Karen Dies Peacefully
2010 July 27 - 30
Created by Tom on 08/05/2010
Friday, July 30, 2010
Karen died peacefully at around 11 pm last night, Thursday, July 29, 2010, with me at her side.
There were strong signs she was getting ready to go, so I wanted to be near her and aware of what was happening to her in case I fell asleep. The nursing home's social service director Sylvia Nelson suggested that I could push my nursing home bed across the room to be next to Karen's. Friend and colleague Roland Allen and his partner Maria Richards, who visited around dinner time and were present when Karen's breathing changed profoundly (see below), kindly rearranged the room to be as Sylvia had proposed, while I sat with Karen. At bedtime I arranged pillows so my head could be propped up right next to Karen's head, lay down and put my hand on her arm where I could feel her breathing without restricting it. I lay down with her around 10:30 pm and, for better or worse, fell asleep. I awoke at 11:30 and found Karen not breathing, with her mouth and body beginning to cool. Aside from that, she looked exactly as she had when I'd lain down next to her an hour before. Hospice lore says that many people wait until their loved ones leave the room before dying; maybe Karen was waiting for my constant attention to flag before she made her exit. I don't know if that's true, but it fits the observed phenomenon.
I called hospice and Sylvia Nelson and they assured me I could be in the room with Karen as long or as short as I wanted before calling the mortuary to pick her up and packing up all her stuff and moving out of the room. I think I will cool the room down (which slows decay) and be with Karen all night. When I call the mortuary in the morning will depend on how I'm feeling at the time. Then I'll pack Karen's stuff (the nursing home will provide boxes, which will help a lot) and then I'll call up a few local friends to help move Karen's stuff over to her apartment.
(As I was writing this, two CNAs came in and cleaned up Karen and straightened her body out. I'm not sure it was an improvement, but it is part of their process.)
For the last three days or so, Karen has more obviously been engaged in dying. She's been pretty thoroughly unresponsive. Although we've interpreted various twitches and motions as possible responses to things we've said, there is no guarantee these have not been simple projections on our part. We have assumed that she was hearing whatever was being said to and around her but, again, without responses it has been hard to judge how much meaning has actually gotten through. On Tuesday and Wednesday she was still doing mild flailing and wailing (what hospice people call "agitation") several times a day -- a symptom handled by the ABH suppositories or a separate dose of Atavan. By Thursday she was no longer manifesting agitation. Since she was usually quite still and asleep, our attention moved to her breathing. Those of us caring for her watched it closely for signs of change. During most of Tuesday-Thursday she would take one to three deep breaths and then have a long apnea-like pause (the longest I measured was 25 seconds), at a rate that began Tuesday at around 12 breaths per minute, and then leveled off Wednesday and Thursday at 3-5 breaths per minute. Then Thursday evening as I ate my dinner and talked with Roland and Maria, Karen's breath changed radically, becoming shallow and frequent, which lasted, weakening, all the way until 10:30 pm when I lay down with her.
This last week I have been juggling my sleep in all sorts of ways. Monday night I slept at the home of Liza Robbins and Warren Salinger again while Kisha and Les (who came up again for three days) watched over Karen. I woke at 4:30 am having put some observations together in my half-dream state that led me to believe Karen's stomach tube might be blocked. Worrying all the way, I waited till 6 am when I knew Liza would be up to go to the gym and asked her for a ride to the nursing home ten minutes away, where I discovered no blockage in Karen's tube, but lots of gas, which I released. Liza then took me back to her house to sleep a few more hours. I was "on watch" in the afternoon, allowing Les and Kisha to visit the Walnut Street Co-op and Karen's apartment (neither of which Kisha had seen), as well as a museum of Eugene's hippy legacy. On Tuesday night, since Karen's breathing had changed, I decided I didn't want to be away from her at all, so Les and I took four-hour shifts while Kisha and Karen slept.
