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I know what blue is

Posted: February 14, 2014 8:57 a.m.
Updated: February 15, 2014 5:00 a.m.

In the early stages so often we would hear, “What’s happening to me?” Usually someone nearby could ease the worry with some kind, encouraging words convincing her she was fine and safe then quickly use the art of distraction to steer her away from this momentary fret. Instants like those were especially difficult for me. They delivered innate feelings of guilt. They reminded me of the harsh detail of what we had done. They were a reminder of the fact we had just noticeably lessened the radius of our mother’s life. We had to -- her mind was no longer reliable; it lacked any consistency. No longer could she drive or live on her own. Her mind had begun its slow decent in to silence; the harrowing decent in to the oblivion of Alzheimer’s disease. Moments like those marked the beginning of her long goodbye.

During the past five years since our mother’s diagnosis, we have trekked over the unstable terrain of this heartbreaking and unpredictable illness. Alzheimer’s has forever changed not only the life of our mother, but also the lives of our entire clan: three siblings, our spouses, five grandchildren. My mother’s life seems to be defined by rushes of slithering memories. Alzheimer’s patients live for today. They cannot remember yesterdays, nor can they plan for tomorrows. The todays are foggy ones. It’s partly today; it’s partly yesterday. It is as unpredictable as the changing weather. Loved ones want more than todays. We want all of it -- the todays, the tomorrows, and the guts of the past. The best we can do is not to force the memories but live with our mother’s todays. We can reminisce to feel the person we once knew. We must continue to accept the transition as we phase in to the change it is continuously bringing.

For my mother, everyday is different as she stands on the border between the disease’s many ranks. Alzheimer’s patients can be at times like pawns on a chessboard -- motionless, faceless, waiting to be moved, standing before a dreary mosaic of black and white. Other times, patients can appear to be content and peaceful in that very trice, wherever their mind resides on their “today.” It can be a place of harmony. It may be the present; it may be a flicker of the past but what is certain is that this piece of time belongs to them for as long as there is life still in their brains. They are still here.

I imagine the mind of someone suffering from Alzheimer’s is full of thoughts of the like: “I get confused, I forget your name, but I am still your husband. I am still your best friend. I am still your mother, your sister. I miss my car; someone took my keys. I miss my house. Where do I live? I am ready to go home. Who are you? What is your name? Are you my daughter? I don’t remember who you are. What I do know is I like to throw a ball. I like to walk outside. I love children and their happy faces. I love good times, old times. Maybe I won’t know the blue sky anymore. Perhaps I won’t know who I am looking at today. I may not know who I saw yesterday, or what I ate, or if I ate. But today I know what blue is. I know the sky. I know the outside. I know your face. It is pretty. And I can feel my heart. It smiles when I see my family. Your faces are familiar. I do know that. I may forget you. I will forget you. But please, don’t forget me. I am someone. I was someone. I used to remember. I used to live. I am still here….”

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