Caregiver Storyteller - About Alzheimer's and Dementia Caregiving

Max Stappler met and married his wife, Vivian, in Israel in 1968. After more than 30 years of marriage, it was a friend who first noticed that Vivian’s behavior had changed. As Vivian began displaying some classic symptoms of Alzheimer’s, Max’s role as primary caregiver grew into a full-time job. One day, Vivian got lost in New York. It was then that Max decided to leave New York to care for Vivian in the safer locations of Florida and Colorado.

Occasionally, Caregiver/Storyteller interviews dementia care professionals. In this interview, we hear from Dr. Lisa Mosconi about the role nutrition plays in brain health. The science becomes personal as Dr. Mosconi shares the story of how her grandmother developed Alzheimer’s and the challenge that her mother faced as primary caregiver.

Dr. Mosconi holds a PhD degree in Neuroscience & Nuclear Medicine, and is a certified Integrative Nutritionist and holistic healthcare practitioner. She is well known for her research on the early detection of Alzheimer’s disease in at-risk individuals using brain imaging techniques such as positron emission tomography (PET) and magnetic resonance imaging (MRI). She is passionately interested in how risk of memory loss and Alzheimer’s disease can be mitigated, if not prevented through the combination of appropriate medical care and lifestyle modifications involving diet, nutrition, physical and intellectual fitness.

Ellen Lebowitz first became a caregiver when her father was dying of congestive heart failure. While caregiving was emotionally difficult, Ellen’s burden was lightened by a hospice staff who kept her informed of her father’s status every step of the way. When Ellen’s mother, Ruth, was diagnosed with Alzheimer’s Disease, she again became a caregiver – but this time she was caregiving for someone with a disease that felt unpredictable and disorienting. Despite it all, Ellen learned to let go of conflict from the past and offer her mother unconditional love.

Cindy Legorreta’s introduction to Alzheimer’s began when her older friend, Kitty, began struggling to come up with common words. Kitty’s home was sold to pay for her care and Cindy would visit regularly. Soon after, Cindy’s mother Lucille began showing symptoms of Alzheimer’s and would later be diagnosed with Mixed Dementia. A period of estrangement that kept Cindy apart from her mother would end when Cindy and her sister Val became primary caregivers for their mother. This is her story.

Ann Wyatt has been a long-term care professional since the 1970s. In 2011, she was tasked with finding a way to help nursing care facilities develop programs that better meet the needs of residents with dementia. When she visited the Beatitudes program in Arizona, she found the answer. In this episode, Ann shares what happens when an organization re-organizes itself from top to bottom to make comfort the priority in long-term dementia care.

When Dr. Gomez's father got lost driving around a familiar neighborhood, Dr. Gomez knew something was amiss. But because of their distance - father in Miami and son in New York, the signs were hard to see. Only a trip to his father's home revealed the extent to which Dr. Gomez's father was having difficulty caring for himself. Personal care was just the tip of the iceberg - law enforcement soon made a visit which changed the course of both of their lives.

Rob Zukowski's mother, Elena, was diagnosed with Parkinson’s disease and developed dementia as a result. Rob serves as the primary, long-distance caregiver for his mother - he lives in Manhattan and travels to upstate New York to visit her every weekend. With some family support and a dedication to his mother, Rob is able to perform his duties as caregiver - though the physical and emotional toll that family caregiving takes can be heard in his words and his voice.

Keith Amparado tells the story of how he very carefully took greater control over key aspects of his mother's life, and how he realized the degree to which his mother trusted him.

Lou-Ellen’s father, Joe, was diagnosed with Alzheimer’s, leaving her mother, Marilyn, to serve as primary caregiver – a role that left her financially, emotionally, and physically exhausted.

Nancy Shamban served as the caregiver for her partner Marilyn when Marilyn developed dementia soon after successful treatment for cancer. The double-whammy of caregiving through two illnesses strained their relationship, almost to the breaking point. Helping Nancy through this period were Marilyn's children from a previous relationship, a legacy of family that Nancy treasures. Today, Nancy helps others through the caregiving process by leading a support group for Alzheimer's and dementia caregivers.