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makadams51 Posted November 2010

LBD versus physical therapy

My mom suffers from Parkinson's related dementia and heart and kidney problems.When she first went into the nursing home, it was with the goal of returning home after rehabilitation ( strengthening her muscles,re-learning to use the walker' ect. Things did not progress smoothly as mom's dementia causes hallucinations,delusions integrated with periods of normalcy. Unfortunately, the emotional distress got in the way of her physical rehabilitation and prevented progress. On her last visit to the doctor we asked about the possibility of physical therapy again. The doctor said it was reasonable and wrote the order on mom's chart. In the meantime after no response from anyone at the nursing home, I approached the Director of nursing about the possibility of physical therapy. She wrote a note on a sticky pad, and said that the nursing home would do a physical therapy eval and assess from there. Two weeks and no response. I have a feeling that mom's dementia is the barrier to progressing with the physical therapy; but regardless shouldn't the nursing home get back to me with an answer about the physical therapy?
Personally, I don't think there is much chance of mom getting the therapy as her dementia causes so many communication problems with the staff. She is on many meds, and I really don't think adding more is going to help anything. She is 79, and strong in many ways. I hate knowing that she is suffering mentally, but other than praying and being there for her daily and trying to assure that she gets the best care available from the facility, I don't know what else to do.

punkersad May 2012
Update. I talked to the therapist and explained why I did not want her to teach my mom how to work. She did not agree but said I understand why you feel that way and I will not teach her if you dont want me to. At least that worry is deminished. An Online Neurologist said that someone should be with her 24/7 because she has dementia. There is someone in the house 24/7 but not in the room with her necessarily. We check on her, have a baby monitor in the room, sometimes sit with her and try to get her out of the room when she will allow us to but we are not with her all of the time. What do you guys think?

jeannegibbs May 2012
I think that all types of dementia are subject to "showtime" behavior, at least in the beginning. But LBD is different in that pronounced fluctuations in cognitive and other abilities are a hallmark of the disease itself. Between the "showtime" and the fluctuations, people who do not spend a lot of time with the person daily don't really understand that person's status. This is very frustrating for us caregivers who know so much better than infrequent visitors what our loved ones are really like at this point.

Yes, makadams51, the care center owes you the courtesy of a response. Are they waiting for an opening in the PT schedule? Have they decided it isn't feasible? Whatever, they need to let you know. Are you POA and/or medical proxy for Mom?

I do know that physical activity is a critical element in managing LBD. It may not have to be official "physical therapy" but some kind of exercising is important. The goal is more maintenance than improvement. A physical therapist can assess what the person can safely do, and a physical therapy assistant or even the activities director could see that those activities are encouraged daily.

There is A LOT of literature available about lbd. A great source is the LBD Association's web site. Picking out a few of the items most relevant to your situation and bringing them in to the DON and asking for a chance to discuss them with her or him later might be useful.

I wonder if a nursing home is the best placement for your mother. Have you considered a "memory care" place? That's a hard call, and in the end after you evaluate it the nursing home might still be best. But it is worth considering. A big factor is how willing is the nursing home to learn about this common but little-known form of dementia?

Good luck to you.

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punkersad May 2012
Right now I really have the same question. My mom gets physical therapy at home and when the therapist is there it is "show time". The therapist seems to think that we are the ones with the problems not my mom. She does not seem to realize that if she comes in Monday and Friday my mom is asleep at least 2 days after the therapy sessions. She says let her to it. She can stand up, she can walk etc. Sure she can walk during show time but on her bad times which are becoming more and more the norm she cant do anything. I am just afraid that the therapist will get her to walk during show time and then during bad time my mom will think she can walk by herself and fall. I am looking for something to help me to explain it to them.

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