Dementia Discussions

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. 

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.

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.

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. 

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. 

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.

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!” 

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. 

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.

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.