PWD & physical/occupational therapy

pookabera · August 2023

Hi everyone :-)

How do you know when to stop PT/OT?

Brief context: Dad fell, broke his hip, had hip surgery, was diagnosed with dementia while in ER, was transferred to subacute rehab for PT/OT. We made the decision to bring him home because his mental health and cognition were heavily declining in SAR and he was not participating consistently with PT/OT, which was why he was there. He's home now, we have home health services hired to visit. His mental health, eating habits, cognition, mood, etc have all improved since being home.

I think the whole concept of PT/OT is a trigger for him -- while in SAR his brain rationalized being taken down to the gym as them taking him to "Detroit" (they weren't the best about making sure he could hear them/understand them + his dementia) and then having him do these insurmountable tasks (walking up a hill, climbing a ladder, etc). He brings up "Detroit" every time our PT or OT visit.

Moving forward, PT will be coming out to visit once a week, and I believe OT is once a week too.

Sometimes it's fine, but more often than not, my Dad gets upset, agitated, angry, etc. Then if he really feels pushed & not listened to & out of control he'll shut down, which then affects whether he'll eat (which is already tenuous because he has little appetite), whether he'll take his meds (which affects his urine output, his bowel movements, his pain, etc), and whether he'll talk to us/watch tv/look outside which all affects where he is cognitively. Out of the 4 visits we've had so far in the past 2 weeks (3x PT, 1x OT), I think he was initially friendly and open to doing PT once.

I know I should be doing more to try to encourage him to try walking with the walker, but he is genuinely afraid of falling and when he tries to stand up he knows that he's not steady on his feet.

As far as where his memory is, he struggles to remember how to stand up from the bed (I think he wants something to pull on, but PT encourages him to push from the bed and then grasp the walker -- OT has some different ideas, so we'll which ones work best for dad).

Yesterday during PT he was resistant to trying to walk the entire time and when he did stand up to try walking he couldn't remember how to use the walker. This isn't usually an issue. I also know that sometimes helping get a task started helps PWD. But he was in an "I can't" mindset yesterday and didn't want to walk.

Sometimes we can pull the, "Well, it's exercise. When you were in the service you had to exercise whether you liked it or not," and that helps - but a lot of the time I think his agitation is stemming from feeling a loss of control over decision-making + feeling like he can't do something physically.

Yesterday my mom told him he was having a visitor and explained who it was (we're trying to figure out if it's better to tell him ahead of time or not) and it set my dad off. "Everybody's taking over my gd life" etc. Even though last week he had good/okay experiences with PT and he was friendly by the end of it and said PT could come back - he doesn't remember any of that. He's just experiencing the current emotion of fear of falling, being tired, being comfy in bed, and wanting to be left alone.

JeriLynn66 · August 2023

I would have a private conversation with OT/PT and encourage them to adapt expectations and approaches…

SusanB-dil · August 2023

Could you possibly go with one or the other and not both? Is it the same person each time? That could make a difference if he is more comfortable with one person over another. It could also be the day-to-day differences of which mood strikes up at the time.

harshedbuzz · August 2023

@pookabera

I am sorry for this situation. It's really hard to know how and how hard to push knowing that the inability to regain ambulation will complicate care at home and will impact options/costs in choosing a LTC facility. Care will be a lot harder for mom if dad doesn't/can't walk safely in the home. And if she's considering a facility, most all MCFs require ambulation on admission which could mean he ends up in a SNF at a much higher cost but without dementia-informed care.

Rehab in a SNF is generally not well tolerated by PWD past the very early stages. Most PTs are minimally trained in dementia and their protocols are seldom dementia-informed. Of the 4 folks I know who needed PT after a hospitalization, none did well. That said, my aunt enjoyed the attention.

I found the walker was best offered wordlessly. No harping or reminding unless he refused. Then I said it was "doctor's order until he thinks you're strong enough without it".

