Re: RE: Caregiving , the good and the bad

[Guest guest]

Oh Vera:

My first inclination was to answer this privately, but you asked it on

the forum, and perhaps my answer will help some others.

You have asked the question that is the hardest for any of us to

answer. For me, I was not sure it was the time, but Ken had had a couple of

infections and was not really recovering in between. He also was becoming

very frustrated when we could not understand what he was saying to us. We had

missed several support meetings because we couldn't get him in the car. The

urologist did some tests and determined that his bladder was emptying and he

was still getting infections. He just didn't have much quality to his life,

and I found myself calling his Neurologist more than usual. I finally got the

courage to ask if she thought it was time for Hospice, and the obvious relief

in her voice when she said yes was a big clue to me. Even then, my daughter

and I talked to the Hospice nurse and couldn't decide. I went to see the

doctor by myself and we talked for a long time. We finally decided to hydrate

ken intravenously for a week and decide after that. But even very well

hydrated, he did not get better, so I asked Hospice to take over. They took

him off all antibiotics because he had begun to get yeast infections that

were worse than the UTIs. They began to come often, and Ken began to get

better as you know. We even had the Christmas Party for the support group,

and he had a good time. Hospice brought a wonderful new mattress that took

care of his bedsores, and I became worried that they would quit us after they

had made everything so much better. But they hung in there, and Ken died

almost exactly six months after they started to come, so they had come at the

right time (six months is ideal according to them). During that time, I was

able not to be so upset when ken seemed worse, so he was much less anxious

himself. he knew they were here, and he was able to talk about spreading his

ashes at Gold Lake (which we did) and I was able to tell him how much I loved

him but that I would be all right if it was time for him to leave me. That

last six months was a very poignant loving time for us, and that is why I may

be seen by some as pushing Hospice. They do an evaluation and talk to your

doctor, and they would tell you if it was too soon I think, but for us, the

timing was just right. They were also very helpful in getting the brain

tissue to Mayo; that takes some careful planning.

I am sorry you are even having to think about this. Fred is a very

sweet man, and you and he are a very loving pair. I am privileged to know

you, and I know that the two of you will be able to decide what is right. The

big thing for me was not to put Ken through things that were no longer going

to produce positive results. if you want to talk to me about this, feel free

to phone me at any time.

Love, Barbara

[Guest guest]

God bless you, Vera - you are such an inspiration to all of us. Thank you for posting your question so that we could all gain wisdom from the honest, loving answers that you've received.

Elaine Grimmesey

[Guest guest]

Barbara,

Thank you from the bottom of my heart for sharing your personal

decision making journey with the group. We are not at the point yet

of needing to make these decisions, but it has been on my mind and

it's so helpful to know what your thoughts were.

Thank you so much for sharing such a personal process with us all.

Carol & Rob

> Oh Vera:

> My first inclination was to answer this privately, but you

asked it on

> the forum, and perhaps my answer will help some others.

> You have asked the question that is the hardest for any of

us to

> answer. For me, I was not sure it was the time, but Ken had had a

couple of

> infections and was not really recovering in between. He also was

becoming

> very frustrated when we could not understand what he was saying to

us. We had

> missed several support meetings because we couldn't get him in the

car. The

> urologist did some tests and determined that his bladder was

emptying and he

> was still getting infections. He just didn't have much quality to

his life,

> and I found myself calling his Neurologist more than usual. I

finally got the

> courage to ask if she thought it was time for Hospice, and the

obvious relief

> in her voice when she said yes was a big clue to me. Even then, my

daughter

> and I talked to the Hospice nurse and couldn't decide. I went to

see the

> doctor by myself and we talked for a long time. We finally decided

to hydrate

> ken intravenously for a week and decide after that. But even very

well

> hydrated, he did not get better, so I asked Hospice to take over.

They took

> him off all antibiotics because he had begun to get yeast

infections that

> were worse than the UTIs. They began to come often, and Ken began

to get

> better as you know. We even had the Christmas Party for the support

group,

> and he had a good time. Hospice brought a wonderful new mattress

that took

> care of his bedsores, and I became worried that they would quit us

after they

> had made everything so much better. But they hung in there, and Ken

died

> almost exactly six months after they started to come, so they had

come at the

> right time (six months is ideal according to them). During that

time, I was

> able not to be so upset when ken seemed worse, so he was much less

anxious

> himself. he knew they were here, and he was able to talk about

spreading his

> ashes at Gold Lake (which we did) and I was able to tell him how

much I loved

> him but that I would be all right if it was time for him to leave

me. That

> last six months was a very poignant loving time for us, and that is

why I may

> be seen by some as pushing Hospice. They do an evaluation and talk

to your

> doctor, and they would tell you if it was too soon I think, but for

us, the

> timing was just right. They were also very helpful in getting the

brain

> tissue to Mayo; that takes some careful planning.

> I am sorry you are even having to think about this. Fred is

a very

> sweet man, and you and he are a very loving pair. I am privileged

to know

> you, and I know that the two of you will be able to decide what is

right. The

> big thing for me was not to put Ken through things that were no

longer going

> to produce positive results. if you want to talk to me about this,

feel free

> to phone me at any time.

> Love, Barbara

[Guest guest]

Vera,

The Hospice question is a hard choice to make, but as Barbara said if you are

thinking about it - it is time to seriously look into it. I was strongly

considering it just as Charlotte died. It is a way to let Fred stay at home and

prevent you too ending up in care.

Take care, Bill

---------------------------

kmcrae@... wrote:

> Oh Vera:

> My first inclination was to answer this privately, but you asked it on

> the forum, and perhaps my answer will help some others.

> You have asked the question that is the hardest for any of us to

> answer. For me, I was not sure it was the time, but Ken had had a couple of

> infections and was not really recovering in between. He also was becoming

> very frustrated when we could not understand what he was saying to us. We had

> missed several support meetings because we couldn't get him in the car. The

> urologist did some tests and determined that his bladder was emptying and he

> was still getting infections. He just didn't have much quality to his life,

[Guest guest]

Vera,

We have just had to look at the Hospice decision. To keep home would be

great and I have been very luck because the Psychiatric Nurse has been able

to help a great deal with 's feelings about all of this. He wants to

stay home, I also want him to be home if possible. We did try respite care

for a week at a nursing home that is close by. We did this the first week in

November. Maybe that is something to try.

Joan

Re: RE: Caregiving , the good and the bad

> Vera,

>

> The Hospice question is a hard choice to make, but as Barbara said if you

are

> thinking about it - it is time to seriously look into it. I was strongly

> considering it just as Charlotte died. It is a way to let Fred stay at

home and

> prevent you too ending up in care.

>

> Take care, Bill

>

> ---------------------------

>

> kmcrae@... wrote:

>

> > Oh Vera:

> > My first inclination was to answer this privately, but you asked

it on

> > the forum, and perhaps my answer will help some others.

> > You have asked the question that is the hardest for any of us to

> > answer. For me, I was not sure it was the time, but Ken had had a couple

of

> > infections and was not really recovering in between. He also was

becoming

> > very frustrated when we could not understand what he was saying to us.

We had

> > missed several support meetings because we couldn't get him in the car.

The

> > urologist did some tests and determined that his bladder was emptying

and he

> > was still getting infections. He just didn't have much quality to his

life,

>

>

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