Kathe Goodwin has a compelling story to share about facing dementia. Her new book, “Love Remembers: Holding on to Hope and Faith in the Face of Early-Onset Alzheimer’s,” shares much of her personal story in this one-of-a-kind narrative. Goodwin – a lifelong Fort Worth resident – is signing her book and visiting with guests at the James L. West Center for Dementia Care, 1111 Summit Avenue, on Tuesday, June 21, from 10 a.m. to 3 p.m. in recognition of Alzheimer’s and Brain Awareness Month.
Not coincidentally, June 21, the summer solstice, is also the longest day of the year – a poignant parallel to walk as a child of parents who lived with dementia in their later years and the wife of a prominent attorney diagnosed with early-onset Alzheimer’s. According to the Alzheimer’s Association’s 2022 Facts and Figures, 6 million Americans are living with Alzheimer’s disease; the disease is the sixth leading cause of death with no known cure. Today, more than 11 million unpaid caregivers provide care for someone living with dementia.
Inspiration for the book came partially from Goodwin’s longtime engagement with the James L. West Center for Dementia Care in Fort Worth. A nonprofit organization, the West Center goes far beyond providing patient care to deliver care and education for family caregivers, the community at large, and the professional health care community.
The West Center’s services and supports have been instrumental in helping Goodwin manage each step of the disease process. Launched in 2011 through a grant from the Sid W. Richardson Foundation, the West Center’s Caregiver Education Program has touched more than 50,000 people worldwide through its education programs, Dementia Live virtual experience, weekly support groups, and customized professional health care training.
“Kathe’s book is like talking to a family member about each bend of the journey from diagnosis to the final stages of the disease. Based on her vivid memories, personal journal entries, and the recollections of their two children, the book is an honest and loving testimony,” said Cathy Neece Brown, Vice President of Mission Support.
Pillars upon which she found strength include:
- Alzheimer’s is a merciless thief, but it can’t steal love.
- Dementia is a terrifying disease, snatching away memory and independence from those close to our hearts, yet faith, hope, and joy do not have to fall victim to it.
- Love the patient; hate the disease: Recognize that your loved one has no control over how the disease is ravaging his or her mind and cherish your best moments together.
Although each person’s experience with the disease is unique, there are helpful facts to keep in mind. Goodwin writes from the heart to share the following important points:
- When one person has dementia, there are at least two patients – the one afflicted with dementia, plus the caregiver(s) now living with the disease as well. Seek support from family and friends and accept their offers of assistance. Engage additional help if needed.
- Knowledge is power. Take advantage of educational opportunities, support groups, and books on dementia. Enlist the advice of financial, legal, and medical professionals.
- Recognize when it’s the right time to place your loved one in a memory care community, such as when their needs exceed your ability to meet them, when caregiving is severely impacting your emotional or physical health, or when your loved one becomes a danger to themself or others.
- You are fortunate whenever someone at your loved one’s care center takes a personal interest in your case and shepherds you through the process that your family member is experiencing.
- The best caregivers interact positively with dementia sufferers, repeatedly helping them experience joy through the “four magic distractions” – music, sweets, children, and animals – and by creating and enjoying visual reminders of family and favorite memories. Whenever possible, try to mentally “enter” your loved one’s world. Remember the patient’s brain is changing in ways you may not understand.
- Attempt to focus on what the patient can do, rather than on what is lost.
“As a first-time author, I was hesitant to share our family’s very personal story, but my heart and soul told me that every dementia caregiver in the world deserves the opportunity to hear firsthand what it means to be a care partner and a loving, imperfect caregiver. I certainly made my share of mistakes . . . and then some. There are so many things I know now that I wish I had known years ago. Today, my prayer is that our story may help others on this incredibly difficult journey,” said Goodwin.
She has already received numerous notes of appreciation from those providing care for their own loved ones as they have come to realize her timeless truths and encouragement on how to live with someone facing the constant challenges of dementia.
A portion of book sales at the James L. West Center on June 21 will be donated to the Alzheimer’s Association. “Love Remembers” is also available on Amazon and other online booksellers.