I’ve never received so much listener feedback as with WPLN’s Cost of Dying series. With every phone call and email, family caregivers confirmed that home hospice, as beautiful as it can be, is also harder than the living like to admit. Now I can add my review.
Those initial stories, looking at the mounting burden on unpaid family members, aired just a few days before my own mother died. She’d spent 13 months on home hospice after years enduring ALS, also known as Lou Gehrig’s disease.
Mom really didn’t want to be recorded — which I didn’t understand at first. Then I realized she didn’t like the way she sounded anymore.
“I can still talk,” she told me in June 2019. But she was starting to have difficulty swallowing, and she’d have to take breaks speaking or risk running out of breath.
As a former music teacher and principal, her voice was a big part of who she was, and after ALS paralyzed her legs and then her arms, it froze the muscles used to breath and talk. So a machine pumped air in and out through her nostrils. Without it, she could only speak in a whisper, and if she laughed or cried, air would come rushing out her mouth.
I apologized for twisting her arm and turning on a microphone.
“I love you,” Mom said. “Wouldn’t have done it for anybody else.”
We paused so we could both recompose ourselves.
For nearly a year at that point, I’d been talking to hospice patients and families. It’s a little easier to keep it together when it’s not your mother talking about her impending departure from this world.
‘I Don’t Think They Can Handle It’
Still, it’s an emotional experience to interview anyone who’s dying. I’d spoken to many people who were — and their caregivers — about their experiences.
William McGill of Whites Creek introduced himself as “Wild Bill,” a 98-year-old war veteran. He had his oxygen on overdrive when I talked to him just days before his death.
He was ready. He’d been a widower for more than a decade.
“I’d like to meet my wife in heaven,” he said.
McGill took care of her when she called off curative treatment and chose to start hospice care. But when his chronic lung condition was deemed terminal, he had to lean on his daughters, who live out of town.
They were struggling to figure out how to help him at home. They either wanted to find a nursing home or come up with the money for private caregivers.
“I don’t think they can handle it,” he told me.
End-of-life advocates are becoming increasingly aware that, despite all the help hospice provides, it still leaves a lot of the burden on family caregivers, especially spouses and children. A college friend with an artistic flair who is now a palliative care physician just illustrated a graphic op-ed on this topic for the Los Angeles Times.
Being A Nurse And A Daughter
I sat with my mother-in-law, Pam Steward, in Fort Worth last year as she kept vigil by her mother, who was drawing her final breaths, with extended pauses.
“They’re excruciating,” she said of the silence.
I had watched Pam all of my married life care for her parents. She was an only child, so there wasn’t much question of who was going to take care of Boots and Pat Mommy, as we called them.
“You do things for them that you don’t think you would ever have been able to do, to people who were very dignified and very private,” she said. “You’re having to do things for them that you just … a child should not have to do with their parent.”
Pam says changing diapers or otherwise dealing with bodily fluids interrupts what you hope would be a time of reflection. For what it’s worth, she had a much better experience when her mother died in an inpatient hospice facility than with her father, who died at home.
It was just a few months later when I was sitting with my own mother, hydrangeas in full bloom outside her kitchen window. Even with grown kids in town, her husband of 42 years shouldered nearly all the weight.
“I mean, he’s 24 hours, seven days a week,” Mom said — though they had hired a caregiver for a few days a week “so he gets out of the house. Otherwise, I’d say the burden of feeling responsible probably overwhelms him, though he doesn’t really talk to me about that.”
If he so much as went outside, Dad had to worry whether she might be choking with no way to alert anyone.
This round-the-clock vigilance can even lead to a particular kind of suffering that’s been given a name: caregiver syndrome.
And Mom knew she’d never be able to return the favor.
“Yeah, he was a good choice,” she said. “I’ve thought about that a lot, because there had been a couple of guys before him that I would have married if they’d asked me. They would have been gone.”
The Final Days
In the last few weeks, hospice nurses came more often, but usually for check-ins or a specific task like putting in a catheter. In the end, it was up to Dad to figure out whether she needed more morphine or nausea medication. And in the last days, she really couldn’t communicate, even though she was alert.
It was not the peaceful passing I prayed for. Mom was surrounded by family, as I think anyone would want. But she was miserable, hadn’t really eaten in weeks, even her breathing machine couldn’t give her enough breath.
As she died, there was no nurse around for reassurance. And that’s pretty normal, especially since she died on a Sunday afternoon when staffing levels are low.
This is the new reality with hospice. Death has returned home, where most of us say we want to die. But there seems to be a cost that’s difficult to quantify for those left behind.