June 1, 1997 -- The Dime, Thoughts of Death,
Things Left Undone

Linda and I visited Mom today. It is cloudy, windy, and drizzly, but we decided to bike over to Mercer Island. We took a sack lunch to eat with Mom.

The Dime We found Mom at lunch, slumped over to the side in her wheel chair, looking three-quarters asleep. We greeted Phil, another Sunrise son, a man of about fifty who was having lunch with his mother, Elizabeth. She is one of my favorite residents. She talks quite a lot, not always making a lot of sense, but always with great enthusiasm and cheerfulness. A woman at Mom's table is usually just the opposite, complaining about this and that and sometimes cursing this person or that. She sometimes thinks I'm someone she once knew. Today she told me, "You wouldn't even give me a dime!" So I reached into my pocket and gave her a dime. I'm not sure it cheered her up, but Phil joined into the spirit of the moment and we all laughed. Phil is one of my heroes in this life of assisted living -- doggedly loyal to his Mom, doing his own best to be cheerful and encouraging. That became a theme of todays visit -- what you can do for your own hostage to dementia? Thoughts of Death Mom seemed in bad shape today. Linda told her about her recent travels, but got no reaction. We were with her in her room about half an hour and she seemed very foggy all the time. Eventually an aid came in to help her into bed for a nap. He told us that Mom seemed to be eating less. I left thinking -- as I seldom do -- of her end. Her heart has been strong, and I have sometimes imagined that she might live another five years or more. In theory, I don't wish her five years of increasingly acute dementia. But in reality, I don't want to lose the chance for those blessed moments when for a moment she is still alive. (A few months ago, I arrived at Sunrise just as an ambulance pulled up, and I heard one rescue worker say to another, "Is this a 'no code'" -- meaning should the person be allowed to die. My automatic reaction was, "Please don't let it be Mom." Someone else's mother died that afternoon.) But today I wondered if I should be more willing to let go. Mom not only looked gaunt and pale, but she looked as if she really has nothing to live for. Things Undone Somehow I felt sad today -- as I often do -- that I have not been able to do more for Mom. More for her in the sense of bringing her good moments. I sometimes feel like the boy in "My Life as a Dog" who wants to do something for his ailing mother, and finally buys a toaster, which he delivers to her in the hospital. His mother has no need for a toaster, and she is too far gone to respond beyond a perfunctory acknowledgement. Of course, sometimes Mom has responded -- as in "How about that?" (see previous entry) But lately she has responded less and less. And I find myself wondering: "Is there more that I could have done to blow up that spark of life?" I think that we have had some great moments during the past several years. I always wanted to challenge her and challenge others who said, she can't do this or that. I took her out to several movies when she could hardly walk or speak. We watched lots of films in her room. We went on drives and she came over to our house for weekly dinners. But sometimes I wish I had been even more adventuresome. When I first moved her up here about three years ago, she was interested in hearing about the journeys we take in our sailboat, which is docked in Eliot Bay, by Seattle. There was never a question of a real sailing expedition for her, but I would say to her jokingly, "How about a cruise Mom," any typically another family member would say (correctly), "Oh, no. Bill's just kidding." But in her faint voice, Mom would say, "Well, just a spin around the harbor." (That was a couple of years ago, and even then a full sentence from her was something special.) With three or four people to help her on deck in a wheel chair, we could have done it. But the circumstances were never just right in terms of weather, helpers, etc. And now even I have to admit that we could not do it. Similarly, I remember that when she first moved up here, one time my daughter and son-in-law and I were having a nice visit with Mom. I think we had watched a film and consumed a pre-dinner snack. By then Mom already had a lot of trouble speaking or feeding herself. But there were moments when she was normal for a few minutes at a time. And in those moments, it was hard for her to remember that she was not normal after all. That evening after palling around with Mom in her assisted living apartment, we told her that we were going out to dinner. (It was about 8:00 then -- her bedtime.) "Can I come too," she said. Somehow that moment keeps eating at me. Of course, she couldn't go. She would have been completely disoriented. So I said that it would be better if she stayed home, and she seemed to check her enthusiasm and remember who she was and where she was. But how heartbreaking to have to remind her. If I could have that moment back now, I would say, "What the hell. Let's give it a try."