This week on Dementia Discussions, I sit down with someone very close to my heart—my childhood best friend, Madeline Jaye. We reconnected after many years, and I was deeply moved to learn that she’s been navigating her own journey as a caregiver to her mother, Bonnie, who now lives with Alzheimer’s and other forms of dementia. Madeline doesn’t just share her caregiving story—she’s also transformed her experience into a one-woman play that’s as hilarious as it is heartbreaking.

In this episode, Madeline and I reflect on what it means to care for someone who didn’t always care for you, how humor can be a powerful coping mechanism, and the complexity of aging, memory loss, and family dynamics. You’ll hear about the signs she missed, the chaos she uncovered, and the incredibly creative outlet that helped her process it all. Whether you're a caregiver, a theater lover, or simply someone interested in the raw truths of dementia, this conversation will stay with you.

Episode Highlights:

 [1:43] Reconnecting with Madeline and discovering her caregiving story
 [3:15] When the signs started—how Bonnie's independence masked memory loss
 [5:27] Understanding “cognitive reserve” and its role in delaying diagnosis
 [7:50] The pivotal moment when Madeline confronted her mom
 [10:36] Navigating testing, early resistance, and inconclusive results
 [12:53] Bonnie’s home life and hygiene—early warning signs surface
 [17:41] The uphill battle of introducing help and home care
 [20:04] Strategies and resistance to caregiving support
 [23:40] Learning to separate the disease from the person
 [26:17] How Madeline’s play came to life—and the powerful message behind it
 [34:56] Playing every character in a solo performance
 [35:26] Humor in the heartbreak—yes, there’s bacon in the dish cabinet
 [39:27] Managing Bonnie’s bills, hoarding, and household neglect
 [44:36] The overwhelming task of stepping into her mom’s financial chaos
 [47:05] What made it into the play—and what may come next
 [48:17] Why writing became Madeline’s most powerful coping tool
 [50:01] Where and when to catch Dementia and Other Exit Strategies live
[51:22] Reflecting on Bonnie—the dynamic woman we both knew 

Links & Resources:

• Madeline Jaye's Play Info: Dementia and Other Exit Strategies
  September 26 & 27 at IRT Theater, 154 Christopher Street, NYC
• Instagram: @madjmoves

Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.

I’m honored to welcome Steve Lavapies, a devoted son and a thoughtful member of one of our UCLA caregiver support groups. Steve shares the deeply personal journey of caring for his mother, a brilliant and resilient woman who immigrated to the U.S., became a physician, and faced a long and complex decline due to physical illness and dementia.

In this episode, Steve opens up about the realities of caregiving as an only child, the emotional and logistical weight of moving his mom through assisted living, memory care, and ultimately hospice. We talk about guilt, grief, resilience, and the hard but beautiful truth that connection, even in decline, is possible.

Episode Highlights:

[1:20] - Introducing Steve, a fellow UCLA support group member and caregiver for his mom
 [2:31] - A portrait of Steve’s mom before dementia—her bold immigration story and medical career
 [4:33] - Moving to LA to be closer to family and transitioning into assisted living
 [6:27] - Early physical decline and recognizing the signs of needing more care
 [8:39] - The beginning signs of cognitive decline during the pandemic
 [12:10] - A shocking moment during cognitive testing and a mindset shift in caregiving
 [14:15] - Navigating caregiving solo as an only child
 [18:59] - Dealing with facility limitations, caregiver compatibility, and daily oversight
 [20:46] - When her sharp personality began to fade, and what Steve missed about it
 [25:06] - The transition to memory care—logistics, emotion, and adaptation
 [29:46] - Watching physical abilities diminish, and the bittersweetness of presence
 [33:28] - The parallels between dementia care and parenting, and giving yourself permission to rest
 [35:49] - The fall that changed everything and led to hospice care
 [41:46] - Experiencing grief, guilt, and—eventually—relief
 [44:15] - The value of support groups and shared stories in the caregiving journey
 [47:18] - The moment of recognition in community—“We had the same mother!”
 [48:13] - Reflecting on Steve’s strength, his mother’s legacy, and the healing power of story

Links & Resources:

• Visit the podcast website: https://dementiadiscussions.net
• Call Barbara directly at 310-362-8232

If this episode touched you or helped you feel a little less alone, please consider rating, following, sharing, and reviewing the podcast. Your support makes a world of difference, and helps this community of caregivers continue to grow. Thank you so much for listening, and I’ll see you next time on Dementia Discussions. 💙

Welcome back to Dementia Discussions. In this heartfelt episode, I sit down with my dental hygienist, Lorena Llamas, who opens up about a deeply personal journey—caring for her beloved father, recently diagnosed with Alzheimer’s. What started as small, everyday memory lapses soon led Lorena down a path of advocacy, navigating doctors, family dynamics, and the emotional rollercoaster of watching a parent change before your eyes.

