My grandmother (left) and her sister in the kitchen on Christmas Eve in 1984.

My Connection, My Cause: Jared Paventi on why he is in the fight against Alzheimer’s

Jared Paventi is Chief Communications Officer for the Alzheimer’s Association, Central New York Chapter and has been on the organization’s staff since 2003. Here, he writes about why he fights Alzheimer’s as a part of our “My Connection, My Cause” series.

Like many of my colleagues, Alzheimer’s disease impacted me long before I ever joined the staff of the Alzheimer’s Association. As I write this, at age 41, I don’t remember my grandmother not having Alzheimer’s.

It all started innocently enough. We would be at my Aunt Carolyn’s house and she would call me by a whole series of names before getting to mine. It was a veritable roll call of all the males in the family, “GuyMichaelPaulGreg…Jared,” usually followed by a laugh from everyone at the table. It was the 1980s, I was 9 or 10 and no one ever talked about Alzheimer’s.

My grandmother (left) and her sister at the table during a family gathering at my house.

Still, there were my grandmother and her sister, tossing smelt in flour and corn meal and before frying them. My family observed the Italian tradition of eating fish on Christmas eve. About an hour or two before dinner was to actually be served, they would be stationed at the kitchen table behind a deep fryer. In between batches, the family would talk, my older cousins would torment me and I would pester my younger sister.

But, when the basket of golden brown fish emerged from the fryer, everything stopped as we waited for the moment that my grandmother deemed them cool enough to eat. And in the blink of an eye, the little smelt would be devoured and the whole process would start over again. Eventually, the task of frying fished passed to my father. Alzheimer’s took a severe toll, robbing her of her memory and her ability to communicate. Eventually, it stole her from the holidays, when she became wheelchair bound and bringing her from the nursing home to my aunt’s house for Thanksgiving and Christmas was physically impossible.

We visited the nursing home weekly. When we first started going, she would yell at my mother and father about her having to get to work at Learbury’s, the Syracuse clothing maker where she was a seamstress decades before. It did not take long for our conversations to become less conversational, as the disease rendered her nonverbal.

My grandmother (right) after arriving at a surprise party for her 80th birthday in 1986.

Alzheimer’s finished the job it started when it took my grandmother in 1999. It was nearly four years after her death that I started with the Chapter. Over the past 15 years, I have seen the conversation about Alzheimer’s go from a whisper to a shout. We’ve seen unprecedented investment from state and federal government in care and research, and our programs and services department is reaching more people than ever before.

But, we know it’s not enough.

We won’t rest until every family facing Alzheimer’s disease or other dementia in this area has been served. And, our cause will not settle for anything less than a treatment, prevention or cure for Alzheimer’s disease.

Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. While it’s the mission that fuels my fire, that blaze was ultimately started by the woman that used to fry the salty little fish each holiday…my grandmother.