Vera and Barb-Caregiving

[Guest guest]

Dear Vera, I read and reread your letter to Barb about caregiving and

letting go. Your letter could have been written by me. My husband has

gone down so much in the last year. We see the neuro every 4 months, and

I think back to each previous visit when we go and I can see such a

change in only 4 months. Denny cannot pull himself up anymore and is in

the wheelchair to move at all. He still feeds himself but very poorly

and he is choking so much more now. There is a lot of phlegm and he is

choking and throwing up his food. We can hardly understand him anymore

and I just see him losing the ability to do anything for himself now.

I try not to think about the future or how long it will be before we

lose him. It's only been 4 years since his diagnosis but symptoms

started in 95. How do you let go?? And do you remember the good times

and not the cathing and bowel cleaning and choking and anger and the

crying when he hurts my feelings about something I have NOT done

right??? I just don't know if I can keep going, and I don't think I can

let go. I look to Bill and Barb and others that took such good care of

their loved ones, and you all are an inspiration to me. Please keep up

the encouragement to caregivers.... this is absolutely the hardest thing

I have ever done. Vera.. we are all in the same boat and we must help

each other paddle.

Ann

[Guest guest]

Ann,

Have you and Denny considered a PEG tube? I know that gave Charlotte 3 extra

years of fair quality of life, without a lot of hassle. (Note: the 3 years

difference between the 9 years described in the 1995 Baylor report and the 12

she lived).

Take care, Bill

===============================================

Ann and Denny Poole wrote:

> Dear Vera, I read and reread your letter to Barb about caregiving and

> letting go. Your letter could have been written by me. My husband has

> gone down so much in the last year. We see the neuro every 4 months, and

> I think back to each previous visit when we go and I can see such a

> change in only 4 months. Denny cannot pull himself up anymore and is in

> the wheelchair to move at all. He still feeds himself but very poorly

> and he is choking so much more now. There is a lot of phlegm and he is

> choking and throwing up his food. We can hardly understand him anymore

> and I just see him losing the ability to do anything for himself now.

> I try not to think about the future or how long it will be before we

> lose him. It's only been 4 years since his diagnosis but symptoms

> started in 95. How do you let go?? And do you remember the good times

> and not the cathing and bowel cleaning and choking and anger and the

> crying when he hurts my feelings about something I have NOT done

> right??? I just don't know if I can keep going, and I don't think I can

> let go. I look to Bill and Barb and others that took such good care of

> their loved ones, and you all are an inspiration to me. Please keep up

> the encouragement to caregivers.... this is absolutely the hardest thing

> I have ever done. Vera.. we are all in the same boat and we must help

> each other paddle.

> Ann

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