Lorena shares tender stories about her dad's lively spirit, his close bond with family, and how a recent family cruise turned into a powerful wake-up call about the realities of dementia. We talk about everything from medical advocacy and caregiver burnout to finding humor in the hard moments and the importance of social connection. This conversation is full of heart, wisdom, and the kind of real talk that caregivers everywhere will relate to.

Episode Highlights:

 [2:06] - Lorena introduces her father, a hardworking man with a big heart and a history of resilience.
 [3:34] - The first signs of memory loss and how repeated questions raised red flags.
 [6:33] - Struggles with getting a diagnosis and advocating through medical skepticism.
 [10:50] - Family dynamics and the neurologist’s push for more frequent interaction.
 [14:15] - Sweet memories and painful moments of forgetfulness begin to unfold.
 [16:54] - A cruise trip becomes a wake-up call: wandering, confusion, and safety concerns.
 [20:47] - The challenges of tracking and protecting a loved one with dementia.
 [28:00] - Public outbursts, constant apologies, and navigating loss of social filters.
 [36:11] - Lorena’s concerns about her mom’s emotional and physical toll as the primary caregiver.
 [39:10] - Exploring adult day programs and activity options for increased socialization.
 [43:44] - Watching long-term memory fade: the heartbreaking loss of a signature.
 [49:26] - Coping through humor, family support, and holding on to moments of joy. 

Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.

Welcome back to Dementia Discussions! I’m so grateful to be back with you after a bit of a hiatus, and today’s episode is a truly meaningful one. I sit down with Dr. Miriam Winthrop, an adult and geriatric psychiatrist whose compassionate approach and wealth of knowledge make her a true gem in the dementia care world. We open up about the recent California fires that disrupted both our lives and how trauma and caregiving intersect, especially in these unpredictable times.

This conversation dives deep into the emotional, medical, and behavioral complexities of dementia. Dr. Winthrop shares how she supports individuals from the early signs of cognitive decline to the later stages of dementia, helping both patients and their families manage symptoms, medication, and caregiving strategies. Whether you’re navigating a new diagnosis or have been caregiving for years, this episode offers insight, validation, and practical tools for every step of the journey.

Timeline Summary

[1:33] – Introducing Dr. Miriam Winthrop and reconnecting after the LA fires
[6:37] – How patients find their way to a geriatric psychiatrist and the signs of prodromal dementia
[10:24] – The complexity of diagnosing mild cognitive impairment (MCI)
[15:43] – Understanding MCI, psychiatric symptoms, and the role of early treatment
[18:58] – Leqembi and considerations around early intervention and clinical trials
[21:28] – Aricept, Namenda, and their behavioral uses in dementia care
[28:15] – Behavioral challenges in moderate dementia and non-medication strategies
[31:39] – Communicating creatively with loved ones using the DARE method
[36:20] – What causes delirium and how to spot it in dementia patients
[40:19] – The emotional toll and shifting family dynamics in the middle to later stages
[45:41] – Acceptance, letting go of expectations, and redefining “normal”
[47:57] – Medication tapering and palliative care considerations in late-stage dementia
[51:57] – When hospice is involved and the importance of rational medication management

Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.

Welcome to the first episode of season three of Dementia Discussions! In this heartfelt episode, I sit down with Charlene, a dedicated caregiver navigating the emotional and practical challenges of supporting her sister-in-law with Alzheimer’s. Charlene brings a unique perspective as a sister-in-law and sibling, sharing deeply personal stories about her family's journey through this devastating disease.

We explore the complexities of caregiving, from handling denial and family dynamics to managing difficult conversations and making tough decisions. Charlene’s resilience, compassion, and humor shine through as she offers practical tips, emotional insights, and a dose of inspiration for anyone on a caregiving journey. This conversation is a powerful reminder that even in the hardest moments, there is love, laughter, and hope.

