Hospice for Karen, Flu for Me
2010 May 07 - 15
Created by Tom on 08/05/2010
Saturday, May 15, 2010
Dear caring people,
Last Tuesday I wasn't feeling particularly well and on Wednesday morning when I awoke at the nursing home I knew I was very sick (a stomach flu had been going around the establishment and I'd apparently caught it). I gathered my stuff and got a taxi for my co-op across town, both to take a healing break and to keep from infecting Karen (who seems not to have caught it). I've been in bed at home 90% of the time since then. Now as in the previous 5 weeks, my co-op housemates have held me with a supportive distance (at my request) while doing an incredible job of dealing with the complexities of keeping the co-op going and healthy, for all of which I am so very grateful.
I've spoken with Karen on the phone at least once a day while we've been apart the last four days. She is on her first morphine patch (a very low dose given continually) and doing quite well. She has spent many hours on the phone in the last couple of days sharing her life story with our SF Bay Area (and old Peace March) friend Les Hollins, who had to go back home urgently Monday after about 3 weeks here supporting us, and who is going to write something up from what Karen is telling him. She had some good phone conversations with her nieces and a few other friends, but she is still husbanding her time and energy carefully and sleeping a lot. Although extremely thin and pretty weak, she is able to get around her room in her walker without assistance (although I worry sometimes), and has had an easier time with her digestive tract recently, notably helped along by chocolate Ensure (a meal-replacement shake). At this point she's feeling fairly spunky not planning to die in the immediate future.
Last Monday morning we had an informative, heart-to-heart, and ultimately hilarious first face-to-face conversation with Karen's new hospice doctor, who Karen was trying to have a brief visit with so she could get to work with Les. But within a few minutes she and the doctor began a remarkable repartee that had Les and me in hysterics. (The meeting also included very serious conversation about end-of-life issues.) It all ended with the Dr standing, shaking Karen's hand, and with the utmost seriousness saying, "I'm so glad you've had a chance to meet me."
Our first visit with the new hospice nurse was pretty much a personality clash disaster, so we asked for a new one and received a great one. I spoke with her on Thursday and in particular asked her about what patients experience when they are doing PRNH (patient refusal of nutrition and hydration). She said it was not particularly painful or distressing, helped on with morphine and sucking on hard candy and/or ice chips to avert thirst; that a person's awareness expands both outward and inward as they become less engaged with their immediate surroundings and drift into a coma in one or two days, and usually die within a week. Karen's already weakened physical condition and low nutritional level would theoretically hasten that process, but her remarkable (I am tempted to say miraculous) durability during the last six weeks makes me suspect it might not be so quick. Once again: Who knows??! (I got an article last week http://bit.ly/bI5lD8 about an 81 year old yogi who said he'd not eaten or drunk in 70 years and, when observed by "a team of 30 medics" with constant surveillance for two weeks, was fine after no eating or drinking, much to the puzzlement and interest of the medics and military. I have half-joked to several people that perhaps Karen has linked into whatever he's linked into...)
I had a heart-to-heart talk with Karen last night and she is very insistent that both she and I focus on moving each day towards "glowing good health". She says she is doing fine (and sounds like it) and that I should visit or call when and as I want but not feel obliged or needing to care for her. She wants me to recover fully from the overwhelm of my full-time care for her and to be prepared for whatever is next in my life. (Sometimes it is hard to know the boundaries between commitment, caring and co-dependence, and where reason and self-care and growth/deepening/transformation all fit in the swirl of wholeness, relationship, differentiation, integrity... In our case, they have been dancing improvisationally for 24 years...)
I am so disconnected from my usual work by now (not only did two months of my sickness and Karen's crisis tear me away, but I consciously chose reading materials during my illness this last week that were intrinsically interesting but didn't relate directly to my work -- sort of -- so far a book on the history of apocalyptic thought and one on the Americas before Columbus, and I'm just starting Mary Shelley's Frankenstein...) that my normally overwhelming worldwork momentum and calling has subsided. There is a very open question of what I should focus on or attempt next when the proverbial dust settles. There is some space in my awareness to reflect, to create some order, to develop health, to develop spiritual practice, and other neglected life-nurturing beings and doings (perhaps, for the world doesn't stop its motion in that time...). At the same time, were Karen to start to die (consciously or not), I would want to be there with her. We came to an agreement that we would do a "one day at a time" approach whose ongoing thread was not "how can Tom care for Karen today" but "what can we each do today to move towards glowing good health", while being responsive to any major developments in Karen's world (and mine).
This does not resolve everything, by any means -- for example, what to do about all of Karen's stuff and her apartment, now being used as expensive storage; or what to tell my work-based email list about what I have been doing when it is time for my next Co-Intelligence Institute fundraiser in about a month. But it does provide a new center of gravity, a new lens through which to view the whole scene as we proceed.
As always, any of this could change at any moment...
As I come to what seems like the right ending for this note, I am appreciating all the kind loving words and remarkable support we have received, and the space you have given us to respond or not when and as life calls us in this remarkably odd, challenging, confusing, deepening time in our lives...
Blessings on the Journey and on your own remarkable paths in it...