Monday, September 21, 2009

Jana on Sunday

RantWoman spent a lovely few hours with Warren and Jana and then just with Jana yesterday afternoon and evening. RantWoman is deeply touched by what a loving couple they are in general and spends occasional moments thinking in an inquiring way about what in particular is most helpful for their life as a couple going through all this.

Here is the text of an email RantWoman wrote about the visit.

Hi All
My name is (RantWoman). I know Jana from the Friends' Meeting. I was just to visit tonight and thought I would send a few comments especially for those among us who crave up-to-the-second news and also because things are changing fast. It is still a long journey but it seems important to be aware of today's mileposts.

Apparently a move to a nursing home may happen this week. There are several choices and which one will be chosen depends on which has a bed the day it is needed. The choices are a place in W Seattle, convenient to no one in Jana's circles that the people who were chatting about options know of, a place in Greenwood convenient to Warren and Jana's, a place on E Madison St convenient to many of Jana's circle from UFM and a place in Seward Park less convenient than the Madison St choice but more convenient than W Seattle.

Jana seems to appreciate friendly conversation around her even though how much she participates varies a little. Also, even though she seems to be getting really good attentive care, having extra sets of eyes and ears helps keep track of and share key pieces of information. This is my way of saying I hope whatever the choice turns out to be offers great care and also turns out to be convenient for some of the many people supporting Warren and Jana.

Often in my experience with medical matters for family if a change in location or status is on the horizon there may be a list of things that need to happen before the change is made. I asked Warren whether he knew of what that list might be and he did not. He also mentioned concern that Jana be getting at least as much intense therapy as she gets during the week at the hospital. I cannot possibly evaluate the intensity of therapy issue, but I imagine that is determined partly by what orders the doctor writes as well as whatever the practice is at the facility.

A thought for those sitting with Jana: sometimes with my family if there is an extra set of ears around when conversations with social workers or discharge planners happen, different people think of different questions. Also, I wonder but did not think to ask Warren whether he wearies of repeating status reports to all Jana's different visitors.

Now to today's visit. I arrived late in the afternoon. A friend from a parenting group Warren and Jana have known since (their son) was a baby had been sitting there; Warren reported he had had a good break and one of Jana's cousins also stopped to visit. When I arrived Jana was sleeping and others were in the hall. After awhile Jana woke up and she and Warren and I chatted. She clearly also knew that F and S had been there earlier and as she put it "the youth had gone."

That is Jana clearly recognizes people, a big advantage of having her glasses. I told her I was glad to see her without her NG tube. I said I had been hearing about her pulling it out and she said "that's what people tell me." Then I just talked a bit about Meeting and some other personal bits.

When Jana started to doze off, Warren went for a walk and I shifted to the chair nearest her bed. From that chair I could see that family photos which previously had been across the room on the wall had been shifted to a wall to the side of Jana's head. Jana's room indeed has a view of Mt. Rainier; however the orientation of the bed and the window mean that visitors are more likely to see it than Jana herself.

Jana was not too talkative at first but she also clearly said she was very glad to keep things lowkey. We listened for a bit as two nurses worked on turning and tending to Jana's roommate. That was one of several moments of peculiar intimacy, not overtly objectionable, but probably not something one would automatically choose to listen in on.

When Warren came back we chatted a bit more about various things:Jana's injuries which include a broken right scalpula and broken rib on the right side as well as her broken left leg, bus service in N Seattle and further north, the nephew who fainted in the ICU, fell at the nurse's station, got his bleeding chin steri-stripped back together, the "incontinent" sanitarium chair, used for wheeling Jana about and also this morning leaking water from having been used to give someone a shower. Fairly soon Warren decided just to go home; we were expecting another person to come sit after me.

Jana dozed for a bit. Somewhere her supper was brought in. Jana eventually woke up again and was sort of rolling around a bit in her bed though not ready for dinner. At one point the person who had brought dinner came in but I had to tell her Jana had not started so please leave the tray. When Jana started poking her good leg out between the side barriers on her bed, I suggested we should call the nurse. Jana has many many friends who are nurses, doctors, pharmacists. And she has friends like me who know how to press the buttom to call the nurse. The nurse came and first the thought was to sit Jana up in a chair to eat. Another nurse came in to help move her. In addition to wanting to crawl out of bed, it seems that when Jana has gotten to get up before she forgets that she is not to put any weight on her broken leg.

Once Jana was transferred to the chair, Jana realized she needed to use the restroom and asked very precisely about this. Jana wanted to know whether that would be possible in either the sitting chair or the sanitarium chair, the wheeled one that must have been the one used for hallway excursions mentioned in previous emails. The nurse said they are still worried about her balance and coordination. Instead Jana had to transfer back to the bed and use the bedpan. In the end after this was dealt with, the nurse sat Jana up in bed and she started on dinner.

Somewhere in here Jana asked me and the nurse where she was; she missed that it was already Sunday but otherwise knew the month and location. Jana also talked about how kind Warren is (yes!) but also how she understands she needs more help than there is at home; at other moments she definitely just wanted to go home.

Somewhere as Jana was starting dinner, she talked about different things that reminded her of the food in hotels in Finland during last summer's trip. She had very clear memories and many of them were similar to my memories from travels a long time ago in Finland: porridge for breakfast, a smell of baked fish, food that is not overly sweetened, wonderful berries. The hospital menu was canned peaches, pureed green beans, minced turkey, potatoes, gravy, thickened cranberry juice, a banana all lactose and gluten-free.

Jana happily fed herself though the peaches did not all stay on the spoon very well. B arrived while Jana was eating and brought very thinly sliced apples K sent from the farmer's market. Jana really enjoyed these and generally said she felt like she had eaten some real food even though for instance the mashed potatoes were not a big hit. B noticed that Jana was wearing a chest brace. Talking to A later I learned the brace is sometimes a problem for eating. if it rides up it can get in the way of swallowing. I also learned that earlier someone had brought Jana Ethiopian food which must have been a treat. When Jana finished eating, B talked about taking the brace off to do some massage. As I was leaving the nurse was due in to talk about the brace issue. It is very good to see and hear about Jana having good experiences with real food. It is very good to hear all the ways she is definitely herself, and as I said at the beginning, there still seems like a serious road ahead. Blessings to everyone who is reading this.


RantWoman left out of her email a couple details: B mentioned that previously when she visited Jana in the evening, Jana was wearing a belt that went around her and around the bed and probably was not terribly comfortable. RantWoman assumes, given the energy Jana at one point devoted to trying to get out of bed while RantWoman was there that the belt may have been intended as extra security on top of the sides of the bed. RantWoman thinks it is probably good but also possibly problematic that Jana is showing so much interest in getting out of bed.

At one point Jana was kind of apologetic about not being very entertaining or wanting her brain to work very hard. RantWoman assured her that if the only decision she wanted to make for the evening would be regular or thickened cranberry juice, that is perfectly fine.

RantWoman also left out some details of what can be described as necessary medical tortures, a topic Jana was decently matter-of-fact and good-humored about, to the point that she sounded comparatively cheerful about explaining to B what the packet of supplies left on her bed was for, the tortures due at some point after dinner.

RantWoman writes this sort of detail for a couple reasons. First, RantWoman definitely does not notice every visual detail picked up by others, but when she reads email about such, she can better pay attention to accompanying issues.

Also, with so many different people sitting with Jana, even when care is good and attentive, handing off info helps all the extra sets of eyes and ears work together.

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