As I learn more about my Major Neurocognitive Disorder (MND) diagnosis, I find myself wondering what this will look like. I am in the early stage of dementia. The cognitive difficulties have not progressed to my needing care. I don’t know how long this stage will last. Could be months. Could be years. I don’t know what to expect. I wonder, as this illness progresses, what it will be like for me. Most of the information I’ve found for MND is focused on the caregiver because the patient won’t remember what they’ve lost. But is that true?
I wonder if I won’t remember or if I’ll be locked inside, unable to get out. As it is now, my cognitive issues drop into a black hole. The memory will be there and then it won’t be. I can’t remember what I was talking about mid-sentence. Events that should be cemented into my memory vanish. Will it just happen more and more until everything that has made me, me is lost in that black hole? Or will I be locked in frustration wanting to communicate but unable to. As it is now, I get very upset by the losses. I know they’re gone. I want to say what I was going to say but am unable to find the words. I’m told that will change. I won’t know what I don’t know.
I used to be known by my memory abilities. I could remember events or people accurately but that is fading fast. I got in a fight with my wife not too long ago. She was trying to tell me where a business is located, and I couldn’t get it to fit in my memories of the area I’ve been. Another time, I was driving across the state and was looking at finding a rest stop. I honestly thought they moved the rest area because it wasn’t where I thought it should be. I told my brother they must have built a new one.
That’s another thing that bothers me. It’s not just that I don’t remember, it’s that I don’t remember correctly. I KNOW that rest area was in the wrong spot. I had driven that route so many times. I knew every inch of it – I thought.
That’s what scares me the most. I worry I will lose my awareness. I will lose my understanding of the world around me. I will lose myself. I will be warehoused in a facility, sad and angry. This is not the way I want to live. I want this early stage to go slowly but I want the moderate and severe stages to be quick. I know God will be with me every step of the way. I pray I remember the God that has loved me throughout my life and I remember that love, that presence, no matter what the future holds.
Photo by Ana Municio on Unsplash
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