January 21, 2011

The sadness of Alzheimer's

In my previous piece I mention how wonderful it is to relive moments and remember. This piece from a favorite Blog of mine, TIME GOES BY, relates how life shattering it is to lose the facility to recall our past.

Together Our Journey

By Linda Carmi

My Sweet Husband,

I would like to reach inside and cradle your mind that was once so sharp and soothe it with kisses – wipe away the tangles that are so distressing for you. I would like so much to do that. Oh, that I could bring you back to those precious times when your laugh came easily and the twinkle in your eyes hinted of something deliciously fun to come.

Instead, I can give you kisses that tickle your face and muss your hair. And hug - lots of hugs and kisses (minimum of seven seconds is recommended, and 17 hugs daily). And, the “I Love You’s” and “I’m so proud of you.” Lots and lots of those.

We have been living this adventure together for quite awhile now. It is absolutely true what they say, “When you see one case of Alzheimers, you have seen one.” A wry statement, but it is the truth. It is a relentless foe and the surprises keep you on your toes for sure.

My husband used to pound his head in anguish and cry out, “What is happening to me?! Something is in there, like a stone!”

I have asked him at different times, “Do you know what Alzheimer’s disease is?”

Though the word has been spoken around him, indeed a specific evaluation for Alzheimer’s disease at UCLA did not rouse his curiosity. He has never seemed to have any awareness of it.

The progression of AD continues to rob him of his memories and it doesn’t seem to matter any longer whether he knows what happens to him. There is so much that he cannot wrap his mind around, and now his ability to understand is quite simply gone.

Imagine that! Gone. Poof, just evaporated. It is difficult to even imagine how that must feel. It’s as if a heavy, soggy blanket of disease squeezes out of him the qualities that the rest of us mostly take for granted. He just cannot move from beneath the fog that started out in light patches and has advanced to be the pea soup variety with no signs of clearing.

He becomes less and less of himself with each passing day. His world becomes smaller, with me as the focal point that must remain constant for him to feel safe. I am his steady beacon of light in the world of shadows.

I miss our conversations. I comment on the beautiful mountains, the weather and his response is the same, again and again and again. It’s like his questions are playing on a loop; same words, moments apart.

Gone is his infectious spontaneity, with ideas for some bit of fun to go after. He is totally dependent on me for everything except the body’s natural functions.

He takes great pleasure in a daily car ride, so I have made this “our date.” I talk it up to make the same places sound new and exciting. We load up the car to go and my sweet darling asks me half a dozen times before we reach the end of the block, “Where we go?”

I patiently explain that we are going on our date, wherever that may be for the day. That seems to satisfy him.

We go to one of our favorite places where the service people all seem to know us and offer him attention as they help with the wheelchair. He is quite handsome with his white hair, blue eyes and always a “thank you” on his lips.

Very often I get a tender kiss on my hand, along with “Baba, if you would only know how I love you.” I’d say it is a good exchange.

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