Jul 29th 2008

Hospice Journal (2): Inner lights

Posted in Izzy, Marion

July 29, 2008 – I am much affected by my hospice work with Alzheimer’s patients. It is so different than I expected. I resisted it, to be honest, and didn’t really want to spend that much time with people who were losing control of their minds, as that is especially frightening and disturbing to me.
  I did it, but it was perfunctory, and I was uncomfortable. I remembered thinking once that these wards were filled with deranged ghosts, shells. That is not so, and I see that now, and am grateful that this  shallow notion was changed.
  Everyone in hospice lives on the edge of life, often isolated and struggling with so many realities and decisions. 
  But people with this disease are sometimes isolated in an especially visceral and lonely way, as it is so easy to leave them off by themselves. Nobody should die alone, but sometimes, the loneliness in this ward is something you can put your hands on.
  But in the Alzheimer’s ward, which is familiar to me now and a very comfortable place to visit, I feel as if I am moving through a sea of spirits, some angry, some fearful, some loving and rich. They are very happy to see Izzy and I, and reward us with much love and attention. In all of hospice work, there is this feeling of deep appreciation, and that is the payoff, really. You never feel more appreciated, anywhere in your life, no matter what you do. In Alzheimer’s work, this appreciation is almost never stated, but it is felt.
  I watch the nurses, who make little money, and work hard, and who project a loving and energetic affection that is inspiring to me. They know how to get through.
 You can get through if you want to get through, and you just have to believe you can. These people know me now, clearly, and they surely know Izzy. I have a bunch of girl friends, and they love attention and are affectionate and generous, and when I punch in the codes  – doors are aways locked – it is with a sense of anticipation, relief, exhaustion,  moving from one reality to another. It is hard work. It is worth it.
  The people I meet there have rich stories to tell, of their homes, their children, their husbands and wives, their dogs and memories. These stories come out in different ways, and you really have to listen, and react. Sometimes it doesn’t quite work, sometimes it does.
  I believe in stories, they are my life in a way, and I know that they are everywhere, in all of us. Especially on the edge of life, where they are important in a particular way.