Thursday, November 5, 2015
In the Shadow of Alzheimer's
I read a CNN story today of one man's battle with Alzheimer’s and his unique ways of being able to actually describe what he is going through. Mr. Sandy Halperin, like my father did in his early to moderate stages of the disease, uses his intellect and creativity to compensate for the disease. My dad did that: that is why he was able to hide what was happening to him for so long. There is such an twisted irony in the fact that Alzheimer’s often strikes people who exhibit high intellect and creativity.
Mr. Halperin talks of feeling like cotton is stuffed in the front part of his brain. He talks and then pauses, his train of thought erased in a millisecond. All too familiar patterns I saw in my father. Dad used to refer constantly to a whisk broom in his brain literally sweeping information and brain connections away. Dad could be sitting watching t.v or eating dinner and he would suddenly say, "That broom is back." He could hear it inside his head. The entire family knew what he was talking about because he had explained it to us so many times. Unfortunately my dad also had Parkinson’s that affected his ability to speak. Mr. Halperin is able to articulate well what he is going through. My dad couldn’t. He would stutter and stammer and maybe finally blurt out a few words of a sentence. My family and I were always playing a sort of sad game of charades. If I could have had anything while dad was still in the moderate stages of the disease I would have asked for his ability to speak to be restored. I missed out on so many important conversations with him that I would have liked to have had. But, in spite of, and because of, Dad’s dysphasia, he learned to talk with his facial expressions and his eyes and his body language. And sometimes that communication was louder and clearer than any words could ever have been. Until a year and half before his death he was still able to whisper “I love you” in my ear when he hugged me. Eventually he was only able whisper the word, “love” but I knew what he meant. Then it was only the hug, but I could still hear him say “I love you”.
It has been two years and almost three months since dad died. I can actually write the word “died” now instead of referring to it as one of the many euphemisms our language supplies for death; “he passed on” or “he left us” or “we lost him”. He died. Plain and simple, the way all of us are one day going to die. Now I can admit that. I can look at photographs of my dad and smile, I can remember how his eyes would twinkle (I swear, they twinkled, that is not a figure of speech), I can remember him grilling his famous Fourth of July hamburgers. I can remember him sitting over his steel guitar hour after hour trying to get a portion of song to sound just right (and he always did). I can remember a lot now and not be sad. Time is taking care of that deep grief and gifting me with all the good memories. My heart still has am empty place and I still miss him so much that it is a sharp ache in the center of chest that feels like a stone, but I can work around the weight of that stone now and smile at the memories.
Dad didn’t want us telling people that he had Alzheimer’s because he didn’t want them to treat him any differently. And he was right. After people found out he had Alzheimer’s they did treat him differently. They treated him like a child and he wasn’t a child. He was a grown man who knew that parts of his brain and his self were being slowly eaten away. Maybe with more education and knowledge and with people like Sandy Halpern coming forth the fears will be eased and others will be able to understand how vital it is to keep on relating to the person with Alzheimer’s as a person instead of a disease.
Back to Mr. Halperin and HIS story. I hope that the stories of people like Sandy Halperin can offer more insight into the disease and lead to more understanding. His story is important.
My thoughts are with the Halperin family because I truly know what it is like to watch someone you love sink into this disease. And I thank you for telling your story, Mr. Halperin. You told it with dignity, grace, and gave a peek into your daily struggles that will enable others to dispel the many fallacies about Alzheimer’s that simply are just that: fallacies.
Please take a moment to click on the link below and read Sandy Halpern's story.
Posted by Liti