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.”
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.
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.”
One of this blog post’s authors, Teresita Hogan, MD, speaks on care transitions during the Geriatric EM Boot Camp in Milwaukee.
Editor’s Note: In our Feb. 19 Health AGEnda post, the team we’re informally calling the Hartford Geri EM Champions shared information about the first two Geriatric Emergency Medicine Boot Camps and a meeting hosted by the John A. Hartford Foundation in late January to discuss new opportunities to improve acute care of older adults. Today, in the second of two parts, our EM experts discuss why our current system is failing older Americans, and share their vision for better emergency department care that can both serve the needs of older adults and contribute to a more efficient and value-based health care system.
The acute care provided to older adults in emergency departments (ED) across the country, and world, is often inadequate and sometimes dangerous.
Throughout my career in aging, I have worked for and with community-based agencies. I know how essential these agencies are in helping older people remain well and in their homes by providing and coordinating needed supportive services.
These critical services for older people who have difficulty with daily tasks or younger people with disabilities include home delivered meals, shopping, cooking, bathing, bill paying and/or emotional support, as well as support for their caregivers. In-home assessments determine exactly what is needed for each individual and their family.
The agencies providing these services have always operated on slim budgets funded by federal block grants and philanthropy. Due to funding limits, there are months-long waiting lists for older people who are desperately trying to remain as independent as possible for as long as possible in their own homes.
As Orson Welles might have said: “We will evaluate no program before its time.”
One of the first things you learn in “foundation school” is how easy it is to kill even great programs by evaluating them before they are ready.
Nothing innovative starts working on day one as well as it will with practice, adjustment, and refinement. Even more deadly is an evaluation with low-cost methods that doesn’t really provide the information you want and need. One of the painful lessons I’ve learned is to always buy the highest quality and therefore most expensive evaluation you can afford, because it’s cheaper in the long run.
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.