Fwd: exercise and LBD Digest Number 2834

[Guest guest]

April, (Sorry if this is too direct/harsh.)

I see a lot of myself in your husband and brother-in-law. They've got to

" take a chill pill! " They should not be disappointed in their father's

behavior. I'd like to say " been there, done that " but the truth is " been

there, still doing that sometimes. " It is so easy to get frustrated at our

LOs with these diseases! Every time I do, however, I regret it

later. Later on, the brothers may think " maybe he couldn't see those

clippers " or " maybe I shouldn't give him the idea that he's going to die

sooner if he doesn't exercise three days a week. " In my case it's later on

I think " maybe he couldn't see he still had food on his plate, " " maybe he

couldn't see that his walker was right there (when I had called on the

phone for the front desk receptionist at the AL center to move his walker

next to his bed, blaming the CNA for leaving it in another room), " " maybe I

shouldn't have pointed out all his cognitive failings because all it did

was made him sad, " or " maybe he really did need a rest and I endangered him

by being a hard-ass and insisting he walk back to his apartment. "

I've had all those " you should exercise more " discussions with my Dad, and

I tell you I regret every one. How stupid of me! How selfish of me! It's

my dad's life. He can live it any way he damn well pleases. And my Dad

exercises three times a week for an hour each time! That's probably more

than 90% of the caregivers on this list! And on top of that 3 PT sessions

each week where there's exercise and walking involved! My Dad does believe

that exercise is what's keeping him alive. (Every time we see the

neurologist, the neurologist says how " impressed " he is with how slowly Dad

is progressing and wants to know " Dad's secret. " And every time I say and

Dad nods " it must be the exercise. " ) But one day he will simply not be

able to exercise - not for lack of wanting to do it. And I now endeavor to

create an environment where that's OK. I don't want him to think when that

day comes that he is unable to exercise that I will be forever disappointed

and that he will then think " that's it; I'm going to die any day now. "

The best your husband can do is: get the doctor to mention the benefits of

exercise; find an article on the benefits of exercise and read it to his

Dad (but don't say " see, Dad, this proves you should be doing more! " ); talk

to the trainer to find out if he/she would be available on a 3rd day, offer

to pay for that third day, and perhaps ask the trainer to suggest a 3rd day

to your FIL; get the doctor to authorize PT and the therapist can come and

provide appropriate exercise; attend as many of those PT sessions as

possible to learn how himself to provide appropriate exercise to his

father; and get some of the exercise-while-sitting-down videos and try

those out with your FIL.

One last story about my Dad and exercise. In November, I talked to Dad's

neurologist aout what I viewed as " dangerous walking " (even with the

walker) and he agreed that Dad should be in a wheelchair. So that he has

some independence, Dad still uses his U-Step walker around the

apartment. Since Dad is no longer walking down to lunch but is being

pushed in a wheelchair, I've waited Dad to get some additional

exercise. I'm worried about that day when he gives up, wants to be pushed

everyone, and can't use his legs any more, necessitating a move to a

NH. (He's in AL now. As long as he can be assisted with no more than one

person, he can stay in AL.) So I arranged for 3 times a week of

PT. (Medicare will pay for 3x/week for 8 weeks. We'll probably keep them

on after Medicare runs out.) And the " rule " (of course made by me) is that

he needs to keep using his walker to walk to and from the fitness equipment

that is down the hall (maybe 100 feet - it's a long way for Dad). Well, 2

weeks ago I was hiring a new fitness trainer and stayed with her for 2 days

of Dad's workout. It's a serious workout - 30 minutes of cardio and 30

minutes of weights and other exercises (sitting down or lying down). After

Dad has walked 100 feet to the fitness equipment (it takes him 20-30

minutes just to do this) and works out for 60 minutes, he's

exhausted. (After showering, he usually goes back to bed for an hour and

then proceeds to lunch.) I walked with Dad and the trainer back to the

apartment. It was very slow going. He stopped frequently to rest and put

his hand from his walker to a side railing along the hallway. I kept

encouraging him: " let's keep going. " I also scolded him for removing a

hand from the walker. We finally made it back to the apartment. The next

day I mentioned it to the PT. She scolded me! And rightly so. She said

at the point when he's tired and needs a rest, pull up a chair and have him

sit down and rest OR get the wheelchair and take him back to the

apartment. It is DANGEROUS to force him to walk when he's tired. I was

simply inviting disaster. Just because I was a hard-ass and knew that the

walking would be good for him. Well, the falling would be so much

worse. Then he'd NEVER agree to use the walker again. Or, at least not

with me around. He's no dummy! I apologized to him later and said that as

soon as gave some behavior indicating he was exhausted we were going to

offer a chair or the wheelchair. I hope that I can figure this out for

myself next time and save us all the agony. This all demonstrates to me

that I'm not as smart as I think I am.

Robin

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>

>Message: 12

> Date: Thu, 02 Feb 2006 14:11:35 -0000

>

>Subject: LBD and Exercise

>

>Here goes another question. I knew that once I started posting here,

>more questions would come to mind. Thank you all so much for your

>continued patience with me. My FIL " works out " with a 75 year old

>personal trainer twice a week for 45 min. Though my husband is happy

>to know his father has become somewhat more physically active, he

>would still like for him to do more. He thinks that the more active

>his father becomes, the less rapidly his disease (PD w/ LBD) will

>progress. In fact, he told his father yesterday that he was proud of

>him for exercising two days a week, but he wished more. His father

>told him that he needs to rest the other days. I certainly don't mean

>to sound insensitive, but is that just a cop-out or do you think he

>physically can't exercise more often? He is able to walk around

>fairly well most days with a walker. However, he prefers to sit and

>nap or watch TV all day. He's been that way for awhile.

>

>April

>GA.

>

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>

>Message: 25

> Date: Thu, 2 Feb 2006 20:45:26 -0600 (Central Standard Time)

>

>Subject: Re: LBD and Exercise

>

>

> my dad would get very tired out whenever he did anything physical, i think

>with this disaese and the fact that it changes from minute to minute day to

>day etc, that be grateful for he 2 days a week and then allow him to rest

>the other days. with lbd, unexplained falls are a common occurrence and

>that puts him at risk for a fractred hip or worse which would require

>surgery and could very well be the start fo the end like it was for my dad.

>good luck hugs sharon m

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