Dementia Discussions

Love, Guilt, and the Limits of Caregiving

Tue, 11 Aug 2026 04:00:00 -0400

In this episode, I sit down with Denise Stiel, a member of my caregiver support group who is navigating an incredibly difficult chapter with her husband, Norman. Denise and Norman have been married for 61 years. He was a brilliant, accomplished attorney who graduated from UCLA at just 19, built a successful career, and deeply loved his children and grandchildren. But as Norman’s ability to manage everyday life began to change, Denise found herself searching for answers—and struggling to get the medical guidance and support she desperately needed.

Denise is remarkably candid about what dementia caregiving can really look like: the repeated questions, the demands, the financial messes left behind, the guilt of not bringing a spouse home, and the exhaustion that comes from being on call 24/7. We talk about recognizing cognitive decline when someone can still test remarkably well, trusting what you see at home, navigating assisted living, setting boundaries, and what “taking care of yourself” actually means for a caregiver. Denise also shares the practices helping her stay centered as she continues to show up for Norman without losing herself in the process.

Episode Highlights
[0:55] - Welcoming listeners back and inviting caregivers to share their stories

[1:56] - Meet Denise Stiel and hear how our caregiver connection began

[2:49] - Remembering Norman before dementia and their 61-year marriage

[4:48] - Denise’s frustrating search for answers and a clear diagnosis

[7:15] - How serious medical crises complicated Norman’s cognitive decline

[9:00] - When strong cognitive test scores don’t reflect life at home

[10:42] - Looking beyond testing to changes in everyday functioning

[12:08] - Denise’s health challenges and the guilt of needing more help

[13:01] - Finding a care setting that can better support Norman

[14:11] - The emotional challenge of hearing “I want to come home”

[15:00] - How constant requests can slowly wear a caregiver down

[16:00] - Balancing Norman’s independence with the need to keep him safe

[17:21] - Discovering unpaid bills and changes in financial management

[18:53] - Untangling years of bookkeeping, taxes, and missing financial records

[21:48] - Looking back at the warning signs that were easy to miss

[22:30] - Why caregivers need to trust what they’re seeing at home

[23:16] - Keeping Norman connected to friends, family, and meaningful activities

[25:03] - Navigating Norman’s unhappiness while knowing he needs more care

[25:46] - How Denise’s children support her through difficult care decisions

[27:08] - Why bringing Norman home would create another caregiving burden

[28:18] - Recognizing relationship patterns and learning to hold firm boundaries

[29:03] - Facing caregiver burnout and accepting what Denise can realistically manage

[30:11] - What taking care of yourself really means as a caregiver

[31:41] - Working through the guilt that comes with difficult care decisions

[32:17] - Creating space to be Norman’s wife, not only his caregiver

[33:10] - Preparing for the next move while accepting an uncertain future

[35:33] - Why sometimes “no” really is a complete sentence

[36:08] - Using meditation and journaling to manage caregiver stress

[37:17] - Denise’s unwavering commitment to seeing Norman through this journey

[38:04] - Denise’s message to other caregivers: “This too shall pass”

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.

When a Trusted Helper Becomes a Caregiver

Tue, 14 Jul 2026 04:00:00 -0400

When someone has been part of the family for years, it's only natural for their role to grow over time. A trusted housekeeper or personal assistant may begin helping with grocery shopping, transportation, meal preparation, or even personal care. But when does that evolution become a problem? And how do families know when it's time to bring in professional caregiving support?

In this episode, I'm joined by Steve Barlam, CEO of JFS Care and former president of the Aging Life Care Association. Together, we unpack one of the most common situations families face as dementia and aging progress: when a familiar helper gradually becomes a caregiver without the training, protections, or support needed for the role. We discuss the warning signs to watch for, the different ways families can hire care, the legal and financial considerations many people overlook, and an innovative caregiving model designed to make quality care more affordable while better supporting professional caregivers.

Episode Highlights

[0:00] - Steve explains why supporting caregivers ultimately leads to better care for older adults.

[1:02] - I introduce Steve Barlam and explain why this conversation is so relevant for families navigating dementia care.

[2:50] - A familiar scenario: when a longtime housekeeper slowly takes on caregiving responsibilities.

[6:26] - Why some families recognize the need for change while others believe everything is still working.

[7:51] - When trusted helpers realize they've reached the limits of what they're comfortable or qualified to do.

[8:34] - The red flags that signal it's time to rethink a caregiving arrangement.

[10:15] - The safety risks that arise when someone provides personal care without proper training.

[11:50] - Steve breaks down the three primary ways families hire caregivers and the pros and cons of each.

[15:09] - Where services like Care.com fit into the caregiving landscape.

[15:39] - Understanding agency-based care and what families receive beyond simply hiring a caregiver.

[17:51] - The legal risks of paying caregivers "under the table" and why families should understand employment laws.

[20:53] - Why agencies provide valuable backup support when caregivers become unavailable.

[22:07] - The rising cost of long-term care and why traditional models are becoming difficult for many families.

[24:28] - Steve introduces Care Family, an alternative live-in care model designed to reduce costs while improving caregiver support.

[26:00] - Why investing in caregivers ultimately benefits the people receiving care.

[28:47] - Who helps oversee the Care Family model and what families should expect.

[30:15] - How professional caregivers can work alongside trusted housekeepers instead of replacing them.

[31:55] - Why experienced caregivers notice subtle health changes that others may miss.

[32:39] - Helping family members return to being daughters, sons, and spouses instead of full-time caregivers.

[34:20] - Practical ways to define everyone's role without creating conflict or resentment.

[36:08] - How Care Family is expanding throughout Southern California.

[38:10] - Understanding the costs behind the Care Family model and why doing things legally protects everyone involved.

[40:03] - Why JFS Care also offers shorter caregiving visits for families just beginning to introduce support.

[43:31] - Helping older adults become comfortable with accepting care from someone new.

[44:16] - The relationships that often develop between caregivers and the people they support.

[45:32] - Medicare's GUIDE program and other resources that may help make care more accessible.

The Long Goodbye: 15 Years of Loving My Husband Through Dementia

Tue, 09 Jun 2026 04:00:00 -0400

In this deeply moving episode of Dementia Discussions, I sit down with Mary, a beloved member of my Dementia with Lewy Body support group through the UCLA Mary S. Easton Center. Mary shares the remarkable story of her husband, Dan, and their 15-year journey through dementia—a path marked by uncertainty, resilience, heartbreak, and ultimately, peace.

From the earliest signs that something was changing to navigating multiple diagnoses, difficult behaviors, hallucinations, caregiving challenges, and end-of-life care, Mary offers an honest and powerful look at what it means to love and care for someone living with dementia. Her story is one of unwavering devotion, family support, and faith in the face of unimaginable challenges. If you are a caregiver, this conversation will touch your heart and remind you that you are not alone.

Episode Highlights

[0:00] - Mary reflects on Dan’s final days and the profound peace that surrounded his passing.

[0:46] - I welcome listeners to Season 4 and introduce Mary, a longtime member of my Lewy Body Dementia support group.

[2:18] - Mary shares how she and Dan built a beautiful blended family through marriage, adoption, and foster care.

[5:39] - The first signs of cognitive and behavioral changes begin appearing years before any official diagnosis.

[10:38] - Mary discusses anosognosia and the challenges of caring for someone who does not believe anything is wrong.

[15:13] - A devastating fall leads to further medical evaluation and a diagnosis of Lewy Body Dementia.

[18:15] - Hallucinations, delusions, and the heartbreaking reality of Dan no longer recognizing home.

[21:00] - Mary explains how she managed safety concerns, monitoring, and episodes of elopement.

[23:08] - A 911 call and hospital visit highlight the growing difficulties of keeping Dan safe at home.

[25:42] - Mary explores memory care options and shares why none felt right for Dan’s unique situation.

[27:20] - The family navigates alcohol use, medication concerns, and finding practical ways to maintain peace.

[33:56] - Despite interventions, Dan’s symptoms continue to progress and his personality changes become more pronounced.

[35:22] - New behaviors emerge as frontotemporal dementia symptoms begin appearing.

[37:36] - Hospice care enters the picture as Dan stops eating and drinking.

[38:46] - Mary describes the family's final week together and the gift of meaningful goodbyes.

[40:30] - Dan’s peaceful passing at home surrounded by love and family.

[43:12] - Mary reflects on the blessing of honoring Dan’s wishes and keeping him at home until the end.

[44:30] - Mary shares her powerful reflections on “The Long Goodbye” and the three losses experienced through dementia.

[46:30] - Faith, family, and community become the foundation that carried Mary through caregiving and grief.

[47:54] - Life after caregiving: finding peace, healing, and moving forward after loss.

[48:26] - Closing reflections on resilience, caregiving, and the strength it takes to walk this journey.

How Music Unlocks Memories in Dementia Patients

Tue, 12 May 2026 04:00:00 -0400

Caregiving for a parent with dementia can bring moments of profound love, grief, humor, and connection — and my conversation with Laura Kanofsky captures all of it. Laura shares the story of her mother’s journey from successful entrepreneur and fiercely independent businesswoman to living with dementia, while reflecting on the emotional realities of becoming both daughter and caregiver.

We also explore the extraordinary impact of music therapy in dementia care and hospice. Laura explains how music can unlock memories, create emotional connection, reduce anxiety, and offer comfort even in advanced stages of dementia. From difficult decisions about caregiving and placement to meaningful moments created through music, this conversation offers insight, compassion, and support for caregivers navigating the dementia journey.

Episode Highlights

[0:00] - Laura shares the emotional challenge of explaining her father’s death to her mother after dementia changed her memory and understanding.

[1:00] - I introduce my longtime friend and colleague, Laura Kanofsky.

[3:13] - Laura reflects on her mother’s successful career and fiercely independent spirit before dementia.

[7:45] - We discuss early cognitive decline, vascular dementia, and the transition from home care to assisted living and board-and-care.

[10:21] - Laura shares how dementia changed parts of her mother’s personality and behavior.

[12:10] - Laura explains why a smaller board-and-care setting became the right fit for her mother.

[14:59] - We talk about grief, “therapeutic truth-telling,” and her mother’s confusion surrounding her late husband.

[18:20] - A conversation about friendship, community, and staying socially connected during the dementia journey.

[19:20] - Laura shares how she became a music therapist and why music is so powerful for people living with dementia.

[23:24] - We explore how music therapy supports memory, emotional connection, and engagement.

[25:18] - Laura discusses balancing her personal role as a daughter with her professional work in hospice and music therapy.

[27:35] - We talk about how music created meaningful moments of joy and connection between Laura and her mother.

[30:11] - Laura explains how music therapy can encourage storytelling, reminiscence, and emotional expression.

[31:56] - Laura shares experiences from her work in mental health, hospice, and autism care.

[36:07] - We discuss Laura’s work with Dynamic Hospice and Palliative Care and the role of music therapy at end of life.

[38:57] - Laura shares how she helps families create legacy playlists and personalized memorial music.

[42:38] - We reflect on empathy, compassion, and understanding the whole person in caregiving.

[45:08] - Laura and I close by reflecting on the supportive community serving older adults and caregivers in Los Angeles.

A 50-Year Marriage Rewritten by Dementia

Tue, 14 Apr 2026 04:00:00 -0400

In this episode, I sit down with Dr. Donald Wiss, a retired orthopedic trauma surgeon and devoted husband, whose caregiving journey is as profound as it is heartbreaking. I first met Dr. Wiss at a small board and care here in Los Angeles, and I’ve had the privilege of seeing firsthand the love and dedication he brings to caring for his wife, Deborah, who was diagnosed with mixed vascular Alzheimer’s dementia. In our conversation, he takes us back through their incredible 50-year love story and shares how subtle memory changes slowly revealed something much more serious.

