Re: Scooters and Tall Tales/For DIXIE

June 20, 2006

Dixie,

Like you, I wish my FIL had never gotten the motorized scooter.

First of all, as I mentioned previously, his is the kind that has

the toggle switch and he doesn't have enough coordination or depth

perception to operate it correctly. He's forever banging into the

walls and has come very close several times to going off the side of

the ramp my husband built for their front porch. Plus, I think it's

taken away both his desire and ability to try to walk on his own,

not that he does very well with that, either. At my recent visit, I

didn't see him move around one time without his scooter. He sits in

it at the kitchen table and moves around the house with it.

Personally, I don't know why any doctor would agree to ordering a

scooter for someone in his state.

I definitely think it's only a short matter of time and my FIL will

be completely bedridden. It was hard to see him like he was during

my visit. I truly believe he'll need to be in a nursing home in the

very near future. How we convince my MIL of that, I'm not sure.

She's bound and determined to keep him home as long as she can.

However, I fear that caring for my FIL will be the death of her. She

has a caregiver coming in 2 times a week for about 8 hours. It's

costing her $500/month and she says she can't afford to have her

come in anymore than that. I'm not sure why she says that because

they're doing just fine financially.

Sorry for rambling, but this disease is truly a beast, in every

sense of the word. There is just no conquering it, either.

Best wishes,

April

>

> When found walking around for any length of time too

exhausting we

> would sometimes use the scooters provided by the larger grocery

stores.

> Whole Foods was a favourite outing for us and they had a scooter

that even

> had a buggy on it to hold the groceries. would maneuver his

way

> through the aisles slowly although in time I would find him stuck

in one

> spot and have to back him out of it. But he enjoyed the

independence.

>

> So we decided to get him a scooter and I called a company that

said it

> would handle all the details of getting my insurance to pay for

it. They

> just needed a letter from the doctor. I picked out one that could

fold and

> go into the car trunk and was not too heavy for me to lift.

>

> Then I spoke with our neurologist. He gave me a funny look but

agreed to

> write the letter. He never did.

>

> Within a very few months was totally bedridden and incapable

of feeding

> himself. Even if we had ordered the scooter I don't think he

would have

> ever been able to use it. My suspicion is that scooters are a

means of

> trying to hold back the tide of LBD. It makes us feel in control,

but we

> are never in control. Maybe this is not true for everyone but I

am glad we

> didn't get one.

>

> When was well he was an incredible story teller. In fact he

used to

> tell stories for a living on the radio. He also wrote stories.

But he

> always knew the difference between the tale he was telling and the

truth.

> When LBD hit I noticed that change. I would hear him telling

people things

> that only vaguely resembled the truth. And sometimes he had very

vivid

> dreams and the next day would tell people things that he had only

dreamed

> had happened.

>

> He got very angry at me for doing something he had dreamed I had

done. He

> never did really believe me when I denied it. However, now that

he is

> actually much sicker he knows when he is dreaming but he has

frightening

> nightmares that he can't shake. I am glad I sleep in a bed next

to his so I

> can wake him up, change and turn him, and give him soup if

necessary to get

> him out of those dreams. Last night he dreamed a bad man was

killing dogs

> and cats. It took him a long time to shake that off and a lot of

soup.

> Just like a little boy.

>

> Dixie

>

June 20, 2006

April-

I am probably repeating myself in this reply. If your MIL can't afford to hire

help, how will she be able to afford a NH? It is much cheaper to keep your FIL

home and pay for ADEQUATE help. Your MIL sounds so much like my Mother i.e.

would rather do it herself. In turn, I did way more than I should have because

I was equally concerned about my Mother as my Dad. I am an RN and I live next

door and that did not help either.

Dad is gone now and sure enough, the stress of taking care of him is evident

with my Mother. She is very forgetful, fragile and thin and has developed

hypertension. We sat down with the attonrey when Dad's illness first

developed, he warned my Mother that very often the caregiver ends up sicker than

the loved one.Unfortunatelyl, it looks like he may well be right.

If your Mother does not want her husband in a nursing home, please relate my

story to her.

XOXOXO

Gerry

Wilmington, De.

Daughter & caregiver for Dick Deverell, who died 9/11/05 after a 4 yr. battle

with+LBD.