Marvelous thread, and my thanks to all contributors. My mother is heading toward death now, at age 80. Not quickly, but slowly. She is adamant about remaining in her home, without live-in help. Yet she cannot walk without a walker. She has just had her second major fall in a few months, and this time spent 12 hours on the floor until she was found the next morning by a caregiver.
She avoids doctors, until a crisis like now forces otherwise. She has outlived her own parents by some fifteen years, and is astonished she is still alive. She tells me the last thing she ever wanted was to be a burden to her two children by living this long, or by going physically downhill.
My sister and I love her so much that it hurts, but unfortunately my sister lives in an untreated schizophrenic world, and so I am the only rational person able to take command of caregiving options -- options that my mother often refuses.
In some sense she even has the right to refuse such help. The moral right, I'd say, and certainly the legal right. At times she views me as being intrusive (I worry that I am not intrusive enough!), and yet she is too feeble to make decisions about herself, or too frugal to pay for care which she could indeed afford. Maybe the next time my mom falls it will spell the end of life in her beloved home of 55 years, and she will be forced to move to an assisted-care facility. Or maybe her fall will result in a broken hip, often a prelude to death in the elderly.
Worse, I live in Toronto, my mother in Illinois. Here I am trying to quarterback agreeable caregiving to my mother, and psychological support to my sister, while also trying to carry on with my professional life in Ontario. Very difficult.
Neither of them has a computer. Fortunately I am a phone person, yet the issue of physical, geographical distance is a big one in our modern society. I cannot fly home every week. I left Illinois at age 18, and that was 30 years ago. Many of us no longer live in the same place as our beloved parents. Many of our parents, like mine, believed that their role was to raise us to leave them. (The Latin and Asian cultures view this quite differently than my northern European culture.)
Just the same, it is very hard to shepherd a parent through his or her final stage of life. It is a final role we play as someone's child, and a role for which most of us are not prepared. I am learning as I go here, and just hoping I am doing right by my mother.
Sometimes she is angered by my help, but mostly she is grateful. More than anything my mother is scared at losing her dignity and her autonomy. I am trying to honor both her dignity and her autonomy, but sometimes good care collides with both of those.
This is a very hard time. For my mother and for me. Neither of us knows whether it will last a few more months, or a few more years, before she passes away. My Toronto worklife is suffering. My personal relationships are probably suffering. A good psychotherapist helps me cope.
In some ways I wish I could be with my mother in person much more, but she really would not want me around, or want me to stop my life. So I fly to Illinois as I can, and stay connected daily from Toronto.
To call this chapter of my life a "challenge" sounds like something from Dr. Phil. I prefer to call it "shitty."
But she's my mom....and so I carry on with all of this, learning and making mistakes enroute. I believe everyone on this board understands what I mean.
Einar
P.S. There's a fine little book on tending to the dying, written by Dr. Rob Buckman of Toronto's Sunnybrook Hospital. It reminds us that tending to a loved one through their death is as noble a pursuit as there is in life. It's a paperback that came out maybe 10 years ago, but I have forgotten its name.
