Dicing with Dementia…My Personal Story

Was it scary?…absolutely!

It has indeed been a rollercoaster ride across the last few months and I now have an empathy for people with dementia like no other. When I first fell and went to the Emergency Department at the hospital I felt vulnerable as doctors and nurses (10+) worked on me and stripped me of all my clothes so they could attach a cannula, wires, sensors and patches to my body. If I really had dementia this experience would be frightening and I could possibly trigger a ‘code black’(restraint by a security team) as no-one likes being near naked in front of a crowd. I was asked so many questions to determine my lucidity it gave me a headache. I tried so hard not to get an answer wrong. “What day is it?” “What month are we in?” “Where are you”? “Who is the prime minister?” …..This Q&A was really challenging.

I spent 12 hours waiting for a CT scan on my brain. This gave me the opportunity to hear the noises and clutter of the ED. There was constant background noise and nothing is private. I waited patiently, completely bored under the same bright white flouro light so there was no chance of getting any sleep. The staff were busy and nature was calling, I thought to myself “had they forgotten me?” Several hours later I gained someone’s attention and they fetched me a bottle….charming.

The ED is certainly not the place for someone with dementia. You are transported to a foreign place where dignity is well down the priority list. The staff are doing their best but if I really had dementia I may have walked out to get away from the noise as I looked for something familiar to me. I could hear so many people talking about their most intimate medical problems behind thin fabric curtains. I could do nothing else but just listen.

My symptoms have been ever-changing as I battle the concussion. I have had massive ‘brain fog’ where the simplest of decisions became extremely difficult. My words came out wrong and usually slurred. Others may have thought I was drunk!. I could no longer complete basic tasks and I would lose hours at a time as I blankly stared into space. I was unable to work and I was completing my breakfast at 11am each day as that is how long it took.

I had become isolated and lonely as I was embarrassed with my condition and had to ask strangers for help with basic chores. I was completely vulnerable when I went to the bank and I had to ask the teller to help me sort out my finances…lucky they could be trusted. I became lost in Sydney airport and was unable to use the baggage label machines. I asked for assistance from customer service and I felt they didn’t believe me at first because I looked perfectly normal, my brain was simply not functioning. My plane was delayed and I could not find any clocks to tell the time (my watch recently broke), I wanted to fill my water bottle but there were no water fountains to be seen. I even had to ask two strangers to kindly make sure that I got on my flight as I no longer trusted myself. These caring ladies were fantastic and sought me out when I arrived in Adelaide and helped me find my baggage at the carousel. I was eternally grateful.

I have been diagnosed with Concussion with ongoing symptoms. Wow! This is something I never imagined would happen to someone like me. Thank goodness it is temporary and I will be able to return to my normal happy self. It may take up to 6 months or even a year but it will happen. I never would have imagined I would publicly share my own personal story but I feel this is really important to help others who may be coping with similar situations. I put my Dad’s story out in the public domain so it is only fair that I put my own out there as well. It is therapeutic to ‘tell my truth’ and help break down the stigma in our community. The big question is will the fact I have had a brain injury make me more likely to get dementia?…probably.

I have been to endless doctor appointments, I enrolled myself in a 6 week free course with ‘New Access’ which is fantastic. The stigma of receiving help for a brain injury is massive, but I was determined to get better as quickly as possible, no matter what others may have thought. I was also offered some help from a brain injury rehab centre when I left the hospital. They call me every few weeks and I fill out surveys to determine how many symptoms I have encountered (which is nearly all of them). I went away for a week to a retreat in the Hunter Valley(NSW) to spend time healing and getting back to nature. This time alone was challenging but it was also transformational. I learnt the art of breathing and meditation plus had a try at yoga, pilates, kung fu, kinesiology, plus so much more. I tried a vegetarian diet and was technology free for an entire week. The silence was golden!

Other symptoms I have encountered that are so similar to dementia are dizziness, blurred vision, feeling faint, emotional outbursts, crying for no reason, plus panic attacks at strange times. I am a balanced and well-adjusted person, but the brain is a powerful thing and it now feels like I am living with only 15-20% brain function. This makes you worry more as you forget so many things. It also forces me to write a list of tasks each day that I need to complete. I still look the same and move the same, but processing information is the bit that people don’t understand. I was forced to explain my condition to just about everybody I encountered so they could slow things down enough for me to take their words in.

Having dementia takes away your independence and you slowly ‘lose yourself’. My very similar experience has allowed me to feel what it is like to have dementia and be forced to rely on others to help me do what I would normally do myself. I now understand more about dignity, and the very important role of a carer. I never thought I would be the person receiving care, but I will be a better person for the experience and be able to create more positive culture change because of it.

*note – Check out my eyes on the pic above. ED pic is generic and is not me on the table.