. Monday, July 26, 2010 Dear friends, Last Tuesday I wrote (as I tried to start this update): "I thought she would fade along with her interest in her beloved things of life -- her engagement with beauty, nature, music, news, and ideas remaining or fading at the same rate as her presence here. But something else is happening. Her interest is fading before she does. Music, ideas, and news don't seem to have any impact. 'I don't know what's happening to my body and my mind,' she says, and can't explain what she means. The Mystery closes in around her like a fog; those of us who think of ourselves as outside of it cannot see clearly in and she cannot see clearly out. More and more, she is in her own world now, alone with her body (with its drugs, symptoms and needs) and the Mystery." But then our friend Sarah Fowler came for the afternoon and, much to my surprise, Karen engaged with her quite well. She chewed-and-spat her dinner again. Then my friend Faith Gillman visited bringing organic grape juice for Karen and oat bran for me. Faith recently returned from her New Zealand home to be with her family and with her father as he died. The three of us talked for about an hour. Later, Karen and I realized we've missed the 2:30 phone appointments with her chi gung healers, both on Monday and Tuesday. Everything changes so much every day it is hard to keep track... Wednesday morning Karen wanted to do more of her daily self-care without my help so I sat by, concerned and watchful, as she struggled into her wheelchair, wheeled it into the bathroom, struggled onto the toilet, and then reversed the procedure. The immense difficulty of all that had an immense impact on her. Soon she was sobbing that she didn't know who she was or what was happening. The hospice nurse and chaplain stopped by. They noted that disorientation and confusion are very common aspects of the dying process as people's bodies and minds move into states that are extremely unfamiliar to most -- and that Karen was choosing the conscious path to dying, not blurring it with drugs, and that path can be unusually rocky and confusing. The chaplain said that often saying a goodbye to people helps, and there are many ways to do that. Karen was upset that she didn't have energy to say goodbyes and that her friends will not forgive her for not saying goodbye. I hold her that everyone who has been following her on this journey is with her, and no one will think there is even anything to forgive. Wednesday afternoon Karen was especially concerned with her disorientation around time. I got a new battery for her "broken" clock that turned out to not be broken at all, and it worked fine, so she was very relieved. Our friend Kisha arrived from the Bay Area at around 2 pm (to stay for about a week) just as I was making big-letter, big-number calendar day-signs out of quarter-sheets of paper, to hang by Karen's bed so she can know what day it is. Kisha and Karen talked for a bit and then Karen slept. That evening the three of us went outside and talked animatedly for well over an hour about our experiences in different psycho-spiritual groups, comparing notes. Karen was very present and involved. She did her chew-and-spit routine with both lunch and dinner. Her energy was totally different, much higher than the previous two days. In retrospect, it may have been the big resurgence that hospice folks say sometimes happens before the final runway into death. The sore around her tailbone -- which developed from being so thin and sitting and lying on that part of her body, and which had been healing well -- developed two new open sores, so she started sleeping more on her side and using a pillow I bought with the tailbone indentation when she sat in her wheelchair (although it didn't work very well in bed). Later in the week the open sore healed, but the area remains irritated; we put a healing salve on it several times a day. Starting Thursday Karen slept almost constantly, hardly ever asking for any ice or drink (very unusual). Friday morning she needed a CNA (nursing aide) to help her complete her toilet routine by wheelchair. Although she insisted on starting on her own, she found it very difficult to move herself and she complained of nausea repeatedly during the process (while I thought about the two meals she'd had the day before). I watched, ready for whatever, from nearby. In a turn she almost fell out of her wheelchair and I rushed to prevent her fall and get her straightened up again. She was very shaken and had to just sit there unmoving for about ten minutes before she could continue. Given how weak her legs were (she can no longer support herself in any way with them), we couldn't figure out how to get her from the wheelchair to the toilet in the cramped toilet space. So I called a sturdy CNA who is trained in such things and thus managed it well. While Karen sat on the toilet, the CNA prepped Karen's bed with open adult diapers so she wouldn't have to get on the toilet again, with the diapers opened flat because I told the CNA that any kind of plastic and elastic irritates Karen's skin. The CNA then helped Karen move -- one last time -- from the toilet into her bed. So Karen is now set up so she stays in bed all the time. This near-total incapacity seems sudden and portentous after all the previous day's energy, eating, and hours of conversation, including more than an hour outdoors. Framing yesterday as a final resurgence may be realistic, but after so many hairpin turns