Feelings of grief and loss are common throughout the progression of FTD, from diagnosis to disease progression to life after a person diagnosed has died. A new AFTD resource, Walking with Grief: Loss and the FTD Journey, offers first-hand accounts, information and strategies to deal with the grief that is so frequently a part of the lives of all who are touched by this disease.

In assembling the 48-page booklet, AFTD Support Services Manager Bridget Moran-McCabe, MPH, drew from the best resource available: firsthand accounts and perspectives from people on their own FTD journeys. We are grateful to all who shared their stories and expertise with us.

“For many individuals and families facing FTD, the disease is so all-consuming that they lack time to tend to their own grief,” Moran-McCabe said. “Grief is intensely personal; it’s different for everyone, yet it’s something all need to find time to honor, particularly given the unique type of loss presented by FTD.” Walking with Grief helps people on their own journey to honor their grief through the stories of others who went through similar experiences.

Long-time AFTD volunteer and former FTD care partner Elaine Rose contributed much of the writing for the booklet, a process that she says helped her to cope with the death of her husband, who had FTD.

“Grief is never an easy concept, but the long goodbye of FTD is especially difficult,” Rose said. “It can be such a solitary journey, so we’ve tried here to give guidance and a road map to staying whole throughout the process.”

This resource shares information about the type of loss most common for those affected by FTD: “ambiguous loss,” or loss that occurs when a person diagnosed is physically present, but mentally or emotionally absent. It expands upon the concept of “anticipatory grief,” or feelings of loss and dread that family members experience when they imagine life upon the death of a loved one. It also includes poetry by Rachel Hadas and Lori Ruhlman.

Regardless of where you are in the journey, Walking with Grief is intended to help open the door to conversations between family and friends, through online support forums, and in support groups, and to help all those grieving to know they are not alone.

Walking with Grief is available in digital form here.