Karin and Rudy Fuehrer, a married couple of 38 years, shared their story of managing the “anticipatory grief” associated with FTD in a December 24 article and radio segment on WSKG, the National Public Radio affiliate in Binghamton, New York.

Anticipatory grief, a phenomenon common in FTD, refers to the “feelings of loss and dread that family members experience when imaging what life will be like after a loved one dies,” according to AFTD’s Walking with Grief: Loss and the FTD Journey.

“Whatever I did, she did. What she did, I did, whatever task or chore,” Rudy Fuehrer told WSKG. “Now she doesn’t initiate anything. Doesn’t really have a high interest in those sorts of things … That’s the hardship, to watch the whole situation deteriorate, because I know what kind of person she is.

“I know who she is, I know how she is, but she’s not the same,” he continued. “She’s still my wife, and I still love her dearly, but she’s not the same.”

“Grief isn’t just related to death or the loss of a loved one,” Kristen Campbell, Director of Programs and Services at the Alzheimer’s Association of Central New York, told WSKG. “It can be loss of independence, loss of a connection, loss of a relationship.”

To acknowledge and name that grief, Campbell explained, can be a challenge but is sometimes the “first and hardest step” in coping with it.

AFTD’s Walking with Grief, published in 2020, provides first-hand accounts, information, and strategies in dealing with the grief that is frequently a part of the lives of people and families affected by FTD. The booklet, which is downloadable in PDF form, explores and expands upon the concept of anticipatory grief.

Additional AFTD resources for managing and coping with grief also include the 2020 AFTD Educational Webinar, “Living the Grief of FTD: The Winding Paths of Loss, Love, and Resilience,” presented by Mara O’Hara, LCSW.

Click here to read or listen to the Fuehrers’ story at the WSKG website.