The Agewyz Podcast

Wanting to care for your child is a basic instinct for most mothers. All the more so when that child has a chronic condition, like the son of today’s guest—a Wisconsin mother who asked that we not use her last name. Carol’s adult son has Multiple Sclerosis (MS), but he refuses to let Carol care for him. She says their relationship wasn’t always strained. On the show, Carol reflects on how she and her son arrived at this impasse and she tells us how she navigates her relationship with her son now. She shares her concerns for her son’s future, and tells us why she still fundraises for MS but is more invested in advocating for criminal justice reform in Wisconsin. Carol is the President of MOSES (Madison Organizing in Strength, Equality and Solidarity).

Music: “L'Etoile danse (Pt. 1)” and “Blind” by Meydan | CC BY | Free Music Archive

In the U.S., as many as 8.4 million people act as caregivers to adults with emotional or mental health conditions. That’s according to a recent report co-authored by the National Alliance for Caregiving (NAC) and the National Alliance on Mental Illness (NAMI). Mental health caregivers often have a heavier burden of care and higher stress levels than a typical family caregiver. One such caregiver who faced a heavy burden—and ultimately, heartbreak—is Kristi Horner, whose brother suffered from mental illness and took his own life. Kristi is the founder of Courage to Caregivers, a Northeast Ohio non-profit focused exclusively on helping caregivers for a loved one with mental illness. Jana talks with Kristi about her journey with her brother through mental illness, and about how Kristi’s organization is helping caregivers get past the stigma of mental illness by providing them with education, support and empowerment.

Courage to Caregivers direct dial: (216) 536-7699
Website: Courage to Caregivers
National Alliance on Mental Illness
Guidebook for Mental Health Caregivers (NAC and NAMI)

Brooklyn-born attorney and empowerment guru Tamesha Keel was riding high in her career when her father died and she took on the role of sole caregiver for her mother. Years earlier her mother had survived a massive brain hemorrhage. She couldn’t live alone, so she moved in with Tamesha. Then her mother was diagnosed with Alzheimer’s disease and terminal cancer. Tamesha talks about powering through work as she coordinated her mother’s multiple care needs, letting go of her “perfect daughter” mindset, tough-love fights with her mom and their complicated but magical trip to New Orleans sponsored by the Dream Foundation. Tamesha also talks about the demographics of care and she offers caregiver coaching tips learned the hard way. Note: this episode originally aired March 5, 2016.

Learn more: Lawportunities.com

Music: “Harp Calling” by Ketsa | CC BY NC ND | Free Music Archive

Florida native Katherine Summers stumbled into her career as a paid caregiver. She had some time on her hands, and friends from her childhood began asking if she could check in on their aging parents. Katherine found she liked being around the elders, and caring for them came naturally to her. So she decided to take classes in Alzheimer’s and dementia care and work as a caregiver professionally, first through an agency and then independently. For the past six years she’s cared exclusively for two people who live together: a cancer patient and his mother who has dementia. Katherine tells us how she acts as a buffer between her two fragile clients and what she’s learned from over a decade of caring for other peoples’ family members. She provides tips for finding reliable in-home care, she talks about coming to terms with clients who die and tells us how she counsels family members who are confused about what’s going on with their elderly loved ones. Whether you’re thinking about hiring a home health aide or are just curious to know how a high-quality caregiver manages her job, this interview with a seasoned pro is for you.

Alzheimer’s Speaks founder Lori La Bey is driven to help people with dementia and their care partners live positive and purpose-filled lives. The work of her Minnesota-based advocacy group has been recognized by Oprah Winfrey, Dr. Oz and Sharecare and Alzheimer’s advocate Maria Shriver, who named Lori an “Architect of Change for Humanity.” For Lori, it’s all about shifting from crisis to comfort and choosing to consciously care in every moment we’re given. Lori talks with Jana about how her work evolved, why she created multiple platforms for people to access dementia care educational tools and the lone criteria for her next gig when she left the residential real estate business after 25 years. And then there’s story of Betty the Bald Chicken.