We talk about what happens when life doesn’t go according to plan—when retirement dreams shift into full-time caregiving, and when love means showing up in entirely new ways. Dr. Wiss opens up about the realities of dementia, from navigating denial and diagnosis to making difficult care decisions and finding moments of connection in the midst of loss. This episode is filled with honesty, resilience, and powerful insights for anyone walking the caregiving path.

Episode Highlights

[00:00] - Dr. Wiss shares his daily ritual of expressing love and gratitude to Deborah

[01:31] - I introduce Dr. Wiss and how we first met through caregiver support

[02:23] - The beautiful backstory of Dr. Wiss and Deborah’s 50-year love story

[05:11] - Early warning signs of memory loss and the gradual realization something was wrong

[07:10] - A pivotal trip reveals the severity of Deborah’s cognitive decline

[10:29] - Understanding anosognosia and the challenges of lack of self-awareness

[12:42] - Dr. Wiss makes the life-changing decision to retire and become a full-time caregiver

[16:59] - Life during COVID and the emotional intensity of caregiving at home

[21:49] - Navigating daily routines, music, and finding ways to connect

[22:59] - The transition to adult day care and initial resistance

[25:29] - Making the difficult decision to move Deborah into memory care

[28:04] - Finding the right fit: from large facilities to small residential care

[31:42] - Letting go of the “fixer” mindset and accepting dementia’s reality

[33:53] - The emotional toll of watching a loved one change before your eyes

[37:05] - The power of resilience, acceptance, and redefining purpose

[38:49] - Why saying “I love you” never stops mattering

[41:59] - How relationships and support systems evolve over time

[44:41] - Practical communication tips: how to speak with someone with dementia

[45:15] - The heartbreak of goodbye—and how that changes over time

[46:41] - Medication decisions and navigating treatment thoughtfully

[49:06] - Reflections on the future of dementia care and hope for breakthroughs

Links and Resources

Dr. Donald Wiss’ Book:
One Life, No Rehearsal: A Surgeon’s Memoir of Healing, Heartbreak, and Legacy https://www.amazon.com/ONE-LIFE-NO-REHEARSAL-Heartbreak/dp/B0FG1HL971

Letting Go of the Plan: Accepting Memory Care for a Parent

Tue, 10 Mar 2026 04:00:00 -0400

In this episode of Dementia Discussions, I’m joined by Jefferson, a member of one of my caregiver support groups, who shares the powerful story of caring for his mother as she navigates dementia. Once a vibrant entrepreneur and theater producer, his mom was always the person bringing people together—making the changes in her memory and behavior especially difficult to witness.

Jefferson opens up about recognizing the early signs of cognitive decline, navigating a diagnosis, and facing one of the hardest realities caregivers encounter: realizing that bringing a loved one home isn’t always the safest option. We also talk about advocacy, memory care, and how finding the right environment ultimately brought peace of mind for both Jefferson and his mom. If you’ve ever questioned whether you’re making the right decisions as a caregiver, this conversation will resonate deeply.

Episode Highlights

[0:00] – Jefferson reflects on the moment he realized bringing his mom back home wasn’t a safe plan.

[1:07] – I welcome listeners back to Dementia Discussions and invite caregivers to share their stories.

[2:00] – Jefferson joins the show and shares the vibrant story of his mother’s life in theater, entrepreneurship, and community building.

[4:48] – The first subtle signs of memory changes begin to appear—and a powerful moment during one of Jefferson’s presentations raises concern.

[7:59] – After Jefferson’s father passes away, his mother’s cognitive decline accelerates while living alone.

[9:45] – Jefferson describes the growing caregiving responsibilities, including managing finances and noticing changes in behavior and mood.

[13:05] – Resistance to in-home help and the challenge many families face when trying to introduce outside care.

[14:14] – Seeking a formal diagnosis through his mother’s primary care physician and preparing for future care needs.

[18:10] – A frightening health crisis leads Jefferson to rush to Palm Desert and call emergency services.

[20:09] – Transitioning from hospital care to assisted living—and learning the limitations of what assisted living can provide.

[22:30] – Jefferson’s plan to temporarily move his mother back home in order to manage mounting care costs.

[25:10] – Within minutes of bringing her home, Jefferson realizes the situation is not safe and that professional care is necessary.

[27:22] – I share how many caregivers experience the same hope of bringing a loved one home—and why it often doesn’t work.

[28:22] – Jefferson goes into full advocate mode at the hospital, pushing for a new discharge plan and appropriate care.

[32:12] – The turning point: hospice and palliative support open the door to a new memory care placement.

[34:45] – Jefferson describes the smaller memory care community where his mom now lives safely and happily.

[36:56] – Weekly updates from staff and the relief of knowing his mother is well cared for.

[38:07] – Understanding hospice and palliative services as supportive care—not only end-of-life care.

[41:10] – Visiting his mom regularly and navigating the emotional reality that she’s still there—but not the same.

[42:19] – The importance of caregiver support groups, friends, and family during the caregiving journey.

Caregiving can feel incredibly isolating, but conversations like this remind us that none of us are alone in the journey.

Reimagining Dementia Care: How the Hummingbird Project Sparks Joy, Connection, and Purpose

Wed, 11 Feb 2026 04:00:00 -0500

In this episode of Dementia Discussions, I am joined by Elizabeth Fluck and Meredith Eden of The Hummingbird Project, and what a meaningful conversation this turned out to be. If you’ve ever wondered how to truly enhance quality of life for someone living with dementia—not just manage symptoms, but spark joy—this episode is for you.

We talk about the power of social connection, therapeutic engagement, and why isolation can be so detrimental, especially for seniors and those who cannot easily advocate for themselves. Elizabeth and Meredith share how their strength-based, individualized approach is transforming dementia care through creative arts, purposeful activities, and even virtual programming. You’ll walk away with practical insight and, I hope, a renewed sense of possibility.

Episode Timeline

[0:48] – I kick off Season 4 and reflect on the importance of community and connection for caregivers.

[2:12] – Elizabeth shares how volunteering in a nursing home as a teenager led her to a lifelong passion for working with seniors.

[3:55] – Meredith talks about her background in drama therapy and how she found her true calling on a memory care floor.

[7:49] – We discuss why socialization is more than brain games—and why isolation is especially harmful for seniors with dementia.

[10:30] – The origin of The Hummingbird Project and the need for a true “quality of life” model in elder care.

[12:09] – What one-on-one therapeutic engagement actually looks like—and how specialists tailor activities to each individual.

[15:41] – Beautiful examples of rediscovering talents, including harmonizing with a violinist and reconnecting with professional identity.

[16:52] – “They’re going to forget anyway”—we address this common concern and explain why the moment still matters.

[17:57] – How engagement impacts stress levels, body chemistry, and overall wellness—even if the memory fades.

[20:09] – The flexibility of meeting clients wherever they are: at home, in facilities, or even in the hospital.

[22:35] – The virtual engagement program and how even clients who seem “non-engageable” can thrive online.

[29:19] – How the program supports caregivers by filling in afternoon downtime and reducing agitation.

[33:46] – Navigating resistance to care and how Hummingbird can be the first supportive presence in the door.

[35:26] – How services are structured, billed, and customized to meet each client’s needs.

[42:46] – The partnership with Family Caregiver Alliance and the “Let’s Get Away Together” virtual group experience.

[45:17] – Travel themes, shared stories, and creating meaningful community for caregivers and their loved ones.

[50:47] – The flexibility of scheduling and why there is no rigid commitment structure.

Navigating Dementia From Afar: Lisa Jo on Caregiving, Grief & Unexpected Blessings

Wed, 14 Jan 2026 04:00:00 -0500

In this episode of Dementia Discussions, I sit down with Lisa Jo, a longtime member of the support group I co-lead at the Mary S. Easton Center for Alzheimer’s Disease Research at UCLA. Lisa has been navigating the complex, emotional, and often overwhelming role of long-distance caregiving, and today she opens up about her mother’s dementia journey, her father’s decline, and what it was like to step into full-time caregiving during one of the most difficult times in her family’s life.

Lisa shares so honestly about the unexpected challenges she faced—sun-downing behaviors, shifting family dynamics, medication management, caregiver burnout, and the heartbreaking realities that arise when a parent no longer recognizes you. She also gives a heartfelt look at the meaningful moments she was able to create with both of her parents during their final years together. Her story is raw, authentic, and full of wisdom for any caregiver walking a similar path.

Episode Highlights:

[00:00] – Lisa describes early signs of her mom’s sun-downing and the moment her mother no longer recognized her.
[00:37] – I welcome listeners to Season 3 and share my gratitude for the community.
[01:31] – Introducing Lisa Jo and her connection to our UCLA support group.
[02:02] – Lisa paints a picture of who her mom was before dementia—independent, outgoing, and full of life.
[03:23] – The beginning of her mother’s cognitive decline and early safety concerns.
[04:40] – The emotional toll on her dad as her mom’s personality and memory shifted.
[05:50] – Life in independent living and when Lisa decided to seek out caregiver support.
[07:02] – Lisa realizes her dad is overwhelmed and begins exploring outside help.
[08:40] – Moving in with her parents for 15 months during her dad’s illness and recognizing the true extent of her mom’s impairment.
[10:38] – Her dad relinquishes caregiving responsibilities as his own health declines.
[12:01] – Balancing full-time remote work while caregiving for both parents.
[14:40] – Challenges in communication, accusations, and emotional upheaval caused by dementia.
[15:50] – A bittersweet moment when her mom mistakes her for “someone familiar.”
[16:50] – Rebuilding an adult relationship with both parents and finding unexpected closeness.
[18:52] – How fortunate timing, flexibility, and family planning made care possible.
[20:00] – Her father’s passing and preparing her mother for the transition to memory care.
[21:37] – Moving her mom into memory care and the thoughtful steps she took to ease the adjustment.
[23:46] – Personalizing the new space with colors, familiar furniture, and meaningful artwork.
[26:07] – Navigating her mom’s grief and repeated questions after her dad’s death.
[28:21] – Using fiblets and reassurance to support her mom emotionally.
[30:58] – Long-distance caregiving today—video calls, late-night reassurance, and new complications with care-facility rules.
[33:18] – Adjusting to limited access and advocating for communication options.
[34:31] – Traveling back East periodically and managing a new diagnosis: multiple myeloma.
[36:06] – How the support group has helped Lisa through education, connection, and emotional release.
[37:30] – Navigating guilt as a long-distance caregiver and honoring her parents’ wishes.
[39:45] – The biggest silver lining—deepening her relationship with both of her parents.
[42:16] – Closing the conversation with gratitude and reflection.

The Soul Doesn’t Get Dementia: Connecting Beyond Words in Caregiving

Wed, 17 Dec 2025 04:00:00 -0500

In this episode, I sit down with dementia counselor, educator, and author Tami Anastasia for a deeply meaningful conversation about what really drives behavior in dementia care. We go beyond surface-level symptoms and talk about the powerful role personal history, emotional patterns, and past trauma play once the brain can no longer filter or suppress them. This is one of those conversations that can completely change how you see dementia caregiving.

