After the Cognitive Assessment we were invited to come in for a meeting with an associate of the neuropsychologist that ordered the testing. My siblings and one of my dad's brothers attended the meeting.
I have to say this doctor or social worker, or whoever he was, may have been the most helpful and informative person we had worked with along the way. He was the one who originally called asking about the alcohol after the cognitive testing. But I talked to him several times after and he seemed very sure that they would have a real diagnosis for us and he would explain it to us in person.
On this day I was nervous, apprehensive, but excited we were actually going to learn something. I had no idea what he was going to tell us, and even after the appointment I didn't fully understand it. I didn't understand what it meant yet, or what it could mean for me and my siblings, along with my own children. I sometimes wish I could unlearn what I know now, or that we were still naïve to it all. I still remember asking a little about the genetics behind it and being warned to NOT google search this! Of course I didn't listen. But yes, the information out there truly is terrifying.
He told us they would order an MRI and a PET scan to look for changes in the brain to confirm their diagnosis, but they were already certain FTD was the answer.
Getting the diagnosis as quick as we did was the best thing for my dad. And it helped us begin to unravel it all and get our plan in place for him. As I think back to how things were back then, things seem so "easy" now. He's where he needs to be and is being cared for. And he is happy.
I have no idea how he made it on his own as long as he did. It was a long road to get him diagnosed and in a safe place. Unfortunately now that the burden and the craziness has been relieved and we can enjoy our visits with him, I still have the sinking feeling of how much longer do we have and how quickly is this going to change?
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