So - I found this as I was getting to the bottom of my dads autobiography. Not sure if he wrote this or was an excerpt from a book. Either way - its enlightening! Interesting to see this disease through the eyes of someone who is (was) living with it! May, 2005 My name is Gerald L. Clayton. I was a musician, music teacher, principal, and had a love for education most of my life. I was diagnosed with early-onset Alzheimer’s disease at age 62. I would like to lend some insight into what it’s like to live with Alzheimer’s. In the early stages of Alzheimer’s, I am not yet utterly incompetent. I am not without language or opinions that matter or extended periods of lucidity. Yet, I am not competent enough to be trusted with many of the demands and responsibilities of my former life. I feel like I am neither here nor there, like some crazy Dr. Seuss character in a bizarre land. It’s a very lonely and frustrating place to be. I no longer work. I no longer listen to music and understand it the way I used to. My reality is completely different from what it was not long ago. And it is distorted. The neural pathways I use to try to understand what you are saying, what I am thinking, and what is happening around me are gummed up with amyloid. I struggle to find the words I want to say and often hear myself saying the wrong ones. I can’t confidently judge spatial distances, which means I drop things and fall down a lot and can get lost two blocks from my home. And my short-term memory is hanging on by a couple of frayed threads. I’m losing my yesterdays. If you ask me what I did yesterday, what happened, what I saw and felt and heard, I’d be hard-pressed to give you details. I might guess a few things correctly. I’m an excellent guesser. But I don’t really know. I don’t remember yesterday or the yesterday before that. If I run into you in town, I will smile and pretend like I know you. Your face is familiar – yet I can’t place it. And I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I can’t offer it the names of the United States presidents in exchange for the names of my children and grandchildren. I can’t give it the names of the capitals and keep the memories of my wife. I can’t give memorized quotes for the names of my favorite composers, songs and musical pieces. I often fear tomorrow. What if I wake up and don’t know who my wife is? What if I don’t know where I am or recognize myself in the mirror? When will I no longer be me? Is the part of my brain that’s responsible for my unique “me-ness” vulnerable to this disease? Or is my identity something that transcends neurons, proteins, and defective molecules of DNA? Is my soul and spirit immune to the ravages of Alzheimer’s? I believe it is. Being diagnosed with Alzheimer’s is like being branded with a scarlet letter “A”. This is now who I am, someone with Alzheimers. This was how I would, for a time; define myself and how others continue to define me. But I am not what I say or what I do or what I remember. I am fundamentally more than that. I am a husband, father, grandfather, and friend. I still feel, understand, and am worthy of the love and joy in those relationships. I am still an active participant in society. My brain no longer works well, but I use my ears for unconditional listening, my shoulders for crying on, and my arms for hugging others with Alzheimer’s. I still have hope for a cure, for me, for my friends with Alzheimer’s, for my kids and grandkids who may carry the same mutated gene. I may never be able to retrieve what I’ve already lost, but I can sustain what I have. I still have a lot. Please don’t look at my scarlet “A” and write me off. Look me in the eye, talk directly to me. Don’t panic or take it personally if I make mistakes, because I will. I will repeat myself, I will misplace things, and I will get lost. I will forget your name and what you said two minutes ago. I will also try my hardest to compensate for and overcome my cognitive losses. I encourage you to empower me, not limit me. If someone has a spinal cord injury, is someone has lost a limb or has a functional disability from a stroke, families and professionals work hard to rehabilitate that person, to find ways to cope and manage despite these losses. Work with me. Help me develop tools to function around my losses in memory, language and cognition. Encourage involvement in support groups. Support groups can help both people with dementia and their caregivers, navigate through this Dr. Seuss land of neither here nor there. My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. I’m not longer able to teach others about music or mentor teachers to be their best. But here I am. I love who I was, the accomplishments I have made and the family I have had the pleasure of spending my life with. Please remember me as that – Gerald L. Clayton, the honorable principal, the master of music, the loving husband, father, brother, uncle and grandfather.
Posted on: Sat, 16 Aug 2014 00:00:37 +0000
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