Caregiving, the good and the bad

[Guest guest]

I have been composing this note in my mind for quite a while, and I am

not at all sure I can say what I want to.

First, I want to thank all of you from the bottom of my heart for the

support and understanding you have sent my way both before and since Ken

died. As I look back on the eight months since Ken left, I am very aware that

I would have had a much harder time getting through the days if I had not had

all of you to " talk " to.

I also want to tell those of you who have lost your loved ones

recently (and there seem to be too many of you) that I am thinking about each

of you and hoping that you are getting through this with the same courage you

showed as caregivers. I have found that I am missing Ken more as each day

passes, and the memory of how really sick he was becomes more distant in my

memory. I am grateful that I am now remembering him more as he was before he

was so ill, but it does make the missing harder.

I am constantly blown away by the courage and fortitude that most of

you, patients and caregivers, show as the symptoms become harder and harder

to control. All I can say is that as I look back on this long caregiving

period in our lives, there were times that made it all so very worthwhile.

Ken, too could " come to life " when there was a party, and friends almost

never saw him at his worst. However, I too came to be able to enjoy those

times when he was acting almost normal and to appreciate that he was enjoying

himself. Even the paid caregivers that we had the last few years say that

they have to remind themselves how it was getting him up and showered in the

morning to realize that he was sick enough to die. For me, the single best

thing I ever did as a caregiver was to let go of most of the physical duties

to the paid caregivers and to spend my time with Ken just being with him. The

second best thing I did was to recognize when we were no longer really

helping Ken by trying to keep him here and I allowed the people from Hospice

to help us. They came here for six months and one week which is amazing

considering the doctor had to say he had about six months for them to come.

They never suggested we stop giving Ken the medications that were helping

him, and they had some suggestions to make his life even easier including

some medication changes that really made things much better. As you may

remember, after Hospice came, Ken seemed to be better and I was afraid they

would drop us. But they didn't, and when he finally died, I was much better

prepared than I had been earlier. Ken was a really courageous and wonderful

man, and I hope he heard some of the things that his friends and associates

said about him after he died. I know that without the people I have met on

this LISTSERV I would not have been as able to support Ken the way he

deserved, and I am eternally grateful. Many of you are finding the caregiving

hard and most frustrating. Believe me, I had many of the same feelings you

are having. But believe ma too that you will never regret what you are doing

now; your courage is what is helping your loved ones accept the terrible

thing that is happening to them. I do not regret anything I did to make Ken's

life easier while he was with me, and I know you will feel the same way when

your battle is done.

Love, Barbara