RE: Vera and Barb caregiving-Ann Pooles

[Guest guest]

Dear Ann:

I never dreamed that anything would be harder then raising 3 kids in their

teen's . My daughter will be 26 in April, so I'll have a 26, 27, & one 28.

Those were hard year's. Some days I wasn't sure I'd make it pass all the

things that teen's can do. Some days I would think " Why did I ever? " , but

I was wrong caregiving is the hardest. I know that taking care of the kids

was also being a caregiver , but you see them grow up and go off and start a

life of their own and know you helped them grow. With the caregiving that we

do for our husband we don't see them grow , only become weaker over the time

and we wonder if we've done all the right things that can help them have the

best of what time they have left. I know Fred often tells me that he doesn't

want to have to keep on taking care of him with everything that need's to be

done. He feel's I do to much already.When he tell's me this, I just tell him

how other's on the group have lost someone to this illness and they would

rather have them and still be taking care of them. I'm sure we'll feel the

same way. I just don't want to keep holding on when it's time to let go. I've

seen this way to many times. Fred is like your Denny, alot of changes between

visit to the Neuro every three month's. I understand your hurted feeling when

they yell about something that you didn't do right, or not being able to

understand what they have said or me being short because I was out of bed

more during the night, then in it. Sometimes I think I'm a bore, because I

don't know anything else anymore, but this illness. What do I talk to other's

about? What else do I know? We've lived with this illness for 5 years now.

It's taken over our life and what will happen I have no control over. It's

all in God's hands. I do know that I've done the best I could, as you have to

know you have to. We've been there in the best of time's and the worst of

times and I know we'll know what to do when the time comes because we

love,

Vera

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