We fear it, so we don’t talk about it. We hope it doesn’t happen. But, “it” will.
The “it” is death, dying, end-of-life; call it what you want. There are no pleasant words to describe this last stage of life. A stage that scares most people and thus reduces our ability to see it coming. We miss the subtle signs and even sometimes the red flags. Trust me, I didn’t want to think about, talk about or read about death until I witnessed my mother travel through the stages of cancer at lightening speed; totally unprepared to provide the care she needed and frankly deserved.
It is now three years and eight months since my mother’s death and my father’s corresponding move to assisted living — a place where death occurs with some frequency, but is nonetheless heartbreaking. So instead of hiding, and hoping death will never touch my life again, I have chosen to be better prepared. Or should I say, as best prepared as I can be, which led me to read Knocking On Heaven’s Door, by Katy Butler.
This beautifully written memoir chronicles the decline of Ms. Butler’s father from a stroke, then dementia and near-muteness — all while his pacemaker (implanted after his stroke) kept his heart beating for five long years. Reading this book bought back a flood of memories and regrets. My biggest regret is that my mother didn’t receive hospice care during the four months of her illness, which happened to be the last four months of her life. My family did the best we could without training or the foresight that my mother was so near death.
Ms Butler writes that, “half of the people who die under hospice care spend eighteen days or less there.” Eighteen short days. I find comfort that our situation probably wasn’t so unusual that hospice comes much too late, if at all. But I am also shocked and saddened that so many people aren’t receiving the benefits that hospice can provide to the patient and family.
In my mother’s case, the day we learned she had cancer was the same day hospice was recommended. And, to this day, I swear my mother’s primary care doctor knew exactly what my mother’s diagnosis was. But, she never said the word cancer. Instead she recommended, but did not aggressively push for tests, which would have led to treatment, only to have the same end result. I believe she did this out of love for my mother whom she knew could not withstand surgery or chemo.
I also wish my mother, who hated (and, I really mean, hated) hospitals, didn’t get whisked away in the back of an ambulance to spend her final days in a hospital. Ms. Butler writes, “Dying is not an emergency. Emergency rooms, 911 systems, and intensive care units are all primed to prevent natural death.”
I can’t change what happened, as much as I wish I could. But, I can change what will happen. Maybe this acceptance and wisdom are my mother’s final gift.
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