Thursday, September 11, 2008

Not Actively Dying

The last few days have been an emotional roller coaster as I try to deal with the physical as well as spiritual aspects of Mom's decision to opt for hospice. Initially, it seemed that Mom was growing a bit stronger each day, but bad periods were still occurring where she seemed weak, shaky and disoriented. I was unsure in any given moment what should be my best course of action. Should I let her sleep for 20 hours a day? Should I coax her to continue to eat and drink when the hospice guidelines say not to pressure a dying person to do so? Should I even pressure her to get out of bed if she didn't want to sit in a chair? In the morning, even though we monitor her at night, I would walk down the hall to her room wondering if I would find her alive.

On Monday, I spent a half hour privately conversing with her hospice nurse trying to determine how close to death Mom might be. She was very non-committal. I asked her about the psychiatric nurse that she had told me would be visiting to decide if Mom needed medication for clinical depression. She said that since there was only one, she probably had not gotten to us yet because of a busy schedule. All Mom's vital signs were still good although she now had been off medication for 10 days. That afternoon, the psychiatric nurse called to schedule a visit for the following morning.

Tuesday, she and I spent almost an hour talking about Mom privately. During the course of the interview, she told me that Kathy, Mom's hospice nurse, has an uncanny knowledge of when a patient is close to death from her years as a hospice nurse. They often see the same patients and Kathy would let her know that she shouldn't have bothered. Linda, the psychiatric nurse, would be shocked, saying that the patient looked fine to her. In one particular incident like that, the seemingly stable patient was dead within three days. After she spoke with Mom and me for a while, Linda left saying that she would meet with Kathy and determine whether they thought Mom needed antidepressants. She asked me whether Kathy had given me any indication of the seriousness of Mom's condition and I told her that although I had tried to feel Kathy out, she had remained very non-committal, but that she had immediately shot down my hope that Mom was still reacting to her medication. Tuesday evening, thinking about these conversations, I was convinced that Mom was very close to death and that Kathy probably felt I was not ready to handle the information.

In addition, my niece Jamie called. She is the one with the "little angel" who wrote the very optimistic blog about her grandmother's condition. She expressed concern that we were sending out negative signals to Mom by encouraging her to sign up for hospice and by the way we were caring for her that would convince her that her imminent death was inevitable. I spent an hour on the phone with Jamie mulling over the sometimes subtle differences between encouraging someone to fight for their life and giving them permission and support to give up the fight when they feel it has become too difficult to continue. Each day that we were at the hospital, Mom would look me sadly in the eye and tell me that she didn't know how much longer she could fight the horrible feeling inside her. I think that by the end of the conversation, Jamie understood that we weren't really sure at any given moment whether to be cheerleaders or consolers. Adele called and offered to visit for a while and Saul and I took the opportunity to go out for an hour and have a sandwich together for dinner.

On Wednesday, Kathy came to examine Mom and again found her vital signs good. I was determined to try to get her professional opinion on the death issue. She told me that she had met with Linda and that they had decided that Mom did not need the antidepressant. I told her what Linda had said about her ability to predict and she finally seemed to understand what I wanted to know. As she went out the door, she said to me that it was her opinion that Mom is "not actively dying" and that she should make all efforts to enjoy what is left of her life. She also reminded me that Mom has a heart problem and is no longer on medication for it. Just because she is not actively dying does not mean she could not have a heart attack or stroke in the next five minutes. So could we all as we unfortunately learned with Saul last year. Right before his stroke, he had taken a stress test and passed it with flying colors. When she uttered the words "not actively dying" it was as though a great weight had been lifted off my shoulders. At least I know now that I should assume the role of cheerleader and coax Mom to continue her fight. Kathy told me that it is all right to let her sleep as long as she likes and that she will wake up and ask for whatever she feels she needs to eat or drink.

Today, I was more relaxed and able to get a few hours of work done on the computer. The tension that remains now is finding someone to stay if we want to go and visit the kids for a few nights on the weekend. The situation now is surprisingly similar to having a new baby in the house. Roxy called this morning and asked if I would like a visit. I was delighted to have the diversion and we ate lunch here and spent a few hours rambling on about our lives. We still have many years’ stories with which to catch up. She left at 3:45 p.m. to avoid rush hour traffic on her way back.

Lately, I seem to need a two-hour nap to keep myself going. I left Saul with Mom around 5 p.m. and when I arose at 7 p.m. and wandered down the hall to Mom's room, I was surprised to find our long-time friend, Elaine, sitting on the bed conversing with Mom and Saul. She had called around 5:30 p.m. to ask about visiting and they had not wanted to wake me. When Mom grew sleepy, we continued our conversation in the kitchen over a light dinner.

Haley called in the late afternoon to say that she and Erik had chosen a site and set a wedding date of August 22 next summer. She asked me if I would make the wedding cake and I agreed.

I have really been enjoying reading the entries of my guest bloggers and the comments on those entries. I am very proud of Jessica. I know how difficult and daunting maintaining this change in her lifestyle must be. I have to say that I agree with Ari about being terrified of Sarah Palin being a heartbeat away from the Presidency. The more I hear about her, the more terrified I am becoming and I wish it were otherwise because there are enough other things in my life right now to terrify me. I am just happy for the moment that none of us appear to be "actively dying."

1 comment:

Anonymous said...

Sorry about your mom. You have got to get rest yourself to keep up your strength.

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