Caregiver Writes Open Letter to Alzheimer’s

Walk to End Alzheimer'sOn October 7, The Kenwood by Senior Star staff, residents and their families will head to Sawyer Point for the Cincinnati Tri-State Walk to End Alzheimer’s®. Held annually in more than 600 communities nationwide, the Walk invites participants of all ages to join the fight to #EndALZ by raising awareness and funds for Alzheimer’s care, support and research.

With a new case of Alzheimer’s disease diagnosed every 66 seconds in the United States, this advocacy is needed now more than ever.

Kenwood resident Edith Samuels knows the disease’s immense toll, as her husband is a current Memory Care resident at The Kenwood. Her essay below, written as an open letter to Alzheimer’s, is a stark, but eloquent reminder of the disease’s impact.

To join The Kenwood by Senior Star, Edith and our countless passionate residents in raising funds for the Walk to End Alzheimer’s, please consider visiting our team’s page on ALZ.org. Any donation – big or small – helps our team get one step closer our $75,000 goal.

An Open Letter to A Disease from a Caregiver

By Edith Samuels

We met about five and a half years ago. That is when my husband formally introduced us. But as I look back, I realize that, almost unnoticed, you had already been insinuating yourself into our lives for a number of years. We hadn’t realized that we, he and I, had begun our long goodbye.

I’ve learned more about you, A, than I ever wanted. In fact, you and I have become quite intimate over these past several years. Now I know you are: insidious and relentless, wily and unpredictable, stealthy and cruel. You are capricious, a chameleon, the consummate shape shifter.

At first you crept in like Carl Sandberg’s fog, silently, “on little cat feet,” creating little misunderstandings, minor memory lapses, clouding judgment—all fleeting hints of the havoc to come. Did you laugh as we tried to understand what was happening, find explanations, or make sense of these sudden oddities?

Then, like a carpenter using hammer and chisel, you began to chip, chip away—a word, then another, and another; chip, chip, chipping at understanding; chip, chip, chipping away recent memories and then memories of long ago—stripping them away to lie like detritus, forgotten, stealing yesterdays and tomorrows. For him, there would no longer be any “again.”

Now I watch helplessly as you construct a prison—brick by brick—building the walls higher and higher—isolating him, cutting off communication, ultimately enclosing him completely.

I still do catch glimpses of all he used to be—loving, gentle, kind, multi-talented, bright and interested in everything, my Renaissance Man.

But you will transform yourself one final time. You will turn into a magician and make him disappear.

I know you will win. I can’t stop you.

But I am not willing to give up.

I think about you almost constantly. What new changes will tomorrow bring? Will I be able to handle them? My days seem to revolve around you and only you. You have become my closest companion. I see the pile of unread books on my night table. I read about concerts and lectures I don’t attend, movies I never get to see, classes I no longer sign up for. I too am isolated and disappearing. This road is a lonesome one and I am lonely. I am collateral damage.

Edith Samuels

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