The Agewyz Podcast

Self-care gets a lot of play in the media, but the truth is we’re all connected and the practice of care involves many people, especially in times of crisis. In today’s show media scholar and veteran journalist Dr. Sherri Williams brings to life her recent piece for ELLE.com, “It Takes A Squad to Care For An Elder,” which captures her family’s response to the news that her grandmother had pancreatic cancer. Sherri tells us why—in the midst of earning her PhD—she dropped everything and traveled to Michigan to be with her grandmother, a news junkie and fan of Jay-Z, how the experience of her grandmother’s final days changed her and what she learned that others may find helpful. We also dip into some of Sherri’s other work, hearing her views on immigration and the care workforce. Dr. Sherri Williams is an assistant professor in race, media and communication at American University.

“It Takes A Squad to Care For An Elder” by Sherri Williams: http://bit.ly/2unf3vM

Sherri’s website: http://bit.ly/2vSpyYi

Music: "Save One Another" by Dlay | CC BY NC ND | Free Music Archive

Autism Village founder Topher Wurts says that with a special needs diagnosis, a parent’s “imaginary future child” dies all at once instead of by a thousand cuts over twenty years. In today’s show, Topher shares his family’s caregiving journey with son Kirby, who was diagnosed with autism at eighteen months old. From altered careers and tricky social situations, to the all-autistic Boy Scout troop Kirby thrives in and balancing time with neurotypical son, Zandy, celebrating each day is what this family is all about. Topher also tells us how he used his background in tech media to develop Autism Village, a free, Yelp-like mobile app for autism families, and how his non-profit Autism Friendly is training businesses to better serve clients on the autism spectrum.

For a transcript of this episode click here: Transcript

Autism Village (free app)

Training for businesses:

Additional Resources: “Born on a Blue Day” by Daniel Tammet

“Ten Things Every Child With Autism Wishes You Knew” by Ellen Notbohm

Books by Temple Grandin

Learn about jazz pianist Matt Savage

This week as Senators wade through healthcare bills known and unknown, everyday citizens and grassroots campaigns like Caring Across Generations (CAG) continue to push for health policies that reflect the realities of 21st century life. In today’s show we catch up with CAG’s Political Director, Kevin Simowitz, who tells us what the campaign is planning in response to attacks on the Affordable Care Act and on Medicaid, how the 2018 elections will be shaped by care and tactics that will be used to hold the candidates accountable. Kevin also talks about progress in some of the states, including Maine’s Universal Family Care bill, designed to cover child and senior care, Hawai’i’s recently passed Kupuna Caregiver Act and the Michigan study bill he’s excited about. He tells us how he stays motivated in the ongoing effort to transform the way America cares, and we get an update on the health of Kevin’s 90-year-old grandmother (aka “Gammy”).

Find out more about Caring Across Generations: https://caringacross.org

Learn more about the disability rights group ADAPT: http://adapt.org

Music: “Arashi” by Kakurenbo | CC BY NC | Free Music Archive

55-year-old Maggie McClane is one of millions of working women who often feel like they have to choose between being a good employee and a good daughter. In Maggie’s case the choice was clear: when her father died, she quit her job to become a 24/7 caregiver for her beloved mother, who has Alzheimer’s disease, severe macular degeneration and permanent vertigo from a stroke. In today’s show Maggie talks about leaving the paid workforce, what she misses, and her concerns about her financial future but why she knows she made the right choice. She talks strategy: how she fights isolation, relies on Home Instead Senior Care, manages sibling challenges and plans to re-enter the workforce. Maggie also tells us what she’s learned from caring for her mom, how she’s changed and why she will never go without peach pants (think “D” word).

2017 Daughters In The Workplace Report: http://bit.ly/2uBobwe

Additional Resources: http://bit.ly/2uDzrYK

Music: “Even When We Fall” by Philipp Weigl | CC BY | Free Music Archive

Lindsay Jurist-Rosner was just nine years old when her mother was diagnosed with Multiple Sclerosis (MS). Over twenty-five years of caregiving later, she co-founded Wellthy with software developer Kevin Roche to help families with the seemingly endless number of healthcare-related tasks. In today’s show Lindsay talks about the stages of her mom’s MS and how caring for her in a more hands-on way after college affected her personally and professionally. She also explains how Wellthy care coordinators work directly with families, what the service costs and how the company is courting employers to offer the concierge service as part of its benefits package. Lindsay recently used her own company to find a home health aide for her mother, allowing them to enjoy mother-daughter time in a whole new way.

