The Founder's Story

 

My Story With Daddy

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Daddy! Daddy! Daddy!

My earliest memory in life begins with screaming these words. I was three years old when my Daddy rushed from our home in Brooklyn to his father’s side in Florida. My Grandpa was dying of pneumonia. Daddy didn’t make it in time, and he was inconsolable. His profound grief compromised his immune system, and he became gravely ill with pneumonia himself. My mom and I set out from New York City on a train bound for Florida. I do not really remember the train ride, but I remember like it was yesterday spotting my father on the train platform as we emerged from the train. I broke free from my mother and ran screaming into his arms – “Daddy, Daddy, Daddy!” And as I held onto him with all my might I sobbed into his ear, “Don’t leave me again, Daddy.” He promised he wouldn’t, and he kept that promise – until Alzheimer’s Disease took him from me in pieces.

Rocco Michael Passaretti was born August 16th, 1919 to Italian immigrants in Brooklyn, NY. Everyone loved my father. He was a gentle, funny, exuberant, joy–filled man who was always determined to make you smile when you encountered him. Daddy had the most amazing voice, and was always singing. He was a man of deep faith, and unconditional love for my mother and all of us. He was a war hero - from the 'Greatest Generation.' Alzheimer’s Disease transformed him completely. It made him dark. It took his smile. It silenced him.


It happened in stages.

Early symptoms were met with denial. Just too horrible to face, we tried to dismiss signs of Alzheimer’s by attributing them to the aging process. Daddy’s hearing had been damaged in World War II, so we would tell ourselves that disconnected comments were a result of his partial deafness. Subtle behavior changes gradually became more obvious, but those close to the afflicted tend to look every place else to rationalize these changes, and it was no different for us. But the terrible truth loomed too large to dismiss. Daddy became confused. He lost his words and then his confidence. Once gregarious and charismatic, my father was now the quiet one at gatherings. Friends, unable to handle Daddy’s metamorphosis, backed away. The isolation for my mother was devastating.

With each stage my mom would pray that it stopped there, saying...”I could handle this – this would be okay.” But it didn’t stop. It kept advancing. Even with treatment, Daddy’s abilities and personality faded. My dad was never short–tempered, but he became unable to cope with his precious grandchildren, so he could no longer be trusted with them. He became nocturnal, and of course my mom stopped sleeping too. He began to cling to routine tasks as if they were sign–posts of familiar territory. At meals he would look to my mom...Where does this go? What do I put this on? How is this eaten? He became childlike and emotional, crying as he spoke of those things he still remembered. He became angry.

But still mom’s devotion was steadfast. 24–7 she cared for my father. I had moved to Minnesota, and each day when I spoke to her she would tell me things were ok. But they weren’t ok. I learned from one of my sisters that Daddy had entered the most terrible of stages – catastrophic - uncontrollable rage and unpredictable violence. I flew to Florida and witnessed an unspeakable nightmare. My beautiful, gentle father was actually physically threatening my mother. The decline, I learned, is rapid from this stage. Potent drugs are needed to control violent tendencies. Your loved one is lost to you for good.

Long ago my parents had given me the power to handle their affairs if they were unable to. And so, here I was, faced with a decision that was unimaginable. My mom would never take the step I was about to take. With her own fragile health, she would have died trying to care for my dad in their home. I called the Veteran’s Hospital to send an ambulance to pick up my dad during one of his rages. We could not reason with him nor restrain him, and I wanted to get my mom and him out of harm’s way. But the hospital said they do not dispatch ambulances for situations like this. Situations like THiS require Baker–Acting, and that is a call to 911, whereupon a squad car is dispatched and armed police officers escort your loved one from the home. My Daddy was taken away, and he never lived in his home again. The darkest day of my life.


What can be done?

My dad was taken to the psychiatric ward at the Veteran’s Hospital. Clearly not the place for him. We needed to place him in an Alzheimer’s assisted living facility, but it was difficult to find one that would take a patient in the catastrophic stage of Alzheimer’s. We finally found one that would take him and KEEP him (as long as he remained catatonic), and there he lived - and died two years later, as my mother and I held him. It was about 12 years from the first signs of the disease. We took this journey without a road–map. We needed guidance. We needed support. We needed hope.

Grief is paralizing. I needed to do something proactive so I didn't feel so helpless and useless and guilt-ridden. I needed to do what I could do - for my father - for his legacy - in his memory. So my husband, Pat Surface, and I began the Spiritwood ‘Forget Me Not’ Foundation. We wanted to form an organization with a clear mission, a vision for help in the trenches where the afflicted and their families are fighting.

We all need home, family, and friends. Throughout our lives, these three elements give us the greatest comfort and fulfillment. Life is full of changes, but somehow being surrounded by family and friends, in a home–like environment, makes everything feel right. The Foundation is dedicated to supporting organizations that enhance the quality of life of seniors. and address the many concerns and worries of senior living through affordable healthcare services that focus on the dignity of each individual, and their need for personal and spiritual growth.

There was a time when a big family meant love, fellowship, and a genuine sense of belonging. That hasn’t changed. We need to keep that same caring spirit alive and well. Our family learned some very painful lessons as we attempted to navigate the course of this disease. We have so much to share with you, and a great deal to accomplish. Until there is a cure, this disease will take down millions of us. We will need: more compassionate assisted living facilities that can accommodate all stages of Alzheimer’s, affordable in-home assistance and short-term respite for care-givers, heightened public awareness and compassion, and law-enforcement agencies that are educated in how to deal with the complex issues of Alzheimer’s Disease.

And, we must honor and remember our elders...their histories, their love.

I will never forget my Daddy.