Tami joins me to discuss her newest book, Dementia Caregiving & Personal History: How to Help Cope, Connect, and Heal, and why this journey—painful as it is—can also be an opportunity for healing for both caregivers and those living with dementia. We explore how connection replaces correction, why the soul does not get dementia, and how caregivers can respond with empathy, reassurance, and boundaries instead of guilt

Episode Highlights:

[0:00] – When words fail, how caregivers can still connect by speaking to the soul
[1:26] – Introducing Tami Anastasia and her work in dementia counseling and education
[3:27] – Why dementia behaviors often connect to unresolved personal history
[6:45] – How past trauma resurfaces when coping mechanisms disappear
[9:01] – Caring for someone who didn’t take care of you—and setting boundaries
[12:11] – Using personalized language to reduce agitation and fear
[16:16] – Honoring identity and work history in dementia care
[19:02] – Caregiver guilt, grief, and the emotional weight of placement decisions
[24:23] – Fear-based family histories and nighttime paranoia
[29:16] – Personality traits intensifying as dementia progresses
[31:56] – Listening to emotional themes, not just words
[34:56] – The power of non-verbal connection when language breaks down
[38:01] – Giving caregivers permission to acknowledge their limits
[40:05] – How to find Tami’s books and upcoming audiobook release

Links & Resources:

Tami Anastasia's Book Dementia, Caregiving, and Personal History: How to Help, Cope, Connect, and Heal: https://a.co/d/4qoXZ2d

When Words Fade: Christine's Story of Love, Loss, and Adaptation

Wed, 05 Nov 2025 04:00:00 -0500

In this heartfelt episode of Dementia Discussions, I sit down with Christine, a member of my Alzheimer's Los Angeles caregiver support group and a wife navigating the difficult journey of her husband Steve's early-onset dementia. Christine and I talk about their 46-year marriage, how his brilliant legal career slowly unraveled, and the emotional toll that comes with losing the person you love in pieces.

Christine shares her personal reflections with honesty, humor, and wisdom. From the early warning signs she didn't recognize, to the agonizing process of telling their adult children and his law firm, to letting go of the life they once knew—Christine brings us into the deeply personal and complex world of caregiving. If you're a spouse, partner, or family caregiver, this episode is full of truths you’ll likely recognize and encouragement you didn’t know you needed.

Episode Highlights:

[0:40] - Meet Christine and hear how she and Steve met at debate camp as teenagers

[2:20] - A young love story and a 46-year marriage built on intellect and conversation

[5:13] - Early signs of cognitive decline during COVID and the initial diagnosis

[10:15] - The emotional toll of hiding the diagnosis from family and Steve's law firm

[13:55] - Steve's resignation and the loss of identity that came with it

[16:55] - Language loss, isolation, and grief within the marriage

[22:31] - Comparing dementia caregiving to a marathon and facing unpredictable hurdles

[25:14] - The driving dilemma and setting boundaries for safety

[29:47] - How caregiving affects patience, control, and old communication habits

[34:01] - Traveling with someone with dementia and adapting routines

[39:26] - Christine's coping tools: painting, music, exercise, and alone time

[42:02] - Recommended reads: Travelers to Unimaginable Lands and Loving Someone Who Has Dementia

[44:34] - Ambiguous loss and grieving someone who is still here

[45:52] - Financial challenges and the burden of full responsibility

[48:49] - Drawing lines for when to seek help or facility care

[52:15] - Silver linings: finding support in adult children and reclaiming time for herself

[56:18] - Learning to ask for help and connect with others in vulnerable moments

Dementia, Caregiving & Exit Strategies: A Conversation with Madeline Jaye

Wed, 17 Sep 2025 04:00:00 -0400

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

A Son’s Devotion — Steve Lavapies on Navigating Caregiving, Decline, and Connection

Thu, 11 Sep 2025 04:00:00 -0400

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. 💙

Caring Through Chaos: Lorena Llamas' Journey as a Daughter and Caregiver

Thu, 14 Aug 2025 04:00:00 -0400

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.

Navigating Dementia with Compassion and Clarity: A Candid Talk with Dr. Miriam Winthrop

Thu, 17 Jul 2025 04:00:00 -0400

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

Alzheimer’s Caregiving: A Journey of Love, Patience, and Resilience

Thu, 09 Jan 2025 04:00:00 -0500

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.

Navigating Love and Loss: A Caregiver's Tale of Resilience with Andrew Bloomenthal

Thu, 12 Dec 2024 04:00:00 -0500

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/

Until There’s a Cure, There’s Community: Wine, Women, and Dementia

Tue, 19 Nov 2024 05:00:00 -0500

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

Navigating Changes with Lewy Body Dementia

Tue, 10 Sep 2024 05:00:00 -0400

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.

Rebuilding Relationships Through Dementia

Tue, 13 Aug 2024 05:00:00 -0400

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.

Love and Resilience while Caregiving for Multiple System Atrophy and Dementia

Tue, 09 Jul 2024 05:00:00 -0400

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.

A Daughter's Journey Through Dementia Caregiving

Tue, 11 Jun 2024 05:00:00 -0400

In today's episode, we go on a personal journey of caregiving with my guest, Kim, a long-time listener of our podcast and a daughter navigating the complex world of dementia care for her mother. Kim's story is not just moving—it's filled with insights that only a dedicated caregiver can offer. Whether you're a caregiver yourself or just someone interested in understanding the reality of living with dementia, this episode promises to enrich your perspective.

Episode Highlights:

[00:25] - Kim shares how the podcast has been a lifeline in dealing with her mother's dementia.

[02:11] - Kim talks about her mother's initial symptoms and the onset of her dementia journey.

[05:27] - Discussion on managing dual caregiving roles as Kim's mother's condition progresses alongside her boyfriend's Parkinson's diagnosis.

[08:38] - Exploring the effects of sensory loss on dementia symptoms.

[14:59] - Kim recounts the emotional decision to move her mother into assisted living.

[19:11] - Adjustments and challenges with her mother's care in the assisted living facility.

[25:21] - Evaluating the necessity and timing of transitioning to memory care.

[30:35] - Managing complex family dynamics and the impact of caregiving on personal lives.

[39:56] - The personal toll of caregiving and maintaining a balance in personal life.

Supporting a Parent with Dementia in Your Twenties

Tue, 14 May 2024 05:00:00 -0400

In today's episode, I have the pleasure of welcoming Skylar, a young caregiver who has been navigating the complex world of dementia care for her mother. Two years ago, Skylar stepped into the role of primary caregiver, a journey filled with both adversity and profound personal growth. Join us as we explore Skylar's experiences, from managing daily care challenges to making tough decisions about assisted living. This conversation promises insights not only into the practical aspects of caregiving but also into the emotional resilience required in such a role.

Episode Timeline:

[00:32] - Introduction to the show and welcoming Skylar
[02:07] - Skylar's initial challenges with her mother’s dementia during the pandemic
[07:19] - The realization and acceptance of her mother’s condition and the informal diagnosis
[14:32] - Skylar's journey in securing legal documents and planning for long-term care
[19:59] - The decision to move her mother to an assisted living facility and the emotional toll it took
[24:02] - Adjustments and life in the assisted living facility, including the recent move to memory care
[31:19] - The daily realities and evolving needs of living with dementia
[40:06] - Skylar reflects on personal growth and the support systems that have helped her navigate her role as a caregiver

Cannabis for Dementia: An Introduction with Dr. Sherry Yafai

Tue, 09 Apr 2024 05:00:00 -0400

Dr. Sherry Yafai joins me to discuss cannabis as a treatment for many symptoms that arise with dementia. As an emergency room physician turned cannabis clinician, Dr. Yafai shares her expertise on using cannabis for issues like anxiety, sleep disturbances, and pain. We discuss appropriate dosing, cannabis formulations, and most importantly - seeing a specialist versus experimenting on your own.

Dr. Yafai stumbled into the world of medical cannabis while working in the ER, with patients mentioning using cannabis for issues like arthritis pain and chemotherapy side effects. She was skeptical at first but dove into the research to learn more. Now she consults with patients to create personalized cannabis treatment plans to replace or enhance traditional pharmaceutical options.

Episode Highlights:

[09:42] - Coming "out of the closet" to colleagues about being a cannabis doctor.

[15:39] - Why doctor recommendation makes cannabis legitimate medicine vs. recreational.

[22:22] - Using THC for improved sleep-in dementia patients.

[28:55] - Risk of addiction/dependence with medical cannabis.

[32:26] - Various formulations like chocolate, honey, tea.

[35:47] - Start low, go slow philosophy with dosing.

[43:31] - Reach out for professional guidance from a cannabis clinician.

Connect with Dr. Sherry Yafai:

· Website: https://sherryyafaimd.com/

· The Releaf Institute: https://thereleafinstitute.com/

· Cannabis Clinicians: https://www.cannabisclinicians.org/

Bringing Dental Care Home with Gabrielle Mahler, DDS

Tue, 12 Mar 2024 05:00:00 -0400

In this episode, I speak with Dr. Gabrielle "Dr. Gabby" Mahler, a mobile dentist who makes house calls to patients, the majority of whom have varying stages of dementia. Dr. Gabby explains how she can perform cleanings, fillings, crowns, extractions, and denture fittings in clients' homes and residential facilities. She also shares creative strategies for providing oral hygiene care to those who refuse it or cannot do it themselves.

About my Guest: Dr. Gabrielle “Dr. Gabby” Mahler

Dr. Gaby has been practicing mobile dentistry for 14 years. She started working with retirement homes early in her career which exposed her to the immense need for at-home dental care options for older adults and people with disabilities. She now owns a mobile practice serving clients throughout LA.

Episode Highlights:

[05:11] - Transitioning from traditional dentistry to mobile dentistry.

[10:49] - The surprisingly wide range of procedures possible in the home.

[16:41] - Attempting dentures on dementia patients.

[23:21] - Preserving patients' joy of eating.

[24:56] - How medical insurance applies to mobile dentistry.

[35:01] - Educating caregivers on proper oral hygiene routines.

[43:15] - Detecting dental issues in uncommunicative patients.

[48:39] - How to prepare food for safe eating.

[53:21] - Caring for removable dentures and partials.

[1:01:02] - The differences treating dementia patients.

Connect with Gabrielle Mahler, DDS:

Website - https://www.inhomedentalcare.com/

A Comprehensive Look at Dementia with Kevin Jameson, Founder of The Dementia Society of America

Tue, 13 Feb 2024 05:00:00 -0500

Joining me in this episode is Kevin Jameson, founder and CEO of the Dementia Society of America. Kevin shares his personal journey of caring for his wife who was diagnosed with dementia, which led him to start this organization. He provides an in-depth look at the various types of dementia, the importance of early diagnosis, and lifestyle changes we can make to reduce our risk.

About My Guest, Kevin Jameson

Kevin started the Dementia Society of America after his wife was diagnosed with dementia in her late 50s. He became her primary caregiver and realized there were few resources available, prompting him to start this nonprofit organization. As a leading voice in the dementia field, Kevin is dedicated to providing education, improving quality of life, and funding research.

Episode Highlights:

[00:55] - Introducing my guest, Kevin Jameson, Founder of the Dementia Society of America.

[04:14] - Kevin shares his emotional story of his wife Ginny’s journey to a dementia diagnosis.

[10:50] - After the diagnosis, Kevin and his wife started traveling the world, seizing the day.

[12:24] - The emotional transition from home care to a care facility and hospice.

[15:20] - The Dementia Society of America was founded in 2003.

[16:28] - We discuss the myths about most dementia cases.

[20:18] - Simple lifestyle changes we can make to reduce dementia risk factors.

[25:04] - Minor changes in cognitive impairment are hard to spot, there is no lightning moment.

[32:56] - How clinical trials have advanced.

[33:48] - Overview of the Dementia Society's programs.

Links & Resources:

Dementia Society of America: https://www.dementiasociety.org/

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.

Believing in Yourself as a Caregiver with Tami Anastasia

Tue, 09 Jan 2024 05:00:00 -0500

In this episode, we invite back special guest, Tami Anastasia. I had the pleasure of meeting Tami at an Aging Life Care Association Conference, where Tami's expertise in dementia care stood out. Tami is not just a dementia consultant; she's also an educator and the author of "Essential Strategies for the Dementia Caregiver: Learning to Pace Yourself." Tami's primary focus is on supporting primary caregivers or care partners, those who shoulder the responsibility of caring for a loved one with dementia. Through her private practice, she offers a wide range of support services. This includes counseling and emotional assistance, but she doesn't stop there. Tami provides invaluable guidance on domestic care strategies tailored to the unique challenges of caring for someone living with dementia. Tami's impact extends beyond the realm of family caregiving. She conducts professional in-service trainings, equipping other healthcare professionals with the knowledge and skills they need to care for individuals living with dementia effectively. Tami's commitment to the dementia caregiving community is further evidenced by her involvement in caregiver support groups throughout the Northern California Bay Area, with a primary focus on the San Jose region. She plays an active role in these groups, offering guidance and support to those facing the challenges of dementia care.

Timeline Summary:
[05:16] - Coping with dementia caregiver stress
[10:40] - Dementia care and communication strategies
[15:58] - Dementia caregiving challenges and fears
[26:12] - Dementia and its impact on thinking and behavior
[30:12] - Supporting caregivers of people with dementia
[40:58] - Dementia care strategies and emotional support

If you enjoyed hearing Tami share her insights and advice about being a dementia caregiver, be sure to follow Dementia Discussions to catch future episodes. Consider giving the show a 5-star rating and leaving a review to help more families impacted by dementia discover the podcast. Until next time!

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.

Creating a Meaningful Holiday Season with Tami Anastasia

Tue, 12 Dec 2023 05:00:00 -0500

The holidays can be an especially difficult time for dementia caregivers. In this compassionate episode, expert Tammy Anastasia shares her top strategies to reduce caregiver stress, honor feelings of grief, and create new meaningful traditions.

I had the pleasure of meeting Tami at an Aging Life Care Association Conference, where Tami's expertise in dementia care stood out. Tami is not just a dementia consultant; she's also an educator and the author of "Essential Strategies for the Dementia Caregiver: Learning to Pace Yourself." Tami's primary focus is on supporting primary caregivers or care partners, those who shoulder the responsibility of caring for a loved one with dementia. Through her private practice, she offers a wide range of support services.

Episode Highlights:

[00:37] - The mixed feelings caregivers face during the holidays. Let go of comparing to past holidays.

[02:48] - What's one tradition you could modify to make things easier?

[08:26] - Don't judge your own limitations. Give yourself permission to do less and say no.

[13:19] - Name tags can ease social awkwardness when your loved one can't remember people.

[21:35] - A caregiver calendar of festive activities for every day of December.

[23:40] - Schedule holiday activities during your loved one's best time of day.

[26:28] - Reach out to caregivers so they don't feel lonely and isolated.

[30:10] - Take a drive to see festive light displays.

[31:58] - Allow yourself to feel sadness and loss. Find ways to comfort difficult emotions.

[35:48] - Take 10 festive minutes every day just for you as a holiday gift to yourself.

[38:05] - You are a gift to the person you care for.

Connect with Tami Anastasia:

Website: https://tamianastasia.com/

If you enjoyed hearing Tami share her insights and advice about being a dementia caregiver, be sure to follow Dementia Discussions to catch future episodes. Consider giving the show a 5-star rating and leaving a review to help more families impacted by dementia discover the podcast. Until next time!

Placing My Wife With Alzheimer's in Memory Care with Jay Swerdlow

Tue, 14 Nov 2023 05:00:00 -0500

In this heartfelt episode, I welcome back Jay Swerdlow, a longtime support group member. Jay shares the difficult journey of placing his wife Andy, who has Alzheimer's disease, into memory care. He discusses the challenges of caring for her at home as her disease progressed and delusions worsened. Though it broke his heart, Jay knew he had to make the difficult decision to move Andy to a care facility for both of their wellbeing. He talks about visiting her regularly, dealing with her not always recognizing him, and finding acceptance with where they are in this ongoing journey of a dreadful disease.

Jay Swerdlow is a member of the UCLA Mary S. Easton Alzheimer's Disease Research Center support group, which Barbara co-leads. Jay has been married to his wife Andy for 58 years before she was diagnosed with Alzheimer's disease in 2019. Since 2021, Andy has been living at a memory care facility.

Timeline Summary:

[01:36] - Andy was a schoolteacher diagnosed with Alzheimer's in 2019.

[03:47] - Andy's constant asking to go see her deceased parents was a daily struggle.

[05:30] - Jay's initial mistakes responding to Andy's questions before joining a support group.

[09:20] - Challenges during the difficult transition of moving Andy into memory care.

[14:04] - The ongoing difficulty of bringing Andy back to the care facility after taking her on outings.

[16:44] - Andy not understanding celebrating her 80th birthday.

[19:12] - Jay visits Andy three times a week at her care facility.

[23:02] - Andy still recognizes their sons when they visit.

If you enjoyed hearing Jay share his family’s dementia journey, be sure to follow Dementia Discussions to catch future episodes. Consider giving the show a 5-star rating and leaving a review to help more families impacted by dementia discover the podcast. Until next time!

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.

Supporting Your Loved One Through the Journey of Lewy Body Dementia

Tue, 10 Oct 2023 05:00:00 -0400

Today I welcome Debbie, a dedicated wife caring for her husband who is living with Lewy body dementia (LBD). Debbie shares the daily ups and downs of managing her husband's diagnosis, coping strategies that help her stay resilient, and advice for other caregivers walking a similar path.

Debbie’s husband was diagnosed with LBD about 5 years ago but exhibited some mild symptoms 10 years prior. He was once an outgoing, successful man who is now grappling with memory loss and confusion. Debbie describes her husband’s strong denial about his diagnosis and his insistence that he’s fine, despite clear changes.

Throughout their candid conversation, Debbie reflects on the grief of losing her life partner, the new burden of solo decision-making, and her evolution as a caregiver. She emphasizes the importance of maintaining joy, identity, and self-care while caregiving. Debbie found outlets like yoga, art class, and coffee dates with friends help tremendously.

Timeline Summary:

[02:10] Debbie introduces her husband and his LBD diagnosis.

[03:50] Denial about his dementia and telling the family.

[05:20] Keeping the humor alive even in the midst of grief.

[06:52] The daily “dance” of taking medications.

[09:35] Debbie problem-solves home issues alone now without his input.

[13:14] Feeling overwhelmed about storm damage on their property.

[14:38] Changing roles to make household decisions.

[16:04] Can handle one task well, but not multiple steps.

[19:30] Morning meditation to set a daily intention and stay patient in communication.

[22:37] How Debbie knows her husband wants help or attention.

[25:10] Creating art, yoga, and coffee dates for self-care.

[32:21] Debbie’s advice to caregivers: Don’t lose yourself.

Links & Resources:

· Lewy Body Dementia Association: https://www.lbda.org/

· Caregiver support: https://dailycaring.com/

Debbie's story exemplifies the deep bond between spouses facing dementia together. Her resilience, empathy, and self-care practices demonstrate how caregivers can withstand the enormous challenges of this role. Please rate, review, and share this episode if it resonated with you or could help other families touched by dementia. Until next time!

Navigating Caregiver Stress and Guilt with Clinical Psychologist Dr. Genifer Goldsmith

Tue, 12 Sep 2023 05:00:00 -0400

I had the pleasure of sitting down with clinical psychologist Dr. Genifer Goldsmith to discuss the immense stress and guilt that comes with being a caregiver. Our collaboration in co-facilitating a caregiver support group at UCLA for Alzheimer's Disease Research and care has been nothing short of enlightening. As someone who facilitates a caregiver support group, we see these struggles firsthand.

Dr. Goldsmith provides research-backed insights on how to cope. One key element emerges as a cornerstone to enhancing a patient's journey: caregiver support. Join us as we unpack the pivotal role caregivers play and discover the profound difference they can make in the progression of dementia.

Caregiving is an immense challenge, but small acts of self-care have a huge impact. Never feel guilty for supporting yourself first - it helps your loved one most.

Timeline Summary:

[02:20] - Stress as a caregiver and what it truly means.

[03:00] - Craving structure within the chaos of unexpected changes in disease progression.

[04:41] - Taking on unfamiliar roles alone like taxes and home repairs adds major stress.

[06:35] - The heartbreak of taking away a loved one's independence and the balancing act between quality of life and safety.

[09:15] - Conflict response: meet them in their reality and avoid conflict.

[11:40] - Supporting caregivers directly impacts disease progression.

[13:33] - Being a caregiver is like running a marathon.

[14:22] - Feeling guilty about prioritizing yourself and how to change it.

[16:20] - Largest percentage ever of older adults and the impact on the family unit.

[17:03] - Comparing societal support for caregivers to new moms and how social media trends can help.

[18:01] - “Being selfish is the most selfless thing a caregiver can do.”

[18:35] - Well-supported caregivers slow disease progression.

[20:15] - Setting up preventative measures to reduce caregiver burden.

[21:31] - Being conscious of your tone.

[23:00] - Start small with 10 minutes of self-care when overwhelmed.

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.

Finding Balance: Self-Care and Compassion in Dementia Caregiving with Beth Lanie

Tue, 08 Aug 2023 05:00:00 -0400

In today’s episode, I speak with another member of my support group, Beth Lanie, a devoted caregiver to her husband Howard, who has been diagnosed with dementia with Lewy bodies. Beth shares her heartfelt experience, providing insights into the challenges, triumphs, and evolving dynamics of caregiving for a loved one with a progressive neurological condition.

Beth discusses Howard's background as an aerospace engineer and their 42-year marriage. She opens up about the initial signs of Howard's memory problems, including difficulties with directions and completing projects. Beth recounts the haunting hallucinations that plagued Howard's nights, and the lengths they went to in order to address them.

The podcast delves into the impact of Howard's diagnosis on their daily lives, their conversations with neighbors, and the gradual progression of his symptoms. Beth also shares valuable tips for self-care amidst the demands of caregiving, emphasizing the importance of taking small breaks and finding moments of respite.

Beth's story shines a light on the resilience and love that underpins the caregiver's journey. Tune in to gain a better understanding of the complexities of dementia caregiving and to draw inspiration from Beth's unwavering commitment to her husband's well-being.

Finding Joy in the Present: Embracing Dementia's Silver Lining with Valerie Rennert

Tue, 11 Jul 2023 05:00:00 -0400

My special guest this week is Valerie Rennert, who opens up about her father's journey with dementia. She shares how their family first became aware of his condition and the ways they tried to support him. Despite the challenges, Valerie emphasizes the silver lining: her father's happiness in the present moment, free from stress.

Valerie fondly remembers her father, who was larger than life and incredibly intelligent. However, as the years went by, they began to notice changes in his memory and cognitive abilities. While his short-term memory is affected, he surprises everyone with his ability to engage in deep conversations, only to repeat them shortly after. We also learn about his passion for playing bridge and how, even in his current state, he continues to enjoy the game.

She reflects on the difficult decisions they've had to make and the regrets of not transitioning him to an independent living facility sooner. Despite the challenges, Valerie expresses gratitude for the amazing caregivers who provide round-the-clock support for her father.

