My father completed a neuropsychological exam in December 2020. The exam, which is typically 4-6 hours ended up having to be split up into 2 days because he was moving and speaking so slowly. When I heard that, I knew what we had all already known for some time - he had dementia.
Nearly 3 months later, my family and I were able to sit down and speak with the neuropsychologists who conducted the exam. The results were very detailed, precise and conclusive.
Both doctors were very kind and gentle as they slowly explained what they tested and why. They conducted many exams testing all areas of cognition and physical ability. No wonder the exam is so long and detailed.
What I very much appreciated from both these doctors is how they spoke and interacted with my father. This was more evidence that having a doctor who understands your Parkinson’s and how to operate with a patient that has speech ability is extremely important. Your run of the mill neurologist won’t cut it.
Before even discussing the results, my father spoke up, to the best of his ability, and stated he felt fine. As was typical of my father, he claimed he had no issues with memory, functioning ability or executive reasoning. The only issue was that he simply could not express himself.
Hard to face the truth
I know this shows he still has a hard time accepting his reality and I’d never want to rush him or force him to face the truth. I didn’t push him to let the doctors speak or stop him from interrupting. He had to say his piece to them and maybe to himself.
It is important to remember this exam is not to give a definitive diagnosis of dementia related to Parkinson’s but simply to ascertain the cognitive ability of the patient.
As such, the doctors cannot reveal what type of dementia he has or what stage of Parkinson’s this means my father has. They simply are here to test and relay the results.
Processing the test results
And the results are this - my father performed below 1 percentile in speed, problem solving, divided attention, and executive functioning.
At the moment, when I heard the results, I jumped into planning mode with questions and what this means for him and what medications could help make a change.
All questions these doctors had no answers for of course. What I didn’t do until much later that week was sit and process what I had known but wasn’t ready to hear out loud.
Who my dad used to be
This man, my strong and towering father, who moved across the world, built a life with and for his family. This man had the sharpest brains and the strongest work ethic of anyone I had ever known. No one had accomplished or conquered more than him. I had grown up seeing him in action.
All these thoughts about him and who he used to be were running through my mind. I couldn’t figure out why. Hadn’t I already known he had dementia? Did I really feel shocked at it being confirmed?
Sadness and a bit of relief
What was I waiting for? And I came to a conclusion. I was just sad. That’s it. There’s nothing deeper than that or more complicated or dramatic.
Adults can be simply sad. I was sad that of all the things that were going for him, it was his mind. I was sad that someone who set themselves and their family for success through their own vision could no longer trust their mind. I was sad that he was no longer in control of himself.
But there was also a sense of relief for me and my family. It was small and it was hidden under the sadness but it was there. We felt we weren’t crazy.
We felt we weren’t in limbo anymore. Now we could plan and move forward and understand what mental state we are dealing with when he is throwing a fit. It’s not really him. It’s his disease.
Have you ever tried journaling?