If I or anyone told her, she still wouldn’t know it. She’s past the point of understanding or caring.
Earlier this year, Sandra Kay Sheets, ravaged by an untold number of strokes, entered hospice. Now, three nice nurses monitor her all day. They bathe her, change her bedding, administer pain medication and feed her three squares daily. Or try to; Mom loses interest in food after one spoonful.
In the evenings, she picks gingerly at the edges of her bed sheet and mumbles about distant memories, though from what I can interpret, those memories involve times when she was young and vibrant and happy.
She is among the estimated 1.7 million people nationwide who receive hospice care, according to the National Hospice and Palliative Care Organization. However large that number sounds, it’s double from a decade ago as palliative care expanded beyond its original intent of serving terminal cancer sufferers to include patients diminished by other diseases.
My mother entered those statistics because she was in and out of hospitals and rehabilitation centers after her initial attacks, with varying success. Her health trended up and down, but never improved enough for her to regain a clear perception of the world around her. My uncle and I, who share legal responsibility for her care, began measuring her status by the number of moments we thought she knew who we were.
That number is down to the low single digits.
“Hospice care is designed to address the needs of the entire family,” writes Sheryl M. Ness, a nurse educator specializing in end-of-life care, in a blog for the Mayo Clinic in Rochester, Minn. “The focus of hospice care isn’t to treat or cure the underlying disease, but to provide the highest quality of life for whatever time remains.”
Because of that, more dementia sufferers continue entering hospice. By 2011, cancer diagnoses constituted just 33.7 percent of all hospice admissions, with dementia topping the list of non-cancer diagnoses at almost 13 percent of the whole, according to NHPCO findings.
“As the average life span in the United States has increased, so has the number of individuals who die of chronic progressive diseases that require longer and more sustained care,” the NHPCO says in its 2012 analysis of hospice care nationwide.
At first, I resisted putting my mother in hospice, her health decline notwithstanding. For one thing, “hospice” is synonymous with “terminal” in our culture, and I wasn’t ready to ascribe that term to her condition.
For another, I, like most everyone, was inculcated to believe that “cure” and “care” were synonymous, too, and that both extended across the breadth and depth of modern medicine.
But then I witnessed the exhaustion among overworked doctors and nurses at hospitals and the relentless workload at understaffed rehabilitation facilities along each step of my mother’s treatment. I realized then that “cure” and “care” can be exclusive of one another where cost, time and patience force a choice.
So, my mother reposes in a place devoted to her needs, such as they are. She can’t move, so the nurses move her to prevent bedsores. The nurses change the TV channels for her, brush her hair, talk to her, tuck in the stuffed gray kitten I bought because it resembled her own cat.
Her express respite care instructions, dictated by her when she was clear-minded and accepting of the likely course her condition would take, discourage much else.
When I visited her last, my mother looked through me to the reality she selected. At various times, I was her son, her brother, her uncle. One afternoon, she worried about the state of her wedding dress. Another afternoon, she worried about the cleanliness of an outfit I was supposed to wear in a parade.
It took me awhile to realize she was talking about a parade I was in at age 5.
I indulged her and said not to worry; the outfit was clean and ready. She said “OK,” then settled into sleep.
For this birthday, peace of mind was the best gift I could give.
Update: Sandra Kay Sheets died Aug. 20 of complications from a series of strokes.