August 4, 1997 -- Some Help, Making the Cut, the Wounds

I am chagrined to discover that there has been a two month's gap in my journal -- there have been events to report and new entries have taken shape in my mind. But I let myself get caught in the trap of unrealistic expectations. One week there wasn't time for the entry I wanted to write for that week; so the next week there were two entries in line with no time to write them; and so on with increasingly large and daunting backlogs. Today I'll break the cycle with a few notable events from the past and an entry for today.

Some Help from Other Family Members In early June my sister-in-law, Cecily Moon, came to visit. She is an artist and the illustrator of one of my books, "American Realities." During her four days in Bellevue, where I live, she and I visited Mom, took pictures, and discussed her adding some images to go with my journal entries. Cecily seemed to draw Mum out more than I have been able to of late. Of course, Cecily had a lot to say, which may have helped. Since I see my mother more regularly, I run out of news sooner. Then too I may have gotten so familiar that I am more a fixture in Sunrise than an energizing presence from some former world. At any rate, her visit was good for Mom. I was also gratified that Cecily helped me see Sunrise more clearly as a complex community of residents and aides. We photographed one of the aids leading several residents in a dance, and she drew this watercolor: (Click the image for a larger version.) I hope to put more of the life of this community into future entries -- as well as more of Cecily's images. A few weeks later my brother Chris came to visit with his and Cecily's eight-year-old son Owen. Again Mom was somewhat more responsive. I'm always impressed with Chris's ability to tune-in right away to where Mom is. As familiar as I am with her, it is still a job for me sometimes. And many people never learn to communicate with their declining parents. Owen was good too -- more than good. He showed an exquisite tenderness to "Granny." He liked to walk her in her wheelchair, and he would chide me when he thought I was walking too fast for her. Somehow he thought it was best for her to move at a snail's pace, and he did. I recall too the solicitude he showed one day at parting time when he kissed her passive face and patted three or four times her withered hand as if in patting he could heal her. Making the Cut A few weeks ago I was afraid we weren't going to be able to keep Mom at Sunrise any more. She has gotten progressively weaker and is no longer able to help her aids when they move her to the toilet or in and out of bed. She has taken to sleeping in a fetal position, is hard to move when it is time to get up, and is at risk for skin "break-down" from lack of movement. Perhaps only a full-fledged nursing home could care for her. The thought of moving her was really hard for me. I like where she is. We can afford it. The people know her. The place is familiar to her. And the director is one of the great good souls in the assisted living business. There is also the time factor. In my experience, working, plus leading a private life, plus overseeing the care of an infirm parent puts one already on the edge of desperation -- there just is not enough time to get everything done. The thought of another move simply plunged me into despair. One morning as we were facing this crisis I just lost it. I told my wife, "God damn it! Mom can never make the cut. There's one woman at Sunrise who spends the entire day walking back and forth in the halls. Another who says "Somebody help me" all the time. But my mom can't even make the cut." Linda laughed and laughed, somewhat hysterically, but her laughter and my outburst helped break the cycle of despair. And we worked things out at Sunrise. Advisors came in from Group Health (Mom's medical provider) arranged for a bedside commode, ordered a custom made wheelchair, and gave the aids some tips on moving her. I suggested to Gail Zink that it might be fair to pay a higher rate for Mom's care. But she would not hear of it. "Your Mom is really hard sometimes," she said. "But at other times she is really easy. She is more calm than most of the residents." That conversation still warms my heart. Gail's viewpoint was honest, professional, supportive. You don't always find rock-solid moral integrity in assisted living providers. But you do in the boss lady at Sunrise, Mercer Island. The Wounds Today was going to be one of those fifteen minute efficiency visits to see Mom. But it turned into a major project. I arrived at about 10:00. A dozen of the residents were in the living room. One of the aids was dancing with three of the women. I liked the way he smiled; he helped make it fun for them. Mom was on the side in her own world. No look of recognition when I sat down next to her. Then I noticed that one of her ankles was heavily bandaged and the bandage was coming off. The skin beneath looked awful; there were several cuts and it looked as if you could just peel the old skin away. Apparently it is common in older people of have very sensitive skin. Barb, the nurse, came over and changed the bandages. In one place her ankle bled, and I held some gauze over it while Barb prepared the new binding. In a few minutes the task was done. Looking at the bars that support the foot rests on the new wheel chair, I thought that probably Mom's feet had slipped and the metal had chaffed against them. So decided to get some padding. Fortunately I had some time, and I could do it right away. I left Sunrise and drove down the hill to the local drug store. Along the way, there were unexpected tears in my eyes. I have many layers of callouses keeping me from grieving continuously about her general condition. It is simply the way things are, but the cuts -- the site of those wounds were something new and poignant. I bought some circular pieces of foam, used I suppose as arm supports for young swimmers, and some duct tape and drove back up the hill. Then I sat beside Mum, took the leg rests off the chair, and began to work at padding them. It was surprisingly complicated. I had to cut, recut, and recut again to get each of the two cylinders ready for each of the two legs. Then I taped each into place making it as even as possible. There were half a dozen people in the room. One was sleeping on a couch, a couple stared into space, and a couple watched me. I am not good in supplying conviviality for the other residents, but I'm working at it. I sang a bit, and whistled, and talked about the work, showing Mom how it was coming and occasionally holding up the legs for others to see. I could not tell whether Mom knew what was going on, but I figured the chatter would not hurt her. After a while she had to go to lunch and another woman came over and sat beside me. We sort of had a conversation. She said she was from Poulsbo and I said I like sailing into Poulsbo. It's lovely with the sea and the mountains. Some of what she said was pretty coherent, but she also wondered if Poulsbo was in the next room. Meanwhile another woman was walking a circular route around the corridor and through the room, while another woman seated in her path was saying again and again, "I want to go home." Each time the walker passed, she would have a comment for the other woman, such as "Be quiet you old fool." The mourner would say, "I am an old fool" and then "I want to go home." One by one the aids were moving people in different states of mental and physical disability to the adjoining dining room. I had a moment's sense of the wonder of these young people who manage to supply some measure of order, humor, and good will in this difficult world. I saw Bin, one of the aids, working with a person who was very hard to move. "It's hard work," I said to Bin, "but you do it well." It felt good sharing that thought -- so much of the time the aids perform their little moment-by-moment acts of grace as a matter of course. She looked pleased -- perhaps not so much for the compliment as for the recognition of who she was and what she was doing. With the wheel chair legs finally wrapped, like goal posts on a football field, I walked into the dining room and left them beside Mom's chair. I kissed her forehead, and tried to tell her I would be back soon, but could get no sign of recognition from her.