When I was a boy, about seven from my recollection, a profound memory was formed. A memory I recall to this day, almost prophetic it feels sometimes. I was visiting my grandparents at their apartment with my dad, they lived close to us so we saw them often. My granddad was a fine dressed gentleman from what I recall, a suit and tie was his typical attire. A very neat and well groomed man that took care of his clothes. His jackets were always hung neatly in the hall closet in plain sight of my grandparents living room. On this one dramatic occasion I witnessed my granddad wondering around the living room near the hallway closet looking for a place to hang this jacket. He looked lost and said “where do I hang my jacket?” My nana said to him, “Frank, you’re standing right in from of the closet. Open it and hang your jacket there.” I was confused by this exchange. I looked to my nana, she said to me, “he gets confused sometimes.” Granddad passed at the age of 79 from complications of Alzheimer’s disease. As with many, he spent his last days in an assisted living facility for my nana’s safety due the changes he was going through with agitation and hostility.
“How could my granddad not know where to hang his jacket?” Now 46 six years later, how could my father forget how to play solitaire, a game he played his entire life. How could he stop in mid-sentence and forget what he was speaking about? How could he go from a social active person to one that barely speaks in a group? These questions are answered by the effects of Alzheimer’s as it ravages the neurons in our brains.
I spend a lot of time with dad, that is such a blessing. He and his wife, my mother, live with us in an apartment that was converted from our two car garage. We did this when I was still working full time as we prepared for them to live out their golden days. I sit with dad and we sort playing cards, by suit and number. We use connect the dots books, the ones with numbers and letters. We go for short walks, but that is becoming progressively difficult for him. I do this for dad because I’m trying to help him remain as physical and cognitive as possible given his progression and stage.
Many times as I watch and help dad I can’t help imagining myself looking into a mirror and seeing him in my reflection, It’s a surreal feeling. I see him now at the age of 87 and likely in a few years me before I’m 60. This is the brutality of younger onset Alzheimer’s and is it more pervasive than most people are aware. The Alzheimer’s Association facts and figures has the prevalence of younger onset at approximately 200,000 under the age of 65. This number is an educated guess without medicare statistics. I can tell you with some certainty this reported number is very low. I communicate with dozens of people in my small New Jersey community with younger onset Alzheimer’s.
Granddad was born in 1891, 15 years later in 1906 Dr. Alois Alzheimer, the renowned psychiatrist and neuropathologist published his finding on younger onset dementia. The first case of Alzheimer’s disease Dr. Alzheimer’s studied was on Auguste Deter, a 51-year-old patient. Alzheimer’s disease is not and never has been a disease that afflicted solely those of us in our golden years. This is one of the great false narratives of the disease.
I often think, “here I am, living with Alzheimer’s and caring for my dad that has Alzheimer’s.” I see the man that has molded my life as I’ve grown into the man I am today. A man I now share a progressive and terminal brain disease. A disease we both share with his dad and my grandfather.
My family, as far as we know, has lived with Alzheimer’s for three generations now. This is why we are fighting so hard and so visibly against this disease by supporting the Alzheimer’s Association, the greatest private provider of research and support for those of us living with the disease and our caregivers.
My hope and pray is that we will find a cure soon, but we need more NIH federal funding and people to support the Alzheimer’s Association by any means possible. One way is to support the Walk to End Alzheimer’s events this fall.
I ask you to please goto my walk page and make a donation to my team. Any amount will be appreciated. Any amount will be your way of saying I helped to eradicate a disease that is a public health issue, a terminal disease that takes more lives than breast and prostate cancer combined, a terminal disease we need to terminate.