AlzAuthors: Untangling Alzheimer's & Dementia AlzAuthors Featured on The Whole Care Network

In this podcast, host Marianne Sciucco is joined by an ensemble of talented poets to officially launch our anthology, Poetry for the Dementia Journey. This collection brings together caregivers who have personally navigated the complexities of caregiving, diagnosis, and emotional upheavals tied to Alzheimer's and dementia.


They write about many of the situations common to caregivers: the impact of the initial diagnosis, moving into assisted living or memory care, saying goodbye. From touching moments with loved ones to the nuanced challenges of caregiving, these poems offer solace, understanding, and a break from the isolating silence often surrounding dementia.


Whether you’re a caregiver, a family member, or someone seeking to understand the impact of Alzheimer's, this anthology and today’s episode provide a profound sense of connection and empathy. You'll experience a myriad of emotions, from sadness to joy, despair and hope. In the end, you will be comforted in knowing that you are not alone.


Takeaways:


·      Gain insight into the profound impact of personal storytelling on Alzheimer's.


·      Understand the unique challenges and emotional impact of early onset Alzheimer's on families.


·      Explore the benefits of creative expression in providing holistic care for individuals with dementia.


Purchase Poetry for the Dementia Journey


Timestamps and page numbers:


2:30 Mariana Mcdonald, Diagnosis, p.30


5:06 Austin Alexis, Dementia Intrigue (not in book)


7:12 Sue Fagalde Lick, You Dance, p.80


8:42 Gail Thomas, A Daughter's Garland, p.114


10:28 Judith H. Montgomery, Mother's Day at Aspen Ridge Assisted Living, p.101


12:10 Ann Campanella, Child Mother, p.62


13:43 Margaret Stawowy, Mother Country, p.162


15:33 Eileen Kennedy, Ritual, p.59


16:41 Joy Johnston, At the Crossroads, p.167


17:47 Sherri Levine, Stealing Flowers from the Neighbors, p.147


20:37 Patricia McKernon Runkle, Given the Mother Word PURE, p.119


21:52 Alan Bern, Boxae, p.17


24:59 Kelly Dumar, Mrs. Bean's Snow, p.158


29:00 Renee Terry Mucci, Life, p.127


30:55 Eileen Kennedy, End of Day, p.60


31:59 Mariana Mcdonald, All the Books, p.31


34:10 Austin Alexis, The Patient, p.95


36:58 Gail Thomas, Alchemy, p.116


39:47 Alan Bern, Dream of Tangles, p.15


40:40 Judith Montgomery, Sometimes, p.103


43:56 Kelly Dumar, How He Asks, p.157


45:15 Ann Campanella, Beyond Words, p.63


47:01 Margaret Stawowy, Signs of Her Decline, p.163


About the Moderator


Marianne Sciucco


About the Podcast


AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others.


Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys.


We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here.


Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here.


Thanks for listening.


We are a Whole Care Network Featured Podcast


Proud to be on The Health Podcast Network


Find us on The World Podcast Network and babyboomer.org


Want to be on the podcast? Here’s what you need to know


We've got merch!

How would you navigate the complication of having your spouse display Dissociative Identity Disorder - previously called Multiple Personality Disorder - alongside symptoms of Alzheimer’s? Today, we delve into the memoir "Don't Forget to Dance" with Marc Alderdice for our June Books & Chit Chat with Aging and Amazing. Marc takes us on a poignant journey through his wife Mary's battle with early-onset Alzheimer's, starting at age 59, and the extraordinary challenges they faced together, including her struggles with dissociative identity disorder.


We explore the deeply personal experiences that shaped Marc's narrative, his wife Mary’s determination to do all she could to prepare herself for a dementia diagnosis and how his scientific background influenced their approach to Mary's care. Marc also shares how he embraced the role of a male caregiver in a predominantly female sphere, the importance of self-care, and the insights gained from support groups continuing to meet virtually since Covid.


You'll hear about the significance of activities and physical gestures in communicating with nonverbal loved ones, the inspiration behind the book's title, and how Mary, despite her diagnosis, found joy in new hobbies and activities.


Join us as we uncover themes of love, resilience, and the relentless pursuit of happiness amidst the trials of Alzheimer's.


Quote: 


I think our journey is positive and encouraging in the sense that it shows you really can make the best out of a bad situation. The person with Alzheimer's and the loved ones can be as happy as possible. It may take some work, and it may take a little bit to change your mindset for how you approach things, but it certainly worked for us. - Marc Alderdice


In this episode, you will: 


Understand the unique experiences of the Alzheimer's journeyPrepare yourself emotionally and mentally for the impact of Alzheimer's,Discover strategies to arm yourself with the resilience and coping strategies needed to face the journey ahead.Explore the relationship between dissociative identity disorder and Alzheimer'sDiscover valuable techniques for communicating with nonverbal Alzheimer's patients, fostering deeper connections and understanding.

After the Podcast


Buy the Book 


Listen to Previous Podcast with Marc


Find more about Marc


Follow Marc on Social Media:


LinkedIn


Facebook


About the Podcast 


AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys.


We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here.


Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here.


Thanks for listening.


We are a Whole Care Network Featured Podcast


Proud to be on The Health Podcast Network


Find us on The World Podcast Network and babyboomer.org


Want to be on the podcast? Here’s what you need to know


We've got merch! Shop our Store


Purchase our new anthology, Poetry for the Dementia Journey

Welcome back to the podcast where we share the powerful stories of those who have been impacted by Alzheimer's and dementia. In this episode, Christy and Marianne sit down with Sue Fagalde Lick, a remarkable poet, author, musician, and dog lover from the Oregon coast. Sue shares her deeply moving story of caring for her husband, Fred, throughout their Alzheimer’s journey until his passing.


We dive into Sue's earlier work, Childless by Marriage, and explore her latest writings on widowhood and life after dementia, including her poetry anthologies and newly published memoir,  No Way Out of This: Loving a Partner with Alzheimer’s, which beautifully intertwines the romance and challenges of life with Fred. Sue opens up about the support she unexpectedly received from friends, the therapeutic value of writing, and the importance of maintaining agency and preparedness as a caregiver.


Sue's candor about the hardships of caregiving in a rural area, the emotional impact of rehoming pets, and the solace she finds in music and community will resonate deeply with listeners. 


We also discuss the creation of our new anthology, Poetry for the Dementia Journey, for which Sue volunteered to serve as editor and formatter. 


Join us for a heartfelt conversation that highlights resilience, love, and the importance of support systems in the caregiving journey.


Key Takeaways


Living Through Dementia TwiceCoping with a Spouse’s Alzheimer'sEmbracing the Caregiver RoleThe Difficulties of Relocating for Medical CareThe Healing Power of Writing The Role of Pets in Caregiving and Therapy

Learn more about Sue at AlzAuthors.com


Connect with Sue


Website


Blog


Facebook author page


Twitter


Can I do It Alone? on Substack


Purchase Sue’s books


No Way Out of This


Gravel Road Ahead


Childless by Marriage


Blue Chip Stamp Guitar


Dining Alfresco with My Dog


About the Hosts


Marianne Sciucco


Christy Byrne Yates


About the Podcast


AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys.


We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here.


Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here.


Thanks for listening.


We are a Whole Care Network Featured Podcast


Proud to be on The Health Podcast Network


Find us on The World Podcast Network and babyboomer.org


Want to be on the podcast? Here’s what you need to know


We've got merch! Shop our Store


Purchase our new anthology, Poetry for the Dementia Journey

This podcast is a replay of our recent panel discussion on LGBTQ+ caregiver concerns, hosted by Sue Evans of Kensington Senior Living and AlzAuthors. Authors Laura Davis, Christopher MacLellan, Vincent Zappacosta, and Douglass Christensen joined Sue, Christy and I as we delved into the complexities of caregiving within the LGBTQ+ community. They shared personal stories, insightful advice, and meaningful discussions about their caregiving journeys, offering knowledge and support to others currently caring for a loved one.


Empathy emerged as a recurring theme during the discussion. The group explored how understanding and compassion are foundational to a positive caregiving experience, especially in the face of stigmas surrounding dementia and LGBTQ+ identities.


The panelists underscored the critical importance of legal documents such as power of attorney and healthcare proxies. These tools grant caregivers the authority needed to make vital decisions during emergencies. The LGBTQ+ community, in particular, benefits from these preparations to navigate potential biases and ensure their loved ones’ wishes are honored. They emphasized that preparing documents and passwords in advance can prevent needless complications, resonating with caregivers who might find themselves thrust into unexpected situations.


The episode illuminated unique challenges faced by LGBTQ+ caregivers. Issues such as isolation and the need to select healthcare providers comfortable with their orientation were discussed candidly. Positive experiences in inclusive areas like California and New York City contrasted with occasional instances of discrimination, as shared by Vincent and Douglas when they faced resistance in having Douglass recognized as family. Legal tools and personal anecdotes underscored the power of preparedness in overcoming personal bigotry and ensuring smooth caregiving and end-of-life processes.


The insights from this episode of the AlzAuthors podcast offer hope and guidance for caregivers, especially those navigating the additional layers of complexity tied to LGBTQ+ identities.


About the Authors


Laura Davis, The Burning Light of Two Stars


Christopher MacLellan, What's the Deal with Caregiving?


Vincent Zappacosta and Douglass Christensen, Dementia-Mama-Drama


About the Moderators


Marianne Sciucco, Blue Hydrangeas, an Alzheimer's love story


Christy Byrne Yates, Building a Legacy of Love: Thriving in the Sandwich Generation


Kensington Senior Living


About the Podcast


AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys.


We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here.


Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here.


Thanks for listening.


We are a Whole Care Network Featured Podcast


Proud to be on The Health Podcast Network


Find us on The World Podcast Network and babyboomer.org


Want to be on the podcast? Here’s what you need to know


We've got merch! Shop our Store


Purchase our new anthology,

Vicki Tapia is a founder of AlzAuthors and the author of Somebody Stole My Iron: A Family Memoir of Dementia. In this replay of a recent Aging and Amazing book club discussion, Vicki shares profound insights from her personal experiences. She discusses how caring for two parents with dementia placed a considerable strain on her personal support system. A long-distance caregiver, she found the challenges of managing her parent's concerning behaviors and medical needs from 200 miles away daunting. Their rural community and limited medical resources confounded the situation as well. Her only sibling's chosen absence from the situation was another stressor. Newly married, she was reticent to lean on her supportive physician husband too hard. Her adult children were also supportive but lived far away, making it difficult to ask them for help.


A lifelong journaler, she resolved her feelings and worries by putting pen to paper, eventually coming to the realization that she had written a book. Initially, she hesitated to publish her book due to privacy concerns but was encouraged to do so by positive feedback. Her decision to publish was also influenced by her desire to help others navigate similar experiences. Somebody Stole My Iron was published in 2014 and was a finalist for the High Plains Book Awards in 2015. Each chapter ends with "Lesson Learned," imparting valuable insight and inspiration to caregivers.


Three Key Takeaways


1.    Finding Humor in Hardships: Vicki emphasizes the importance of finding humor in difficult situations, which can provide emotional relief and resilience.


2.    The Necessity of Self-Care: Vicki's guilt over taking a trip is a common sentiment among caregivers. Her mother's philosophy, "life is for the living," underscores the need for self-care and balance, reminding caregivers to also focus on their own well-being.


3.    Patience and Kindness: Through her experience, Vicki learned the crucial caregiving virtues of patience, respect, and kindness. She advises new caregivers to meet their loved ones where they are and to let go of guilt and expectations.


Learn more about Vicki at AlzAuthors.com.


