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Here We Go Again

June 3, 2014

By Mary Beth Wighton
Here We Go Again
By Mary Beth Wighton, Person with Dementia
January 31st, 2013

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 September 5th, 2012 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 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, Brianna and her friend 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 the black cloud descended on me. I began to repeatedly hit with my closed fist the passenger window. This went on for a while. Dawn tried to talk me down, but I kept doing it. I than began to try and kick the front window. At some point, Dawn stopped the car and I was moved to the back seat with Brianna and Shayla took my seat. My eradicate behaviour continued and even 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 serous 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 also was extremely worried about the previous night. I had put my family in serious 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 up on a website forum I had recently discovered: http://www.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 by 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; wear sun glasses; listen to Zen music, don’t travel if tired, and take a mild sedative. I shared this information with Dawn and we strategised on how to help me be a safer passenger. We certainly were not the only ones to have this battle, as many experienced the same issue.

It was for 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. I could feel the mood of the room change. She suggested to Dawn that if this happened again, that she should take me to the Emergency ward in the hospital to get evaluated by a psychiatrist. I could not believe she even said this out loud. Here we go again with the psychiatrists! I made a loud heavy
sigh.

When we had started the meeting, she admitted that she did not know a lot about FTD as it is so rare. I piped up that it was found in 2% of all dementia. Since my diagnosis in Sept 2012, Dawn and I have learned a lot about this disease. I can tell you a great deal about its symptoms, the different variants, including diagnosing myself as bvFTD (Behavioural frontotemporal lobe dementia) based on my symptoms. This was not something that this Doctor had done. Dawn and I tried to tell the doctor that eradicate behaviour such as I had displayed, was common in bvFTD. The doctor kept with her suggestion to go see a psychiatrist if it should happen again. She also said that she would need help from other resources and mentioned Baycrest hospital in Toronto. Dawn replied that she had already contacted the hospital and our family doctor had been emailed the documentation necessary for the referral. We had done our homework. ``Baycrest is the global leader in developing and providing innovations in aging and brain health.`` It has one of the few specialized programs, in the nation, to meet the individual needs of those with bvFTD. The program includes behaviour management techniques. Neurologist Dr. Tiffany Chow, a senior scientist at Baycrest, is considered to be one of the top specialists in behavioural frontotemporal lobe dementia. Thankfully, Dawn has started the process to be referred to Dr. Chow.

Dawn and I have already been down the long and winding road of working with psychiatrists to help in healing me. We will not go back to that road as it is not the correct road. We will stay focused in moving towards the resources we believe can and will help us. I realize 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. It is not that people are not trying to help, but rather that we do not agree with how they wish to help us. And that’s O.K.

When putting together my team whose job it is to help me with my journey, I must have people onboard whose strategy I agree with. It is my right as a patient to decline treatment. As long as I am able, I will continue to look for the very best experts in their fields. It is critical for my team to have synergy and listen to me. After all, I am the patient.

Copyright 2013 Mary Beth Wighton