RE: Bill and Caregiver Feelings

[Guest guest]

Vera:

Let me respond to your point about how the patient may treat caregivers.

I find that Terry is quite self absorbed as she tends toward a single

tasking mode as described in a separate post on the list to Zac about psych

testing. As a result, she usually wants what she wants " right now " without

any consideration to what else may be going on or what I may be doing. Her

world is the one right in front of her. Other major issues in our lives

are largely off her radar screen.

She was never a selfish person, but today it appears she is this way due to

MSA. This together with her apathy makes it very difficult for me to help

her do the things she needs to do to maintain her abilities. For example,

she is currently receiving physical therapy. When I try to work with her

to carry out the routines the therapist has recommended, she behaves as

though I am imposing on her, or punishing her so to speak. She is almost

totally unable to accept the benefits to her of PT.

This behavior is no where as difficult as the example you cited with

Fred. However, it is of the same nature and lends credence to this aspect

of MSA as your are experiencing it. It has taken a lot of effort on my

part to try and understand " where she is " so that I am not as frustrated

by her otherwise anger provoking behavior. This behavior is beyond trying

to reason with the MSA person; we get this for no extra charge, so to speak.

So, as I read your post, I can truly say you are not alone. Many times,

the behavior is personally very hurtful to me - and to all of us I am

sure. Unfortunately, it simply goes with the territory. MSA is a mess to

be managed, not a problem to be solved.

Sharing experiences like these is what makes this list so helpful to all of

us. We are not alone in the struggle.

Message: 14

Date: Mon, 17 Jun 2002 13:01:40 EDT

From: FVJAMES@...

Subject: RE: Bill

Bill:

I haven't seen you posting today and I'm hoping that you haven't given up on

us here. You can see from Pam posting that times aren't always easy. I

posted the other day asking you to stay, I even got down on my knee's:o) but

today I wanted to really talk to you and tell you why I think you should

stay. You see the other day I almost quit the group. It wasn't because of

anything anyone had done here. It was something that had happen here. I've

told you about how Fred's voice is getting to where it's really hard to

understand him and I know it's part of the illness. Only thing is I'll ask

him again what he said when I don't understand. The rest of the family will

just yes or no or shake their head to things he will say. So when Fred said

something that I couldn't understand again , I asked what he had said I

didn't understand it. He came back with you just don't listen , everyone else

can understand what I say. You just don't care what I 'm saying. So it ended

up he was upset with me and I was just trying to help. It didn't end there

that day. Fred has some work he wanted done here at the house and I don't

mind that, but the man his going to have do the work, Fred pays him first and

then the man will take months( as long as 9 months )to do the work and many

times I finish it just to get it done after so many months. So I told Fred I

don't mind you have this work done, but pay him after the work is done. He

got upset with me and told me he never does anything right with me and went

away to his room mad at me. Later when I went by his room , he called me in

and said he needed to talk to me. what he wanted to tell me was that he

thinks that I should pack a bag and get the @%$*& out. I was so upset with

this, just because I asked him to pay this man after the work. I told him

that he had no right to treat me this way, I was the one that was always here

for him, and this is the way I get treated just because I voiced something. I

started think why keep trying to find out things on the list, he didn't care

what I did, then I started thinking maybe I should stay there could be

someone on the list that I may help in some way. So I stayed on . Then the

other day posted about her mother passing away. I was sorry to hear it,

but at the same time she had given me some help in that posting, help that

she didn't know she had. There she posted that the MSA booklet and the

information on the lifting really had helped. I had sent her both of those

and then I knew I had help one person here.So I'm glad that I stayed. You

Bill have helped hundreds here,not once, but many times. So if I can stay

when I just hoped that I helped one , can't you stay when we know that you

helped many? I hope to see your name posting again soon.

I have to tell you that Fred said he was sorry to me and told me he does

need me here and wouldn't know what he would do if I did leave, like he

asked. I know one of the caregiver's here said that it wasn't a bunden to

take care of the ill person, and I have to say it's not, but there are times

that Fred can be a pain in the Behind.I've had a good cry this last week and

I hope that this week run's a little better. I just wanted to tell my story

in hopes that you understand why I stayed. Fred isn't just the only one I

hope that I can help here, being on this list. I really do hope that you

think about it Bill and see what a value we have in you.

Hugs Vera

*****************

Bill,

I've taken breaks from this list off and on over the past 6 or 7 years. At

times it gets to be too much to deal with. There have been times in the

past that I've gotten really emotionally involved with some people and their

problems. Because of this it hasn't always been a totally rewarding

experience but I've learned to balance my life alot more than I used to and

separate my work(I don't like to call it work because it never feels like

work to me) on the list from the other things in my life that are also

important and now I can't imagine not being part of this community. As much

as we'd like to, you and I just can't help every single person who comes

here... we have to sit back sometimes and let the others on the list help us

out... and they so often come through with flying colors. Because of you, I

now see many people giving out advice about infections for instance .. even

if they don't have firsthand experience with them. Before you joined the

list I don't recall this EVER being mentioned! Everyone's individual

knowledge and experience has added to the whole and it will always be with

us. There are times that I go quiet and just sit back and read the list and

say nothing and whenever I do I'm always inspired and rejuvenated by it. As

you so often tell others... take care of yourself first. If you need a

mental health break, then take one. We know you won't be far.

Love,

Pam

Sennewald Charlottesville, Virginia