Caregiver-patient interaction

December 30, 2001

Hello all,

Your comments on denial and how a caregiver feels when the pt puts on his

best for others really hits home here. When Chuck was first diagnosed and

showing symptoms to me, some of his friends said " what do you mean he's

sick, what is this SO-CALLED disease? " Grrrrr.

Last fall, we went to a reunion of his former colleagues and he was the

life of the party!,this in spite of frequent dizziness, inability to eat

anything for fear of fecal incontinence, and a wildly trembling right

arm. Of course he was exhausted for the next week.

Well, yes, you've got to admire his spunk. But last night he insisted on

taking the dogs out instead of me (it was 3 degrees F.), without a coat

or any pants! He came in and had another of these horrible chills that

immobilized him, with extreme shaking from head to toe.It took several

minutes for me to warm him up with down coats (which he should have put

on in the first place).

So we go through this routine. I say I'll do it. He says he'll do it. I

say no, he shouldn't. He argues and does it anyway. I know he is feeling

bad because I have so much to do here because of the MSA, and I get

grumpy, and then he tries to take the load off me, but it is in

inappropriate ways many times. I'm caught between giving him the chance

to hold his head up high or protecting him from further injury or pain.

And it's all so emotional, very hard to be able to talk to each other

reasonably about it. And it's especially hard for me to not be grumpy

when I have a lot to do, even though I know if I could keep an even

temper, he wouldn't feel so bad about what I have to do as a result of

the disease.

My confession,

Barbara in Illinois

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