I look at you now, and my heart breaks into a million pieces. Who is this grey-haired woman with a permanent frown and unfocused, confused eyes? Where is the vivacious, intelligent, tender-hearted woman who nurtured me as a baby, admonished me (when necessary) when I was a tween, and listened to my teenage angst? Where is the woman of few words who prepared special herbal concoctions to soothe my pain and imparted a love of cooking and knack for mixing spices to me, her eldest granddaughter? Now I sit and stare at the woman who struggles to talk to us because she’s lost the ability to do so. I see the look of confusion when you try so hard to communicate using sound and gestures, and nothing intelligible comes out. And it’s a stab through my heart.
I hate this disease and how it has robbed me and all of us of getting to know you better. You’ve been one of my greatest teachers, and now it’s me repeating words to you. The nursing staff say it’s in vain, but I hold out hope that the Mama I loved so much, who had so much patience with me, is in there and will magically say something; will remember me. We’ve watched how you slowly lost your memory, your ability to walk and now speak, and gradually your ability to swallow.
Alzheimer’s robs not only the person who’s afflicted but shatters whole families. We’re grateful you’re alive but wince at the pain of that life. We know your disease is slowly killing off all brain cells and shutting down your body, which is almost unbearable to witness.
People think it’s just about forgetfulness, but we, as your loved ones, know it’s so much more. It’s the great dehumanizer. I see the pain etched on my dad’s face when there’s no glimmer in your eyes when he walks into the room. The social workers tell us it’s ‘death by a thousand cuts.’ And I believe them. We’ve walked this journey with you since your diagnosis, and we never imagined the excruciating pain of it all. Shock, disbelief and denial followed after that doctor’s visit. Then the anger set in. Until finally, we resigned ourselves to your fate and made peace and an effort to understand this fully. I still don’t at times. How is it that your brain cells are dying, but there’s been no trauma?
Then there’s the aggression no one prepared us for; the outrage and hurt. You would scream at all of us and accuse people of stealing or conspiring against you. And there was no reasoning with you. Ever. We learned that this, too, is “normal” for an abnormal disease like Alzheimer’s. Over time we learned how best to calm you down from one of your episodes. But it hurt us to see you in such agony, believing that people were trying to hurt you (when they weren’t).
While you’re not the same woman I recall from many fond memories, I still love and cherish even this time with you. As hard as this journey is, know I will walk this road with you until the end and beyond. Your values, knack for mixing spices, big, golden heart and love for people and life will live on in me. May you know how much I and everyone else love you. And know you will live on in my heart long after your body has departed this earth.
Love Leila, your granddaughter
Note to all readers: Today, as we mark World Alzheimer’s Day, people will wear purple ribbons and share how we can all decrease our risk of having Alzheimer’s or dementia. The truth is that despite the increase globally in the number of people living with dementia (the World Economic Forum predicts that by 2050 there’ll be 153 million people living with dementia), we have not made great strides in finding a cure for it. Remember that the older person you see muttering in the street or strolling in a shop’s aisle may have dementia (Alzheimer’s is one form of dementia). Be patient, be kind – chances are they may be someone’s beloved gogo who’s experiencing a decline in their brain function.
Tell us: What words of encouragement do you have for the author?
Read more here on World Alzheimer’s Day.