. Tuesday, July 20, 2010 Dear friends, (This reports on how things were Tues morning 7/20. My writing was interrupted and things may have shifted during the day, but I don't have the energy to rewrite everything from a new perspective that may or may not in fact apply. I just did some edits to smooth its readability, and now I'm sending it. Today friend Sarah Fowler companioned us for about six hours and Karen engaged more than she has usually lately. Tomorrow our friend Debbie "Kisha" Tanner arrives for a week of companioning us... I will cover Tues afternoon and subsequent events in the next update. But here's what it was like between the last update and noon today...) The new reality is sleep: Karen is getting lots of it, and I am getting little. In an effort to increase Karen's available consciousness, we have adjusted the frequency of her new meds for 12 hours instead of 6 hours. As of this morning it had increased her awareness a bit, but not much. The last two nights I have slept with no ear plugs so I could hear and respond to her plaintive cries (every 20 minutes to 2 hours) of "juice..." or "ice..." or "thirsty...". Needless to say, I've had about as much sleep as a mother with a colicky infant or a soldier in a jungle war. I also stay alert for stirrings that suggest she is uncomfortable, trying to change positions or preparing to get into the wheel chair by her bed to go to the bathroom, an undertaking that requires some assistance to be safe, as she is getting quite weak. She can also use help getting seated back up again in bed after sliding down too far. (A special seat pad I got the help with this and her sore tailbone has been minimally successful; the hospice salve for her sore is more successful.) The re-scheduling of her meds required me to stay up late the last two nights (1 am and 2 am), first to make sure the nurses had gotten the message and would give Karen her midnight dose, and next to make sure that after the suppository went in, Karen didn't get up to go to the bathroom soon after that (thereby eliminating the suppository before the meds got absorbed). This effort to stay up revealed to me the main purpose for all the movies I got from the library for Karen and me to watch: To keep myself awake past midnight! I watched Michael Jackson music videos the first night and "Is Paris Burning?" (a movie about the French resistance to Nazi occupation in WWII) last night. Good quality stuff. But not a replacement for sleep... Karen and I had our latest run-in last night (this morning it seems like several days ago...). Of course it was about the biggest divisive issue in our lives right now: food. After three or four days (I'm losing track here) without food -- except for a bit of chew-and-spit at dinner Sunday night when I was at Walnut St. Co-op and friend Meg was watching over Karen (which produced a minor case of retching), Karen wanted to chew and spit last night's dinner. I said I wouldn't let her and got really upset when she sneaked a quick finger-full of melted cheese off the plate I brought to her (at her request) "just to smell". I was busy treating her like an addict and she was busy treating me like a Nazi -- both of us sullen -- when hospice volunteer Maya walked in. Karen drifted off to sleep while Maya empathetically listened to me (our hospice nurse and a hospice social worker have also proved to be incredible listeners in the last few days) and then gave me an hour-long professional massage, setting up her massage table in Karen's little hospice room. Karen had pushed hospice hard to give me a massage -- something she's gotten two of, but they don't usually give massages to care-givers. Last night she reiterated her request, this time to Maya, with a twist: "Give him a massage so he won't be such a jerk!" The massage was great! I never dreamed that Maya -- who is so mild, sweet, light, unassuming, and hyper-kind -- would have such powerful hands! (She was originally involved with us to do video memoir with Karen, but it turned out she is a massage professional, as well.) I guess my massage worked for Karen's purposes, too. On reflection I decided if Karen wants to eat and risk becoming nauseous and sick from it, that's her business. But I definitely don't want her to die when we're upset with each other. That would be so so so bad for both of us. I told her that last night, but I think she was too sleepy to get it. I told her again this morning, after I spoke with hospice nurse Roxanne (I'd called her last night in the middle of our upset, but she didn't get the message till this morning). Roxanne agreed that this is Karen's journey and we are here to support her and make her as comfortable as possible. Even though she agreed that eating would probably be bad for Karen and that Karen might not be thinking clearly (from drugs, cancer-generated toxins, and bodily systems shutting down), she also agreed that the addiction narrative ("enabling the addiction" vs "tough love") that I was operating on "for her own good" was just not appropriate for