with her in the last 3 months, I'm not assuming this is her end. Part of me hopes it is, due to my own exhaustion and the fact that her hanging in there is so likely to generate more suffering for her. It is not an easy trip, and she is a very tenacious being. One other indicator of the process nearing an end is that Friday morning when the nurses finally got Karen in bed again she said plaintively to Roxanne, "I want to go home." Written hospice materials note that dying people often use this exact phrase. My own state in all this? I'm mostly pretty tired. After many days of short sleep, I got seven hours solid sleep Wednesday night, thanks to Kisha watching over Karen while I slept with both my ear plugs in. Thursday night I also got seven hours sleep thanks to neighbors near the nursing home who let me sleep over at their place. Again Kisha watched over Karen, who apparently slept all night without waking for water or a pee (a first!). (She is now drinking only about a quarter-cup of liquid a day.) Friday night we found out very late that I couldn't sleep at the neighbor's so I took a taxi home to Walnut Street at 11:40 pm, but only got about five hours sleep. On Saturday I put out a call to my local friends and supporters and Tim Walker lent me a self-inflating twin-sized Aerobed so Kisha and I could both sleep on beds in Karen's room. Installing it required a major reorganization of the room which, happening late at night, delayed sleep once again, and I took the main Karen-watch responsibility, resulting in my getting less than five hours broken sleep. On top of all that, I realized Saturday that the kind of attention required here is very much like what Open Space practitioners call "holding space." It is kind of like the awareness that a parent has for their children (or, even more, a playground attendant, or security personnel guarding celebrities or officials at public gatherings), a kind of constant application of their attention -- sometimes focused, sometimes scanning, sensing the overall field of well-being and danger and the possible need for intervention -- even when they aren't actually doing anything. It can be exhausting. I find myself looking over at Karen many times during the day, checking to see if she's breathing -- quite in addition to leaping up to try to see what she needs when she starts moving or making sounds. (I am finishing this -- I hope, for I've been trying to for four days -- at the beautiful home of friend Liza Robbins and her husband Warren, where I slept last night a ten minute drive away from Karen, who is being watched over by Les and Kisha who have instructions to call me immediately if anything major happens. I slept fairly well last night and had a refreshing shower-bath, and a good breakfast. Liza has said I can stay over some more both before and after Karen's death, to help me recover. Blessings!) For the last two days, at least, Karen has been only slightly responsive, largely immobile, and usually extremely hard to understand when she speaks (usually out of inchoate frustration).* She has had a hard time being willing to shit and piss in bed (not surprising, given the kind of conditioning we all receive very early in childhood, and her usually non-rational state of mind). Kisha and I encourage her and validate her when she does let go; we then just call the CNAs. But sometimes she is very insistent about getting out of bed to go to the bathroom and we have to resist her, sort of juggling her motions to keep her lying down because she can't support herself and we're not able to support her and by the time the CNAs arrive to remove her soiled pads and/or linens and clean her up, she's resigned herself and done it. But once Saturday morning as I went through this with her and told her she needed to stay in bed, she said very clearly and seriously to me (but with eyes closed as she slowly and aimlessly flailed), "You scare me when you say that!" That was hard. But it is now too late to let her always have her way; the risk of serious damage is just too great, especially in her current mental state. And sometimes she tosses in bed, pulling sheets and pillows around, groaning in frustration and generalized discomfort. This is what the nurses call "agitation" and it is handled by the same ABH drug suppository as her nausea (a symptom which has been totally absent for 4-5 days), so we call the nurse for a new dose. Her regular dosage has gone from every 12 hours to every four, with additional doses possible on request. It seems to work. She is on a slightly higher morphine patch (which is replaced every three days) but seldom needs additional morphine for "breakthrough pain" (which hospice says is signaled in an unresponsive patient by a deeply knitted brow). This last week I've spent more time holding or stroking her, sitting in a chair by her bed holding her hand or foot, and occasionally lying with her in her bed (which is way too small to support too much of that). I've set aside the tumultuous Grace and Grit and have been occasionally reading her Marlena de Blasi's "A Thousand Days in Tuscany", a book recommended by Martha, her dear friend in Paris, which finally became available at the Eugene Public Library Thursday when Karen was already sinking into unresponsiveness. There were, however, several signs she was hearing and enjoying it. For example on page 34 Barlozzo, a distinguished local man, is quoted as saying that in the Italian town to which the author and her husband