Moving towards Palliative Care

Dear Bill,

            Thanks again for your sweet message yesterday.  Last night, back from John Muir, I fell asleep before I got to bed, and I dreamed of you and Tom, and thought, “Oh, friends to talk to!”   So talk I will!  Yesterday was such a long day.  Before I left home, I wrote my own Advance Health Care Directive, which I copied from one Tomi Cunningham had me sign as a witness for her before she stopped speaking to me altogether.  Then I headed for John Muir Hospital in, appropriately, the rain. 

Kathy, Suzy and I were one too many, so we had to rotate and take turns being with Mom, who really wasn’t there. 

Around 10:00 a.m. we saw some “twitching,” but that may have been seizures.  Yesterday’s  nurse on duty, Holly, told us that one side of Mom’s face had fallen, which might indicate that she had had a stroke.  They had told us Sunday that some people come out of the Hypothermia Treatment able to say what date it is and that Obama is president, which may have begun my fantasy that Mom would come out of Hypothermia Treatment free of Alzheimer’s.    Remember the husband of the bipolar woman in Next to Normal?  He wanted her treatment to lead to “better than before.”  But Mom has never regained consciousness at all.      Kathy, Suzy, and I talked about Mom’s Advance Health Care Directive, which said not to resuscitate if there was no chance of her living an enjoyable life, and Suzy brought up the play W;t, which she had just seen on Netflix.  Do you remember that play?  At the end, before the professor of John Donne meets her maker, there’s a scene in which the compassionate nurse gives her the morphine and says, “This is for the pain.  You can control how much you need,” and she needs a lot!  Then the doctors see that she’s almost gone, and the nurse has to keep shouting, “No code!  No code.  DNR!”  The heroic nurse manages to save the professor from being saved by the doctors.  I was starting to worry that my mother wouldn’t be saved from medical interference—that in spite of her Advance Health Care Directive, she would come out of the hospital paralyzed and aware only that she had been betrayed, her wishes not respected.

            Then yesterday afternoon we kept waiting for the doctor who makes the rounds because the nurses, always wonderful (“No code! DNR!”)   can’t tell us certain things, and Holly said she couldn’t tell us when the doctor was coming because when she’d asked in the past, she’d been reprimanded.  All she knew was that he was in the building. 

            Around 3:00, when there can be no visitors, Kathy left to go home and feed the dog, and Suzy left for the day.  I asked that I be called if the doctor came while I was in the waiting room, and of course, that’s when he came.  But he was kind when he said, “It’s sad, but….” 

            I told him about Mom’s Advance Health Care Directive, and he told me that we could meet with Palliative Care.  He said more than once, “This isn’t a decision you’re making.  It’s the decision your mother made,” and I guess that was to keep us from feeling guilty, but I think I’d feel guilty only if I didn’t respect Mom’s wishes.  Still, it’s a nice practice to relieve families of any such guilt.  Then a nice social worker came in and she said that her mother also had an Advance Health Care Directive, but she, the daughter, would never be ready to say goodbye.  I felt that I was ready.  I love my mother.  She was the kind of person who inspired at least one grandson to write an essay on living life to the fullest and using her as the model for that.  Even at Aegis, she was kind to people, concerned about their feelings.  But I’m glad that she doesn’t have to go back to the hospital.  Unless there’s a miracle tomorrow—or someone holding out for one—we’ll meet with Palliative Care and talk about what we want for our last minutes with Mom, who’s no longer there.  I’m going to bring the afghan that she knitted me.  I’ve already propped the invitation to her 90^th birthday on the wall above her chart in room 240 of the CIU unit.  I’ve re-read sections of W;t and the line “And death shall be no more; Death thou shalt die.”  My sister said there was only a comma, indicating not a comma splice but the temporary nature of death.  I think my mother, unlike the John Donne professor, had Grace before she choked on something else, and I hope her future is bright!  A lot—if not all—of her past was, and even the part of past that was fraught with difficulties certainly doesn’t diminish her.

            Love,

            Tina