Caregiver Storyteller - About Alzheimer's and Dementia Caregiving

Jordana's mother began showing signs of dementia relatively early. Luckily, her father was newly retired and was able to pretty quickly shift into the role of primary caregiver. Still, caregiving became an activity shared by both father and daughter. Having a wife and mother with dementia simply became the new normal.

Annette Perpinan met Ralph when dinner for two at a nice restaurant in Manhattan cost just $25.00. It was only when Ralph was diagnosed with Alzheimer's did Annette see the signs retroactively. With no one else to help, and a medical system that didn't seem to care, Annette took on the challenge of caring for Ralph until the end of his life.

Ellen Ratner inherited a love of music from her mother who loved to sing. Ethel had three loves: her husband, music, and her daughter, Ellen, whom Ethel referred to as 'my life.' The pressure of being on the receiving end of Ethel's adoration would irritate Ellen, especially because her mother had a larger than life persona. But after her mother was diagnosed with Alzheimer's, Ellen would come to appreciate the legacy of love and music that Ethel left for her only child.

Steve Zellner is an only child who became the primary caregiver for his mother, Sylvia, who was diagnosed with Alzheimer's in her 80s. As the disease progressed, Sylvia became uncharacteristically aggressive, at one point sending Steve to the hospital with a brain injury. Steve shares this harrowing story, along with memories of kinder days from an otherwise idyllic childhood in New York City.

Daniel Kenner is an actor based in New York City. As his father Buddy faced dementia and his mother Maureen battled cancer, Daniel served as one of many caregivers. With caregiving support from family, friends, and community, Daniel was able to spend time with his parents recording the stories of their lives. Working with his mother, Daniel ultimately transformed her life story into a book that explores her career as a teacher of special education students in Providence, Rhode Island. That book, “Room for Grace” was released on October 2, 2018.

Sue Funke is the youngest of several children and the one who lived closest to her mother during her mother's diagnosis of Alzheimer’s Disease. Sue was the first to notice Irene’s initial decline and found it difficult to convince her siblings about the significance of the signs that she saw. When they came to understand her mother's illness, the improv ethos of 'yes, and' came in handy. Despite their united front, their mother's husband found it harder to accept the seriousness of the disease, and Sue and her siblings faced not only the challenge of their mother's disease, but also the obstacle of a health care proxy held by someone else.

Nancy Hendley is a Dementia Care Trainer at CaringKind. Having started her career as a senior adult day care provider, Nancy was asked to lead an Alzheimer's and dementia care program. Nancy quickly fell in love with her dementia clients and that love has fueled her passion for dementia care and training Alzheimer's and dementia caregivers. Nancy shares some of her favorite stories from her life's work.

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.

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.

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.

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. And yet, Lou-Ellen's mother very effectively hid that exhaustion from her children. It wasn't until a trip to Florida to visit her parents did Lou-Ellen understand the toll that caregiving had taken and just how unsustainable the situation was. After Joe died, Marilyn developed vascular dementia and Lou-Ellen became the caregiver for her. It was by serving as primary caregiver for her mother that Lou-Ellen came to understand just how difficult caregiving can be and discovered a new-found appreciation for the depth of her mother's love and loyalty.

Within hours after his father died, Keith Amparado realized that his mother showed signs of Alzheimer's Disease. The year was 1996, and his suspicions proved correct. As the only child, it fell on Keith to be his mother's primary caregiver. Keith 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. Despite some painful experiences along the way – including one memorable trip to the hospital - Keith's caregiving experience ultimately led him on a path of serving as executor of family estates, as well as running an Alzheimer's and dementia support group for his colleagues at NYU, a group he still runs to this day.