Caregiver's Compass

For years, no one could explain what was happening to Linde Jacobs’s mother- the answer only revealing itself after an incarceration and a jaw dropping chance encounter with an inmate. In today’s episode, Stephanie talks with Linde, a registered nurse, wife, mother of two and co-founder of the nonprofit Cure MAPT FTD, about caring for her mother, ultimately diagnosed with genetic frontotemporal degeneration (FTD) caused by a MAPT mutation. 

Linde additionally discusses how her mother’s diagnosis led to her and her sisters’ choice in pursuing genetic testing, how her awareness of familial FTD shapes her daily life and the tremendous advocacy she now engages in to change the future for other FTD families. 

About Linde Jacobs:

Linde is a Registered Nurse, wife, and mother to two beautiful daughters. She has become an outspoken advocate for FTD as a multigenerational caregiver, starting in adolescence with her grandmother. Linde then became a primary caregiver at the age of 22, when her mother subsequently developed symptoms of genetic FTD caused by a MAPT mutation.

Fueled by failures of her family’s past while also fearing for the years ahead, Linde decided to take control of her future. She co-founded a non-profit organization, Cure MAPT FTD, engaging in research studies, serving on governmental committees, and has been a featured guest and keynote speaker at multiple conferences, podcasts, newscasts and research institutes. In December 2024, she was featured in a cover story in The New York Times, and will be featured in an upcoming PBS documentary.

Everything done in honor of her mother in the pursuit of a better future for herdaughters. Forever fighting.

Find Linde & Cure MAPT FTD:

https://curemaptftd.org/en

Thank you to today’s sponsor, The Association for Frontotemporal Degeneration. To learn more about AFTD please visit https://www.theaftd.org/

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

Cormac Russell joins Stephanie to explore how strong community structures support the wellbeing and everyday functioning of neighbourhoods and social structures, including caregivers. They discuss the value of local groups, relationships, shared responsibility, and community institutions, and why care shouldn’t fall on individuals and families alone.

Stephanie talks with Cormac Russell, founding director of Nurture Development and a longtime leader in asset-based community development, about how communities can better support the wellbeing and everyday lives of the people who live in them. They explore the community structures that help neighbourhoods function and thrive, from local groups, institutions, and shared spaces to the relationships that connect people and make mutual support possible. Cormac explains why care can’t rest on individuals and families alone, and why caregivers need to be supported as part of a wider network of community care. The conversation also looks at how institutions can work more closely with neighbourhoods, recognize local strengths, and build on what communities already have. 

Cormac shares examples of community-based approaches and discusses why solutions need to fit the people and places they serve.

About Cormac:

Cormac is a social explorer, an author and a much sought-after speaker. He is the Founding Director of Nurture Development and a member of the Asset-Based Community Development (ABCD) Institute, at DePaul University, Chicago.

Over the last 25 years, Cormac’s work has demonstrated an enduring impact in 35 countries around the world. He has trained communities, agencies, NGOs and governments in ABCD and other community-based approaches in Africa, Asia, Australia/Oceania, Europe and North America.

His most recent books are The Connected Community- Discovering the Health, Wealth, and Power of Neighborhoods (Coauthor John McKnight); Berrett-Koehler Publishers, 2022, and Rekindling Democracy – A Professional’s Guide to Working in Citizen Space; Cascade Books, 2020.

Find Cormac:

https://www.nurturedevelopment.org/who-we-are/cormac-russell/

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

In today’s episode, Stephanie and Tanya Cotler explore how guilt and shame show up in adult caregiving relationships, especially when someone is caring for a parent, and how old family dynamics can get triggered in caregiving relationships. 

Attachment is also discussed as a set of coping strategies while safety, connection, and permission to feel are explored as essential for setting boundaries that are grounded and effective.

Suggestions for healing and support are additionally explored for the emotions that arise as a result of caregiving situations. 

About Tanya: Dr. Tanya Cotler is a child and adult Clinical Psychologist, author and speaker who specializes in reproductive mental health, intergenerational trauma, child development, and parent-child attachment. In her clinical practice, Dr. Cotler provides individual and group therapy for adults, as well as play therapy for children. Dr. Cotler has presented at both national and international conferences and conducts trainings and conferences for parents, professionals and educators. As an author, Dr. Cotler writes a regular column for Psychology Today, Motherhood Made Real and has published a number of other works and book chapters on maternal mental health, parent-child attachment, and mindful parenting. 

