Thank you for this honor and for allowing me to share my story. I am the daughter of fallen victim of Alzheimer’s. My father, Kenneth David Smalling, was many people. He was a United States Marine Corp Sergeant who fought in Vietnam. He was Davey, a comedian of a son/brother/friend. He was Honey, the husband of a beautiful intelligent and vivacious woman. He was Dutch, an unbelievable woodworker ~ or “The Dutchman” a contractor who’s bottom line was making sure families were safe over making an extra dollar for himself. He was Sgt. Dutch, a father in law to a man who didn’t get to know his other entities – but loved him anyway. Pop Pop to his 12 grandchildren that he loved beyond measure. But most importantly he was Daddy, the father of 8 – and in my eyes, the destroyer of all evil, the man who could makes boo boos and monsters in the closet go away. The man who would lift me up on his shoulders and make everything about the world a little bit brighter. My dad was a provider, a hard but, funny and loving man – he was a complete contradiction in all areas of his life and because of that he was beautiful. A man who could overcome anything, including his flirtation with alcoholism, losing his wife at 61 years old, a stroke – everything life threw his way. And he’d do it with a smile on his face & a joke on his lips to put you at ease and in a better mood. He didn’t know that he would end up with a diagnosis like Alzheimer’s. He didn’t realize it doesn’t matter how big your will is – you can’t fight this away. He didn’t know he would slowly forget his family. Grandchildren first, then the older children until finally at the end – after the double whammy of the lung cancer on top of the Alzheimer’s – even me. The one he lived with and reached out to for everything. He had no idea he’d hallucinate and have to battle copper dragons or the spiders and bugs crawling down his wall. He had no idea his baby, his youngest daughter, would have to feed him, bathe him, cry with him every day until he ultimately left us. He had no way of knowing or preparing for the fact that this disease would take away his strongest memory – his unbreakable love to his wife, my mother Ellen. I didn’t understand how a person can possibly endure everything I knew my dad was about to go through, hell, I still don’t. At first – there’s denial. From all of us. Not Daddy, he’s too big. We have time – this is a slow moving disease – surely everything will be okay. Then the calls start coming. Bills aren’t being paid. Dad’s falling. Dad forgot where he was going. Dad can’t remember so and so’s name. My siblings and I, we had a battle Royale deciding – where is the best place for Dad to be, who can make sure he’s safe? And the final verdict was – me. My husband & I moved him in, and left denial in the past. I accepted what was to come & chose to learn and be proactive – it wasn’t just dad having to endure this. It was all of us. My daughter, my siblings, my husband, my step son, me…
In the most insightful move I’ve ever made in my life – I went on line and typed in “My dad has Alzheimer’s and is moving in with me, now what”. The Alzheimer’s Associations website popped up. With nothing more than a general diagnosis from the VA and a whole lot of fear – I called in to the Greater PA Chapter & spoke with Suzanne. And she talked me through it all. Where I expected voicemails, I got a human. Where I expected impatience, I got care and attention. Where I expected a quick email with no follow up I got a woman who took my fears, my tears, even my dad and made it personal for her too. Not only did she help direct me into touch with outside sources – she directed me to this group of woman she thought might be good for me. Caregivers Under 40. So, I went to the first Google Hangout call in my life and “met” Suzanne, Leah, Meg, Ellie and Jess. Women, who work, have children, husbands and the responsibility and intensity of the role reversal…taking care of our parents who took care of us. With Suzanne, this group & the Alzheimer’s Association – I was able to build a network of support with people who understood what I was going through. Something not even my siblings could understand because they weren’t living the day in and day out. The medications, the paranoia, the daily vital checks, the doctor appointments, the yelling, the tears…and the joy over the simple things – like a remembered song or a shared secret between Pop Pop and granddaughter. The Alzheimer’s Association provided me and my family with so much information, so much support and so much direction during this last year of our lives. Without them – I can’t imagine how I would have survived. So, with my life having been irrevocably changed by this diagnosis, and the loss of this great man – I’ve decided there are a two options of things I can do. Hide my head in the sand by pretending it never happened – or fight back. And even though Daddy isn’t here to fight with me (with me against the disease, and just with me in general), I will remain a steadfast supporter of the Alzheimer’s Association, I’ll walk every year, I’ll raise as much as I can for those walks & I’ll do it in Daddy’s name and be grateful to Suzanne, Amy, Clay and everyone at The Greater PA chapter of the Alzheimer’s Association.
