Did you hear the story about the New York woman who fought tooth and nail to honor her father’s wish to die at home, only to have the health care system bounce him from facility to facility? He died in a hospital hospice unit with deep pressure ulcers and a million dollars in costs for care that was unwanted.
Or how about the piano teacher dying from cancer who Atul Gawande wrote about? Through a conversation about her priorities, she returned to teaching his daughter and other students, all during home hospice care over the last six weeks of her life. She focused not on having a good death, but on having the best days possible right until the end.
These are stories that stuck with me. They hit a chord. They struck a nerve. However you describe it, they changed the way I was thinking and compelled me to share them—to get others outraged or to give them hope.
Over the weekend, I walked past my wife and kids watching the new season three of Netflix’s House of Cards and was stunned to see the evil President Frank Underwood ranting at his cabinet to get on with designing his jobs program that would be funded by slashing the “entitlements” of Social Security, Medicare, and Medicaid that are “sucking us dry.”
I gave an impromptu lecture to the family on the folly of this policy position—I’m not sure they noticed. And of course, we’ve also written many times about the false narrative of zero-sum intergenerational conflict. (Read Pitting Older Adults Against Children Is a Zero-Sum Game and Analyze This: Misleading Federal Spending Stats Pit Children Vs. Older Adults.)
But what can anyone do when even television writers feel comfortable with this notion that the benefits that older adults earned in their lifetime of work are a dagger to the heart of the nation? While Underwood is certainly a morally compromised character, in this scene he is actually portrayed as the hero, taking decisive action in the face of a roomful of indecisive, equivocating, naysaying bureaucrats.
Antonio Z. Zuniga, a first-generation Mexican American, who gave inspirational and spiritual lectures in the U.S. and around the world. Here, at the Cliffs of Moher, Ireland, one of the many countries where he once spoke.
After a long career writing primarily for newspapers and magazines, Marielena Zuniga took early retirement with the idea that she would finally be able to accomplish a goal shared by many writers: to get a book published.
She managed to self-publish Loreen On The Lam: A Tennessee Mystery, and also focused on creative inspirational and spiritual writing. But Zuniga soon found herself in a new and unexpected role: as a fulltime caregiver for her father after he suffered a stroke.
Rosemary Rawlins, right, and her mother in “The Bistro.”
For much of the past 13 years, Rosemary Rawlins has found herself thrust into the role of family caregiver in a series of very different scenarios.
First, her husband, Hugh, suffered a severe traumatic brain injury (TBI) after being hit by a car while riding a bike in 2002 and underwent two years of arduous rehabilitation. Then, a year after her husband made a recovery bordering on the miraculous, Rawlins became a caregiver to her parents, as described in her prize-winning story below. And most recently, she helped her husband take care of his father through Parkinson’s disease until he passed away last September, and is preparing to have her mother-in-law move in this spring.
The Amjad Family “village” in 2014.
At the age of 4, Halima Amjad was already telling people she wanted to be a doctor. And not just any doctor.
“I used to say that I want to be Mommy and Daddy’s doctor,” says Amjad, MD, MPH, a clinical and research fellow in geriatric medicine at Johns Hopkins University School of Medicine and winner of the 2014-15 John A. Hartford Foundation Story Contest. “I don’t think I actually meant anything by that, but it ultimately ended up coming true that I chose geriatrics as my parents were getting older.”
Rosemary Rawlins, whose story “Gratitude for End of Life Lessons” tied for second prize in the contest, sits in “the Bistro” with her mother.
“Every time my Mother has a stroke, she wakes up a completely different person. This is okay because, as my Dad once observed, we’ve liked every person she’s been.”
“In the past few months, my sister has stopped talking. She’ll want to say something, realize she can’t, throw up her arms and roar.”
Policy change is hard. Just think about the 2010 Affordable Care Act, its tortuous path toward enactment, and the ongoing debates five years later that swirl around the law and its implementation.
There are many theories for how policy change happens, but one of my favorites is Kingdon’s policy streams model. To simplify a bit, it proposes that a window of opportunity opens when three separate streams come together: a problem gets defined and recognized as such, viable solutions are available, and there is political will to match them up.
Except for the political will part (thank you, partisan gridlock), at first glance this might seem easy. But think about how often your problem is not seen as a problem by others. For years, we faced this challenge when it came to making the case that older adults don’t get the care they should because they have special needs that require specialized, geriatrics-expert knowledge. Because of this challenge and the constantly shifting political landscape, it’s important to have policy solutions at the ready for the time when the problem and politics streams come together.
Todd Shurn and his mother, Alice, in 2013. Todd became a fulltime caregiver when his mother could no longer live on her own due to dementia. Photo courtesy of Todd Shurn.
Editor’s Note: The Jan. 15 deadline for submissions to the John A. Hartford Foundation’s second annual story contest is fast approaching. This year’s theme is Better Caregiving, Better Lives: Real Life Strategies and Solutions, and we are looking for stories from family caregivers and health care providers that illustrate the strategies and solutions caregivers are using to effectively and gracefully care for older adults. We are especially interested in stories about caring for older adults with dementia/Alzheimer’s disease.
So today, we share a dementia caregiving story written by one of this year’s contest judges, Yanick Rice Lamb, who teaches journalism at Howard University and is co-founder of FierceforBlackWomen.com, which partnered with TheRoot.com on the article. Lamb wrote a special introduction for Health AGEnda discussing how she approached writing the story and what she hoped to accomplish. It is our hope that Yanick’s behind-the-scenes insights into the writing process and her well-written, moving story will inspire others to share their own stories with us, and shine a light on how to “show” a story, not just “tell” it.
Are you a family caregiver of an older adult or a health care provider who works with family caregivers? Have you seen the challenges of caregiving up close and discovered ways of overcoming them?
If you said yes, you have an important story to tell and we want you to share it.
Today, we launched our second annual John A. Hartford Foundation story contest, and this year our theme is “Better Caregiving, Better Lives: Real Life Strategies and Solutions.”
We were introduced to Sally and her daughter Edna last year in a video from our grantee Community Catalyst. I learned recently that Sally has since passed away, but I am so grateful that her and her daughter’s story lives on.
It embodies the promise of the Voices for Better Health initiative, which advocates for quality care for low-income older adults and younger disabled people dually enrolled in both Medicare and Medicaid, as Sally was.
And fortunately, as states rapidly move to integrate Medicare and Medicaid financing and care for the “duals” population, advocates from Voices for Better Health and anyone concerned about people like Sally have a new resource.