British actress Carey Mulligan recently spoke on BBC Radio 4 about her grandmother, “Nan,” who was diagnosed with dementia in 2004. “Every visit for the last seven years, she hasn’t recognized any of us,” Mulligan said. “When we leave, she won’t remember that we’ve been there. But . . . there’s a calmness and there’s a companionship and these really fundamental feelings of being loved and being taken care of by people who, you know, family who really love you.”
Mulligan’s sentiment reflected my own experience with my grandma, who died of Alzheimer’s disease this past Christmas.
For five years, I watched my Grandma Beatrice, affectionately known as “Bobby,” fade away from Alzheimer’s disease. Before her passing, Bobby suffered for years; my vibrant, sassy grandmother, who loved her matriarchal role in our Italian family, who always had something inappropriate to say about men, who volunteered at church, who had the same best friend for fifty years, and who spoke with the thickest of New York accents, lost so much of what seemed to make her her.
Alzheimer’s, the most common form of dementia, occurs when brain cells and cell connections degenerate and die, damaging memory and other important mental function. It slowly corrodes the brain and leaves people seeming like empty shells. My grandmother was always put-together, and now she couldn’t remember how to shower or put her shoe on the right foot.
Research reveals that Alzheimer’s disproportionately affects women. More women than men are living with the disease, and the overwhelming number of caretakers for Alzheimer’s patients are women, including my aunt who was my Bobby’s primary caregiver for years.
This genetic factor of Alzheimer’s suddenly made it very personal. Would the gene travel through generations and take me? I panicked at the thought of losing the memories of where I have traveled or what I have read or whom I love. I saw the humiliation of the disease and the apparent loss of dignity.
However, Bobby humbled me. Living with her disease taught me the beauty of a life lived in joy and not fear.
Despite sporadic moments of fear and anxiety, my grandmother spent most of her remaining time on this earth laughing and smiling. She found beauty in the simplest of things and would use her trademark phrase, “Oh, isn’t that nice” to express her delight. She always knew how to find the special dark chocolate out of a batch of candy, and when we would watch Anne of Green Gables, she still knew to say, “Isn’t he handsome,” when Gilbert Blythe appeared on-screen.
She knew how to appreciate people. ’Til the very end, she’d look you in the eye and say, “You are wonderful,” and “I love you.” And I believe she could tell when she was loved in return. During my last visit with her, a month before she died, she couldn’t speak. I said, “Grandma, I love you,” and she shocked us all by saying, “I know.”
With Alzheimer’s it is easy to forget that the person can still hear you and can understand your frustration. It’s easy to take for granted that the person standing before you is a human being with feelings. Alzheimer’s traps people inside of themselves; they know the fundamentals such as love, fear, and sadness, but they lose the ability to express them. I’ve seen other patients suffering from Alzheimer’s cast off by family members in the nursing home—as if because they can’t speak or use the toilet by themselves, and they need constant care, they somehow need love less.
I understand this flies in the face of this past century’s view of what it means to be human and have dignity. Being a worthy human today is equated to what you can visibly contribute to society. Once you become a burden and lose your “usefulness,” it seems, you no longer hold significance. My grandma, upon losing her ability to speak in sentences, cook, and take care of her children and grandchildren, had nothing worldly left to give. But by doing so, she taught me so much. Stripped down to nothing, her mind gone, my grandma still knew how to love.
While I do not wish the disease on anyone or their loved ones, I also don’t think we should fear it. We should not forget that those who suffer from it are valuable human beings deserving of our love and care. It’s a tragedy that my grandmother lost so much, but I found it was also an invitation for those who loved her to become more giving of our time, our love. The paradox for Bobby is that as her worldly qualities left her in a humbled state, she loved and lived more purely, and she provided an example for us to do the same.
I don’t know if I will develop this disease, but if one day I do get Alzheimer’s, I hope that those I have loved while I was well will be given the same gift of hope and love that my grandmother gave to me.
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