Present

I left my home a little after ten in the morning yesterday and arrived at the Hospice House at eleven-thirty. Mom was in the same position as I saw her yesterday. I greeted her but she did not respond or acknowledge my presence, or maybe she did but it was very subtle. I settled in my stuff and picked up the book of short stories by D.H. Lawrence and began to read the story "England, Oh England."

And naturally, I began to cry. Damn it, I said softly but aloud, not hiding it from Mom. She did not respond.

After a few more false starts and wiping of tears, I got into a flow with the reading -  trying to follow the story more then to see myself alone in a room reading to my dying Mother. The CNA popped in and waved me on. Then the nurse who has been with her for a while came in, and we chatted. She said Mom ate a little ice cream yesterday, but mostly she's only drinking fluids. I didn't see her eat or drink or urinate or open her eyes the three hours I was there.

I read some more. Then the social worker Dad and I had met with the day before, Jamie, came in and asked if I'd like to talk with her. We went into the very zen -like reflection room and talked more about the decisions made in the last twenty-four hours - Dad decided it would be best to arrange for a nursing home, and made some calls to a very reputable one only half an hour from our house. I told Jamie I stood behind anything he needed, at this point, and I'm positive my siblings would as well.

Sadly, or maybe, not sadly, the bottom line is that it appears that Mother is shutting down and there is a strong possibility she will not leave the Hospice House. The moment I walked into the facility I realized that, and I told Jamie I would not feel remorse if that will be the case. In the meantime, Dad has gotten enough straightened out for the temporary future enough so that now, Jamie urged, it is time for all of us, but especially Dad, to simply just to be in the present regarding Mom. She wondered if I could tell him that, and I said yes. I did later when I got home. He gets it.

I went back to the room and read some more. On the way back, I waved to Doctor A., who was consulting with people in the main office area. I was told Dad was on the phone, so she told me to let it ring when I got into Mom's room, and then I could talk to Dad. I said to Mom, who was in the same position as before, "Dad's on the phone, here he is," and I put the phone up to her ear and I could just barely hear Dad say, "Hi sweetheart," and that was the only time I saw Mom respond at all. Her eyes fluttered and she just barely whispered "hi."

It was a touching moment to see. I let her listen to him talk some more, then he and I talked for another minute and hung up. I went back to reading the story, when Doctor A. walked in. He asked if Dad was with me, I said no.

He told me she had had a tiny bit of morphine the night before. He doesn't think it's the morphine or the Haldol that is making her like this. He said we was going to skip the next dose of Haldol to see if her agitation returns. Then he said, "I'm sorry." Twice.

I shrugged. He left, I went back to reading. The CNA came in and asked if I was staying all night, I said no, but we were coming back tomorrow. She said take your time, I'm gong to give her a sponge bath after you leave.  Okay.

I finished reading the story. I said goodbye to Mom, talked to her like she could hear me, told her who was coming to see her this weekend. I told her to hang on until then. I love you, and I know you love me. Then I just stood there and looked at her from the foot of her bed. She did look comfortable, and this brings me peace for her. She's been agitated for so long.

Last night, Dad called to tell me that he had called and had a good talk with the nurse there. They've decided to gradually take her off of the Haldol all together, down to .5 mg today, and no Haldol at all on Sunday. That way, he says, we'll know, if it's the drugs or...  nature taking it's course.

At nine-thirty at night, my sister, older brother, and nephew came over for an hour visit. We sat outside by the campfire and talked. I was feeling strong and have been concerned about their feelings. I've had a lot of time to spend with Mom and grieve, but they haven't. It's a crappy feeling to try and squeeze it all in in a short amount of time and with so much distance between them, I can imagine. I should not have been surprised when my brother suddenly broke down in a ravaged fit of tears. My sister and I told him it was okay to cry.

Dad and Don and I will get rolling in about an hour, and the other three will follow up later. The social worker will be available for the others if they should like to talk at all.

My girlfriend Lynn, who lost her mother in early February to this disease, said to me in an email yesterday, after I had filled her in on the where we were at,

"I think I would weigh on the side of caution and plan to spend as much time as possible with her now - I don't know of anyone that has come home from hospice - but what do I know."