From Raquel -Is this the end?

September 18, 2008

Dear friends, yesterday I was called from the NH by the speech therapist and

told that Sherman doesn't want to eat and he can't swallow most of anything

anymore. He asked me what I wanted to be done. Sherman and I talked about this

many years ago, when his father was taken to the ER with heart failure and was

intubated before my MIL could get there and tell them that he didn't want that.

He had been in and out of the hospital several times in the previous months, and

just a couple of days before he had told her that if that happened again, he

didn't want any extreme measures so save him. After he was admitted to the

hospital, the family talked to the doctors and got them to pull out the tube,

but it had done so much damage that his throat and mouth were constantly full of

blood and he had a long and painful agony for over two weeks. After being there,

we decided that if that or anything similar happened to one of us we wouldn't

want tubes or anything

that would make suffer just a little longer, and promised each other that we'd

respect the other wishes. A few months ago, we both signed our Health Care

Directives, Sherman naming me as his agent and I naming one of our sons as mine.

So when I was asked that question, my answer was, " No feeding tube! " , just try

to give him what he wants and make sure he swallows. I felt bad about that but

at peace knowing that that is what he would want. Later, the speech therapist

made me sign a paper releasing the NH from any responsibility if something

happens to him.

Neither one of us is afraid of dying -in fact, a few months ago he told me he

felt the end was close and he was looking forward to seeing all his LO who have

passed away and to doing some work on the other side. We know where we are going

and that that is a much better place than this world. We know we are eternal

companions and that, thanks to our Lord's resurrection, we will be able to get

our bodies back in full health and beauty and have our family with us for

eternity. So there is no fear in us -rather joyful anticipation.

Now, back to Sherman's condition. Do you think he's gotten to the final stage of

LBD? (That's the Dr's opinion) Should I ask for an IV to keep him hydrated or

just let the illness take its normal (it's there anything " normal " in LBD?)

course? Anything they do will add to his suffering and probably to the length of

his life/barely existence. Should I get Hospice and let them advise me? I

haven't yet done that. Is there any difference between one or the other, or are

all hospices about the same?

Please advise according to your own experiences! I'm looking forward to your

answers and thanking you in advance. You are my pillar of strength. My love to

all,

Raquel

September 18, 2008

Raquel: My heart goes out to you. I know that sooner or later I will be

faced with the same things you are going through with your husband. I have

often thought that Ray will probably starve to death. We also have signed

health care proxies. I guess I would call in Hospice even tho he is in a

Nursing Home. Just extra comfort and care for Sherman. How long has he been

in? Hasn't he gone downhill very, very fast? It is so unfair and yet if

the end is near, it is for the best. I fear that for a long, long time Ray

will be in this prison and we cannot help him out. As long as he is

imprisoned, so am I and so are our children. There is no comfort, no peace,

no answers.

God bless you both, you are in my prayers.

Leona

Wife of Ray, diagnosed with Parkinsons in 2004, LBD in 2006.

Placed in a nursing home 50 miles away from home on May 2, 2008.

September 18, 2008