Written by Amy Sunshine
It was July of 2017 when I stopped receiving emails from my father, which was somewhat unusual as we communicated in that manner somewhat frequently. I never thought anything of it until looking back. That summer we were with my family visiting my niece at her last year of camp. My dad came because it was special not just to Ella, but to my mom as well as she and her mother and sister all attended the same camp.
We were staying close to Denmark, Maine where she was in camp. On our return to the hotel late one day my dad asked what state we were in. I immediately felt sick to my stomach. My dad knew everything and didn’t miss a beat. He was the smartest person I had ever known. When I mentioned it to my siblings they brushed it off, but I could not. When I saw my mom back at the hotel alone in her room, I asked her if she had noticed anything strange about my dad. Her response was alarming as she mentioned noticing it also. We were leaving for home in a few days and my mom said she was going to make a doctor’s appointment for my dad to see if anything was going on. Perhaps a brain: tumor, which was the very worst thing that I could imagine. Looking back I should have noticed signs. Many years prior he had lost all sense of smell and the doctors said they couldn’t find anything and it was nothing. We joked about it for years. In retrospect, it was one of several signs we were overlooking. My dad started misplacing things and asking questions like, “who took my drink?” That too was something we would joke about but we still were missing the fact that he, who had never lost a thing, started missing checks and other things.
There was no brain tumor, thank god, as that was my biggest fear but we eventually were told that he had mild cognitive impairment which could last indefinitely and not get any worse. His scores would go up and they would go down but not in relation to the progression of the disease. We were scared and sad but according to the doctors, we had time. Immediately I began looking for sources that I could get in touch with for all my questions, and to speak to others who understood what I was dealing with. I contacted the Alzheimer’s Association Illinois Chapter and was put through on the phone to trained counselors who were fantastic and of great help. 24/7 there was someone there including trained volunteers who were also great sources of information. That year I decided to sign up for Walk to End Alzheimer’s which was when I became more involved with the organization and participated in other fundraising and awareness programs. By becoming more involved and learning more than I could on my own was of comfort, I was able to ask about home care services and other options. With more than 6 million+ people in the United States living with this disease at this time, the numbers are going to grow exponentially. Raising awareness and fundraising will help us get to the first survivor of Alzheimer’s. For those people who have not yet been affected in one form or another, it is devastating. On the patient, the loved ones who are usually the caregivers, and the 57% of employees having to go in late, leave early, or take time off. Over the course of days, months and years I watched my father rapidly deteriorate. I lost him over and over again. I’d like to think he knew who I was to the end. I promised I’d never leave him and I was with him for the final goodbye, in October of 2021.
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