reply to

[Guest guest]

,

You verbalize the concerns and dedicated love of a very devoted daughter.

It's strange when our mothers who took care of us, now need us to take care

of them. What a difficult adjustment on both parts. In a way, we mourn the

loss of our mothers as we knew them and that's painful. Of course, your Dad

is experiencing a loss, too--the wife that he knew. His " anger " is probably

his reaction to being scared at what's happening. Not everyone is able to

talk about their feelings and if he's always been the strong head of the

family, protector and provider, I'm sure he's feeling quite helpless that

he's not able to change the circumstances of her compromised health status.

I think that for some, the articulation of fears and concerns is perceived

as a weakness, so they just can't talk about things.

A couple of thoughts come to mind when you describe the needs of your Mom.

First, how about getting a prescription from her doctor to be fitted for

compression hosiery. When you put them on first thing in the morning when

the swelling is decreased, that should help to reduce the fluid build-up

during the day. I'm not talking about support stockings or surgical

stockings, either. The compression stockings have greater compression at the

foot and ankle and less compression as you go up the leg and that's what

help to move the fluid upward and out. A couple of common brands are Jobst

and Sigvaris. They are expensive, if your insurance won't cover the cost. I

found a less expensive, good quality version available on-line at

www.carolon.com or toll free at 1-. There's a variety of colors

and styles, too. You just need to have the doctor prescribe the correct

compression.

Also, does your Mom have or can you get a lift chair (chair with a power

lift seat) to make it possible for her to get out of it? A physical

therapist can help her to position herself correctly to maximize her

potential for mobility and strength, too. (S)he can suggest stretches and

exercises to maintain strength and maintain mobility in her right hand and

arm. Also, an occupational therapist can make suggestions for adaptive

devices for things she needs to use her right hand for.

As for any doctor putting a time limit on our lives, that's just plain

ignorant. You're right--no one knows. I do think that there may be a problem

with her having 6 different doctors. That makes for very fragmented medical

care. Having medications interact with each other is one of the biggest

risks, when you have so many prescribing things for her. We call that

polypharmacy. Can you find the best candidate to oversee her care?

I'm sure that others on the list will send their suggestions and offer their

support and encouragement, too. You've come to the right place for " all of

the above " . Most of us can't walk worth a darn, some can't speak worth a

darn, but we have broad shoulders and listen with our hearts. We really do

understand.

Dolores (in CT)

My Mom

> Hello! I received several messages from some of you welcoming me to

> the group and asking about my mom. She is from Pineville, Louisiana

> and I am from Marksville, Louisiana (about 45 min. from her). She

> was diagnosed 2 years ago with PLS after showing symptoms for about 1

> and a half years. I won't rehash the last three years but I will try

> to sum up what I can about her condition now. She will be 54 at the

> end of this month. As of now she uses a walker because the dr. wants

> her to get as much exercise and movement as possible or she would be

> in a wheelchair. She can barely pick up her feet to walk - she more

> or less has to drag them. She is right handed so naturally that would

> be the one that she can barely use anymore. She cannot get herself to

> a standing position or get out or into a chair by herself. She's been

> through so much that it is hard to remember and write it down so it

> is coherent. So please excuse me if I don't make alot of sense.

> Besides the PLS she also has high blood pressure, some kind of vein

> disease in her legs, and several metal plates in one of her ankles

> from years ago when she broke it. Her feet and legs are so swollen

> that if she props her leg or foot against something and forgets about

> it, a big dent will be left.

>

> She (by the way her name is Jan) is on I believe 9 different

> medicines if not more and sees about 6 different doctors. It is

> incredibly hard to keep up with. Just when one medicine starts to

> work, another will cause a side effect and she will have to change

> the meds that were working and so on. Does anybody else have this

> problem?

>

> I am sorry if I am rambling. I have absolutely nobody to talk to

> about this and I am seeming to unload all at once. Please excuse me.

> My dad is ANGRY!! at the world because she is sick and he is

> impossible to talk to about it. He really needs to talk to someone

> but he won't. He is making my mom miserable.

>

> The doctor's told her that she has anywhere from 3 to 10 years to

> live and I hate that they do that. Why put a time limit? What is

> their reason for that?

>

> Anyway, I have more I could say but I'll give it a rest for tonight.

>

> Thanks everybody for listening.

>

>