have just moved, the people "all know the truth, that there are only three subjects worth talking about... The weather, which, as they're farmers, affects everything else. Dying and birthing, of both people and animals. And what we eat -- this last item comprising what we ate the day before and what we're planning to eat tomorrow. And all three of these major subjects encompass, in one way or another, philosophy, psychology, sociology, anthropology, the physical sciences, history, art, literature, and religion. We get around to sparring about all that counts in a life but we usually do it while we're talking about food, it being a subject inseparable from every other subject. It's the table and the bed that count in life. And everything else we do, we do so we can get back to the table, back to the bed." I laughed when I read it and said, "This certainly sounds like you." And out of her unresponsive seeming-fog Karen suddenly said, "I could have written it..." So I read on, confident I was being heard. With Kisha's arrival came more movie-watching, always on our computers. She got a bunch more out of the library. We've watched some separately (my most recent: The Last Temptation of Christ) and some together (we watched One Flew Over the Cuckoo's Nest in two sittings Friday and Saturday), sharing earphones so as not to disturb Karen and to keep one ear open to any noise she might make. Movies provide me a way to escape the pressures of Karen-care temporarily without physically leaving the room. However, I've often felt the shift between the movie reality and the real-Karen reality as jarring, even disorienting -- especially when Karen suddenly urgently needs something or someone calls me on the phone, it is like being suddenly awakened from a dream, finding myself here-but-barely-here. I've also occasionally felt guilty -- an unusual emotion for me -- for taking time from Karen and the sacred process of dying to watch a movie. I'm not saintly enough to make Karen's dying process into the fully spiritual, ritual event it deserves to be, filled with quiet, focused, loving presence. Watching movies and my own reactions to doing that -- to say nothing of their often intense content -- are just more odd eddies in the strange flow of this unfolding story... As usual, there is so much more I could write about -- visitors and their gifts; emails from Karen's friends; their help with errands or moving me back and forth; looking forward to a conference in September; ideas for an article on social change leverage; preparing for the day of Karen's death (how to buy time to be with her one last time, while the nursing home will be wanting to hustle us out of her room) and the aftermath; the often overbearing heat of the days; Karen spitting out a sliver of ice (she's never done that before); books sent by Martha that Karen and I didn't get to read together; pieces of unfinished business that keep popping up (although Karen has done well with the things I thought of as most important, especially her strong reconnection with her sister and her very old friend Jerry, among others); a new potential volunteer for the Co-Intelligence Institute suddenly showing up wanting to talk; my lack of exercise; the chance to talk with the friends who are supporting us, often about their lives, our lives, and so many ideas and events filled with inspiration and potential; the fact that the deer has not come back for more apples... -- but it is Sunday noon and I don't know what's happening with Karen in the last fourteen hours (presumably no crises, as I haven't received a call) and I need to get back to her -- and this update is already long enough. Blessings on the Journey and on your loving presence in our lives. Thank you. Coheartedly, Tom * There's been one notable exception to Karen's seeming unresponsiveness -- the response evoked by the tough little earthy-mouthed CNA Barbara. While I was working on this update last night she swept in with her own special brand of no-messing-around love that comes from her tough working class life and deep caring about certain people. She loves Karen immensely -- and Karen loves her -- partly because they both have hearts of gold while at the same time neither of them "takes bullshit from anybody". With a lively loud "Hi, you sweet faced thing! How are ya doin'?!" greeting to Karen's immobile almost fetal stack of bones, Barbara dived in and very busily brushed Karen's teeth as Karen lay almost comatose. Kisha, Les, and I could never imagine doing such a thing. When Barbara finished up and said goodbye as she walked to the door, Karen opened her eyes, smiled, raised her hand and waved to her. Kisha and I sat with our jaws dropped. I see Barbara capacity to bring near-death patients to life as a cross between the wild aliveness of Jack Nicholson's character transforming a mental ward in "One Flew Over the Cuckoo's Nest" and the way Jesus raised Lazarus. Even though Barbara said to me (since I was working on my computer while she was doing all this), "Don't you put me in that computer thing!" I'm afraid I just have to tell you about her. She is so amazing, such a grounded, grounding, celestial light. (She also scrounged several packs of the diapers Karen needs, after other CNAs had told us that the stock room was out of them. She's done that kind of thing a number of times, getting supplies that supposedly don't exist, and she played a role in getting us a small refrigerator into our room, which changed our lives.)