Caregiver Storyteller - About Alzheimer's and Dementia Caregiving

Imagine navigating the challenges of Alzheimer's within your own family—feeling lost, overwhelmed, and unsure where to turn. In the inaugural Spanish-language episode of the Caregiver Storyteller podcast, hosted by Perla Tamez Casasnovas, we bring you the powerful story of Dr. Anderson Torres, President and CEO of R.A.I.N. TOTAL CARE, Inc. As a proud Puerto Rican Latino from the Bronx, Dr. Torres knows these struggles all too well. In this deeply personal conversation, he shares not just the facts, but the raw, emotional reality of caring for a loved one with Alzheimer's. With wisdom born from experience, Dr. Torres offers invaluable insights, resources, and advice that every caregiver in the Latino community needs to hear. Tune in to this compelling conversation and let Dr. Torres guide you through the complexities of caregiving. Discover how CaringKind is dedicated to empowering the Latino community with the support and resources they need, reminding you that you’re never alone on this journey. Visit us at www.ckpodcast.org #caringkind #alzheimers #caregiverstoryteller

Dr. Shaw noted the loss of affection in a relationship in which ‘the luster had not worn off in 30 years of marriage’. When his wife Rebecca said that she could not remember anything from an article she had read three times, piecing this with the loss of affection. Dr Shaw knew that their journey with dementia had begun.  He pivoted from radiation oncology to mental health counselor specializing in grief and developed a memory counseling program while he partnered in the care of his wife.  Learn more from his fascinating story and adopting changes into their life to nurture his relationship with his wife, care for himself, and remake his career.  It’s a beautiful love story and a story with powerful insights and hope.

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.

Purchase Room for Grace on Amazon.

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.