Many people find writing to be a valuable way to process their experiences while caring for a family member or friend who has FTD. These books have been written to honor a loved one, or share personal perspectives of the impact of FTD.
By Joan Zlotnick
The author was a caregiver for 12 years to her husband, who suffered from FTD. She writes: “After his death three years ago, I found solace and healing through writing my book, which is about a recently widowed English professor (not unlike myself) who teaches a therapeutic writing course.”
Zlotnick’s work explores themes of caregiving, loss, grief, and the redefinition of the self after traumatic loss. Find a link to this Kindle e-book– as well as testimonials from readers– here.
The Dance: Our Journey Through Frontotemporal Degeneration
By Deborah G. Thelwell
The Dance is a memoir of a couple’s five-year journey through FTD. Deborah and Alan’s story, and how they handled this challenge together and with the help of their family and friends, is told with honesty, humor and love.
Dementia: The Journey Ahead
By Susan Kiser Scarff
Within a year of receiving her husband’s diagnosis, Susan Kiser Scarff had a classic case of caregiver burnout. She couldn’t concentrate at work. Friends drifted away. Overwhelmed, she struggled to make the transition from Red’s wife to his protector, nurse, and mother.
Purchase through: the book’s website.
Green Nails and Other Acts of Rebellion, Life After Loss
by Elaine Soloway
The author has previously published other works, and in Green Nails and Other Acts of Rebellion, Elaine Soloway provides a glimpse into the life of a wife who becomes a caregiver after her husband receives a diagnosis of FTD. With symptoms beginning about ten years after their marriage, Tommy’s diagnosis offered an explanation that changed the dynamic of the relationship. The story of husband Tommy’s progression and ultimate demise is one that manages to be uplifting while revealing the daily struggles of being caregiver and wife to someone with an incurable illness.
Strange Relation: A Memoir of Marriage, Dementia and Poetry
by Rachel Hadas
In 2004 Rachel Hadas’s husband, George Edwards, a composer and professor of music at Columbia University, was diagnosed with early-onset dementia at the age of sixty-one. Strange Relation is her account of “losing” George. Her narrative begins when George’s illness can no longer be ignored, and ends in 2008 soon after his move to a dementia facility (when, after thirty years of marriage, she finds herself no longer living with her husband). Within the cloudy confines of those difficult years, years when reading and writing were an essential part of what kept her going, she “tried to keep track… tried to tell the truth.”
Purchase at: Amazon.com
Dueling with Dementia: Not the Love Story We Planned
by Kate Fritz Leonard
Kate Fritz Leonard is a wife, mother, friend, educator and now caregiver, who was living a happily-ever-after life with her husband and children until dementia took over her husband’s brain and he became a stranger in their home. Kate writes about her family’s journey into the strange and scary world of dementia, and how she and her children, with much love and laughter, are coping and thriving together while dueling with their loved one’s dementia.
Purchase at: Amazon.com
An Evolution of Love: Life and Love with FTD
by Marie Sykes and Michelle Stafford
Bob Sykes passed away on April 7, 2006 from frontotemporal degeneration (FTD) at the age of 50. He struggled mightily with this illness and his wife and daughter struggled with him, gaining an even greater respect for this fine man, as he slowly succumbed to a progressive and irreversible form of dementia.
Purchase at: www.anevolutionoflove.com or Amazon.com
And Two Shall Become One
by Jim Cardosi
After the death of his wife Cindy in July 2008, Jim Cardosi wrote this book for his children to honor her memory. Written as a tribute their love and commitment to each other, Cardosi portrays the spirit of a woman fully devoted to her family and her faith. (A portion of the proceeds of sales of this book will be donated to AFTD).
Purchase at Amazon.com or www.allbookstores.com
Dementia: The Monster Within
by Herb van Roekel
This book shares story of one family’s battle through five generations of the Monster, along with the stories of others who have met the Monster. It provides a framework of essential steps necessary to prepare both caregiver and victim for the future. It also shows the types of dementia and some of the science involved to help give understanding. “While we dare not offer false hope, there is every reason to have hope …” for finding a cure.
Purchase at: Amazon.com
I Can’t Hear the Music Anymore: One Family’s Journey with Frontotemporal Dementia, 2nd edition
by Linda Anne Bentz Parsons
The author tells the story of her husband, Douglas Parsons, who has FTD. Short practical chapters tell of changes in independence, social interaction, reasoning and judgment, as well as caregiving issues. The book is written to give faith and hope that people are not alone in their journey with FTD.
To purchase send $10 check or money order to Linda A. Parsons, 222 Chicago Place NW, Canton, Ohio 44703 or email or at: email@example.com
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