Episode Highlights:

[0:00] - Charlene shares her caregiving mantra: D.A.R.E. (Don’t Argue, Reason, or Explain).
[0:41] - Barbara welcomes Charlene and introduces her caregiving journey.
[5:59] - The early signs of Alzheimer’s: identifying memory issues and the challenge of family denial.
[10:46] - The driving dilemma: taking away keys and navigating emotional fallout.
[15:09] - Strengthening family bonds and maintaining a united front in caregiving.
[19:50] - Addressing the role of denial in Alzheimer’s diagnoses and caregiving.
[27:05] - Stories of wandering: handling safety concerns and learning to adapt.
[34:42] - The need for outside help: hiring caregivers and planning for future care.
[35:39] - Charlene’s self-care strategy: the power of a “three-hour vacation.”
[39:26] - Building a support network and the importance of acceptance in caregiving.
[45:24] - Creative caregiving solutions: using scrapbook projects and games to connect.
[48:24] - Patience and compassion: navigating daily challenges with grace. 

Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.

In this poignant episode, I sit down with Andrew Bloomenthal, a writer and caregiver, to delve into his heartfelt story about navigating his father’s journey with Parkinson’s-related dementia. Andrew’s article in Boston Magazine struck a chord with readers, and today he joins us to share the deeply personal moments that shaped his caregiving experience. From navigating family dynamics to finding moments of levity and grace in the midst of confusion, Andrew’s story is one of resilience, vulnerability, and love. This episode is a testament to the strength of caregivers and the unbreakable bonds of family. 

Episode Highlights:

[2:18] - Andrew introduces his father, a compassionate personal injury lawyer with a zest for life and a talent for music, photography, and exercise.
 [6:03] - The early signs of cognitive decline and the emotional hurdles of recognizing and addressing them.
 [11:54] - Andrew reflects on the difficulties of maintaining patience and how caregivers commonly experience this challenge.
 [16:22] - Struggles with medication compliance and how moving to an assisted living facility eased those challenges.
 [24:18] - The unforgettable courthouse day: a surreal, improvisational moment of caregiving that highlights the power of human connection.
 [35:07] - A stranger’s act of kindness in the courthouse and how it became a transformative moment for Andrew and his father.
 [43:39] - The importance of sharing caregiving stories and why Andrew believes his father would have been proud of how he was honored.

Resources:

Andrew Bloomenthal’s Boston Magazine article My Dad’s Last Day in Court

https://www.bostonmagazine.com/news/2024/08/13/dementia/ 

Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.

In this heartfelt episode of Dementia Discussions, I’m joined by the incredible Kitty Norton, a former assistant editor turned caregiver, blogger, and filmmaker. Kitty shares her inspiring journey from her mother’s dementia diagnosis to becoming her primary caregiver, a role that profoundly changed her life. We explore her transition into advocacy through her candid blog, Stumped Town Dementia, and her documentary film Wine, Women, and Dementia, which is now airing on PBS.

Kitty brings her signature humor and raw honesty as we discuss caregiving challenges, family dynamics, and how humor can be a lifeline in even the most difficult moments. From navigating the "rage stage" to finding unexpected community in caregiver forums, Kitty’s story is one of resilience, love, and laughter in the face of adversity.

Episode Highlights:
[0:46] - Welcoming Kitty Norton and diving into her mom’s dementia diagnosis.
[3:20] - Kitty’s early realizations about her mom’s condition and navigating the diagnosis process.
[8:10] - Making the courageous decision to move to Portland and care for her mom Full-time.
[11:10] - Stories from the “rage stage” and how dementia changed her mom’s personality.
[17:03] - The life-saving guidance of geriatric psych specialists and forums.
[29:32] - How Kitty’s blog, Stumped Town Dementia, became a lifeline for caregivers worldwide.
[38:40] - Creating Wine, Women, and Dementia: A journey of healing and storytelling.
[49:23] - PBS distribution and Kitty’s mission to bring caregivers together through her film. 

Connect with Kitty Norton:

• Kitty Norton’s blog: Stumped Town Dementia
• Wine, Women, and Dementia documentary: Official Website

Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.

In this episode, I had the pleasure of speaking with Sherri, a devoted caregiver whose husband Ray has been diagnosed with Lewy body dementia. Sherri shares her journey, from noticing the first subtle changes in Ray's behavior to the emotional and practical challenges they face today.

