Mary Beth Wighton was diagnosed with frontotemporal lobe dementia in 2012 when she was 45 years old. Today, she is a vocal advocate for inclusivity for people living with dementia. In an excerpt from her upcoming book, Dignity + Dementia: Carpe Diem, Wighton shares how she has navigated unexpected symptoms and worked to create a supportive care team.

Some days are easier than other days. Today has not been easy. I had an appointment with my geriatrician this morning. The last time I saw her was when she diagnosed me with frontotemporal lobe dementia (FTD). I walked out of that appointment before it was finished. I did the same thing today.

When the appointment started, the doctor told [my partner] Dawn and I that we were there on the request of my family doctor. He was concerned about my aggressive behaviour.

About one week ago, we had a scary episode while in the car. While travelling in the evening back from Dawn’s folks’ place, which is about an hour drive, something snapped inside me. There were four of us in the car. Dawn was driving, our friends Brianna and Shayla were in the back, and I was in the passenger seat. I knew something was going wrong and I told Dawn to get us home quickly.

No sooner had I said that, then a black cloud descended on me. I began to repeatedly hit the passenger window with my closed fist. This went on for a while. Dawn tried to talk me down, but I kept doing it. I then began to try and kick the front window. At some point, Dawn stopped the car and I was moved into the back seat with Brianna and Shayla took the passenger seat. My erratic behaviour escalated as I also started to yell obscenities out of the window.

I don’t remember all of what happened but was told of my actions the next day. It lasted for about an hour. We were extremely lucky that I did not cause a serious accident. Everyone was very shaken up by the incident. Bruising on my knuckles and hand had already begun.

I laid on the couch the entire next day. Not only was I feeling very tired, but I was also extremely worried about the previous night. I had put my family in danger. This weighed heavily on me. I decided that I needed to find out if this was common for people diagnosed with FTD. I went on a website forum I had recently discovered: ftdsupportforum.com.

This site is for people with FTD and their care givers. I began to search the entries to learn if others had experienced this before. Much to my relief and dismay, I found many entries about challenging behaviours of an FTD car passenger.

From what I could gather, a car ride can overstimulate someone with FTD. There were many suggestions from both parties on how to try and get around this stimulation. Some ideas were: move to the back seat, use ear plugs, don’t have a radio on, put up a window shade, etc. I shared this information with Dawn, and we strategized on how to help me be a safer passenger. 

It was because of this incident, and some others, that I found myself sitting in front of the geriatrician. She told us she was very concerned about this behaviour. She also found it odd that I could share with her some of the strategies I found on the web. She thought that was unusual for someone with dementia. She suggested to Dawn that, if this happened again, she should take me to the emergency ward in the hospital to get evaluated by a psychiatrist.

Dawn and I tried to tell the doctor that the erratic behaviour I had displayed was common in FTD. The doctor continued with her suggestion to go see a psychiatrist if it should happen again. 

Dawn and I have already been down the long and winding road of working with psychiatrists to help in healing me and it is not the correct road. We will stay focused on moving towards the resources we believe can and will help us.

I realized today how incredibly important it is to not only be well-educated about FTD, but to also push back on individuals who we believe are not taking us on the right course of action.

When putting together a team to help me on my journey, I must have people onboard whose strategy I agree with. It is critical for my team to have synergy and listen to me. [ ]