia perhaps means that he needs the instructions you give him to be very brief and very simple, e.g. "right foot. Left foot. Hold here (guiding his hand)." Again, this is something the PTs should be able to explain.

or

hire a home health aide with experience and/or training in supporting PT to come to your home.