Dementia Discussions

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.

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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. 

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. 

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.

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.

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.

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.

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.

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.

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 [email protected].   

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.