HB

MN Chickadee · August 2023

Is he anywhere near a point where the PT could leave you exercises to do with him? Seems like you may at the tipping point where preventing him from shutting down and refusing to even try to remain mobile is maybe better than whatever benefit he is getting from the therapy. I might make a last ditch effort to change the PT experience. Their "personal trainer" is coming. Have therapist pretend to start their "exercises" with mom and then she can talk about how great it is and say your turn! Put his favorite music on, maybe act like it's more of a senior jazzercise than PT. I also wonder if the person didn't come in scrubs if he wouldn't go back to whatever is triggering bad memories? Anyways, if you can't find a way for him to tolerate the sessions better I might switch to just trying to get him to move as much as possible on your own.

Falls and broken hips are often catalysts for declines with dementia. It's a very hard situation to navigate and you certainly aren't alone in these struggles.

SDianeL · September 2023

My DH was diagnosed 2 years ago and is Stage 5 going into Late Stage 5. I never tell him too far ahead of time who's coming. He gets agitated and obsesses over it. I tell him right before they arrive. I would speak with the OT & PT and see if they have specific experience with dementia patients and if not, request them. If they do, explain the behavior and they should have ideas to help. https://www.mind-start.com/10-Tips-for-Successful-Therapy-for-the-Dementia-Patient-Who-Refuses_b_64.html

ButterflyWings · September 2023

https://alzconnected.org/discussion/comment/181923#Comment_181923

Thank you for posting this Diane. Great tips to gain a PWDs trust and cooperation, whether for PT or not. These strategies worked when my DH was confused or tired and not ready to engage in the 12 PT visits that literally got him back on his feet after being bedridden and immobile in hospital for a week. At late stage 6 it was possible he might not rebound, but thanks to a very patient, skilled, and compassionate "physical trainer", he did.

I learned a lot from her approach, and the only thing missing from this article was the lighthearted spirit and humor of his amazing PT. I think you can't fake that, but it helps to at least be aware that the facial expression, demeanor, and overall since of fun vs. serious business, can make or break at encounter when dementia is involved.

Our person was so pleasant and genuinely smiling and happily reacting at pretty much whatever DH accomplished during their sessions. She made it a winning adventure for him even if he needed me to join in the walking, leg lifts, or whatever she was asking him to do -- which required modeling and repeated prompting since he was already having great communication/comprehension issues and also would forget the task midway through it, and need continued reminders of what he was doing (10 or 20 reps of something). She was great and her attitude made such a difference in his successful response to the 12 PT visits, I know!

Reading this article reminded me how many of her strategies I have employed outside of PT to get DH's cooperation on something or other. Thank you again for sharing it.

LauraMcG · September 2023

Thank you all for honestly sharing your experiences.

My 93 y/o mom with dementia broke her hip late May in her memory care facility. Unfortunately she developed a pressure wound on her heel that progressed to a Stage 3. In FL, ALF's cannot have patients with more than a Stage 2 wound. Mom has been in rehab now for 6 weeks and HATES IT! She gets angry/frustrated with all staff. She yells, mimics and swears. It's heartbreaking.

PT/OT is a real challenge. Often OT will get her out of bed in the morning and get her ready for the day. I don't visit her that early, so I don't know how it goes, but they get it done. I do know PT sometimes takes her outside if she is particularly agitated before trying any therapy.

We don't expect Mom to make much progress with therapy, but we do know that Medicare wants rehab patients to actively participate in therapy to justify paying for them being there.

We hope and pray her wound heals to a Stage 2, and she can return to memory care. But if that doesn't happen, we will have to move her to a LTC facility. That possibility really hurts my already broken heart.

mpang123 · September 2023

When my dad had back surgery, he was in rehab and was sent home with home health pt/ot. He was uncooperative and refused therapy to continue. They stopped coming. Then when my dad went back to rehab for fractured pelvis, he never got therapy when he came home. I think the agency noted about his refusal last time so he was denied. But fortunately he is not in pain and he can actually move around more than before. He walks holding his wheelchair and can take short steps to go to the bathroom himself and can step into the shower and can get in and out of bed and can get in and out of the car. All this without any pt/ot! I just hope he doesn't fall again and break something and never recover.

PWD & physical/occupational therapy

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