Resources mentioned in the show:

Your Memory Chip™ Tool

Tips for communicating with a person with dementia

Alzheimer’s Speaks Website

Alzheimer’s Speaks Radio 

Dementia Chats Video Interviews

Alzheimer’s Speaks Blog

Alzheimer’s Speaks YouTube Channel

Memory Café, General Information

Memory Café Directory  

Norm McNamara Purple Angel website

The Purple Table

In 2015, award-winning journalist John Leland set out on behalf of The New York Times to meet members of America’s fastest growing age group: people age 85 and older, or what gerontologists often refer to as “the oldest old.” What John discovered during his deep dive into the world of elders upended his own ideas about old age. It also challenged the widespread notion that old age is nothing more than a grim period of physical and emotional decline. On the show John shares some of the lessons he learned from six elders profiled in his best-selling book, “Happiness Is A Choice You Make: Lessons From a Year Among the Oldest Old.” They include his own mother, Dorothy Leland, and the late Jonas Mekas, who hung out with Andy Warhol and Allen Ginsberg and was known as the godfather of American avant-garde cinema. He talks about his series “85 and Up” for the Times, which formed the basis for his book, and about the huge influence we all have over the quality of our lives as we age. Hint: research shows that a positive view of old age results in adding 7-1/2 years to your life.

Website for John’s book: Happiness Is A Choice You Make
John’s series for The New York Times: “The Best of ‘85 and Up’”
John's tribute to Jonas Mekas after his death: “‘Trust Your Angels’”

Candia, New Hampshire residents Kathy and Ray MacDonald vowed when they got married that neither mother-in-law would ever live with them. Then Kathy’s mother Simone developed Alzheimer’s disease. The working couple now juggles caring for 78-year-old Simone with fulltime jobs, getaways planned months in advance and a rotating team of in-home aides paid for through Simone’s long-term care insurance. On the show Kathy tells us how the new normal unfolded, what her son’s eighth grade presentation on Alzheimer’s taught her about the disease and why she knows she and Ray made the right decision. Tune in and get inspired.

Easter Seals Services for Seniors: ESSS
NH Union Leader article profiling the family by Roberta Baker, 12/16/18

Singer/songwriter, guitarist and producer Kate Schutt was packed and set to leave for a gig in the Middle East when she learned that her mother had stage 3c ovarian cancer. Kate broke her contract, moved in with her mother and became her primary caregiver for the next four years. On the show she talks about returning to live in her childhood home, the intense journey with her mother from cancer diagnosis to death and writing about life and loss for her forthcoming album, “Bright Nowhere,” which Kate is working on with legendary producer/arranger Rob Mounsey. Kate riffs on the deep conversations she and her mother had during their time together, how they connected through music and how Kate and her music changed as a result of her caregiving and loss. She tells us what inspired her TEDx talk, “A Grief Casserole: How to Help Your Friends and Family Through Loss” and how she’s learning how to lean into self-care after putting so much of herself on hold. NPR calls Kate’s singing “glassily clear and glossily sweet.” Tune in and hear why.

Kate’s TEDx talk, plus music and writings: Kate Schutt
Kate’s music on Soundcloud

Veteran journalist Paula Span has had personal experience with many of the issues explored in her twice-monthly column for The New York Times, “The New Old Age”—the only dedicated real estate at the Times that talks about aging issues and caregiving. On the show, Paula shares some of those experiences and tells us about the evolution of the column and the story behind some of her pieces, including one on the growing use of medical marijuana among seniors and another on a program for medical students that involves interacting with older adults. She also weighs in on ageism, the realities of aging in place, reader reactions to some of her more popular pieces and how the landscape of care has changed. About to turn seventy years old, Paula is strategizing for her own future care needs but has no plans to retire; besides her “New Old Age” column, she writes the “Generation Grandparent” column for the Times and she teaches at the Columbia University Graduate School of Journalism. Tune in for a wide-ranging conversation chock full of useful information.

New York Times articles by Paula Span mentioned in the show:
“Every Older Patient Has A Story: Medical Students Need to Hear It” (10/12/18)
“Older Americans Are Flocking to Medical Marijuana” (12/7/18)
“A Retirement Community Turned Away These Married Women” (8/17/18)
“A Quiet Drug Problem Among the Elderly” (3/16/18 – one in a series)

Follow Paula on Twitter: @paula_span

Dr. Nicole Rochester has known she wanted to be a pediatrician since she was about eight years old. A Washington, DC native whose dad was a Redskins season ticket holder, Dr. Rochester has advocated for her own family members and given medical care to children in the DC Metro area for two decades. In today’s show she shares her insider’s view of the way hospitals work: how the doctor-patient relationship has changed over the years, how the fast-paced nature of hospitals affects care and why family meetings are a critical component of care. Dr. Rochester shares her concerns about the ongoing attacks on the Affordable Care Act (ACA), she tells us why being a high-maintenance caregiver is a good thing and about why she started her website aimed at helping families navigate the healthcare system. Tune in for this lively chat with tips and tools from a caring physician.

Connect with Dr. Nicole Rochester:
Website
Facebook
Twitter