Bringing Care Home: The Dos and Don'ts of Hiring a Caregiver for Your Loved One with Dementia

Tue, 13 Jun 2023 05:00:00 -0400

Today I'm joined by Noma Kaz, a seasoned caregiving professional specializing in dementia care. Throughout our conversation, Noma shares her extensive knowledge and experience in the field, helping us explore the intricate dynamics of caregiving for dementia patients, the qualities to seek in an ideal caregiver, and the necessary steps to ensure their effective integration into your loved one's life. I'm confident that this episode will provide you with both comfort and practical advice for navigating the often challenging journey of dementia care.

[0:04] How care is activities of daily living.
[1:57] How the COVID-19 pandemic has significantly affected the caregiving industry
[8:13] The challenges of becoming a caregiver.
[15:16] Being "down on a day to day basis"?
[22:21] What is shadowing and how does it work?
[29:35] Bringing in a "driver".
[33:02] The most concerning part of hiring independently.
[39:05] Long term care insurance.
[45:14] What's the most common cause of dementia in patients?
[52:36] Hiring the right person for your loved one.

Follow Noma on LinkedIn: https://www.linkedin.com/in/noma-kaz/
Visit Noma's website: https://lifelinecompanionservices.com/

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.

The Power of Music, Yoga, and Seizing the Day in Caregiving

Tue, 09 May 2023 05:00:00 -0400

Franne Golde opens up about her journey with her husband, Paul, who was diagnosed with a disease they knew very little about. Our conversation covers the challenges of finding care for Paul, the timing and benefits of hospice care, and several tools and book recommendations for all caregivers. It's a show that addresses difficult topics, but it's also an important conversation to have.

It all began with an early misdiagnosis from a doctor, who called her "a neurotic Jewish housewife." Franne shares how she wrote an article about their journey and how Maria Shriver contacted her, which led to an overwhelming amount of love and support. Franne's use of her platform to inspire others to share their story is truly inspiring.

She discusses the important tools that helped Paul, including music, yoga, and her commitment to give him his best life and seize the day. Paul's motto, "keep on keepin’ on," is a testament to his resilience even when he couldn't speak anymore. Franne also shares about the slivers of light during the darkest of times and the amazing support her family of caregivers gave him.

https://www.enhancedmoments.com/

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.

Balancing Caregiving and Self-Care: Tips and Tricks for Caregivers

Tue, 11 Apr 2023 05:00:00 -0400

Finding strength in a community of other caregivers, in this powerful episode, I’ll speak to Amy Kent, a member of my support group who is caring for both of her parents with dementia. Amy shares her personal story of the day-to-day struggles of caregiving, from hiring caregivers to managing their declining health. She also talks about the emotional toll of caregiving and the financial strain it can cause. But despite the difficulties, Amy has found solace in our support group, and she's now helping others who are going through similar experiences. Her story is both heart-wrenching and inspiring, and I think it's a must-listen for anyone who is caring for someone with dementia or is interested in the topic.

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.

I Need You To Know That I’m There, with James Savage

Tue, 14 Mar 2023 05:00:00 -0400

It’s amazing how much music comes up in these conversations where we delve into the experiences of those caring for loved ones with dementia. In this episode, James Savage shares his personal journey caring for his wife as her ability to converse fades, he finds himself feeling increasingly isolated and alone, with music providing a vital lifeline in filling the silence.

James is a songwriter and has turned his lyrics towards themes of loss and memory, reflecting on his experiences caring for his wife. He is even in the process of writing a musical about a support group, with the hope of bringing greater awareness to the often thankless and unnoticed job of caregiving. Through participation in our support group, James has found solace and support, and is building his capacity for empathy.

Despite his sadness at her diminishing ability to communicate and connect with loved ones, James remains hopeful for her future. He shares a poignant lyric from his musical that conveys the emotions of loss through his experience, reminding us of the importance of empathy and understanding in the face of such challenges.

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.

It’s a Family Affair: How the dynamics of aging impact the entire family

Tue, 21 Jun 2022 04:00:00 -0400

Today Barbara is joined by her friend and colleague Bunni Dybnis. A licensed marriage and family therapist, Bunni worked as an Aging Life Care Manager for years and is now a mediator, helping families of the aging and terminally ill work through bereavement, adjustments and transitions. She tells Barbara about her journey to the field of geriatrics, sparked by a course she took through UCLA’s medical school on death and suicide. Bunni realized then how death impacts the person who dies as well as their entire family unit, and teaching families to deal with loss became her mission. Tune in to hear Bunni describe her training and work as an elder/family mediator, helping adult children in conflict with each other, with a second spouse, or with a resistant parent to find resolution and caregiving solutions.

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.

Caregiving by default and why it's so easy to lose yourself

Tue, 14 Jun 2022 04:00:00 -0400

Today Barbara’s guest is Sandra Hunnicutt. Sandra shares her story of taking care of her husband, Don, a brilliant UCLA professor who was a “man on fire” until 2018, when he began to show signs of memory impairment and was diagnosed with mild-to-moderate cognitive impairment. Sandra was Don’s sole caregiver for four years, until his condition deteriorated to the point that she needed to put him in a facility. She and Barbara talk about her experience along the way; how she “slipped into caregiving” not fully realizing it was happening. Sandra also shares valuable insights and advice, from the importance of long-term care insurance (especially if you have a family history) to why she believes every caregiver should have a therapist.

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.

Lessons in Caregiving Education

Tue, 07 Jun 2022 04:00:00 -0400

Today Barbara is pleased to welcome David Hart, a professor and clinical psychologist who specializes in dementia and caregiving. David is a faculty member in the Department of Counseling at California State University, Fullerton, and is the director of clinical services at Always Best Care Senior Services in Torrance, CA. David shares his personal story about caring for his grandmother, who was diagnosed with dementia when he was 15. He and his mother did their best, he says, but they didn’t have the right information, support, or resources.“Our hearts were always in the right place, we just didn’t know.” David entered the field to help others in this position, devoting his career to educating caregivers. In today’s special episode, Barbara and David share valuable insights and lessons they’ve learned from their formidable careers working in memory care and with caregivers. To learn more about David and his “caregiving bootcamp,” go to alwaysbestcaresouthbay.com or contact him at dhart@abc-seniors.com.

If you would like to share your caregiving story, Barbara would love to hear from you! Please call her at 310-362-8232 or email her through DementiaDiscussions.net.

"Learning from other Caregivers"

Tue, 31 May 2022 04:00:00 -0400

Nancy Tahara joins Barbara to talk about caring for her friend of 40 years. Now 81, he suffers from Lewy body dementia, Parkinson's disease, and REM sleep behavior disorder. He asked her to come take care of him a year-and-a-half ago, and she’s been his full-time caregiver ever since. Sadly, her friend’s condition is deteriorating quickly, both physically and cognitively. They just finished home health (physical therapy) but it didn’t help, so now they’ll start hospice. Nancy talks about how much she’s learned in her caregiving support groups – valuable advice, insight and support. She and Barbara also discuss how important it is for caregivers to get a break, and some of the options for finding help and getting through the tough times.

Do you have a caregiving story to share? Barbara would love to hear from you! Please call her at 310-362-8232 or email her through DementiaDiscussions.net.

A Crash-Course in Caregiving: “It’s been a rollercoaster of figuring things out”

Tue, 24 May 2022 04:00:00 -0400

Today Barbara is joined by Evelyn Garcia, who cares for her mother who has younger-onset dementia. Evelyn was living in Virginia when she got a call from her mother’s doctor, saying she couldn’t live alone any longer. When Evelyn flew out to Los Angeles, she realized how bad things were: her mother was paranoid and forgetful, cried all the time, and wasn’t paying bills or taking care of herself. In June of 2020, Evelyn moved to Los Angeles to take care of her. Evelyn and Barbara talk about how hard it is to become a caregiver without any background or training. They discuss different methods and tricks to keep her mother moving forward with her day – “otherwise she just cries,” Evelyn says. Evelyn shares how difficult it’s been for her, doing all the caregiving by herself with no one in her family offering to help. She also shares how painful it is to watch her mother’s memory decline. Each time she notices a new problem – most recently it was her mother not recognizing her – she cries too, just not in front of her mother so she won’t know there’s something wrong.

If you would like to share your caregiving story, Barbara would love to hear from you! Please call her at 310-362-8232 or email her through DementiaDiscussions.net.

Laughter is the Best Medicine

Tue, 17 May 2022 04:00:00 -0400

Dani Klein Modisett is the founder and CEO of Laughter On Call which pairs comedians with Alzheimer’s patients. She’ll reveal the story behind the formation of this brilliant idea and explain why laughter really is the best medicine.

Writer-comedian, Dani Modisett, has been performing comedy for over 20 years. She taught the art of stand-up comedy at UCLA for over a decade and has produced numerous live comedy shows all over the U.S.

Find more about Dani and Laughter On Call

The Washington Post

NY Times & LOC

Number One in Workplace Wellness

Laughter and Mental Wellness Video

Want to share your story? Barbara would love to have you as her guest on Dementia Discussions. Please get in touch! (310-362-8232 / Barbara@seniorcarenavigatorla.com)

Learning Caregiving from a Distance

Tue, 10 May 2022 06:00:00 -0400

Katie is a new caregiver, taking care of her mother who is in the early stages of “advanced cognitive decline.“ She’s also caregiving from a distance. She’ll discuss trying to navigate through this new experience and how she’s found support for both her mom and herself.

Want to share your story? Barbara would love to have you as her guest on Dementia Discussions. Please get in touch! (310-362-8232 / Barbara@seniorcarenavigatorla.com)

Daily Money Managers as part of the caregiving team

Tue, 03 May 2022 04:00:00 -0400

Today Barbara is joined by her friend and colleague Natalie Stanger. Twenty years ago, Natalie started a company to “help seniors do the things they could no longer do or didn’t want to do,” and it’s kept her busy ever since. Natalie talks about how she got into the world of geriatrics and found her niche as a Daily Money Manager (a “DMM”). They discuss all the things she does for her clients, from bill paying and mail management to simply keeping them company: “There’s no formula, it’s whatever people need.” One of her jobs is to help seniors with technology, particularly because seniors are so susceptible to fraud: “Technology is running so fast, people are overwhelmed and afraid of identity theft and fraud.” Natalie says she wants her clients to remain as independent as possible because that adds to their quality of life, but they need to be watched. “They don’t always make good decisions, and there are lots of people who want to take advantage of that.”

If listeners are interested in learning more about Daily Money Managers, Natalie suggests the website for the American Association of Daily Money Managers. On the site, you can enter a zip code to find a DMM near you.

Want to share your story? Barbara would love to have you as her guest on Dementia Discussions. Please get in touch! (310-362-8232 / Barbara@seniorcarenavigatorla.com)

Diagnosing Dementia with a Pre-existing Brain Condition

Tue, 26 Apr 2022 04:00:00 -0400

Today Barbara is joined by Heidi Artman, who is caring for her husband, Lee. Heidi first noticed Lee’s memory problems in 2015, but it wasn’t until recently that he received a diagnosis. Because Lee has struggled with bipolar disorder since his early 30s, what was happening in his brain was difficult to diagnose. Heidi and Barbara talk about the complexity of brain disease and the research into whether components of bipolar are linked to a propensity to dementia. Heidi talks about Lee’s condition: Lewy body dementia is the main component now, and it’s progressing quickly. Along with body issues, Lee is also experiencing delusional states and hallucinations. Keeping him safe has been a challenge – she says the trick is to keep him asleep at night because if he wakes up, he thinks his dream is real. At first she hid the car keys so he wouldn’t drive the car in a delusional state, but he managed to find them. Now she keeps them in a safe. They talk about how difficult these situations are for the caregiver; Lee has absolutely no memory of his hallucinations so Heidi has to remember these traumatic events alone.