hospice care. I also got another heart course-correction yesterday. As I said, Saturday night I had watched a Michael Jackson music video DVD which I'd gotten from the library because Karen loves Michael Jackson. I was particularly struck by his "Earth Song" and "They Don't Care About Us" videos -- the former having a powerful shamanic theme of the destruction and resurrection of the Earth and the latter having a kind of "the people vs the powers-that-be" theme involving the enthusiastic rhythmic participation of hundreds of dancing, drumming locals (and stolid Buckingham Palace-type police) in Rio de Janeiro. I thought Karen would love these videos, and showed them to her when she woke up Monday morning. She did not enjoy them. Mostly she had a dull response, although she really hated the negative imagery in the Earth Song video. I had mistaken the new Karen for the old Karen and my effort at a love offering turned into a message to me that another vital part of Karen has been submerged. It was the hardest thing about yesterday before our tiff in the evening. Karen is not going outside any more. She just stays in bed, sleeping 95+ percent of the time. Last time outside was Sunday evening with friend Meg for about 45 minutes, which apparently exhausted her. The day before that she spent outside in two hour-long conversations with her beloved high school friend Jerry Blackstone -- a link-up I'd been pushing for for months, knowing how important these two have been to each other and that the time had come to connect up again. It worked. And during it I got a few good photos of Karen and her context here. (The photos were taken with my Mac. I haven't yet been able to get my mobile photos off my phone. I haven't been able to download the phone's online manual; friend Liza Robbins downloaded it onto a CD for me -- but my Mac can't read her CD that shows up just fine on her comparable computer!! A bit of Mercury retrograde tech buggishness focused in on Karen's and my world, I suppose...) And also Sunday we were informed that the state fire inspector had come through and had serious criticisms of the nursing home where we now reside. They focused especially on Karen's room here, which had stuff stacked on top of the storage cabinets and a stuffed giraffe on top of Karen's Frida Kahlo altar (nothing allowed 18" from the ceiling) … had some open food (nuts, cut banana, etc.) … had silk scarves blessed by the Dalai Lama hanging from lamp hooks over her bed (well away from the bulbs) … had an extension cord (to charge my computer and phone) and a blender (no appliances allowed). I was pissed, not believing any of it was really a fire hazard, but I'm into complying with authority unless it is an important matter of principle above all other considerations (like my 60s draft resistance), which I didn't consider this to be. Karen, however, didn't want to suddenly move her sacred scarves and didn't think the giraffe was within 18" of the ceiling. Irritated, I tried clambering up to the giraffe to measure its distance from the ceiling (there's nothing solid to stand on here) and in the process, knocked off the large clock Karen uses for her time-orientation, breaking its mechanism. She was pissed and I was frustrated almost to the point of despair. She wanted me to replace it with the exact same clock; but the store I got it from continually gets new products to replace old ones. About half an hour later the nursing home social worker (who loves Karen and arranged for her to have this room and a small refrigerator) came and was very apologetic about the inspection orders, but said it was a new state authority and the nursing home just had to comply. Soon after, Meg showed up and said she'd take the clock and fix or replace it. She bought a new clock, which (when we opened it) didn't work. She fixed or replaced that and brought it during my massage last night. After Maya left, I set the clock, only to discover that it, too, doesn't work. We'll try again, but I fear Karen has entered into a different relationship with time and her clocks just don't work any more. More than anything I'm tired, my energy dampened by shortage of sleep, obsessive alertness, and haunting uncertainty. But I doubt it is any more stressful than the lives experienced by countless farmers, mothers, refugees, unhappy workers, and so so so many other people. I am lucky in that there is a good chance that when the dust finally settles probably a month or so from now, I will have an opportunity to regain my energy and life-space, while so many people do not have such a prospect. Nor do many of them have the remarkable support and loving that Karen and I have -- from Walnut Street dinner which housemate Katharine cooked for me to take with me, to rides from friends Star, Tim and Sam, to the dozens of loving phone and email messages, to Dakota offering her home as sleeping space for Kisha and Les, to all the other people mentioned in this note -- all of whom give us a taste of what the world could be like... Coheartedly, Tom