The Agewyz Podcast

When Steve Burrows’ mother, Judie, fell into a coma after a routine hip surgery, he was afraid she would never wake up. Questioning Judie’s care during surgery, Steve discovered his mother was one of an alarming number of patients in the US who are harmed by medical error. His personal video diary of Judie’s recovery mushroomed into a ten-year, multi-layered investigation into the state of American health care laid bare in the documentary film, “Bleed Out”—Steve’s hair-raising search for the truth about what happened to his mother’s care. A former member of the Groundlings theater company famous for his popular comedy film “Chump Change,” Steve says “Bleed Out” isn’t a film he wanted to make but a film he needed to make. Joining him on the show to talk about how the film evolved and how it will be used to promote accountability in healthcare is producer Ilan Arboleda (Creative Chaos), who Steve met after he’d shot many years of footage, gathered in part for a medical malpractice lawsuit brought on his mother’s behalf. Steve talks about juggling his show business career with flying back and forth between LA and Milwaukee to care for his mother, how his wife supported him during a time when Steve felt his sense of humor fading and why none of us can afford to blindly trust doctors. “Bleed Out” debuts on HBO on Monday, December 17, 2018.

Watch the trailer for "Bleed Out"

Talking about death can be difficult. But Lois Perelson-Gross believes people are eager to find a way in and begin to feel comfortable talking about the inevitable, so she helped launch Reimagine End of Life, a not-for-profit whose mission is to publicly explore death and celebrate life through creativity and conversation. Reimagine recently held its first ever festival in New York City, where some big questions about life and death were explored in over 300 unique events. On the show, Lois tells us how she went from being a Vice President at Goldman Sachs to launching her second career as a palliative care chaplain focused on humanism in medicine. She talks about how Reimagine evolved and about the Graphic Medicine-related events at the NYC festival, which included exhibits and panel discussions with cartoonists Emily Flake, Ben Schwartz, Roz Chast and others who address mortality in their often funny and poignant comics. Lois tells us about her own project, “Never the Right Time,” which debuted at the festival and combines the work of New Yorker magazine cartoonists with factual information about end of life care and end of life wishes. She also offers tools you can use to get past the stigma of talking about death and dying, and start having meaningful conversations.

Explore Reimagine End of Life: www.letsreimagine.org

Also mentioned in the show: Death Over Dinner: https://deathoverdinner.org

Go Wish (card game): http://www.gowish.org

Hello (card game): https://commonpractice.com/products/hello-game

“Being Mortal” by Atul Guwande: http://atulgawande.com/book/being-mortal/

Toronto-based researcher Dr. Vivian Stamatopoulos was 26 years old and laid off from a job when it fell to her to care for her grandfather, who had prostate cancer and advanced macular degeneration that prevented him from driving. In the midst of applying to PhD programs, Vivian took her grandfather to cancer treatments, dealt with all manner of healthcare professionals and acted as an interpreter for her mostly Greek-speaking "papou". The experience led to focusing her PhD on how the lives and identities of Canada’s 1.25 Million youth caregivers (individuals between ages 15 and 24) are impacted by having to care for a family member at a young age. Vivian tells us how Canadian government officials responded to her alarming research findings, she talks about support systems for youth carers — as they’re known internationally — in Canada vs. the UK and the US, the penalties young people face as a result of their caregiving experiences and why kids don’t want to self-identify as caregivers. She provides advice to youth caregivers on how to cope and where to turn for help.

Connect with Vivian: https://twitter.com/DrVivianS

Sample her work: “Young carers in Canada, a spotlight on research” https://www.changefoundation.ca/young-carers-canada/

Programs and Services Supporting Ontario’s Young Carers: https://bit.ly/2PXh38X

Other Support Services in Ontario:

Young Carers Initiative (Niagara-Haldimand-Norfolk region): http://www.powerhouseproject.ca/

Hospice Toronto's Young Carers Program (Greater Toronto Area) https://hospicetoronto.ca/young-carers-program/

Support Services in British Columbia:

Cowichan young carers (Vancouver Island): http://familycaregiverssupport.org/wp/

Comox Valley Youth as Caregivers Program: https://www.facebook.com/YouthasCaregivers/

Peter Fox has been called a sugar baby, a gold digger and a kept man more times than he’d care to remember. But his relationship with his partner Gary—who is decades older than Peter—is as real as it gets and the two are a couple in every way. In today’s show Peter and Gary tell us how they met, how their relationship endures despite their age difference and about their end-of-life wishes. Although Gary is fit and not on any medication, Peter anticipates caring for him in a big way in the near future. He’s ready for it: when he lived in Manhattan Peter cared for an elderly neighbor, and he now looks after a nonagenarian who lives in his Palm Beach condominium. On the show Peter also talks about his own health complications, his fears about the rise of hate crimes, healthcare from the LGBT perspective and why his new specialty is dry parties. Tune in for a moving story of two men from different generations aging together with grace. Note: this episode originally aired June 1, 2017. We have an update at the end of the show.