On Wednesday Les left for a morning flight and Kisha left mid-afternoon for a train. My home, Walnut Street Co-op, had an important evening interview with a prospective new housemate which I felt I really needed to attend, so I arranged for Alice Wilson, our friend and naturopath, to watch over Karen during that meeting and for friend Cynthia Beal to drive me to Walnut Street and friend Sam McMullen to drive me back to the nursing home. Out of the blue, Liza volunteered to take a 9:30 pm to 3:30 am shift, which saved me from a night solo when it would have been extremely hard to stay awake. The first signs of Karen having shallow fast breathing appeared around 10 pm; Liza and Alice brought me the news while I was talking with Sam in the nursing home parking lot. However, when I went inside it seemed to return to the deep apnea-like breathing pattern, so I went to bed, getting up at 3:30 am to watch over Karen and release Liza to go home to bed. To keep myself awake, I watched the video "The Diving Bell and the Butterfly" about a popular French magazine editor who had a stroke and became paralyzed except for his eye motion. With the help of a speech therapist he was able to communicate by blinking in response to an alphabet being read to him, spelling out what he was thinking, letter by letter. He ended up writing (in this way) a whole book about his experience in paralysis, after which he died. The movie is a dramatization of that book, presented from his trapped-inside viewpoint. Thinking Karen might be in that state, on Thursday I tried a few experiments with her blinking or nodding in response to things I said, which gave no result.
Feeling tired and aware of the increasing imminence of Karen's death, I spent several hours Thursday in three or four installments cramped onto the edge of Karen's bed, holding her hand, stroking her hair and face, cat-napping (not deep sleep because of the precariousness of my position on her bed). In the early afternoon I had my first hit of real sadness, crying, sensing the imminent disappearance of that intense energy-pattern that is Karen in my life, the absence of the profound and complex person she has been with me for 24 years. At the same time, I felt how much she has meant for so many other people, including many of you, some of whom have written me letters for or about Karen and her role in your lives which I've read to her (not knowing how much she "got" from that). Late in the afternoon Sylvia Nelson, the nursing home social worker, stopped by to express her profound caring to and about -- and personal appreciation for -- Karen. She and I ended up in a deep conversation lasting almost an hour, in which I answered her questions about Karen's past work and in which she told me "I've been with a lot of people when they pass away and Karen is one of the most beautiful people I've ever met." It turned out that she and Karen had -- unbeknownst to me -- spent many hours together, especially outdoors, when I was away from the nursing home, and had become fast friends. She asked to be called when Karen died, even if it was the middle of the night, so I did that.
So that is the final runway into Karen's journey into whatever new physical and/or spiritual dimensions she may move into. May she not only rest in peace, but her transition stimulate engagement and joy, with echoes all around her of the love she has given and received in her life and, especially, in these last three months. Blessings on the Journey, and tremendous gratitude for all the loving, support, and practical help you who receive these updates have given to her and us.
In Sylvia Nelson's family there is a tradition of putting into a person's crematory ashes something that embodies your connection with or feelings about that person. Burnables -- paper, wood, cloth, etc. -- can be actually included with the body when it is burned. Non-burnables -- stones, jewelry, metal, glass, etc. -- can be set aside and added to the ashes after the cremation. (Such non-burnables can destroy expensive ceramic parts of the crematory equipment, so need to be added later.)
I never thought about all this before and don't think it is in any way necessary. But I'm open to it and since Sylvia asked me to put a piece of jade in for her, I think it is only fair and appropriate to tell you, the people on this list, all of whom are friends of Karen's in one way or another, to feel free to add some small thing of your own if you wish. However, the cremation has to happen within the next week, so IF you want to do this -- and don't feel obliged; I, myself, have not decided whether I will do it -- please send me your offering to arrive by about Wednesday (in the US priority mail will probably work for most locations if mailed early Monday). Also please let me know if you wish to have your object back with some of Karen's ashes.
Finally, if you want some of Karen's ashes (whether or not you are adding anything to the cremation) please let me know right away so I can handle them appropriately next week. I believe Karen will be happy to be spread around (which she already will be, given that most of her will become part of our breathable atmosphere when she is cremated, with only about 10% showing up as ashes). At Karen's request, I am going to be spreading some of her ashes at several natural sites she has specified, as well.
If you want some of her ashes, please send me your mailing address.