I want to live until I die, and I’ll bet you do, too. But as I get older, I find I’m constantly compromising, and living less of life than I want or deserve.
Here’s a small example. I can’t do the fancy stitches that I used to do in knitting. Why? Because I can’t concentrate well enough and I keep making mistakes. Then the work isn’t up to my standards and I’m aware of it. I can manage all the activities of daily living, and that means I’m not ready for an institution or even the daily support of a caregiver under the terms of my long-term care insurance. But I’m living beyond an age or a capability for what I consider minimum functionality for pleasure.
My parts are wearing out:
- I can’t chew gum anymore because it sticks to my dental work.I loved to chew gum.
- I can’t chew well in general. For example, I can’t bite into an apple, whole. Many pleasures of food elude me.
- I have lots of mobility issues: the ankle with limited range of motion, the foot with the painful callus, and an arthritic knee.
- I can’t put my jewelry on anymore because I don’t have the fine motor dexterity to open and close the clasps on the necklaces. For earrings, hooks are fine, but I can’t handle the posts.
- I can’t travel to far away places anymore. I appreciate the ramps that accommodate those in wheelchairs. But, many hotel rooms that are architecturally approved as “handicapped” are built for people in wheelchairs. I need a walk-in shower, not a tub; outside of certain hotels in the U.S., where can you find these while traveling?
- Hearing loss is very limiting and very upsetting. It annoys other people to repeat for me. If I’m not wearing my hearing aids, I can’t talk from room to room anymore, out of line-of-sight. “Oh, it wasn’t important,” is the too frequent response.
There are a few areas where I feel fortunate today.
Anyone who lives long enough will develop a cataract. Even though I was reluctant to have anyone messing around with my eyes, I accepted the recommendation when the doctor said I should have cataract surgery. I can read street signs unaided now. I can read the caller ID on my Treo, a feat that amazes my friends who are non-technically oriented; “How did you know it was me?” So the vision situation was resolved and restored.
Some people want to live until after they’re dead; not me. You probably can match me story for story with tales of someone who died from too much involvement of the medical profession.
- A man I knew was diagnosed with cancer. When offered either chemotherapy or nothing, he chose the chemo and was miserable for the remainder of his life. It may have extended his life in time, but not the quality of his life.
- A woman with terminal disease wanted to end it quickly; she preferred to end it and make sure her heirsónot the doctorsógot the majority of her estate.
- More than twenty-five years ago, in her early 90s with rapidly decreasing abilities of all sorts, my mother had a wound that wouldn’t heal. The doctors tried a dozen different topical and internal medicines and finally, reluctantly, recommended amputation. We said no, if this will kill her, so be it. She was beyond the ability to take part in the rehabilitation that would be required, and she always had a preference for life of quality over extreme measures. “Just make her comfortable,” was our request. They stopped all medications, and guess what? The wound disappeared by itself.
The point here is the fact that the doctors made a recommendation to keep the body alive, rather than provide palliative care. It’s annoying, frustrating, and depressing. I’m not happy with this downhill slide, and I’m painfully aware of all these losses. What is the limit? I can’t see so well okay, now I see a bit better but I still can’t hear, I’m in pain, and can’t walk so well. When does it stop? When is enough enough? And, of course, the appropriate response is, “Who’s going to decide?”
The subject is dying: when is the time? Who gets to decide? It’s demeaning and depressing not to be able to do what I consider ordinary things, and not be permitted to make the decision for myself about when is the right time to go.