Music: “Barbara” by US Army Blues, Live at Blues Alley | Public Domain

Dana Walrath refers to her work as a border-crossing blend of creative writing, anthropology and art. The daughter of refugees from the Armenian genocide, she has used stories and art to teach medical humanities at the University of Vermont’s College of Medicine since moving to the state in 2000. On the show Dana talks about her graphic memoir, “Aliceheimer’s: Through the Looking Glass,” which combines drawings and stories to chronicle three years of caregiving for her mother, Alice, when she was in the middle stages of Alzheimer’s disease. Dana tells us about her frustrating encounters with the medical system, how her mother expressed herself creatively despite having Alzheimer’s and how living with her mother gave Dana an opportunity to make peace with her despite their historically difficult relationship. Currently based in Dublin, Ireland, Dana is an Atlantic Fellow for Equity in Brain Health at the Global Brain Health Institute, where she’s developing a second graphic memoir focusing on end stages of dementia and dementia across cultures. This episode is sponsored by Hero: www.herohealth.com

Learn more about Dana’s work: http://www.danawalrath.com

Explore The Atlantic Fellows for Equity in Brain Health: https://www.gbhi.org/atlantic-fellows/

When aging parents need care, the way they’ve lived their lives up to that point often factors into whether their adult children are willing to help them. In today’s episode we hear from a daughter who felt duty-bound to help her parents even though her sister refused to get involved. She explains why she became her parents’ primary caregiver, and why—despite paying a steep personal price—she views her caregiving journey as the most rewarding experience of her life. She tells us how the Manhattan co-op meant for her niece and nephew became hers out of necessity, and about how her mother’s life-threatening spinal stenosis, later diagnosed as cauda equina syndrome, led the family to spend $20,000/month for caregivers and resulted in her mother becoming eligible for Medicaid. The caregiver in this conversation has chosen to remain anonymous. Note: this episode originally aired May 1, 2016. We have an update at the end of the show.

Artist (mom’s) website: www.estellemorgan.com

Learn more about cauda equina syndrome: http://bit.ly/1SxWyuF

Learn more about naturally occurring retirement communities (NORCs): http://nyti.ms/1SvTFXY

Music: “Reflections Across the Sky” by Scott Holmes | CC BY | Free Music Archive

Cynthia Lim thought she had the perfect life: a loving husband who was also a successful lawyer, her own fulfilling career, two sons thriving in high school and a home in LA loaded with books, music and art. It all fell apart in June of 2003 when her husband, Perry, suffered a cardiac arrest and brain injury, lingering in a coma for ten days. When Perry woke up, he was unable to form sentences and he was completely dependent on others. Cynthia talks about the wrenching realities of her new life after Perry’s catastrophic event, from wanting to leave him in an institution and battling with the medical community to finding services and support for Perry all on her own and caring for him throughout his recovery. She did it all while working full-time, seeing one son off to college and guiding the other through high school, and trying desperately to find connection with her husband of twenty years. Cynthia’s story of reinvention and reimagining life with disability is captured in her memoir, “Wherever You Are: A Memoir of Love, Marriage, and Brain Injury.” This episode is sponsored by Hero.

Link to Cynthia’s book, "Wherever You Are"

Cynthia’s website

New Yorker Jennifer Levin talks about how becoming a caregiver for her father at age 32 changed her and why she wrote about her experience in Cosmopolitan digital magazine. Initially diagnosed with Parkinson’s disease, Jennifer’s father was eventually diagnosed with Progressive Supranuclear Palsy (PSP), a degenerative brain disease. Jennifer reflects on why her social media posts remained cheery even as she struggled offline with caring for her father, she tells us why she was reluctant to join a support group and why there’s a stark difference between being a Millennial or Gen-X caregiver versus caregiving as a baby boomer. She pushes back on the stereotype of young adults as being lazy and mooching off their parents, and tells us why being a bossy New Yorker is helpful advocating on behalf of caregivers.

Jennifer’s article for Cosmopolitan digital: http://bit.ly/2kpgfoG

“Caregiver Collective” private Facebook page for Millennial caregivers: http://bit.ly/2mMf0Be

More about Progressive Supranuclear Palsy (PSP): http://mayocl.in/2mfLK9t

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

When her husband proposed a month’s vacation in Mexico, Susan Reid hesitated - fearful of being away from her elderly parents for so long. Susan’s mother is diabetic and her father has dementia. Neither parent drives, unless you count the golf cart Susan calls “the clown car.” In today’s episode she tells us how that trip to Mexico played out and how moving her parents to an elder-friendly community helped Susan survive caregiver burnout. She talks about her mother’s near-fatal trip to the hospital on a Halloween night, she offers her perspective on aging in America and she tells us what it’s like to get the senior discount without even asking for it. Susan also gives us the scoop on her non-caregiving siblings, including her free-spirited brother—who rents out his goats to the state of Nevada. Note: this episode originally aired on April 9, 2016. Stay tuned to the end of this airing for an update.

State-by-State help for family caregivers (interactive map): https://bit.ly/1WTd9aH

Senior Resource Guide for residents of Alameda County (CA): https://bit.ly/2EpiMhN

Music: “Kelli's Number” by U.S. Army Blues | Public Domain | Free Music Archive

Nine months after she helped move her parents from New York to Florida, Certified Aging in Place Specialist Dale Miller learned her mother had a brain tumor. A lifelong New Yorker, Dale pulled up stakes and moved to Florida too, relocating herself and her business as a commercial interior designer. On the show Dale tells us how both she and her father rebuilt their lives after her mother died, from answering her father’s questions about dating when he started socializing again and his unexpected move into a senior living community, to caring for her father as he declined from Alzheimer’s disease and eventually starting her company Aging in Place, USA. Get out a pen and paper: this episode is loaded with ideas for changes you can make to your home if you want to age in place safely and comfortably.

Learn more about Dale’s company: www.aginginplaceus.com

Get in touch with Dale: [email protected]

Music: “Always Late” by Ketsa | CC BY NC ND | Free Music Archive