Re: RE:(MSA) Re:caregiving, the good and the bad

[Guest guest]

Vera,

A P.S. - this is a personal decision for each caregiver, there is NO

one answer for everyone. It does not matter what we all think, it

is a decision you and Fred should make. Some people have to choose

a nursing home, some choose Hospice, and some choose to procrastinate until

there is no decision to be made. Whatever decision you make is fine

with all of us.

Have a HUG!

Bill

jessejgranma wrote:

Barb:

I understand how hard it was for you to answer this question I had.It

wasn't easy for me to ask. I wanted to do it on this forum, because

so many of us are caregiver, and it's so hard to know what is right

unless we ask. I don't want to lose Fred, but I also know that a time

will come when I need to let go and I don't want holded on longer

then what I should. Fred has been strong, but I can't have him going

on because it's what I want. That's not fair to either of us.

Fred

tolded me the other day that even with him being sick, these last

five years have been the best in his life. He said his gotten closer

to me then he ever has before and seen a side of me that he never

knew was there. I guess there are good things that come out of

something that is so bad. Alway a silver linning somewhere.

Thank you for the honest answer to a question that was so hard to ask.

Hugs Vera

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[Guest guest]

Vera:

Once again I think you have hit the nail on the head. It is a big

temptation, given what modern medicine can do, to try to keep someone

breathing just because we want to hold on. The trick is to know when to " let

go and let God. " Given my druthers, I would have kept Ken here in any

condition, but I knew it was no longer fair to him. I had to stop trying

desperately to hold on to him. The trick is to know when. For that, I had to

depend on His choices and the expert opinion of his physicians who

unanimously thought it was a miracle he had held on so long. I wish all of

you on this list could have the kind of relationship with your doctors that I

was privileged to have. Also, once Hospice took Ken off all antibiotics and

we decided not to give him any more, he came very close to leaving about

three months after Hospice came. He had a massive UTI, and we decided to

treat it only with medication that relaxed the bladder for comfort. Hospice

said he was going and alerted everyone, but the next day he opened his eyes

and said " I'm all right. " He then asked for Pizza for supper and ate two

bites that very day. I still believe he was testing our resolve and felt it

was safe to stay around a little longer safe in the knowledge that when he

was ready, we would not try to stop him. After that he was noticeably calmer.

Everyone noticed it. The day came when he just banged his hands on the table

and said " no more " when we were trying to get him to exercise. We honored

that decision too. After all, he had gone to the gym three times a week for

many years and had really worked at keeping moving.

Fred has asked that you promise not to keep him here when he is ready

to go. You will know when that is, I am very sure, and you will be able then

to let go and give him the kindest gift a wife can give. I think the

willingness to let go is probably the ultimate gift of love. Many people

thought Ken was going five years before he did, but with the help of our

caregivers, we were able to give him a pretty good life during that time, and

he showed his willingness to stay by cooperating with our efforts. He was a

good fighter, and he battled until he knew there was no point in it any more,

and then he left. All his vital signs were good the day before he died, but

he was ready.

My love to you and Fred. I hope the New Year brings you both a sense

of peace.

Love, Barbara