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.
My wife Cindy was an independent, well-respected high school math teacher and I felt secure in my position as a midlevel manager in the telecommunications industry. Our lives were full of good fortune until I was willing to recognize the changes. I penned a letter to our family and friends disclosing how our lives were changing and that I would be taking a work leave to care for Cindy. As I wrote, I struggled to find words to describe our new normal after an FTD diagnosis.
The chill from Lake Erie penetrated my coat, but the anxiety emanating from Cindy as we 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 I redirected her, knowing she couldn’t go in alone.
“Should the opening be in the front?” I naively questioned as Cindy and I navigated the gowning process. Amid the buzzing technology, bright fluorescent lights and a medical procedure so foreign to me, I asked for more strength than on an average day in her decline.
Standing at Cindy’s side, we faced the mammoth machine while our technician’s shoes squeaked back and forth across the tile floor. Being careful not to break our embrace, she slipped the x-ray shield over my body and wrapped the skirt around Cindy’s waist. As the machine revved up, I caught a glimpse of the terrified child trapped inside Cindy’s disease. We 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 we exhaled as one.
This was an unexpected moment with Cindy; a moment of connection you don’t often find as a loved one sinks into mid and then late-stage FTD. I was taking care of her and my care gave her strength. I should have felt that strength, too. Instead I felt lonely, powerless and trapped inside a despicable disease that was erasing my wife from our 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. He offers the following perspectives to caregivers:
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 helpful insights from professional organizations (local Agencies on Aging or Alzheimer’s Associations). You can avoid making costly mistakes.
Find those who relate to your situation. Family and friends can 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: