Thursday, December 31, 2009

spikes of lucidity

It is the last day of 2009, there was a heavy snow storm this morning but it's powdery blanket has left the city almost as quickly as it came. I have seen Frankie everyday since Christmas. She continues to be made comfortable by medications and a caring staff, she also continues to deteriorate both physically and mentally. There are moments when it seems she has full mental capacity; she'll begin to say something or ask a question, but these moments of clarity are usually short, and just as quickly she'll trail off and recede into her metastases stupor.

Yesterday I spent a couple of hours with her. We talked a little, I fed her some soup, I read to her a bit, but mostly she slept as I sat with her. When it was clear that she was sound asleep, I left and crossed the park back to the West Side.

At about seven o'clock my phone rang, it was Frankie.

"Hi Honey!" I said excitedly when I heard her voice.

"What's with you?" she said, "why do you sound like that?"

"I'm just happy to hear you sounding so good. How are you feeling?" I asked.

"Sounding good? I feel awful, I can't get comfortable." she said fully alert, " When are you coming over here?"

"I was just there for a few hours today," I said "We talked and I fed you some soup."

"You were?" she cut me off, "Oh God, this is awful, I don't remember a thing. What kind of soup?"

"Squash soup," I said "you really liked it, you ate it all."

"I did? Oh no, that soup's awful!" She responded "This is all so terrible. It's like I'm on a different planet."

And then just as quickly she left. The words became difficult and she couldn't get them out. The nurse took the phone from her and told me that she needed to sleep.

Early on, when I took on the responsibility of being Frankie's health care proxy, I was told that metastases with brain involvement is often much more difficult for the family and care-givers than it is for the patient. The patient can be kept comfortable as the disease progresses, but they often drift into dementia, or slip into unconsciousness and mental deterioration. It can become increasingly more difficult for loved ones who are left to watch this happen. It seems that this is exactly what is happening to Frankie.

Today I was there again and she was much like she was yesterday. Her head remained tilted to one side and her mouth hung slightly open. She drifted in and out of sleep, and the few times she attempted to speak it was difficult and clearly frustrating for her as she couldn't string together more than two or three words at a time. I fed her some apple sauce, moisturized her hands, head, and face, and did some hand-holding and talking. I brought a sandwich with me and ate it in the chair next to her bed. I talked to her about the snow storm this morning, asked if she needed anything, and tried to make her comfortable. I noticed that someone had left a copy of "As Bill Sees It" in her room, so I read a passage from it.

A man appeared in the doorway, his face crinkled in anger and discomfort, resting his weight on a cane, a small woman standing behind him. Frankie looked toward the door and with full force and clear, crisp diction said: "Oh my God, Is that my brother Herman?"

I left the room and sat outside in the anteroom with Herman's wife. Frankie has been estranged from her family for years. I don't know the specifics of their history, nor do I want to, but as adults they have not been part of each other's lives. Herman's wife asked me about Frankie's condition, her prognosis, etc. I gave her brief answers and we just sat as Frankie and Herman spoke in the other room. After a few minutes Herman began to walk back out through the doorway but stopped as Frankie said in a loud, clear voice, "I just want you to know that I love you."

Herman turned around and reentered the room and said to his sister, " I love you too."

The wife took my hand and with teary eyes said, "I'm so glad he was able to say that."

Herman walked back out of the room and said over his shoulder, "Be good"

Frankie responded loudly, "Not much chance of that"

"Well if you can't be good be careful"

This exchange was done in such a quick and steady tempo that it suggested to me this may have been something that they said regularly to each other years before.

Herman and his wife left. The visit couldn't have been more than fifteen minutes, but the arrogant and curmudgeonly man that had entered the room just minutes before left an altered man. The short time with his sister had clearly been healing and transformative. It illustrated to me the importance of closure, and reconciliation, and the power of forgiveness.

I went back in to see how Frankie was doing and she was completely spent. The exchange with her brother had taken all the energy she could muster. I leaned down and asked her if she was alright or if I could get her anything, and she couldn't form words, her mouth made odd shapes and she could produce only weak sounds. I took her hand and said, "That was something, wasn't it?" She squeezed my hand, looked up at me, and smiled. I went out to get her some apple juice to give her a few sips, but before I could tear the paper off the bendy straw I saw that she was sound asleep. I kissed her on the head and left.

Friday, December 25, 2009

xmas morn

It's Christmas morning and for the first time in a long time I am not with my family. I woke up this morning with a dog on one side of me and a cat on the other side of me, (perhaps a personal joke from my Higher Power illustrating that I am not really alone) but no tree, no presents, no carols, no festive breakfast, and no drama. Admittedly I kind of miss all the holiday hoopla. The planning and arranging leading up to this day has always been wrought with drama, and even this year the build up has been difficult. But I'm staying home this year and doing what I need to do, I'm trying to hold steady to a personal idea of Christmas - an idea that what I bring to the table is more important than what I take from it - though the table may not even be where I thought it was.

My friend Frankie is in the last stages of cancer, and she was moved yesterday from an inpatient hospice facility at a hospital downtown to a smaller, longer-term hospice residence across town from me. I went to see her last night and she was pretty much incoherent. She has been heavily medicated for weeks now because of the extreme pain, but yesterday she was medicated even more than usual to make her transfer less traumatic. Frankie hasn't been able to get out of bed for a few weeks and she gets confused easily.

I tried talking with her a little but she was having difficulty understanding me. I gave her a few sips of apple juice, held her hand, and sat with her a while. The new facility is actually very nice. She's in
a rather pretty and small private room on the sixteenth floor with a big window facing west - a big unobstructed patch of sky - perfect for viewing sunsets. I put a few things around the room so that she might feel more at home when she woke up. Then I walked down Third Avenue about ten blocks and took the 86th street bus home through the park. There were crowds of last minute shoppers juggling bags and running into stores. I feel like I'm missing out this year - like something's passing me by, but it's really OK.

I walked Zeke down by the river early this morning. The frigid wind whipped around us as we walked the narrow paths that have been shoveled through the now crusty and hardened snow. I will treat myself to a quiet Christmas breakfast and then make my way back across town to check on Frankie to see if she's comfortable and getting settled in.

I've felt more than a little disappointed these past few weeks - treading new territory, unsupported - the holiday spirit has completely evaded me; no family plans, no trips, no church home, no holiday parties, no special someone to shop for - self pity is a default setting for me in the best of times, when I'm in an emotionally challenging place, and especially during the holidays, these settings have a tendency to get rigidly set and magnified.

If I take a few steps back, breathe, and look at the bigger picture, I'm able to see that this year, rather than being invested in giving or getting the grooviest gifts, I'm putting some packages under a big invisible Christmas tree - a tree of good conscience and right action, a karma tree, or since Frankie's been a practicing Buddhist for years, a bodhi tree.

This morning I'm opening a gift of perspective. As I'm unwrapping it I can see more clearly what it is to be blessed. It is truly a gift to be able to show up for someone who needs me, and though this isn't the way I would have chosen to spend Christmas, I realize that there is a greater Power and a deeper reason for me to examine the vital Christmas message that it is better to give than to receive.

Peace on earth.