Vitas Hospice a Bust

I am getting to the end of the Home Health Care rope for Jim. The PT guy has pulled out, and the nurse says she will pull out in no more than 2 weeks.

Oh, my, we need blood draws from the PICC line to check his values to adjust medicines. We need someone who can take a blood pressure reading, because my machines can register him.

I had a meeting with Vitas Hospice, and they are not for us. Sister Catherine said that they would not do blood draws. “What’s the point? We aren’t going to intervene with medication changes to delay his inevitable decline.” (What’s the point? To give him a functional mind for as long as we can.) Jim was sleeping at the time, and the Sister said he was comfortable with his passing, or he would want to go into the hospital. She said the problem is mine; that I am the one hanging on and fighting the inevitable and perhaps causing him stress and discomfort by doing so. She implied that I was in denial that he had given up.

Maybe she was right. I don’t think so. I believe Jim wants to fight, with what will and energy he has, and refusing a hospital stay has nothing to do with that.

Jim and I talked later about what the Sister said, and it seems he understood and agreed that he wants to live, but he wants to live here and not a hospital or long-term care facility, even if we have to go 100% private-duty care. We talked about maybe the need to sell his condo to finance that. He agreed that the value of his fully-paid condo was in his “budget plans” as financing if he needed long-term care.

God, I hate to even think about selling his condo because he loves his home; I’ve never known him happier than there. He was proud that it was furnished and decorated like a “real home.” He was so independent and could do whatever he wanted whenever he wanted. He could sit in his chair for hours in the morning reading novels, and watch Phillies baseball on TV almost every night during the season.

I spoke to our lawyer yesterday about changing my will to set up a trust to take care of Jim on a private-duty basis. That really touched Jim, and he started crying. I told him I was committed to keeping him in a private home and as happy as he could be. On the hepatitis chat Board I joined, there are several men in end stage liver disease (ESLD), some waiting for transplants, some not, who are surviving years with this disease.

Sister Catherine said the kind thing about ESLD is that those who pass from it usually do so in their sleep. They just don’t wake up. Now I am watchful whenever Jim falls asleep. He just did that a few minutes ago on the couch with his cereal bowl in his hands.

I don’t know how to wrap my head around this. I don’t know for sure which road Jim would want me to take for him, except that yesterday he said he wants to stay with me and love me for a very long time. I told him that he always had promised me he would live to 84, as both of his parents had. He just hugged me and we cried.

Some have suggested I have conversations with other hospices. Their philosophies on what “end of life care” means may differ.

Someday, in this morass of a mess that I call an office, I will find the copy of our wedding service and vows and post it. It was very powerful. We got married at sunrise on Virginia Beach, the place where we met and, over time, became part of one another.

I want Jim back.