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In two Texas counties along the border with Mexico, 20 to 25 percent of seniors have Alzheimer's or related dementias. Those rates are among the highest in the US and represent a mostly Latino population. But Latinos are underrepresented in Alzheimer's clinical trials. Physician and neurologist Dr. Gladys Maestre is changing that at her NIH-funded Alzheimer's research center in the Rio Grande Valley, the first of its kind in Texas. She's using a "place-based" approach to dementia care, bringing her Latina identity and cultural knowledge to investigate the social, environmental, and biological factors that influence brain health.
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“Memory is my tool and my raw material,” author Gabriel García Márquez once said to his son. “I cannot work without it.” As the great writer’s memory began to fail him late in life, his family circled around. Rodrigo García relays those days of caring and loss in his poignant memoir of his parents’ final years, “A Farewell to Gabo and Mercedes.”
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Fehlende Folgen?
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Arlieta Hall was a full-time caregiver for her dad with dementia when she started going to open-mic nights around Chicago for some relief. Then one night a manager suggested that she tell stories about her dad on stage. Now, Arlieta is making her name as a comedian and dementia educator. She’s a fellow at Chicago’s famed Second City comedy club, finishing a film about care and comedy, and trains families and caregivers to use the tools of improv to communicate better with people with dementia.
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What do Michael Che, Sarah Silverman and Kermit the Frog have in common? They're just a few of the celebrities who've helped Hilarity for Charity give direct aid to families caring for someone with Alzheimer's or dementia. HFC, as it's known, is the brainchild of actor Lauren Miller Rogen, who cared for her mom with Alzheimer's at a young age. Lauren enlisted her husband, comedian Seth Rogen, along with her family and friends to put on comedy shows to fundraise and lift spirits. On this episode, Lauren and her dad Scott Miller talk about their experience caregiving and how they're trying to lighten the burden for other caregivers today.
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Novelist Walter Mosley has written dozens of popular mystery and crime novels, but none quite like The Last Days of Ptolemy Grey, in which a man with Alzheimer's must solve a mystery buried deep in his own fading memory. In this episode, Mosley tells Kitty how caring for his parents with dementia exposed him to the drama of caregiving and later informed his writing. His novel, recently adapted into an Apple TV series starring Samuel L. Jackson, stands out as a rare portrayal in media of the experience of Alzheimer's disease, while still delivering a thrilling crime story.
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Investigative journalist Esme Deprez was sitting in a diner in New York when she got a text from her dad, asking her to help him die. Less than a month later, she drove to a pharmacy in Maine to pick up the medicine that would allow him to end his life, using Maine’s new “Aid in Dying” law. Esme tells Kitty about what she learned caring for her dad, epidemiologist Ron Deprez. His experience with ALS, or Lou Gehrig’s disease, gave Esme an education into the choices we can, and cannot make, for ourselves and our loved ones at the end of our lives.
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On this Mother's Day bonus episode, writer Brian Morton tells Kitty about the difficulties and delights of caring for his mother, a beloved teacher with a fiery personality who remained stubborn and independent even as her health declined. Brian's memoir, Tasha, is both a portrait of his mother and an account of the complexities of dementia care.
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It was 1996 when journalist Howard Gleckman got "the call" — about emergency care for his mother-in-law. Soon he was managing care for three older family members, and found the system impenetrable. He’s since made a career of explaining how long-term care works in the U.S., and how Wall Street investors are helping decide the kind of care your grandmother gets.
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Cynthia Huling Hummel was 49 years old when she noticed the first symptoms of Alzheimer's Disease. Today, she is an author and artist whose work explores the experience of living with Alzheimer's, and she volunteers her time for medical research into the disease. On this episode of Twenty-Four Seven: A Podcast About Caregiving, Cynthia shares her insights into the care she hopes to receive and her advice for others with Alzheimer's Disease.
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The guest on this episode is Ai-Jen Poo, an activist and lobbyist who has sought better pay for caregivers and greater access to in-home care for people who need it. Many of us who care for an aging parent rely on the help of a paid caregiver, someone to fill in when we're not available or just need a few hours off. Those professional home care aides take on demanding, intimate work that allows elderly people to stay at home rather than move into a nursing home, and yet on average, they make just $11 an hour. Ai-Jen tells Kitty how her grandmother and grandfather inspired her work, and the policy changes she thinks the United States needs to fix its elder care system.
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Understanding a little about the biology of dementia can demystify it, and Teepa Snow is an occupational therapist and educator who has made it her mission to do just that. Dementia is not a single disease, but more of an umbrella term for cognitive changes that can affect a person as they age. We commonly think of it as memory loss, but dementia can take many other shapes as well, affecting the mind and the body in ways that can seem bizarre and inexplicable to a caregiver.
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Jacquelyn Revere was just 29 when she started caring for her mom with Alzheimer’s. She built an audience of more than half a million followers when she started posting about it on TikTok. She talks with Kitty about what it’s like to become a parent to her parent at a very young age, and how an ounce of humor goes a long way.
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Kitty talks with Patti Davis, author of Floating in the Deep End: How Caregivers Can See Beyond Alzheimer's. Patti began taking care of her father, former president Ronald Reagan, when he was diagnosed with Alzheimer's after leaving office; she later ran support groups for family caregivers. She tells Kitty about the difficult lessons she learned while caring for a person with Alzheimer's and the spiritual groundings that carried her through it.
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We have new episodes coming in January, 2022, as Kitty expands from her personal story caring for her dad, to the experiences of many families. Guests this season include author Patti Davis, about caring for her father Ronald Reagan; MacArthur "genius grant" winner Ai-Jen Poo, and caregiver Jacquelyn Joyce Revere, who streams her lessons about caring for her mom on TikTok and YouTube. We also want to hear about your experience taking care of aging relatives. Get in touch with us at [email protected], and subscribe wherever you listen to podcasts.
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Kitty asks her dad what he thinks about death and the afterlife, then turns to a hospice chaplain who has discussions like that for a living.
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Kitty talks with another caregiver about keeping their parents socially connected, even as their social skills decline.
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After moving in with her dad, Kitty discovers a long list of new responsibilities she needs to figure out, like personal grooming.
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In search of support, Kitty calls a friend who cared for her husband with Parkinson's.
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When her dad takes an impromptu road trip across the Midwest, Kitty is forced to reckon with his declining health.