Dementia Caregiver Isolation: The Power of Story to Find Your Community with AlzAuthors

In this heartfelt and important conversation, Laura welcomes Marianne Shuko, a registered nurse, author, and co-founder and manager of AlzAuthors—a global community of authors writing about Alzheimer's and other dementias from their personal experiences. They tackle the powerful reality that one of the most profound ways to navigate caregiving is through sharing and receiving personal stories.

Marianne explains the grassroots origins of AlzAuthors, why access to personalized experience is vital when so much information is "medicalized," and how a community of authors is making waves to break the stigma and loneliness of dementia care. This episode is a soulful reminder that you are not alone, and your story has the power to light the way for others.

Meet Marianne Shuko:

Marianne Shuko, RN, is a registered nurse, author, and a "dementia daughter" who brought years of clinical experience in hospital and memory care settings to her own caregiving journey. She is the co-founder and manager of AlzAuthors, which began as a small idea in 2015 and has grown into a global resource connecting readers to over 300 books and blogs that share the human experience of dementia.

Topics Discussed:

- The founding of AlzAuthors: a grassroots movement to support fellow caregivers.

- The profound power of story and shared experience to combat isolation.

- Why hearing personalized accounts is crucial in a heavily "medicalized" healthcare world.

- Breaking the stigma attached to a dementia diagnosis and why families hide it.

- The importance of seeking out available community resources and support.

- Marianne's personal journey: from nurse to author to a family caregiver when her stepfather was diagnosed.

- Why having professional knowledge doesn't stop the emotional confusion and "frozen" feeling when it becomes your own journey.

- The reality of juggling work, family, and managing three lives during peak caregiving.

- The value of a community that understands and supports authors writing about their experience.

Timestamps (Approximate):

00:00 - Welcome & Intro to Marianne Shuko of AlzAuthors

02:40 - The journey of AlzAuthors: From a one-month project to a global community

08:10 - The power of story: Why hearing personal experience is so important

14:45 - Tackling the stigma: Why people hesitate to talk about dementia

21:30 - The problem with "medicalized" resources and the value of personal stories

27:00 - Marianne's personal caregiving story: Writing the book before living the journey

32:10 - The disconnect: When professional knowledge meets personal crisis

38:35 - The reality of being the sole advocate and juggling multiple lives

44:20 - The emotional impact of caregiving when life doesn't stop

Key Takeaways:

- You are not alone. Sharing your story and receiving the stories of others is a powerful way to combat the isolation of caregiving.

- Stories break stigma. The reluctance to discuss dementia often insulates families from the very help they need.

- Professional knowledge isn't everything. Even with a background in healthcare, the emotional and practical demands of personal caregiving can feel confusing and overwhelming.

- Seek personalized resources. While medical resources are vital, look for communities like AlzAuthors for personal narratives that offer relatable guidance and emotional relief.

- The theme is shared. While every person's situation is unique, the core themes of the caregiving experience are shared—and incredibly valuable.

Resources Mentioned:

AlzAuthors Website: https://alzauthors.com/

AlzAuthors YouTube Channel: https://www.youtube.com/channel/UCLhTqQchoTUPk17w5oBEmjQ

AlzAuthors on Social Media: Twitter, Facebook, Pinterest, Instagram, and LinkedIn

Connect with Marianne Shuko & AlzAuthors

Website: https://alzauthors.com/

Connect with Laura Vaillancourt & the Life on Repeat Podcast:

Website: https://lifeonrepeatpodcast.com

Instagram: @lifeonrepeatpodcast

Facebook: Life on Repeat Podcast

YouTube: www.youtube.com/@LifeonRepeatPodcast

If this episode gave you a breath of hope, please like, subscribe, and share it with a caregiver or clinician who needs it. You are not alone.