I do hope, dear reader, that you understand that I’m not writing these blogs to draw attention to myself. The goal is to inform you about end-of-life issues: how do you decide when your life is over? What do you do about it? Who is there to help? What are the challenges?
The first issue in what makes you decide to quit life is all about quality. Great Uncle Tom’s bed was moved down to the big farm kitchen and put in the bay window where he could see the farm and the cows coming in for milking. My bed is in the little bedroom of my two-room apartment, which is at the end of the hall on the eighth floor of a HUD-subsidized high-rise apartment building.
Uncle Tom lived with his daughter, son-in-law and three children; his other daughter’s family lived across the road, with nephews and nieces all up and down the road. I am estranged from my sisters and have no husband, children or grandchildren. My aide comes two hours a day; except for that, I am alone twenty-two hours a day.
Uncle Tom was a farmer until the day his son-in-law refused to keep lifting him into the seat of the tractor, deeming it no longer safe. I have been a writer since I was eleven years old. Thanks to a hospital bed, a tray table and a laptop computer, I continue to write. I am called to writing as the bawling of the cows called Uncle Tom to milking.
I wake up in the morning and shuffle to the bathroom. I no longer can walk properly, and have balance issues, which means I am at constant risk of falling. Falling is terrifying when you get old; there’s no more “Pick yourself up; you’re okay.” You’re not the least bit okay. Why is it that children bounce and old people don’t? The last time I fell was in the bathroom—that’s where most falls occur—and as I went down I hit every piece of unyielding, unmoving furniture and ended up with a black eye, multiple bruises and maybe a concussion.
What is needed is someone to be present at all times—there always was someone on the farm with Uncle Tom—to put a strong arm around me and make sure I get to the bathroom safely. And there isn’t time to wait; fecal incontinence has become a problem. Of course, you also have to factor in the waves of dizziness and nausea. As Bette David said, “Getting old isn’t for sissies.” And then there’s the shortness of breath from pulmonary fibrosis. The simple exertion of getting up, going to the bathroom, checking the temperature and the windows, and getting back to bed leaves me gasping for breath.
After I’m back in bed, I turn on the computer and Pandora music. It is needed for distraction. I don’t want to know how bad I feel in the morning. The numbness in my fingers is increasingly becoming a problem. I rarely check my blood sugar since there’s no point. Because of the antidepressant damage to my immune system, I can’t take any medications for anything, so the diabetes is just going to keep getting worse, bringing with it headaches, lack of mental clarity, and lassitude. My glucose average is 375 with spikes over 600; it should be under 120.
Bette Midler is singing “It’s the soul afraid of dying that never learns to live.” I’m not afraid of dying and isn’t it better than this? Sick, alone and afraid, with nothing to look forward to? I talked to God about it and he said, “Come on home.” So I went to the doctor and he ordered a Hospice referral. Please note that he cannot order Hospice care; he only can order a referral.
I had previously been told that Hospice would show up within twenty-four hours. Wrong! It took them a week to get here. I had always heard that Hospice is great, but now I realize that I heard it from families who’d never had home health care and were thrilled to get some help. Fact is, Hospice is not for the dying; it is for the living. Hospice does not provide total care for the patient; they provide relief for the primary care-giver.
Because I have been disabled since 1991, I already have in place all the equipment—hospital bed, shower chair, wheelchair, etc.—that Hospice might provide. All that Hospice is prepared to do for me is increase my home health aide hours from twelve-and-a-half hours a week to fourteen. Big whoop. And in the process, they would take away Amelia.
Amelia is the beloved granddaughter that I never had. For nearly two years she has been coming and taking care of me as a home health aide. She knows everything there is to know about how I like things. She is well-trained and works without supervision. At the end of your life, believe me, you want someone like Amelia. She comes in and greets me pleasantly, then chats with me or not, as my mood indicates.
She can keep silent like nobody’s business and that’s a major gift. She waters the breathing machine, makes the bed all nice and tidy, washes the dishes and makes the iced tea. Because of the kidney disease, I drink half a gallon of iced tea each day.
My mom’s recipe: first, fill the pot with water up to the stain line (that’s half a gallon), then bring it to a boil with a lid on to cut down on how much energy has to be used (and therefore cut down on the National Grid bill). When it comes to a boil, take it off the burner. Stir in a rounded quarter-cup of Splenda. Add ten decaf tea bags and two flavored herbal tea bags. Let steep until cool enough to squeeze out the tea bags or, as my sister observed, anywhere between forty-five minutes and twenty-four hours. Finishing the tea was low on my mother’s priority list; raising five kids was high.
This is the iced tea I’ve been drinking all my life and Hospice plans to take it away from me.