Sometimes, when you’re at the starting line as a family caregiver, you may never imagine what challenges, feelings of frustration and sadness lie ahead. But you may also be surprised at the bountiful gifts of love you receive.
The holidays can be especially challenging for caregivers who may feel overwhelmed and burned out from being a primary source of care for loved ones.
The complicated journey that Susan A. Marshall took began and ended with her caring for both parents before they passed away. Her mother died three years ago after a lightning fast decline due to dementia. Her father has been gone four years due to a decade-long battle with Alzheimer’s.
Caring for loved ones puts a constant stress on families. “One of the things I hear most often is how alone they feel. I assure them they are not alone –there are many resources for those who are caring for people with Alzheimer’s or dementia.”
She will be sharing what she learned in an informative Zoom presentation with the Alzheimer’s and Dementia Alliance of Wisconsin and their partners on Thursday, Dec. 17.
“Caregiving for those with Alzheimer’s and dementia is especially challenging,” Marshall said, “because you’re grieving for them while they are still there, while they are fading away.”
She is a business leader (founder of Backbone Institute. https://backboneinstitute.com/) and author of the newly released book, Mom’s Gone Missing, a deeply moving story about her experiences as the major caregiver for her parents.
Former Wisconsin governor weighs in
The foreword to Marshall’s book was written by Martin Schreiber, former Wisconsin Governor, and author of My Two Elaines. He described his journey caring for his wife who struggled with Alzheimer’s.
“Anyone who is about to journey as a caregiver or anyone who wants to understand what caregiving is truly like must read about the experiences of a caregiving daughter, Susan A. Marshall,” Schreiber wrote in the foreword. “She openly and candidly shares with us her excruciating journey as a caregiver for both her mom and dad.
“It is unfortunate we do not have a medicine to cure the loved one who is ill, to give the caregiver the necessary patience, understanding, acceptance, humor, and perspective that are so critically needed at this time,” Schreiber continued. “While no medicines like that are available currently, we do have Mom’s Gone Missing. It will not cure or take away the pain but it will help the caregiver survive and maybe even thrive.”
In her own words
Marshall’s book starts with a call in 2016 from her sibling in Colorado who said, “Mom’s Gone Missing.”
She explains her feelings in the preface of her book. “Writing about family experiences is always fraught with the dangers of misinterpretation, colliding viewpoints, and hurt feelings,” Marshall said. “With this danger at the forefront of my mind, I set out to bring the experience of Dad’s long journey through Alzheimer’s disease, Mom’s experience as his lifelong partner and caretaker, and Mom’s rapid decline and death surprisingly soon after Dad’s passing.
“My sole and sincere reason in writing this,” Marshall added, “is to offer information and encouragement to anyone who is now or will one day be confronting the declining health and ultimate passing of a parent or beloved family member.”
Marshall looked back on what she’s learned from her personal journey as a caregiver. “Actually anything can go wrong in life,” Marshall said. “We get into comfortable patterns and sometimes we think we can control more than we can. But after going through a crisis, and boiling down what’s most important, I came to terms knowing that I can only do today.”
Caregiving on many minds
Research has found that family caregivers of people with dementia experience more burden and are at greater risk of developing depression than caregivers of people with a chronic illness. Dementia symptoms include diminished reasoning, memory, social and language skills that can alter a person’s ability to function in daily life. Alzheimer’s disease is the most common form of advanced dementia.
Alzheimer’s is a chronic, progressive, fatal disease and caregiving at home for someone with the disease is fraught with challenges but also rewards.
Alzheimer’s associations encourage caregivers to reach out for assistance and take care of themselves. Because of the progressive, debilitating nature of the disease and the extended length of the caregiving process, multiple services are needed to provide comprehensive support and education to dementia caregivers.
Marshall said prior to her mom’s illness they did not have a close relationship, but dementia changed that.
“I cherished the last seven months I had with her,” Marshall recalled. “I got to know her as a person, not just a mom, and I grew to care for her more than ever.”
She often has an urge to call her mom today, but she added, “I just don’t have that number.”
Marshall hopes people will take simple but powerful messages from her book. “Remember to have humanity,” she said. “We need each other.”