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Hospice

Friday, August 19, 2005 10:34 AM CDT

Have you ridden a roller coaster lately? Do you remember the anticipation, the flutter in your stomach as the coaster climbs the hill? Did you feel that slight stall, that quiet moment at the top? Then the bottom drops and you fall. Then there's a time of relative quiet, and it starts all over again?

That was yesterday for me.

I made the decision to call hospice. It was a hard decision for many reasons. Number 1, I'm a control freak, and calling in someone made me feel less in control. The hospice nurse came in and said, "You're still in charge, we won't try to boss you around." Bob smiled a little at that one. I told her, "I'm a pretty hard person to boss around." Number 2, in some ways, it feels like giving up. I know in my head that it's not, that we're working toward different things, but in my heart, it's difficult to accept. Dave has fought so valiantly for so long, it's hard to consider another way of being. And Number 3, it was the first real decision that I have made without Dave in 20 years. Most of the time, in these journals, I talk about "we" decided or did. This time, Dave was not really able to help me make the decision. That was a lonely, bereft feeling.

But Dave could no longer swallow pills. He wanted to fight this thing with everything he had until the very last possible moment. So until he physically couldn't swallow the pills, I kept giving him the chemo. I feel good about that. I'm glad that I supported his choice and his decision to fight, no matter what the cost. I'm glad that we waited to call hospice until we absolutely had to. If he becomes able to swallow pills again, and indicates he wants chemo, I can always stop hospice. (They only allow comfort measures on hospice, not any treatments.)

Now that he can't swallow pills, he'll be getting all his medications in liquid or suppository form. Should have seen his face when I told him about suppositories!! This will make it easy to get medications in him reliably. Since we stopped giving him pills, the nausea is completely gone.

He was able to eat some applesauce and some mandarin oranges yesterday. We're able to trickle a little water into his mouth with a small straw without him choking.

He was holding his head at an odd angle yesterday and indicated that his neck hurt. I massaged it for him and we got some pain meds, which helped. He slept well last night.

Hospice has been wonderful so far. They got us a suction machine to help with the mucus. They're getting Dave an extra-long bed since he doesn't easily fit in the regular size. The help with medications has been wonderful.

We had lots of visitors yesterday. Wonderful people, and it was good. Crowded sometimes, but okay. Dave always likes a party. He's able to squeeze hands, and listen, sometimes nodding his head.

Mark and Jim are here, that seems to have brightened Dave up quite a bit.

Matt Stroe, you are the best. We love you so much.

Love, Shell

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