The long goodbye
June 7, 2013
My mother would be mortified that her existence has come to this: someone waking her up to change her like a baby, dress her in shapeless unmatched clothes and put her in a wheelchair to ceremoniously wheel her directly across the hall to the dining room. It is set with lovely dishes and tablecloths and they feed baby food into her toothless mouth. She doesn’t communicate and she doesn’t recognize the same staff that has been giving her care for years. It has been more than two years since she recognized me.
This was her first anniversary of being in hospice care and now her fifth year of being in the terrific caring home for dementia. They call it the Memory Care Center, but I have yet to see any patient recover any memories. But they have always treated her and all the patients with great dignity. Which is ironic, since their very condition is one of diminishing personal dignity.
I visit her because it seems like the right thing to do make certain they are still caring for her. But each visit becomes increasing sad and difficult.
"Did she recognize you this time?" my friend asks kindly. My friend has not had a parent with this disease and wants there to be a different outcome. "No," I explain simply, softly. "She did not." And then I say to myself, "and she won’t." No one gets better from dementia.
My mother was not a great mother, but with enough time and distance I can admire her pluck and recognize she was quite the character. She dressed every day as if she was going someplace. Always with rings on many of her fingers and earrings and necklaces and, most often, in backless high heels. Makeup overdone and hair a cap of curls. She had furs and feathers and hats. More than 500 hats, by the time I cleared them out of her house. Hats in old-fashioned hat boxes, hats on hat trees a forest of them. Hats in closets and hats in plastic bags in the shower of the bathroom she never used.
She bought very few of the hats. Once folks knew she liked them she was gifted hats. She lived in a small town in the Bay Area and, as the older women in her town died, folks would often think, "What should I do with my great aunt’s hats? I’ll give them to Jeanie." So her hats ranged from sequined ball caps to antique feathered creations. She always left the house in a hat. It was ridiculous and embarrassing. She became known at The Hat Lady. Kinda like The Cat Lady. Not something one aspires to.
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She had managed her money carefully and paid for her house, in cash, in the ’60s. When my half sister and I sold that house to pay for her care five years ago the market had not yet fallen in the Bay Area. The house sold for right around a million dollars.
Every bit of that money is gone now. Jean’s health care alone has averaged around $175,000 a year. For all the things she managed well in her Scottish nature, she did not buy long-term-care health insurance. She had some savings also and those are paying for her care now. I don’t know what happens when they are gone. They tell me she has maybe weeks at the most months to live. When she entered the facility five years ago, they told us then she had about six months to live.
My half sister is no longer here to help me with this care from afar. She lived in Oregon and passed away two years this week. She was eight years older than I and had a lifetime of bad behaviors that finally caught up with her. I miss her and I’m kinda mad at her for leaving.
When you are a caregiver from a distance, it carries a fresh layer of guilt and confusion. You feel you are never there enough. And once you get there, you remember why it doesn’t matter. You have provided the clothes needed every few months, and since your mother can’t read or watch television, nor does she have any interests or hobbies any more, there is nothing else for you to provide. Because of her diabetes, she is not allowed sweets. You send flowers plants, really periodically, and you realize you do that mostly for the nurses. And complicated guilt. You show up and the tiny apartment-feeling room with paintings on the walls and wood dressers looks exactly the same as it did months ago when you last were there. There is an orchid plant (Easter? Mother’s Day?) dying on the window ledge. And your mother is sleeping, always sleeping now.
My mother never wanted to be anything but pretty and very, very alive. She had planned that she would die by age 84, and her finances were structured so that would happen, and her two daughters would have cushions left for them. She never wanted to live anywhere but the same house she had been in for 50 years.
I recently read an article that said 40 percent of all money spent in this country on health care is spent on the last six months of life. We have it all wrong. We need to reexamine how we exit gently into that good night, instead of prolonging care that few honestly care about having for themselves.
So I am home now. Exhausted in a way that can’t be explained. When folks know I was out of town but not why, they ask, "Did you have a good trip?" And they mean well. But there are no good trips back to the town I grew up in. There is only the long goodbye. Which I am gonna try to shake off by planting something very alive in my yard this Sunday in the Park …
Teri Orr is a former editor of The Park Record. She is the director of the organization that provides programming for the George S. and Dolores Doré Eccles Center for the Performing Arts.