One of the hospice home health aides (HHA) arrived at a patient’s home. Her to-do list would include bathing a patient with more than eighty candles on his cake. Let’s give our HHA a fictional name like Fran. (That is my mother’s name, so I’m openly providing a clue for my good thoughts about this part of the hospice team!)
Soon, the bath was underway.
“About how much longer do I have?” the patient asked. (And let’s say his name is Arturo.)
I don’t know if this was Arturo’s first bath, or if Fran had given him a number of baths over the prior weeks. In hospice, the aides are a critical part of a patient’s care. They do the grunt work of supporting the patient when he or she is most vulnerable: showering or bathing, brushing teeth, commode duties, and helping ensure there is safe movement from a wheelchair to a bed.
Maybe a patient is incontinent with bowel or bladder. Some patients complain often, others make every visit a delight. In certain homes, the patient’s spouse, adult child, or other family member is the primary caregiver and dreads making a mistake. The HHA will teach—a literal show and tell—the most efficient ways to accomplish the simple tasks for a loved one. The tasks of caregiving, however, are not simple. Any idealistic thoughts about how great it is to support a dying loved one at home can quickly change with the actual day-to-day demands. Caregiving is hard work. A good HHA will try to make the family’s “job” less stressful.
When a patient takes a bath, naked as a newborn, he is vulnerable. When a patient begins to trust the HHA with her failing, fragile body, she more easily reveals fears about living or dying. He or she might share childhood tales or family memories. She or he might talk about an ancient guilt or a recent regret.
And many times, patients will ask questions like:
“About how much longer do I have?”
According to Fran, her reply was, “It’s hard to know. The doctors and nurses can make guesses about when people will die, but they never know for sure. Everybody is so different.”
Fran ceased her scrubbing motion to make sure Arturo noticed her gentle smile. She wanted him to be confident that she was on his side, and that she knew this was an uncertain time of life.
“No, I mean how much longer for the bath? A friend is visiting later and I wanna be ready.”
Isn’t that one of our most common questions? How much longer? The child yelps from the back seat of a car: how much longer until grandma’s house? The parent asks the child: how much longer will your homework take? “How long will this birth take?” a woman cries in the first or tenth hour of labor. Time goes by so fast! And time can be like the slowest of slow turtles.
I recall playing tennis with a friend. Out in the early morning like us, an elderly couple was engaged in a match in the court nearest the fence. Both were easily in their mid-seventies and had a rousing game underway. I was impressed. One of our missed shots bounced their way and I hurried to retrieve the ball. Near the man, I asked a version of the patient’s question to the HHA: “How long have you guys been playing?”
Had they taken up tennis in their retirement years? Had they both been playing since they were kids? Had they . . .?
The old guy wiped away sweat and glanced at his watch. “I’d say about two hours.”
He returned to playing and grunting and striking great forehands.
+ + +
“How long will dying take?” a patient or caregiver whispers.
“How long does the grief that’s breaking my heart last?” a grieving spouse wonders.
We like to schedule everything. We want to know how long something will take and exactly what happens next. Whether we’re Fran or Arturo—or you or me—we seek control. But in living and dying, and during grieving, we will rarely know how long. Control is out of our control. Time is a trickle or a torrent, a friend and an enemy.
So maybe another question can be asked like, “What can I do to help?”
We can scrub another’s back to provide squeaky-clean comfort and companionship. We can sit silently with the one grieving, reminding them they are not alone. We can share a meal or card game or chat and listen to a family story. Or, these days, can we text or Zoom?
We may not be able to answer the toughest and scariest questions that our friends and family members ask, but we can give an answer that matters: offer our here-and-now time to a loved one.
What can I do to help?
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)by