Finding Unexpected Moments in Frontotemporal Dementia Caregiving

Frontotemporal Dementia (FTD, formerly known as Pick’s Disease) is less common than Alzheimer’s among the many forms of dementia. However like Alzheimer’s, FTD is untreatable, can be diagnosed as early as age 40 and is ultimately devastating to those living with the disease and those caring for a loved one.

Consider this...

His wife, Cindy, was an independent, well-respected high school math teacher and Rob felt secure in his position as a midlevel manager in the telecommunications industry. Their lives were full of good fortune, until Rob was willing to recognize the changes. He penned a letter to family and friends disclosing how their lives were changing and that he would be taking a work leave to care for Cindy. As Rob wrote, he struggled to find words to describe their new normal after an FTD diagnosis.

The chill from Lake Erie penetrated his coat, but the anxiety emanating from Cindy as they approached the building was sharper. Today was her annual mammogram appointment. In the waiting area Cindy paced back and forth, a common behavior now. Upon hearing her name, she bolted to the exit. Holding her hand, Rob redirected her, knowing she couldn’t go in alone.

“Should the opening be in the front?” he naively questioned as they navigated the gowning process. Amid the buzzing technology, bright fluorescent lights and a medical procedure so foreign to Rob, he asked for more strength than on an average day in her decline.

Standing at Cindy’s side, they faced the mammoth machine while the technician’s shoes squeaked back and forth across the tile floor. Being careful not to break their embrace, she slipped the x-ray shield over Rob’s body and wrapped the skirt around Cindy’s waist. As the machine revved up, Rob caught a glimpse of the terrified child trapped inside Cindy’s disease. They stood together as heavy compression applied to her breasts flattened them one-by-one for imaging. “You can breathe now Cindy,” the technician called out from the cover of her cubicle.

And they exhaled as one.

This was an unexpected moment between Rob and Cindy; a moment of connection you don’t often find as a loved one sinks into mid and then late-stage FTD. Rob was taking care of her and his care gave her strength. He should have felt that strength, too. Instead he admitted to only feeling lonely, powerless and trapped inside a despicable disease that was erasing his wife from their life together.

Rob’s story reminds us how important it is to speak out loud about caregiving experiences. Rob lost Cindy to FTD in 2010 after 24 years together. Some perspectives from his journey:

Don’t apologize for your loved one’s behavior.

It takes courage to engage in an unforgiving world when you’re living with brain disease or caring for a loved one. Consider the opportunity to educate others about the disease as Rob did in his letter to family and friends. The more we understand, the less we may fear.

Research the long-term financial implications of brain disease.

You’ll need help navigating the challenges of health care cost, insurance coverage, care facility expense and the basic affordability of it all. Don’t go it alone. Get insights from professional organizations (local Agencies on Aging or Alzheimer’s Associations), helping you avoid costly mistakes.

Find those who relate to your situation.

Family and friends may get trapped by their own fears, which can interfere with support to you and your loved one. Seek others who have walked your path without the emotional baggage family can sometimes carry.

Rob Lane is an empathetic FTD caregiving mentor. He’s willing to listen and share perspectives with caregivers facing a Frontotemporal Dementia journey with a loved one. For more information on FTD, visit  https://www.caregiver.org/frontotemporal-dementia

To learn more about Lisa Capp and her work with those living a care partner life, visit www.lisabcapp.com.