Wellthy website: https://wellthy.com

Lindsay’s story in her own words: http://bit.ly/2umP1IM

Also mentioned in the show: Après https://apresgroup.com

Music: “These Times” by Blue Dot Sessions | CC BY NC | Free Music Archive

78-year-old Rosemary Otto is a self-taught, outsider artist whose work is both a form of creative expression and has helped in her recovery from mental illness. Born in Germany to an American mother and German father, Rosemary now lives in the house where she was raised: her great-grandmother’s house in Lake Worth, Florida, where she paints in between visits to the nearby senior center and her doctor appointments. In today’s show, Rosemary talks about the box of crayons that sparked her interest in art as a child, her mother’s influence, how she manages from day to day and why living in a nursing home is worse than being in a mental hospital. She also tells us about her new series of paintings, “The Invisible Women,” which challenges us to think differently about the older adults around us.

Rosemary’s work on The Box Gallery Facebook Page: http://bit.ly/2tQ8OPG

Palm Tran link (for residents of Palm Beach County): http://bit.ly/2tMAfdH

Music: “Empty Trees” (remix) by Ketsa | CC BY NC ND | Free Music Archive

MK Czerwiec was not the kid in school who could draw. But in 1994, during her first nursing job on AIDS Unit 371 in Chicago’s Illinois Masonic Medical Center, she began writing and creating comics as a way of coping with what she witnessed daily: the terrible toll of AIDS. In today’s show, MK talks about Taking Turns: Stories From HIV/AIDS Care Unit 371, her graphic novel, which combines her memories of working in Unit 371 with the oral histories of its patients, family members and staff. MK tells us how the book came about, how creating comics has helped her in caring for her own family members, why graphic narratives are useful in high-stress situations and how comics are now being used as a vital tool in healthcare.

Link to MK’s website: https://www.comicnurse.com

Link to Graphic Medicine website: http://www.graphicmedicine.org

Graphic Medicine Manifesto: http://bit.ly/2t4JnYk

Graphic novels/memoir that feature caregiving & living with long-term illness:

Elderly family members: "Can’t We Talk about Something More Pleasant" by Roz Chast (excerpt: http://bit.ly/1FHmNTD); and "Special Exits" by Joyce Farmer (http://bit.ly/2tt2aiR)

Alzheimer's Disease: "Tangles" by Sarah Leavitt (http://bit.ly/2s5QDlm); and "Aliceheimer’s" by Dana Walrath (http://bit.ly/2sqwPID)

COPD/Hospice: "Things To Do In A Retirement Home Trailer Park When You’re 29 And Unemployed" by Nye Wright (http://bit.ly/1PD7Q9B)

Parkinson's Disease: "My Degeneration" by Peter Dunlop-Shohl (http://bit.ly/2ttpi0E)

Music: “Wounds” (remix) by Ketsa | CC BY NC ND | Free Music Archive

Growing up in Albuquerque, New Mexico writer Tanya Ward Goodman was joined at the hip with her father Ross Ward, a nationally known carnival artist and creator of the whimsical Tinkertown Museum. Years later, when Ross was diagnosed with early onset Alzheimer’s disease and told he had five years or less to live, Tanya gave up her apartment in LA and moved back home—living in the center of the museum—to help care for father. In today’s show, she talks about the experience, captured in her memoir “Leaving Tinkertown,” and how it reinforced her sense of identity and put Hollywood in perspective. From painting wagons with her father as a child on the carnival circuit to traveling to and from LA with him as he slid deeper into Alzheimer’s, Tanya describes the events—both frightening and funny— that marked her father’s decline, and how her family managed the downward spiral of this free-thinking, creative genius who lives on for her kids in Tinkertown.

Link to Tanya’s book: https://tanyawardgoodman.com

More about the Tinkertown Museum: http://tinkertown.com

Jay Nelson believes that regardless of background everyone has a story worth sharing, and that the stories of our elders are especially worth sharing and preserving. In today’s show Jay talks about The Legacies Project, an oral history project designed by his company Nice Work Public Media which is bringing together two groups that don’t often interact: teenagers and senior citizens. He tells us how the project came about, how it works and how it’s changing the dynamic on ageism by building relationships that benefit young and old. Jay also explains how The Legacies Project can be used in a variety of settings, what it costs and how the project exceeded his expectations.

Legacies website: http://www.legaciesproject.org

YouTube Page: https://www.youtube.com/user/legaciesproject

Football legend Bob Chappuis’ obituary referred to in the show: http://nyti.ms/2svySQ9

Music: “All Is Said” by Ketsa | CC BY NC ND | Free Music Archive

Director Deirdre Fishel walked around in a state of rage during the making of her documentary film, “Care,” which delves into the world of paid care from the perspective of both workers and care recipient. In today’s show, Deirdre talks about the making of her film and how her vibrant but frail mother influenced her decision to make it. From why people are afraid to talk about care to the frustration of paid workers—who pride themselves on their work despite their paltry wages—and how families are going bankrupt paying for these services, Deirdre tells us how her initial idea for a film just about care workers became something much bigger.

For a transcript of this episode click here: Transcript

Film’s website: http://caredocumentary.com

Domestic Workers United: http://bit.ly/2r30kPT

Music: “Alya” by Dlay | CC BY NC ND | Free Music Archive