We delve into how Ray's fearless personality and active lifestyle shifted dramatically as the disease progressed, and how Sherri has had to adapt to these changes. This episode is a touching reminder of the resilience and love that caregivers embody, and it offers insights and advice that can help others facing similar struggles.

Episode Highlights:

[01:32] - Sherri describes her husband Ray's fearless personality before his diagnosis.

[07:25] - Discussing the changes in Ray’s behavior and the initial signs of cognitive decline.

[10:50] - The difficulty in getting a proper diagnosis and the eventual discovery of Lewy body dementia.

[18:57] - Sherri's efforts to keep Ray active and engaged despite his resistance.

[22:29] - The tough decision to stop Ray from driving and the emotional impact it had on him.

[30:28] - Sherri shares the emotional and practical challenges of adjusting to Ray's cognitive changes.

[43:33] - The importance of support groups and meditation in Sherri's caregiving journey.

[48:51] - Sherri’s strategies for maintaining patience and emotional stability.

Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.

In this heartfelt episode of Dementia Discussions, I'm joined by Robin Degtjarewsky, a listener who reached out to share her inspiring story about caring for her mother, who lives with dementia. Robin opens up about her journey from dealing with her mother's hoarding issues to managing her care from a distance and navigating the challenges that come with dementia. Robin shares the unexpected silver linings that have brought her closer to her mom and offers valuable tips for other caregivers facing similar challenges.

Join us as we delve into Robin's personal experiences, the emotional rollercoaster of caregiving, and the practical steps she took to ensure her mother received the best possible care. Whether you're a caregiver yourself or want to understand the complexities of dementia, this episode offers a compassionate and insightful perspective.

Episode Highlights:
[1:24] - Introduction of Robin and the episode's focus on her caregiving journey
[5:29] - Discussing the early signs of dementia and Robin's realization that something was wrong.
[10:06] - Robin's emotional response to her mother's forgetfulness and the initial stages of her diagnosis.
[16:54] - The transition from hoarding to assisted living and the emotional impact on Robin.
[25:09] - Navigating the ups and downs of caregiving, including moments of gratitude and frustration.
[34:52] - The importance of enjoying small moments and building a stronger relationship despite the challenges.
[41:04] - Meditation and mindfulness as coping mechanisms for stress and anxiety
[46:01] - The role of a supportive network, including family and friends, in managing the caregiving journey.

Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.

In this episode, I sat down with Melanie, a member of my dementia with Lewy body support group at the UCLA Mary S. Easton Center. Melanie bravely shares her journey as the sole caregiver for her husband, Monty, who's facing a multitude of health challenges, including multiple system atrophy (MSA), diabetes, and dementia.

Through our candid conversation, Melanie opens up about the daily struggles and joys of caring for her beloved husband while striving to maintain her own identity. Her story is one of resilience, love, and finding gratitude in the face of adversity. Monty is a former composer, musician, and rabbi who was diagnosed with MSA in 2019. In addition to MSA, Monty also has type 1 diabetes, mild to moderate dementia, and is currently undergoing dialysis for stage five kidney failure.

Episode Highlights:

[1:14] - Melanie introduces her husband, Monty, and his background as a composer, musician, and rabbi.

[3:14] - Monty's diagnosis of multiple system atrophy (MSA) and its two subtypes, MSA-C and MSA-P.

[6:36] - Monty's age and retirement shortly after his diagnosis.

[8:22] - The progression of Monty's dementia and its impact on his work and daily life.

[11:30] - Challenges with eating and Melanie's strategies to help Monty maintain his dignity.

[16:49] - The impact of Monty's retirement on his mental health.

[23:17] - Melanie's exhaustion and the importance of support groups in her life as a caregiver.

[26:56] - Melanie's strategies for self-care, including naps, living in the moment, and finding humor.

[32:28] - The lack of support from family members and the strain it puts on Melanie as the sole caregiver.

[38:45] - Melanie's fear of losing her own identity and holding on to personal interests.

[44:03] - Melanie's plans to start her own MSA support group for caregivers in the Pacific Time Zone.

[45:16] - The importance of being of service to others and finding gratitude in the face of adversity.

Do you have a caregiving story to share? Barbara would love to hear from you! Please leave her a message at 310-362-8232 or send her an email through DementiaDiscussions.net. If you found value in today's episode, please don't forget to rate, follow, share, and leave a review. Your feedback helps us reach more listeners and continue producing this content.