Mary Beth Wighton was diagnosed with frontotemporal lobe dementia at 45 years old. Today, more than six years later, she is a vocal advocate for inclusivity for people living with dementia. Here, in an excerpt from her upcoming book Dignity + Dementia: Carpe Diem, Wighton shares when she was first diagnosed during a doctor’s appointment with her partner, Dawn.

Sept. 5, 2012, St. Mary’s Hospital, Kitchener, Ont.

As I drove us to the 9 a.m. meeting with the geriatrician, many thoughts ran through my head. 

“Here we go, another appointment with another doctor,”
I thought. “One more stupid test. I hate when they ask me to write down the clock time because I know what time it is.” And, “I’m looking forward to my Timmy’s coffee.”

Dawn and I arrived at the hospital, grabbed a coffee and headed to the waiting room. I asked myself, “How can I only be 45 years old and be sitting here?” It really bothered me that, after years of battling serious depression, memory loss and behavioural changes, no one had provided me with a sound medical diagnosis. That was all about to change. 

Nurse Julie began the mini-mental state examination (MMSE). Sure enough, there were the questions about time. I muttered to her that I don’t have a problem with time. We continued. Finally, the last 30 questions lay in front of me. My mind was tired, and it had become hard to stay focused. I didn’t have the brain power to answer any more questions. Finally, we were finished. After asking Dawn and me a few more questions about my health, she disappeared to tally the results. 

Soon, the door opened, and nurse Julie appeared with the doctor. Everyone sat down. The doctor immediately started to discuss the results of the MMSE. Six months ago, I had taken the same test and scored 24. Today, my score was 18 — an obvious, significant decrease. 

I’m not sure of all the things she discussed, but I do remember this: “You have Frontotemporal Lobe Dementia, or FTD.” 

“Whoa,” I thought, “no one has ever used those words before. I knew I was cognitively impaired, but what was this FTD thing?”

 The doctor went on to explain more about FTD, including that my amount of education will help. More blurred talk. 

“FTD is a rare form of dementia and is incurable,” the doctor said.

Dawn and I looked at each other. Could this really be happening? More blurred talk. 

“You will not be able to drive anymore, effective immediately.”

“What?” I thought. “Okay. This is now serious.”

More blurred talk. 

I stopped hearing the rest of the conversation. The only thing I could hear in my head was, “You can’t drive. You don’t have a driver’s licence!” 

I started to see red. I flew out of my chair and threw some papers in the garbage. I stormed out of the office, trying my best to slam the door shut. I tried a few times. 

I continued to the hospital hall and stopped. I began to pace up and down, mumbling to myself. “How could this be? How can I have dementia? How can my licence be removed? How can I have dementia?” 

My cellphone rang, and it was Dawn asking where I was, if I was okay, and for me to come back. “No!” I said. “I’m not coming back into the room because I don’t want to hear any more.”

I continued to pace. 

Eventually, Dawn came out of the examination room and approached me in the hall. We said nothing and I handed my car keys to her. We headed out towards the car. Dawn proceeded to take my usual seat at the wheel, and I took her usual seat as a passenger. FTD had changed our lives forever. [ ]