Find Tanya:

On Instagram: @drcotler 
On Linkedin: @TanyaCotler 

Website: drtanyacotler.com

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

Maybe this sounds familiar. You have concerns about the person you care for and feel there’s much more that’s going on behind the scenes then meets the eye. Yet you feel dismissed when you raise these concerns or are told there’s no other option. You are left to feel as though you’re on your own in a system that you thought would hold you. If this sounds like you, then today’s episode will validate and normalize your experiences and highlight that you are not the only one with these thought and experiences. 

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

In today’s episode, Stephanie speaks with Dr. Raza Mirza about how social determinants of health, including income, social supports, and access to services influence health and quality of life as we age. Raza makes the case for stronger community-based supports and systems that improve outcomes for older adults and highlights communities who are leading the way in aging and caregiving. 

About Raza:

Raza M. Mirza, PhD received his MSc and doctorate degrees from the Graduate department of Pharmaceutical Sciences at the University of Toronto's Leslie Dan Faculty of Pharmacy. His areas of expertise and teaching interests include research methods and evaluation, medical decision-making, the socio-behavioral determinants of health in persons aging with a chronic illness, aging-in-place, and factors such as social isolation and loneliness influencing late-life social, mental and physical well-being. He is the lead for the intergenerational Canada HomeShare Program, the Intergenerational Classroom initiative between Christie Gardens and the University of Toronto, and is the chair of the Central Ontario Age-Friendly Network. 

He has been an invited speaker at national and international gerontology and geriatrics conferences, workshops and symposiums, and has consulted with various levels of government on diverse issues related to an aging population.

Raza is the Chief Operating Officer (COO) with HelpAge Canada, and Assistant Professor (Status) at the University of Toronto's Factor-Inwentash Faculty of Social Work, Institute for Life Course and Aging.

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

In this episode, Jacquelyn Revere shares what it was like to become a caregiver for her mother and grandmother, both living with dementia, while navigating a complicated mother-daughter relationship. Jacquelyn discusses the realities of only-child caregiving, the invisible labour that others often overlook, and the loneliness of being the person responsible for every decision. She also explains how sharing her experience online helped her find connection with others and inspired her to create The Care Den, an online community for caregivers.

About Jacquelyn:

Jacquelyn Revere heals her wounds through words. A young woman with a stutter and a whole lot to say, her path took a defining turn when she became a young caregiver for her mother and grandmother, both of whom battled dementia. In her fourth year of caregiving, she began sharing her journey on TikTok (@MomOfMyMom), building a substantial following and using her platform to connect with caregivers who had never seen their experience reflected back to them. Revere's story resonated widely, earning her an Op-Ed in the LA Times, features in The New York Times, NPR, and Ebony Magazine, and a feature in Caregiving the Documentary, produced by Bradley Cooper and PBS. She also created an award-winning storytelling series with AARP. She is the founder of Mom of My Mom and co-founder of The Care Den, an online membership community where caregivers come to belong, find support, and rediscover themselves beyond their role. Now four years into her own post-caregiving recovery, Revere consults caregivers through the before, during, and after stages of care.

Find Jacquelyn:

TikTok & Instagram: @momofmymom

The Care Den: https://thecareden.com/

Thank you to today’s sponsor, The Association for Frontotemporal Degeneration. To learn more about AFTD please visit https://www.theaftd.org/

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

In this episode, Stephanie speaks with psychic medium and medical intuitive Julie Ryan about spirit communication, end-of-life support, and the role of intuition in caregiving. Julie shares how caregivers can use "attention & intention" to stay connected with loved ones who are transitioning, even when verbal communication is no longer possible.

Together, they explore how intuition can be a powerful support for caregivers, offering comfort, clarity, and a deeper sense of connection.

About Julie Ryan:

Psychic Medium and Medical Intuitive Julie Ryan can communicate with spirits both alive and dead. Her book ‘Angelic Attendants: What Really Happens As We Transition From This Life Into The Next’ describes a series of events that involves angels, multitudes of deceased family and friends, the spirits of deceased pets, and countless serendipitous and miraculous moments. 

Each week, Julie scans callers on her 'Ask Julie Ryan' show which is heard in over 100 countries throughout the world and is ranked in the top 0.05% of podcasts. Julie is a businesswoman, an inventor, author, podcaster, and a serial entrepreneur. Julie’s Psychic and Medical Intuitive skills are learned.

Website:https://askjulieryan.com

Facebook:https://www.facebook.com/askjulieryan/

Instagram:https://www.instagram.com/askjulieryan/

YouTube:https://www.youtube.com/@askjulieryan

Free Gift for listeners/watchers: Audio and Digital copy of Angelic Attendants: What Really Happens As We Transition From This Life Into The Next: http://julieryangift.com

Thank you to today’s sponsor, The Association for Frontotemporal Degeneration. To learn more about AFTD please visit https://www.theaftd.org/

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

In today’s episode, Stephanie speaks with Dr. Jane Barratt about ageism, aging, and the systems that shape caregiving and healthcare. They discuss how ageist assumptions show up in daily life, in clinical decisions, and in policy, how ageism impacts caregiving and why caregiving should be treated as essential infrastructure rather than a private burden.

About Jane: 

Dr Jane Barratt is a globally recognised expert on ageing, ageism and public policy, with more than thirty years shaping international agendas. Her work has contributed to the UN Decade of Healthy Ageing, the WHO Global Report on Ageism and the movement for a UN convention on the rights of older people.

Today, Jane asks hard questions about the systems shaping how we live and age. She brings different voices to the same table to build consensus, challenge ageism and turn evidence into action for healthier lives.

The Arc of Ageing and forthcoming book, The Counterforce of Hope, examine the systems, assumptions and structures that shape how we experience ageing, and what needs to change.

Find Dr. Barratt on her substack: https://janebarratt.substack.com/

Thank you to today’s sponsor, The Association for Frontotemporal Degeneration. To learn more about AFTD please visit https://www.theaftd.org/

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

Stephanie Muskat speaks with Lisa Pahl, CEO and owner of The Death Deck, about how to normalize end-of-life conversations before a diagnosis or emergency forces us to. Lisa shares how her background in a farming community, her father’s leukemia, and years as a hospice social worker shaped her approach to death education, caregiver support, and advance care planning.

They also discuss common end-of-life misconceptions, especially around morphine, caregiver burnout, and how tools like The Death Deck, the End of Life Deck, and the Dementia Deck can help families reduce conflict and make decisions with more clarity.

About Lisa:

Lisa Pahl, LCSW, is the CEO and Owner of The Death Deck LLC, a company that creates

engaging tools to spark meaningful conversations about life, death, and everything in between.

A Licensed Clinical Social Worker with over 18 years of experience in hospice care and 8 years

in emergency medicine, Lisa brings compassionate expertise to helping individuals and families

navigate illness, dying, and grief. Through her work, she is dedicated to reducing fear around

death and empowering people to talk openly about what truly matters.

Find Lisa:
http://www.thedeathdeck.com
Instagram: http://www.instagram.com/thedeathdeck

Links mentioned:

Barbara Karnes booklet: https://bkbooks.com/products/pain-at-end-of-life-what-you-need-to-know-about-end-of-life-comfort-and-pain-management

Youtube video talking through the topic of pain medication at end of life: https://www.youtube.com/watch?v=IxCj9VWjmgA

Thank you to today’s sponsor, The Association for Frontotemporal Degeneration. To learn more about AFTD please visit https://www.theaftd.org/

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving

In today’s episode, Stephanie speaks with Dr. Ginny Wesson, a staff psychiatrist at Sinai Health System and a longtime leader in caregiver support at the Reitman Center. They discuss why it is imperative for dementia care to include both the person living with dementia and the care partner, and the research behind caregiver needs and the developing caregiver support programs to meet these needs.

Dr. Wesson shares the origins of the CARERS program, the research behind it, and how it has expanded across Ontario through Enhancing Care for Ontario Care Partners. 

About Dr. Ginny Wesson:

Dr. Virginia Wesson, MD, MSc, is a Staff Psychiatrist at the Sinai Health System, a Medical Director of the Enhancing Care Program, a Clinician Scientist at the Lunenfeld- Tanenbaum Research Institute and an Assistant Professor in the Department of Psychiatry at the University of Toronto in Ontario, Canada. 

Since arriving at Mount Sinai in 2006, she has devoted her efforts to working with older adults including extensive work with care partners of family members living with dementia. This has included significant involvement in the innovation, design and delivery of the clinical interventions that form the core of the Reitman Centre and Enhancing Care Programs (CARERS and TEACH group programs). 

To learn more about the Reitman Centre and its programs visit: https://www.sinaihealth.ca/areas-of-care/psychiatry/the-reitman-centre-for-alzheimers-caregiver-support-and-training

Thank you to today’s sponsor, The Association for Frontotemporal Degeneration. To learn more about AFTD please visit https://www.theaftd.org/

*The content shared on this podcast is for educational and informational purposes only. It is not intended to be a substitute for professional advice, diagnosis, or treatment, and it does not constitute therapy or counselling. If you are in need of mental health support or professional guidance, please reach out to a qualified healthcare provider or mental health professional. The views expressed by guests are their own and do not necessarily reflect those of the host.*

Visit us on our website to see all that we offer for caregiver support:

www.compassionincaregiving.com

For more visit our Instagram!
http://www.instagram.com/compassionincaregiving