ALL WRITTEN AND ARTWORK ARE THE INTELLECTUAL PROPERTY OF PSG LOPES. ALL RIGHTS RESERVED, 2019.
I had an enlightening morning today. My father worked in an area known as the Ironbound section of Newark for nearly forty years. Shortly after he retired, my family and I realized that he was going through something because he began behaving erratically and drove our family crazy for months before we figured out his catastrophic diagnosis. Upon revealing his diagnosis of dementia, our family was devastated but we weren’t exactly familiar with the disease. We were unsure of its progression, we were uncertain of his prognosis; we were basically left in the dark. With each passing month, we become more knowledgeable and educated ourselves on his illness. A lot of what we learned was from witnessing it first hand. There really was no appropriate preparation for what was to come.
Before my father was diagnosed with dementia, my family was pretty much estranged from him. Even though we all lived in the same house as him, my father was a private man and preferred to live his life separately from everyone else. Because dementia is all-consuming and requires round the clock care, this introduced us to a whole other side of my father we never really knew. I realized that I never really fully knew this man I called my father. Not because I did not want to, mind you, but because as I said he wanted it that way. He had his job in the Ironbound, his clubs and organizations that he was a part of, he had his writing and art that he would pursue on evenings and weekends. He would travel and drive around areas alone and we were none the wiser. Since his illness, we became so intimately familiar with our father that it was as if we entered a rabbit hole, an endless fountain of knowledge and information about him, some unsavory, but for the most part, we learned of some things he was interested in that we never knew about.
Today I met with an amazing woman who is well-respected and revered at the Luso-Americano newspaper and discussed my children’s book which I wrote in his honor: My Pápá and Me: A Children’s Book About Our Journey With Dementia. It was so nice speaking to someone who knew my father well. I could almost feel his presence in that building. My father, once notoriously known for how well-dressed he always was, proud and confident in himself walking into the newspaper building and talking away with all of these fine people. It was so comforting to know that he was well remembered. A big motivator for me writing my latest children’s book was to ensure that nobody forgot about my father. He was so important for so many years in the Ironbound community and then he disappeared into the ether and not many people knew about what happened to him. Many abandoned him, some called about him in the beginning but then very quickly it was as if my father ceased to exist. That didn’t sit well with me. As complicated as our relationship was towards the end of his healthy years, I would never want his legacy to fade. My children’s book was essentially my way of coping with this devastating situation my family and I have been dealing with for the past six to seven years. It has been a long, torturous, and highly emotional road for us all. Our goal and mission are to make damn well sure that my family receives the best possible care for him and that he is remembered for his positive contributions to society. I may not have known this side of him well but it was clear from my interview today that he was respected and that provided me with reassurance.
I know that I will continue advocating for others going through similar circumstances. This disease is tragic and heartbreaking. So many times I sit and think about telling my father about all of my accomplishments in writing and I wonder what he would have thought about it. I try not to romanticize his reactions too much because prior to his illness our relationship wasn’t the strongest. But I’ve gotten to know this version of my father and I can honestly say he is lovely and sweet and we currently have the best relationship that we have had since I was a little girl. I have actually read my children’s book to him and he gave me a thumbs up and told me in Portuguese that it was good. I thought his reaction was sweet and heartwarming. This was not exactly the same as if I were to have shown my dad prior to his illness but I accept that. Our family loves him and are fiercely protective of him. I will continue watching out for him and I will continue to fight to ensure that each day he is met with the dignity and respect he deserves. His legacy will persevere. I will make sure of that.
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