About five years ago, my father, an octogenarian PhD and a thinker, a teacher — one who adored complex abstract debates–began to cognitively decline. It began with him forgetting words, or not being able to remember certain details (okay, he was always of a scatterbrain, reifying the absent-minded intellectual stereotype). He complained that ‘szavak kiesnek’ (literally, that words just fell out). Despite being a staunch Catholic, he was an ardent supporter of science. So he went to the doctor, who sent him to more doctors, who sent him for tests. He prayed that the science would give him at least an answer to what was going on with him. His prayers gave him strength while the science gave him a comfort.
After countless exams and tests taken in contraptions that would not be out of place in a Mediaeval-set horror film, they figured out what he had: Primary Age Related Tauopathy. A newly created designation, it is a cognitive decline that characterises a cognitive impairment that results in neurofibrillary tangles, but without the amyloid plaques. Pretty much, it presents itself as Alzheimer’s but without the component that makes Alzheimer’s that particular disease.
Because it is new, there isn’t much literature that isn’t medical, and it’s difficult to predict what Apa will go through and what to expect. By combing through various dementia-related, my Mum and I are trying to figure out how to make him feel safe, secure, and all the while learning about this illness and how it’s changing him.
But the truth is, Apa is declining. His reality is changing day-by-day. He isn’t regressing as it is with many Alzheimer patients. He isn’t repeating the same memory over and over. He is just simply struggling to hold onto who he is as he is spiralling into the unknown.
This is part of his journey.