2010 May 01 - 05

Created by Tom 10 years ago
. Wednesday, May 5, 2010 Dear friends, After Karen decided not to re-do her unsuccessful "death with dignity" attempt (which was followed by 3 days in a coma at home supported by Les and me), she went to the hospital for five days getting rehydrated and stabilized to decide what to do next. That was pretty successful. We left the hospital mid-afternoon Monday and have been at a nursing home / health care center since then. Karen's ground floor room is quite good: It used to be a double room, but is now a private room, with the second bed there for a guest/family member (in this case me). It has ample storage space, and a private toilet and sink. (There's a couple of whole-institution shower rooms; Karen will be getting 2-3 assisted private showers each week.) Outside the picture window by her bed is a courtyard with a close-by rhododendron, a very large Japanese maple, and two bird feeders (visited more by squirrels and bees than birds). We have heard rumors of deer sometimes showing up here, which is believable because the center is in a very countrified, hilly, wealthy section of south-west Eugene. I wheeled Karen around the grounds late yesterday afternoon for about an hour and she really loved the landscaping (and the black cat that sort of led and followed us at a distance, acting like it was doing everything else). We've had good times and not so good times since coming here. Most of the staff are very caring and take the time to make sure things are right. They show up fairly soon after they're called (although there are more delays in the early morning when demands on them are at their height). The food is fair; much more mainstream than we're used to, and it is taking a while for the kitchen staff to "get" the fact that Karen needs pureed, liquid foods with no lumps (but they are slowly getting it, and Meg and I have been buying supplementary healthy foods for Karen). We're still juggling Karen's drug scene; her drugs to help her sleep and deal with some indigestion pain two nights ago resulted in her being drugged out most of yesterday (with some resulting near-falls), but she's doing better today since we greatly reduced her drugs last night. Right now she's in a bit of a sour mood but is very busy organizing her stuff around her bed, which is a big improvement in her engagement with life. (The mood makes us feel like her not taking her usual antidepressants during the last 3 weeks of chaos may be taking a toll. One more area of life to see if we can straighten out. Given her stomach tube and the fact that her antidepressant prescription is for time-release pills, the answers to this are not necessarily as obvious as they might at first seem...) Karen, who is now under 100 lbs, has just begun a bit of physical therapy (whole-body strength and balance) and occupational therapy (task competence) to recover capacities lost during her long time in bed, in coma, and with limited food and drink. She expresses strong desire to do these exercises (which is new in her life!). In the hospital she got to use a walker, which has really enabled her to move with minimal support to the bathroom. There is still a lot of mystery about her prognosis, especially around the extent of her bowel blockage. It was supposedly total and immediately below her stomach (in the duodenum), but she seems to be doing much better than one would expect if all her food and drink were just passing through her stomach and out the stomach tube (since most absorption happens in the intestines). If the blockage were, in fact, total, then we'd expect her to live a week or two off the IV (that was her doctor's estimate and she's been off it since Saturday). If the blockage isn't total and food and water are getting digested and absorbed, then she could last for an indeterminately long time. Depending, of course, on the progress of her cancer, which is not being tracked right now except through symptoms which, as I said, seem to be sort of stablizing. It is confusing and mysterious. We _might_ be able to get more data from tests, but such tests would not be covered by Karen's Medicaid (which covers all her mainstream care right now) and we'd need a doctor to prescribe and analyze them; we're not sure her current doctor would do that. Pursuing info about the state of her cancer and blockage would put us into a potentially disruptive alternative story (that she might be getting well) which is a scene that Medicaid already seems a bit wary about: Karen is supposedly terminal and is getting some support to increase her functionality (she's not on hospice right now) while she is in the dying process (so she will be shifting back into hospice services when she begins seriously losing capacities; but she'll remain in the same institution and room). Given that she's dying (according to the current story), Medicaid is reluctant to fund things that have to do with possible extension of life (as contrasted with keeping her comfortable). It is a unique, spooky, between-stories kind of existence which adds a lot of complexity to deciding what makes sense next. What a blessing it would be to have a complementary single-payer whole-person healing system!!!! Ah well. We work with what we have. Les, who left a week or so ago to handle affairs back in California, will be coming back to Eugene today and we'll both be SO glad to see him. Although life in this health care facility is nowhere near as stressful as the previous 3 weeks have been, there are still enough challenges and uncertainties to wear us down when we try to handle them alone. There is no substitute for a friend who is immersed in our confusing, changing story with us, helping us cope with constant challenge. If the situation settles down a bit into a more stable, longer-term care situation with clearer needs, we may be able to figure out how others can help in various ways. Right now, all you folks being there and simply caring are incredibly supportive in the midst of the rapids we find ourselves in. Thank You!!! Blessings on the Journey. Coheartedly, Tom