Dementia Discussions

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. 

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.  

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. 

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.

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.

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.  

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. 

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. 

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.

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.