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

Letting People Know Mom Might Be Gone

The e-messages I exchanged with Kathy and Suzy and sometimes shared with Jonathan don’t really reflect much of what was going on that was not Mom-related.  In February when Kathy and I took Mom to be “evaluated,” I was going through an evaluation of my own—the routine every-third-year one we instructors get at City College.  I was getting the results of my own evaluation (good, I’m happy to report) at the same time that Mom was moved to Aegis.  But in the fall, as we were preparing for her 90^th birthday, I was taking 15 units of courses on the Middle East on campus for my sabbatical. 

When we were attending to Mom and waiting to find out whether there was any hope, I had to let my instructors know why I wouldn’t be in class.  Their responses differed a lot.  Abdul was the most compassionate, explaining that he, too, had been in a situation in which he needed to consider a family member’s advanced care directive.  As a teacher (as well as a human being, haha), I hope I always remember to take time to express sympathy and not just get on with the business at hand.  Abdul’s warmth and concern meant a lot to me.

I also wrote to close friends to let them know.  Betsy, whose mother also had Alzheimer’s, was the only friend who had gone with me to see Mom, so I let her know and got a sympathetic response that prompted this one.

Dear Betsy,

                Thank you for your messages.  Yes, I’m sad, too, that Mom didn’t make it to her ninetieth birthday.  I thought that would be her “closing” and she was looking forward to it even though she sometimes qualified our plans with, “If I make it that long.”  I also think choking is not the dream death.  Remember how Peggy Doherty’s mother died, with three generations in the room for a New Year’s Eve celebration?  She just fell asleep.  (Please correct me if I’m wrong.  I collect good deaths, and I want to get the details right!)  Yesterday afternoon, the “hospitalist,” the doctor who makes the rounds, said, “It’s sad, but…” and we set up a time to meet with palliative care so that we can say goodbye to Mom, who probably hasn’t been with us since Saturday night. 

            Just the same, there’s something comforting about being with her in physical form even if she’s not really there.  I think our sweetest moments these past two months were when we’d lie down together on her bed and just cuddle and sing.  I really wanted to do that at John Muir, but there are too many tubes, and until yesterday, her body was too cold.  Still, I was able to hold her hand, stroke her hair, and imagine that she was there.  Today we’ll probably say goodbye.

                Thanks for your kind, reassuring words.  And thanks, too, for having gone to visit my mother with me.

                Love,

                Tina

Excerpt from Letter to Two German Doctors I Met in San Francisco

            Right now John Muir Hospital in Walnut Creek is trying to extend the life of my mother medically.  She choked while eating dinner on Saturday night, and even though they were able to unblock the passage and resuscitate her when there was no pulse, she arrived at Emergency without any brain activity, and they began what you undoubtedly understand much better than I do, Hypothermia after cardiac arrest, and this morning mother may "come to life" again.  She had stated in an Advanced Health Care Directive that she didn't want heroic means to be used if it meant living in a vegetative state (though I don't think those were the exact words), so I hope that there is a miracle.  I fantasize that Mother's brain will be fully restored, and Alzheimer's will be gone.  But I know that's not what's going to happen.  Before the choking incident, my best moments during my visits with my mother were when we lay down together on her bed and just sort of cuddled--and sang at the same time.  Not lullabies, but show tunes.  Things from our American Musicals like South Pacific, Oklahoma, and Carousel.  I'd start singing and mother would start singing along.  Her long-term memory was/is good, and I don't even know what tense to use because I don't know whether she's really there.  I just want her to have/have had a good life (which she did until recently) and have/have had a peaceful passing.  She told me a couple of years ago that she thought she would live to be 90, and we were planning her 90th birthday for October 22.  It was going to be a sing-along because Mom can/could still play the piano.  There were things she wanted to say to friends and family on that occasion, so it's fortunate that she didn't leave much unsaid.  I mean, she expressed her love.  But like all of us, she wanted a peaceful death, and choking doesn't qualify.  When I saw her yesterday and the day before, I wanted to lie down beside her again, but there was too little space, too many tubes, and her body was so cold.  She wasn't really there.  I don't know what we're going to see today, in just a few more hours.

            I hope this letter isn't depressing.  I don't mean it to be.  I'm sad about my mother's recent experience, but like your mother, she lived a good life, affected people in a really good way, and whatever happens next, I know it's true that "With a death, a life ends, but a relationship continues."  What's hard to face is a violent death or a lifeless life.

                       

To Dana about Mom, Who Never Asked to Be Put on Ice

Sunday, October 09, 2011  E-letter to Dana

Hi, Dana~

            I know that tomorrow is your birthday, and I wanted to give you a better gift than this bad news!  I just got back from seeing Mom (and seeing is all we can do; she can’t respond—can’t breathe because her brain isn’t working at all), and Kathy came too.  As I told you in the earlier e-mail “reports” that I forwarded, one of the comforts for Mom and me is “cuddling,” but I didn’t try that today, what with her body being so cold as well as attached to machines, and tubes being attached to her.  The staff is really nice—very caring, very encouraging of our staying there, insisting that we’re not in their way as they work around us. 