Would you like to share your caregiver story on Dementia Discussions? Call or email Barbara directly, she’d love to hear from you! (310-362-8232 / Barbara@seniorcarenavigatorla.com)

The Sad Relief of Getting the Diagnosis

Tue, 19 Apr 2022 04:00:00 -0400

Today Barbara welcomes Denise to the podcast. An only child, Denise says she never saw herself as a caregiver, but when her mother was diagnosed with dementia and Alzheimer’s, everything changed. She and Barbara discuss the complex emotions and transitions involved once you receive the diagnosis – not only for the one who gets the diagnosis but all those who care for them. Denise tells Barbara that hearing the diagnosis was confirmation that her mother was no longer self-aware enough to know what she needed. From then on, it was up to Denise to make all the decisions.

Would you like to share your caregiver story on Dementia Discussions? Call or email Barbara directly, she’d love to hear from you! (310-362-8232 / Barbara@seniorcarenavigatorla.com)

A gertiatric caregiver’s mission to give back

Tue, 12 Apr 2022 04:00:00 -0400

Today Barbara welcomes her colleague and friend Doria to the podcast. They discuss Doria’s experience caring for her mother, Jeanette, from when she had a stroke during the Northridge earthquake (1994) until she died at 82. Doria talks about how difficult it was to find caregivers due to their lack of resources, and how her mother was often mistreated and harmed by women they’d hired. Acknowledging her mother’s pain is what motivated Doria – at the age of 50 – to go back to school to become a geriatric social worker. She finds the work rewarding but also heart-breaking due to the lack of support available to lower income populations. She and Barbara discuss the ethnic and cultural disparities and how money is consistently the biggest barrier to adequate resources and support.

Caregiving when both your parents have Alzheimer’s Disease

Tue, 05 Apr 2022 04:00:00 -0400

Today Ed Mount joins Barbara to talk about his ongoing journey as a caregiver. Ed’s father died from Alzheimer’s in 2012 and his mother Judy is now suffering from the disease. He and Barbara discuss the different phases of Alzheimer’s and the various caregivers Ed has encountered throughout the years. Through his experiences, Ed shares what he’s learned along the way and what he wishes he’d done differently.

My wife is taking care of her mom – and we have young kids!

Tue, 29 Mar 2022 04:00:00 -0400

When Adam Steinman’s mother-in-law was diagnosed with Alzheimer’s four years ago, his kids were two and six. Adam joins Barbara to share his experience caring for younger children and aging parents, a phenomenon known as the Sandwich Generation. Adam remembers his mother-in-law as incredibly vibrant and fiercely independent, a progressive thinker who would “always tell you what she thought.” For Adam and his wife, this made knowing something was awry that much more obvious. He and Barbara talk about the stress of “double caregiving,” feeling like you’re always choosing one over the other, and how he tries to normalize things for his children as much as he can.

Memory care facilities don't always want your feedback – no matter how much you’re paying

Tue, 22 Mar 2022 04:00:00 -0400

Today Barbara is joined by Gary Zembow and Marcy Lebovitz to discuss Gary’s mother, Esther. Now 94, Esther was born in Poland, and was the only member of her family to survive the Holocaust. Gary and Marcy describe Esther as bright, happy and cheerful, despite what she lived through as a child. They first remember noticing dementia symptoms after she had anesthesia for back surgery. It was never diagnosed, but they assume it was frontotemporal because she had trouble finding words.

They talk about their caregiving journey as Esther’s symptoms declined, beginning at an independent living facility, then hiring private caregivers for additional support until it was clear she needed to be in a dedicated memory care facility. Gary talks about the painful experience of finding a memory care facility and the inadequate care his mother received there. “We battled the management,” he says, “but they refused to listen.” Almost two years ago, they found an opening at a small “Board and Care” facility, where Esther has been there ever since.

This episode is dedicated to Esther Zembow, who passed away after the recording of this episode. We send our love and condolences to Gary, Marcy, and everyone who loved and cared for Esther.

Caregiving from afar: The importance of building a local team for your loved ones

Tue, 15 Mar 2022 04:00:00 -0400

Paul Spiegelman joins Barbara to talk about caregiving for his mother, Lila, who was diagnosed with Alzheimer’s in 2015. At first, Paul’s father did all the caregiving while Paul, who lives in Dallas, did what he could to support his father (a “caregiver’s caregiver”). As Lila’s condition declined, Paul says he could see the strain on his father. That’s when he knew his parents needed more help. He and Barbara discuss the adjustment that comes when you bring in professional caregivers, and Paul describes the sense of security he now has, knowing someone is always there for them.

Caring for a loved one who doesn’t know who you are

Tue, 08 Mar 2022 04:00:00 -0500

Steve Johnson joins Barbara to talk about caring for his wife of 22 years, Bonnie. In September of 2020, Bonnie was diagnosed with mild to moderate Alzheimer’s. He says the onset was radical – they’d taken a family trip in June but by August, Bonnie no longer recognized him. He tells Barbara about how much his life has changed in just two years, and his experience caregiving for someone who is too impaired to understand what’s happening to her. They discuss coping strategies and tactics for caregivers as well as ways to manage his own anger over all that he has lost.

Young Onset Alzheimer’s: The diagnosis neurologists don’t know how to deal with

Tue, 01 Mar 2022 04:00:00 -0500

Are you a caregiver with a story to share? Please call Barbara at 310-362-8232.
Today Barbara is joined by Kimberly Cruelle, whose husband was diagnosed with young onset Alzheimer’s six years ago at the age of 47. She tells Barbara about the early signs, starting with memory loss that quickly became severe. They discuss the challenges of young onset Alzheimer’s – when the patient’s age makes it difficult to get the right tests approved, and how often it’s misdiagnosed as anything from sleep apnea to personality disorder to, in Kimberly’s husband’s case, untreated childhood ADHD. For a caregiver, advocating for certain tests and dealing with the repercussions of misdiagnoses and treatments takes up valuable time and energy – two things they can’t afford to waste.

The dynamics of caregiving for different family members

Tue, 22 Feb 2022 04:00:00 -0500

Barbara kicks off today's episode with a question for you: Would you (or someone you know) like to help other caregivers by sharing your caregiving story on Dementia Discussions? If so, Barbara would love to hear from you! Call or text: 310-362-8232. Next, Barbara welcomes facility placement specialist Stacy Brooks. Stacy’s company, Heart Light, helps place seniors in assisted living facilities. Stacy also knows first-hand how much the right living situation can improve someone's life. An only child whose parents divorced 50 years ago, Stacy talks to Barbara about how different her experiences have been -- first helping to care for her father, who died in 2014, and now her mother, suffers from early to moderate dementia. They discuss the value of assisted living and how, for certain dementia patients, moving in with others can vastly improve their condition, mood, and quality of life.

7 years into Alzheimer’s: His imaginary life is all day long now

Tue, 15 Feb 2022 04:00:00 -0500

Today Barbara welcomes back Dotti McLean, whose husband Brian was diagnosed with Alzheimer’s disease seven years ago. They talk about how the disease has progressed, and all the things Dotti has learned along the way. Dotti describes some of the physical problems – losing his muscle memory, having a hard time walking, getting dizzy and falling down – as well as the memory decline. She says that Brian is unable to understand basic directions or explanations and lives in his own imaginary life all day now. She and Barbara discuss how difficult it is for a caregiver to parse through the various issues and understand exactly what’s causing them, let alone how to treat them. They also talk about the emotional pain of taking care of someone after a 52-year marriage; how it feels to acknowledge the sadness and sense of loss.

How Senior Move Managers tackle the complex logistics of moving a loved one

Tue, 08 Feb 2022 04:00:00 -0500

Today Barbara is joined by Marty Stevens-Heeber, founder and CEO of Clear Home Solutions. An accomplished business woman and entrepreneur, Marty tells Barbara why she was drawn to working with older adults. They discuss her work as a Senior Move Manager, a fairly new but growing role devoted to helping families deal with the difficult (and potentially traumatic) experience of moving loved ones into a new living situation. Her company can take over any and all of the logistics associated with the move – from the packing up and shipping to the unpacking and setting up to the final sale or lease of the home. They talk about how Marty discovered this niche, and why it’s so important to make these moves feel as comfortable and familiar as possible, especially for seniors with dementia. It’s rewarding as well, she says, because these services are very much in demand. She launched her company nine years ago, and says she “never looked back!”

When we were listening to music, everyone else got a break

Tue, 01 Feb 2022 04:00:00 -0500

Today Barbara is joined by Bobbie Schwarcz to talk about Bobbie’s father-in-law, Chuck, who died several years ago. When Bobbie met Chuck, he’d already been diagnosed with dementia. Bobbie describes Chuck as an intelligent, charming, and fascinating man who’d been quite an accomplished musician. As his disease progressed, Bobbie started listening to music with him. When she’d play Marie Callas, his all-time favorite singer, he’d light up and smile. “It was like a light bulb would go off,” she says, “and he was happy.” She and Barbara talk about the weight and responsibilities that caregivers take on, and the importance of finding humor whenever and wherever possible.

Cutting-edge technology designed to help people with dementia and their families

Tue, 25 Jan 2022 04:00:00 -0500

Today Barbara is joined by social gerontologist Benjamin Surmi. As director of culture, training and Koelsch Innovation Lab for Koelsch Communities, Benjamin focuses on seeking the most effective ways to support family caregivers. In the past, he says, most tools were human – nurses, dog walkers, house cleaners, drivers, bookkeepers. These days, thanks to technological advances and COVID, many are virtual. Benjamin shares some of the items in his “Tech Toolbox”: tracking devices that look like watches; GPS shoe inserts; a device that looks like jewelry that detects falls. Also on the market, a belt that senses a fall and inflates with air in time to protect hip bones and avoid injury. Many of these devices are expensive, but Benjamin advises weighing the one-time expense against the cost of long-term injury and pain.

Caregivers vs. the healthcare system: An unbelievable story of perseverance and hope

Tue, 18 Jan 2022 04:00:00 -0500

A lot has happened since Ted Snyder was Barbara’s guest on Dementia Discussions last April. Today he tells Barbara how his wife Rena’s condition has progressed from mild cognitive impairment to late-stage Alzheimer’s; how she is often unresponsive, although she always responds well to music. Unstable on her feet, after Rena fell several times in the long-term care facility, Ted moved her into a small “board and care” in March. When she fell and broke her hip in September, Ted and his family were faced with a difficult decision. What happened next was a situation he had never anticipated. It’s a stunning example of the highs and lows of caregiving, and how the healthcare community can be your biggest impediment or a generous and unexpected ally.

Remembering a remarkable woman

Tue, 11 Jan 2022 04:00:00 -0500

Today Barbara welcomes back Owen Frances. Owen lost Rhonda, his precious wife of 52 years, to Alzheimer’s disease last year. In a beautiful, heartfelt, and extremely moving tribute, Owen shares memories and stories about Rhonda. He describes a remarkable woman who helped countless others through their grief as a bereavement counselor. “There was nobody who ever met her who didn’t come away better for it,” he says.

What Happens Next? Lewy Body Dementia and the confusing stages of decline

Tue, 04 Jan 2022 04:00:00 -0500

In her first podcast of 2022, Barbara is joined by Cheri Dickard whose mother, 82, was diagnosed with Lewy body dementia (LBD) three years ago. Cheri tells Barbara how one of her sisters -- a professional healer who works with many older clients -- had picked up on the signs much earlier, recommending natural remedies (exercise, fresh air). But her parents are traditional and waited until they received the official diagnosis from a medical doctor before taking her advice. Cheri tells Barbara she's grateful that she and her siblings can be around and give her dad a much-needed “respite” from his caregiving duties. They also discuss family dynamics and the complexities of sharing caregiving responsibilities with other family members.