About the Moderators


Marianne Sciucco, Blue Hydrangeas, an Alzheimer's love story


Christy Byrne Yates, Building a Legacy of Love: Thriving in the Sandwich Generation


Purchase our new anthology, Poetry for the Dementia Journey


About the Podcast 


AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys.


We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here.


Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here.


Thanks for listening.


We are a Whole Care Network Featured Podcast


Proud to be on The Health Podcast Network


Find us on The World Podcast Network and babyboomer.org


Want to be on the podcast? Here’s what you need to know


We've got merch! Shop our Store


 

Welcome to another insightful episode of Untangling Alzheimer's and Dementia, and a replay of our recent book club with Aging and Amazing. In this episode, we bring together a panel of poets who share a common thread—each has navigated the challenges of caring for a loved one with dementia. Your hosts, Marianne Sciucco and Ann Campanella, along with guest authors Daniel Potts, MD, Sue Fagalde Lick, Sherri Levine, and Margaret Stawowy delve into the world of poetry as a powerful outlet for expressing the complex emotions tied to Alzheimer's and dementia care.


Listen as these courageous caregivers discuss how poetry provides solace and a sense of connection amidst the trials of caregiving. From Sherri Levine's poignant reflections on taking flowers to her mother in hospice, to Margaret Stawowy's candid portrayal of medicating her mother, and Dan Potts’s therapeutic use of art and poetry to connect with his father, each story shines a light on the personal battles and moments of tenderness that define the caregiving experience.


We also have laughter amid the hardships as Sue Lick shares a day in the life at a nursing home through her evocative poetry. Don't miss her heartwarming tale of memory care residents joyously indulging in ice cream.


Tune in to find inspiration, empathy, and perhaps a new way to process your own experiences through the beauty of poetry.


Three Key Takeaways


1. Therapeutic Expression: Poetry serves as a potent form of therapy, helping caregivers process complex emotions and find joy amidst adversity.


2. Community and Support: Sharing stories and artistic expressions can cultivate a community of support, making the dementia journey less isolating.


3. Finding Humor: Embracing moments of joy and laughter is crucial, as highlighted by our lighthearted story, showing the importance of positivity in caregiving.


About the Authors


Sherri Levine, Stealing Flowers from the


Neighbors


Sue Fagalde Lick, Gravel Road Ahead


Daniel Potts, MD, Bringing Art to Life


Margaret Stawowy, co-editor of Storms


of the Inland Sea, an anthology with Jim Cokas


About the Moderators


Ann Campanella, What Flies Away and The Beach Poems


Marianne Sciucco, Blue Hydrangeas, an Alzheimer's love story


Pre-order our new anthology, Poetry for the Dementia Journey.


Register for our Poetry Reading June 3 at 4 pm EST.


About the Podcast 


AlzAuthors is the global community of authors writing about Alzheimer’s and dementia from personal experience to light the way for others. Our podcast introduces you to our authors who share their stories and insights to provide knowledge, comfort, and support. Please subscribe so you don’t miss a word. If our authors’ stories move you, please leave a review. And don’t forget to share our podcast with family and friends on their own dementia journeys.


We are a 501(c)(3) charitable organization totally reliant on donations to do what we do. Your generosity will help cover our many operating costs, which include website hosting and maintenance fees, service charges to keep things running smoothly, and marketing expenses to promote our authors, expand our content, improve our reach, and more. Our ongoing work supports our mission to lift the silence and stigma of Alzheimer’s and other dementias. To sustain our efforts please donate here.


Ideas and opinions expressed in this podcast belong to the speakers and not AlzAuthors. Always consult your healthcare provider and legal and financial consultants for advice on any of the topics covered here.


Thanks for listening.


We are a Whole Care Network Featured Podcast


Proud to be on The Health Podcast Network


Find us on The World Podcast Network and babyboomer.org


Want to be on the podcast? Here’s what you need to know


We've got merch! Shop our Store