            When Suzy contacted you, did she send the article about therapeutic hypothermia?  Mom’s undergoing hypothermia after cardiac arrest, but as I say, she’s not breathing on her own, and there isn’t any response or brain activity. 

            {Here I repeat a lot of what I told Jonathan, so I’ll omit it.}

            If I remember correctly, you said you wanted to be put on ice if anything happened to you, so your body would be preserved until they found a cure.  Do you have an Advance Health Care Directive to that effect?  Maybe that can be my birthday gift to you:  I’ll send you the form, and you can fill it out. 

            In the meantime, I’ll send you Mom’s invitation to a party we probably won’t be having—at least not on the 22^nd, but it’s possible.  The nurses told us today that it’s possible that Mom will come out of this with full brain function—as full as she had before she choked last night.  But we didn’t have the courage to ask, “And what are the chances of that?”

            Tonight at 10:00 PM, they begin the cooling down.  By 10:00 a.m. tomorrow morning, Mom may be responding, so Kathy and I will be there.  By tomorrow night at 10:00 PM, we’ll probably have a prognosis, if that’s the word.

               

Love,

                Tina

PS  Two things to your credit:  You suggested coming earlier than late October for fear that Mom wouldn’t make it that long.  I think that was just minutes before you slipped on the stairs and hit your head!  Also, you expressed an interest in the picture of Mom as a beach babe.  You’ll see it on the invitation, though not center stage.

Brain Dead Therapeutic Hyperthermia and W;t

“And Death shall be no more; Death, thou shalt die.”

After midnight on October 10, 2011, about the night before

Dear Jonathan,

            I’ll start with the sad news.  We visited your Nani last night at John Muir Hospital, but I’m not sure she was really there anymore.  We should know more in 48 hours.

She’s undergoing therapeutic hypothermia after cardiac arrest, but she’s not breathing on her own, and there isn’t any response or brain activity.  (Is it possible that there isn’t any brain activity?  How could that possibly be without her being declared dead?  That must have been a misunderstanding!)

            I had the invitations ready to give to Kathy at noon after I saw Mom today.  But I got a call from Sarah Jane, the nurse and head of Aegis Living a bit after 6:00 PM. last night. She said that mom had started choking on her food, and it was about the time that she, Sarah Jane, was going in to the dining room to visit.  Mom had removed a denture but there was clearly some food still blocking the passage, and she was having trouble breathing.  Sarah did what she could to help Mom, and they called 9-1-1.  When they got there about four minutes later, Mom had no pulse, but they were able to resuscitate her; she still couldn’t breathe.  They took her to “the nearest hospital,” John Muir.   (Kaiser is really closer, it turns out.)  I called and talked to the doctor, who told me Mom would recognize me—she wasn’t responding at all—but that I could come in.  He also said they were doing everything they could to keep her alive but needed to know her wishes, and I told him that she wanted everything possible to be done unless there was no possibility of getting well, no brain function. Kathy, Suzy and I met there last night.   We got to see her, but of course that was of no comfort to Mom—maybe to us because I feel that there’s something about the physical presence that I need in addition to all the things that can’t be touched.

            While we were waiting for them to let us see Mom, we talked, and Kathy said she’d seen Mom earlier in the day, and she’d been in pretty good spirits.  She made some comment about Kathy’s hair getting white but didn’t think Kathy’s getting it dyed purple was a good idea. 

            Suzy said that she (Suzy) had recently seen Emma Thompson in W;t and thought it was wonderful.  I told her that you and I had seen the play.  Did Mom go with us?  Did Kathy?  I know we were with them afterwards.  Was that in 1999?  Suzy remembered the line and the punctuation of the John Donne poem, “And death shall be no more, Death thou shalt die.”  It was just a comma, meaning that death really wasn’t such a big deal. 

            This morning, so I could tell you, I looked through W;t again.   In the play in print form, Vivian, the John Donne professor re-assessing her life, teaching,  and the meaning of John Donne, says, “And Death—capital D—shall be no more—semicolon.  Death—capital D—thou shalt die—ex-cla-mation point!”

            I’m glad you have your ticket.  My feel is that Mom’s 90^th birthday party may be her memorial service.  But you never know.  As I was crossing the Bay Bridge last night, I thought about the times I’d crossed it after being told that David might not make it.  Then he did.  I think the doctor told us that hyperthermia after cardiac arrest was to see whether, once the body was heated up again, some brain activity would come back. 

            And on the subject of David, Suzy saw him yesterday or the day before and he, without any prompting, asked when he would see Mom.  (I’ve been telling him that he will.)  We had plans to bring him to Aegis, maybe to the garden, on Mom’s actual birthday.  It makes me sad that that will probably not happen.  She’s also asked about him.