Gratitude

Wed, 29 Dec 2021 00:00:00 -0500

Happy Holidays from Dementia Discussions! In Barbara’s last podcast of 2021, she reflects on the past year and why she started Dementia Discussions. She also talks about the importance and benefits of gratitude, and two of the things she’s especially grateful for this year.

What’s going on?

Wed, 22 Dec 2021 04:00:00 -0500

Today Barbara is joined by Dr. Linda Ercoli, a clinical psychology professor and the director of UCLA’s Longevity Center. Linda has always been fascinated by what happens in the brain with dementia, and her graduate work was in geriatric psychology and the issues that elders face in our society. She talks to Barbara about neuropsychology, in which the focus is an assessment of cognizant and intellectual functions. She gets called in by neurologists, psychologists, and sometimes even lawyers to help tease out brain-related diagnoses by looking at brain scans, blood tests, and medications. After the evaluation – which she says is usually triggered by memory issues – Linda works with individuals and families to help them understand what is happening and to recommend treatment.

Advanced Care Planning: How to get started and why it’s so important

Wed, 15 Dec 2021 04:00:00 -0500

Today Barbara welcomes Stefanie Elkins to the podcast. Stefanie is an aging-life care manager and an end-of-life doula whose company, Be Present Care, supports and guides families through end-of-life caring and planning decisions. They discuss the breadth and roles of a family caregiver, and how difficult it can be to make end-of-life decisions for a loved one. Stefanie talks about the importance of planning ahead and getting certain directives in place, and gives advice on how to initiate these uncomfortable yet important conversations.

Taking over tasks for her husband- Step up or step back?

Wed, 08 Dec 2021 04:00:00 -0500

Today Barbara talks with Karen Tucker, who attends her Lewy Body Dementia (LBD) support group at UCLA. Karen takes care of her 71-year-old husband, who was diagnosed with LBD last year, as well as her 95-year-old mother who lives in her guesthouse and her 45-year-old son who still struggles after a psychotic break at 23. They discuss Karen’s journey as her husband’s condition declined, and some of her biggest challenges, such as learning not to take things personally -- even when her husband gets upset and yells at her. She’s also learning how to navigate taking on the jobs that he used to do while still preserving his dignity. Karen says the hardest part is carving out time for herself.

Dealing with the Denial of Dementia

Wed, 01 Dec 2021 04:00:00 -0500

Jay Swerdlow joins Barbara to talk about caring for his wife, who is in denial about her dementia diagnosis. They discuss different ways to deal with her unrealistic demands and share insights to help caregivers with traveling and getting around airports. Jay expresses the many emotions he has about this difficult journey he’s on with his wife, and how important it is to make time for himself.

Caretaking from a Distance

Wed, 24 Nov 2021 04:00:00 -0500

Amy Bean joins Barbara to tell us about her dad, an accomplished and successful businessman who’d planned for exciting travels during his retirement. Unfortunately those plans changed with his diagnosis of vascular dementia. She reveals the stress and struggles of those early stages, and talks about the fear she often saw and heard in him. Since cars were a big deal to him, Amy tells us how they handled taking his driving privilege and mobility away, and about the guilt and issues around orchestrating care while living far away. Amy shares how they were able to put together a team of caregivers so he could stay in the house he built, in the town he grew up in, for which she feels very fortunate.

What is Lewy Body Dementia?

Wed, 17 Nov 2021 06:00:00 -0500

It’s been 13 years since Angela Taylor kicked off her journey to understand Lewy Body Dementia (LBD). As a family caregiver for her father when he had a hard time managing medicine and finances, it took her awhile to figure out something was really wrong. Today, she is the Senior Director of Research and Advocacy at the Lewy Body Dementia Association (LBDA). She’ll explain how her father’s diagnosis of REM Sleep Behavior Disorder and Mild Cognitive Impairment are common early signs of LBD, and why it’s often misdiagnosed as Parkinson's disease. Angela shares important red flags to watch out for and where to find support.

Click here to visit the LBDA website or call LBDA at 800-539-9767.

Alzheimer’s: The devil we know

Wed, 10 Nov 2021 00:00:00 -0500

Today Barbara is joined by Karen Patterson, who attended Barbara’s “Memory Club” and other memory-care groups with her husband, Bob. Bob was -- literally -- a rocket scientist, and in his late 50s he was the first to notice that something was wrong.

Karen believes it was the pressure of his work on top of his brain changing that was too much, and once he started making mistakes and forgetting important things, he chose to retire at 59.

They discuss what life was like after Bob retired, and the odd role reversal when he’d need Karen’s help with technology or directions home. After a series of inconclusive tests and evidence of Mild Cognitive Impairment (MCI), Karen describes hearing Bob’s official Alzheimer’s diagnosis as “oddly comforting.”

After years of trying to understand what was happening, it was a relief to have confirmation. “Now we know the devil we have to deal with,” she says. Bob died in 2016, but Karen still receives red roses every Valentine’s day -- a sweet and romantic gesture that Bob had arranged with a neighbor before he died.

Phases and transitions of debilitation

Wed, 03 Nov 2021 04:00:00 -0400

Today Barbara talks to Beth Harris about caring for her mother, Gail. Gail was first diagnosed two years ago with a Mild Cognitive Impairment (MCI), then with Alzheimer’s two months ago. Beth says it was hard to accept her mother’s diagnosis at first, because she remained lucid and sharp. They discuss the “common themes” of Alzheimer’s -- getting lost, forgetting things, having trouble processing information -- yet how each case is unique, making it impossible for caregivers to know what to expect. They also talk about some creative ways that Beth convinces her mother to do things, and why, in certain situations, it’s ok to lie.

My mother became the daughter I never had

Tue, 26 Oct 2021 06:00:00 -0400

Today Barbara is joined by Carole Lieber-Wilkins whose mother, Fran, has suffered from dementia for the past 12 years. Carole talks about Fran’s illness, which began when trauma from 9/11 caused a psychotic break. They discuss Fran’s journey since then, from assisted living to moving in with Carole and her husband to finally landing in a full-time care unit when she couldn’t be left alone. Carole tells Barbara about the day she moved her mother into full-time care -- “it was one of the hardest days of my life” -- and how she wishes she could have taken care of her but realizes she did the right thing.

A wife’s crash-course in taking care of her husband

Tue, 19 Oct 2021 00:00:00 -0400

When Suzy Rosenberg’s husband, Paul, was diagnosed with Lewy body dementia at 86, Suzy didn’t know of anyone else with dementia. She joins Barbara to discuss her caregiving journey; how she felt so alone at first, and how she was able to find resources and support. They talk about Suzy’s life now -- two years later -- and the ups and downs of having Paul around all the time. They also discuss Suzy’s concerns for the future; what she wishes she’d done differently, and what she worries about the most.

Things can become too much really quickly

Tue, 12 Oct 2021 06:00:00 -0400

Today Barbara talks to Adam, whose 82-year-old father was recently diagnosed with Lewy body dementia. Adam describes his father’s actions leading up to the diagnosis, such as forgetting where he was and not recognizing his wife. Adam talks about how swiftly his father’s mental state declined once he’d been diagnosed, and how quickly he needed to be hospitalized and then placed in assisted living. He and Barbara discuss the complexities of becoming a caretaker, and how helpful it is to have a plan in place.

For more information on Lewy body dementia, click here.

The Cruelest Disease You’ve Never Heard Of

Tue, 05 Oct 2021 06:00:00 -0400

Today Barbara talks to Anna Ivara, whose son George, age 61, suffers from Frontotemporal Degeneration (FTD). Anna explains how FTD hit the language centers in George’s brain, rendering him unable to speak or make any facial expressions. They discuss the differences between FTD and Alzheimer’s, and how Anna found resources and support.

To learn more about FTD, visit The Association for Frontotemporal Degeneration or watch the 60 Minutes special

When an Alzheimer’s diagnosis leads to a whole new life

Tue, 28 Sep 2021 06:00:00 -0400

Today Barbara welcomes Dotti McLean. Dotti’s husband, Brian, was an international expert in environmental policy who loved to build furniture, paint, and play the boogie woogie on the piano. After retiring 10 years ago, Dotti says, “things started to change.” She tells Barbara about the early signs, when Brian was having trouble following conversations, losing his train of thought, and forgetting basic things. They discuss the progression of his cognitive decline, and how Dotti struggled to keep up, learning the hard way that Brian didn’t react well to many prescribed medications and supplements.

Diagnosed at 56: Younger-onset Alzheimer’s

Tue, 21 Sep 2021 06:00:00 -0400

Today Barbara is joined by Bryan Wing whose wife, Patricia, was diagnosed with younger-onset Alzheimer’s disease at age 56. Bryan describes Patricia’s progression, from the early signs when she’d move things around in the kitchen (items that belonged in the refrigerator appeared in the cabinets, etc.) to when she had her first seizure in 2013. They discuss the challenges Bryan and his family experienced to get an accurate diagnosis, and the time when Patricia was prescribed the wrong medication and turned into a completely different person.

Visit ALZ.org for more information on younger-onset Alzheimer’s

Caring for the person who’s always been your mom

Tue, 14 Sep 2021 06:00:00 -0400

Today Barbara welcomes Deb Kurtz, whose mother was diagnosed with Alzheimer’s in 2018. They discuss how the disease gradually changed Deb’s relationship with her mother -- the “slow role reversal” as she realized her mother couldn’t take care of herself. Deb remembers how overwhelming it was at first, trying to care for her mother and stay on top of the disease. They talk about Deb’s approach, and how she coped with her mother’s anger and resentment: “You learn how not to press or fight ... then you figure things out and handle it by yourself.”

Follow or reach out to Deb:
@alookbackbook
deb@alookbackbook.com

Beyond BINGO: Creative Brain Games and Virtual Programs from the Alzheimer’s Association

Tue, 07 Sep 2021 06:00:00 -0400

Today Barbara welcomes Yael Wyte, program director at the Alzheimer’s Association (CA, Southland Chapter). They discuss the association’s mission, and the exciting brain studies and research happening all around the world. They also discuss the association’s deep resources -- and how “going virtual” actually inspired new opportunities for collaborations and programs. To learn more, please visit ALZ.org or call 1-800-272-3900.

He was the master of ceremony of our life

Tue, 31 Aug 2021 06:00:00 -0400

Today Barbara is joined by Roz Wolpert. Roz describes her husband Jay -- a talented and successful screenwriter and Hollywood producer -- as deeply feeling and exceptionally articulate; a “big man” both in stature and personality. They talk about the early years, before the official Alzheimer’s diagnosis, and how difficult it was for Jay to accept what was happening. They also discuss the stigma around dementia, and how caregivers can support and “work around” their loved one’s feelings of anger, frustration, and shame.

How to build brain health to prevent Alzheimer’s

Tue, 24 Aug 2021 06:00:00 -0400

Today Barbara is joined by Bonnie Waddles, the executive director of Hilarity for Charity (HFC), a non-profit that uses humor to raise awareness among young people about Alzheimer’s disease. They discuss the concept of brain health, and how one out of three Alzheimer’s cases can be prevented through life-style changes and interventions.

I don’t know who I’m gonna wake up with

Tue, 17 Aug 2021 06:00:00 -0400

Today Barbara is joined by Bruce Ettinger whose wife, Honey, was diagnosed with Parkinson’s disease and then dementia. With the diagnosis, Bruce says that Honey sank into a deep depression that she’s never come out of. They discuss the unpredictability of her mood swings -- one day she’ll wake up happy and loving, then the next day in a panic attack. “Her struggles make me love her more,” he says.

Growing up while losing half of you

Tue, 10 Aug 2021 06:00:00 -0400

Now 26, America Garza started noticing something was wrong with her 81-year-old father when she was still in high school. She joins Barbara to talk about the early signs of Alzheimer’s, and how, as a child, she struggled to interpret the symptoms. They discuss her journey, when she knew something was wrong but was too young to trust her own judgement or to have the vocabulary to define what she was noticing.

My Dad Doesn’t Remember my Childhood

Tue, 03 Aug 2021 06:00:00 -0400

Today Barbara is joined by Jill Davis,* whose father is battling dementia on the east coast. Jill says at first, the symptoms seemed mild: he was mixing pronouns and forgetting words. But from there, it progressed quickly. She describes the shock and confusion she felt when she realized her dad had lost most of his memories, and how she struggles to understand their relationship now that he has no memory of her childhood.

*not her real name

When You’re Too Close to Notice

Tue, 27 Jul 2021 00:00:00 -0400

It was Ramona Garza’s daughter who first noticed that George (Ramona’s husband) seemed different. A fastidious engineer, he was ignoring bills and letting important things fall through the cracks. George was officially diagnosed with Alzheimer’s in 2016 but looking back, Ramona says the signs were there much earlier. Ramona joins Barbara to discuss the early signs of memory loss, and how sometimes a spouse can be too close to see them.

It’s like they regress to childhood

Tue, 20 Jul 2021 06:00:00 -0400

By the time Chris Zenner’s mother was diagnosed with Lewy Body Dementia in 2020, she had lost her short-term memory, her concept of time, and her ability to rationalize and reason. Chris joins Barbara to talk about caring for his mother, who was a fiercely independent and strong-willed woman, as her personality radically changes and she can no longer take care of herself.

A Daughter on the Alzheimer’s Journey

Tue, 13 Jul 2021 06:00:00 -0400

Barbara is joined by Megan Dobkin on the day she learns her father is moving into the memory unit of an assisted living facility. Megan talks about how hard it was in the early days, when her father was cognizant enough to realize something was happening to his brain. She and Barbara discuss the limitations of testing for diseases like Alzheimer’s, particularly when doctors don’t have a baseline to compare their patients’ responses. Megan says one of the biggest struggles for her and her family was knowing her father changed, but not having anything show up in the tests. “Only we as a family knew where he was coming from,” she says.

I was looking for a miracle

Tue, 06 Jul 2021 06:00:00 -0400

Today Barbara is joined by Kenneth Mitchell, whose wife Mary Ann was diagnosed with Parkinson’s disease in 2013 and Lewi bodies dementia in 2016. Ken recounts how hard it was for him to accept the diagnosis, and the irrational lengths he went to in the beginning trying to help her. Looking back, he says that accepting that she won’t get better has been one of the hardest parts. As Mary Ann’s condition declines, Ken is overwhelmed by what she’s forced to endure: “She’s my hero, I don’t know what I’d do if I had what’s going on with her.”

I wanted him to be as happy as he could be

Tue, 29 Jun 2021 06:00:00 -0400

Marina Day joins Barbara to talk about her husband, Paul, who was diagnosed with Alzheimer’s 10 years ago. She describes how difficult it was in the beginning, when Paul realized he coudn’t drive anymore and had to shut down his law office. “The world opened up in a dark way for him,” she says, “he became really depressed.” Marina tells Barbara about hiring their first caregiver, and telling Paul he was his driver. She also describes techniques she used to help Paul remember things -- detailed charts she ultimately turned into an art piece.

The inequality of power between the caretaker and their loved one

Tue, 22 Jun 2021 07:00:00 -0400

Bill Coleman returns to talk to Barbara more about caring for his wife, Deborah, who was diagnosed with posterior cortical atrophy eight years ago. Deborah was a talented and beloved architect, but this condition affected her ability to draw, read plans, organize her thoughts, and process information. After decades of deciding things together, Bill talks about how hard it is to make all the decisions by himself, and how painful it was to close down Deborah’s architecture firm.

For more information on posterior cortical atrophy please visit this link.

Get a dog!

Tue, 22 Jun 2021 06:00:00 -0400

In her first episode with both spouses, today Barbara is joined by Bill and Deborah Coleman. Eight years ago, Deborah was diagnosed with a rare form of Alzheimer’s which affects visual and spatial relationships. An accomplished architect, Deborah had to stop working. “It feels like part of my brain is missing,” she says. They discuss the challenges of managing her disease, and the importance of maintaining a sense of structure and routine.

You’re Not Alone

Tue, 15 Jun 2021 06:00:00 -0400

Today Barbara is joined by social worker and co-facilitator of her Alzheimer’s support group, Monica Moore. Monica is the community health program manager for the Mary S. Easton Center for Alzheimer´s Disease Research at UCLA and co-director training and education activities at UCLA-CADC. They talk about how isolating the world of dementia is for the caretaker, and how it’s helpful to know other people are going through the same thing you are. They discuss how to find the right group and why it’s so powerful to hear someone else tell your story.

It’s been an adjustment for all of us

Tue, 08 Jun 2021 06:00:00 -0400

When Linda’s mother Grace was diagnosed with Lewy body dementia (LBD) in 2019, Linda felt sadness and relief at the same time. (LBD is a degenerative condition with many similarities to Alzheimer's disease, but it takes hold much more quickly.) LBD is difficult to identify, and now they had an answer for why Grace seemed different -- why she was repeating stories and feeling depressed and bored. Linda and Barbara discuss the difficult transition of moving her parents from their home on the east coast out to California. The plan was for them to stay in Linda’s pool house temporarily before moving into an assisted living facility, but COVID happened, so they’re still there.

If you’d like to learn more about LBD, here is a link to some resources: https://www.lbda.org/

That’s why I’m here!

Tue, 01 Jun 2021 06:00:00 -0400

UCLA science professor Harvey Hershman talks to Barbara about the biggest challenges he’s faced as a caretaker. It was in 2010 when Betty, his talented and creative wife of 50+ years, first showed signs of memory loss. Harvey says he was in denial for years -- it wasn’t until joining Barbara’s support group in 2016 that he came to terms with her illness. At first, Harvey was sceptical about the group and what it had to offer. He and Barbara discuss how much he has benefitted from the group and how much can be learned from fellow caretakers.

Letting Go of Him Little by Little

Tue, 25 May 2021 06:00:00 -0400

Bette Wilkes talks to Barbara about her late father-in-law, David Wilkes, who died in 2016. She describes how painful it was to watch a brilliant and proud man lose his mind to dementia. Toward the end, when he no longer cared about the things that had once mattered to him, Bette realized how much harder it is on the caregiver; he was able to just give up, but watching it happen is so hard. She and Barbara also discuss her experience with assisted living, and what she’d do differently if she had to go through it again.

Take the journey the way the journey takes you

Tue, 18 May 2021 06:00:00 -0400

After years of healthy meals and daily exercise, it was a surprise when Rhonda was diagnosed with Alzheimer’s disease. Her adoring husband, Owen, tells the story of their life together, and his strengths and struggles as he navigates her dementia. He and Barbara discuss how caregivers need to educate themselves about the disease and get the help they need.

My Mother's Been Through a Lot and Now She Has Dementia

Tue, 11 May 2021 06:00:00 -0400

This week Barbara talks to NYU professor and filmmaker Linda Mills, whose mother was diagnosed with early onset dementia in 2011. Linda describes her mother’s traumatic escape from Nazi Vienna as a small child in the 30s. She and Barbara discuss how hard it is for dementia sufferers to articulate their frustrations -- and how caretakers need to learn how to listen to their loved ones in a new way. They also discuss the complexities of transitioning loved ones out of the home or between different assisted-living situations, and why transitions often evoke decline.

It's the little things

Tue, 04 May 2021 06:00:00 -0400

Winston Greene first noticed his wife Pansy was forgetting things and repeating herself in 2010. As the disease progressed, he progressed along with it, taking over more of the little things that Pansy could no longer do. Winston tells Barbara how joining an Alzheimer’s support group saved him by making him feel less alone. They also discuss the important advocacy work the couple does on behalf of the Alzheimer’s Association. They’ve even lobbied in Washington, DC and Sacramento, appearing in person to raise money and awareness. “They hear our story,” Winston says. “It’s so much more powerful coming right from us.”

alzla.org

How Opica Adult Care Care Continues to Support it's Members

Tue, 27 Apr 2021 06:00:00 -0400

This week, Barbara is joined by Sara Kaye, Director of Family Services at OPICA. The first Adult Day Program and Counseling Center in Los Angeles, OPICA supports caretakers and patients in every phase of memory loss. They talk about how difficult it is for dementia sufferers to advocate for themselves, and how the Center offers its members a much-needed sense of purpose, structure, and community. They also discuss how geriatric healthcare was forced to evolve pre- and post-COVID, and how OPICA has created programs like OZ -- a virtual program with a monthly subscription for daily programming and activities.

OPICA.org

Tips & Life Lessons from an “Un-natural” Caregiver

Tue, 20 Apr 2021 09:00:00 -0400

It’s been a rough five years for Snuffy Walden, whose wife Debby was first diagnosed with cognitive problems in 2016. Snuffy says he’s not a natural caretaker. He talks to Barbara about how stressful it was in the beginning; taking over all the responsibilities of their home while trying to find the right caregivers for his angry and defiant wife. He shares his creative method for helping his wife beat a dependency on alcohol, and how he made it easier for her to accept new caretakers into their home. Snuffy also talks about his decision to move Debby out of their home, and how he’s been working through his feelings of guilt and sadness.

Daddy's Little Girl

Tue, 13 Apr 2021 09:00:00 -0400

Emma Travis has a bright future. Brought up by loving parents, she started a new, exciting job in 2019 and recently got engaged to the love of her life. Her role model has always been her dad, a successful retired executive who always demonstrated leadership, hard work, and a love for people. Everything changed four years ago, when her dad was diagnosed with Parkinson’s, Dementia, and Alzheimer’s disease.

Emma and Barbara discuss the challenges of this unexpected chapter in her and her dad’s life, and how the power of positivity can persevere, despite it all.

Take Care of Yourself - Do Whatever it Takes to Find Help

Tue, 13 Apr 2021 09:00:00 -0400

Today, Barbara welcomes caregiver and loving husband of almost 58 years, Ted Snyder. Ted talks about his wife Rena’s battle with Alzheimer’s. He shares some of the challenges they’ve faced and the different resources and strategies he’s learned as her caregiver.

Barbara talks to Susan Howland, Program Director of the Alzheimer's Association

Tue, 13 Apr 2021 09:00:00 -0400

Today Barbara is joined by Susan Howland, Program Director of the Alzheimer's Association, California Southland Chapter. Susan tells us about their mission, and the services they offer for people with dementia and their families. The Alzheimer’s Association is a national, nonprofit organization providing educational information, emotional support services and advocacy for those with memory loss, their care partners and professionals in the field of aging.

For more information: https://www.alz.org/

Welcome to Dementia Discussions

Wed, 03 Feb 2021 12:00:00 -0500

Coming April 2021! A weekly podcast about dementia. Join your host, Barbara Hament, as she interviews medical professionals, caregivers, and various experts on how to better understand and cope with this challenging and complex disease.