Thursday, July 25, 2013


This essay is by Fani Lemken, a friend and mentor of mine. 

I was not prepared for my first encounter with Alzheimer’s. It is my aunt Sarah who has it, and I until I saw her I had only a vague idea of what to expect, mostly informed by made-for-TV movies and people’s characterization that it is a “cruel” disease because it robs people of their history.

So I was apprehensive when I learned that I would be seeing my aunt Sarah during our trip to Greece in June. I remembered her from previous trips; a force of nature, second eldest daughter of a large family. She had survived deportation to Czechoslovakia during World War II, the communist revolution in her new country shortly after that, and an eventual return to Greece during glasnost.

Only slightly taller than my mother, the last time I’d seen her she was a beautiful woman with large brown eyes that sparkled with intelligence and mischief. She was quick witted and kind, but did not suffer fools.  She had turned out children who were intelligent, kind-hearted, and family focused.

Which may be why her sisters did not react to the news when Sarah was diagnosed with Alzheimer’s three years ago. Her daughter Stella became the storied bearer of bad news, marring family gatherings with anecdotes of her mother’s increasing forgetfulness, tales that were quickly brushed aside as annoying fairy tales.

Which is why Stella bore the brunt of her mother’s anger alone. She watched her mother, known far and wide for her wit, her sharp mind and kind heart, fight against an enemy that crept along the neural pathways of her brain, randomly destroying bits and pieces of her history, robbing her of words that a moment ago were on the tip of her tongue.

As her caregiver, Stella was the focus of Sarah’s frustration, taking the blame for all manner of mishaps and lost items. She was the target for bursts of unprovoked anger, her buttons pushed, her breathing tight, as she tried to remember that her mother’s illness was real, and the anger was part of the illness.

Stella bore her mother’s anger, and more. When she found a nursing home to care for Sarah, she bore the harsh words of her mother’s sisters, her aunts, who had only ever uttered kind words of praise and pride for their beautiful niece, a doctor, a strong woman who raised brilliant children, physicists and mathematicians.  They forgot why they loved Stella so much, when she told them that she had to find a place to care for her mother while she was at work, because Sarah forgot to turn off the stove burners and burned her arm, and Sarah frequently got lost in their front yard.  Instead, they returned from visiting Sarah and unleashed a torrent of harsh words, their unified voices melting into a cacophony of lament. But they still did not believe it was true.

I saw aunt Sarah for the first time since her diagnosis, in Athens. She came to visit with Stella at our open house, where family gathered to visit the American cousins. They arrived and my heart contracted a little bit, just seeing them standing beyond the rose bushes. I didn't know how I should act. I wanted to show support for Stella, and I loved my aunt. Would she know me? What should I say?

They passed through the gate and we gave our hugs and kisses of greeting. I was saved for the time being from action, my hosting duties paramount. I fetched coffee and cold water, biscuits and fruit. I ran back and forth from the kitchen, carrying plates, cups, glasses. Stella urged me to sit and visit for a while, and I did, jumping up often to refill a glass or refresh a plate of food, or greet newcomers to the gathering.

I hugged my cousins, aunts and uncles as they arrived, and saw that they, too, hesitated before approaching Sarah. They spotted her sitting with her back to the wall of bougainvillea, as she watched the newcomers with no sign of recognition. I wondered if they were thinking, “She’ll remember me, surely?” And then I saw them turn away after the greeting, some faces registering shock, others tearing up. It was real; Sarah was not there – she did not remember them.

Stella watched it all too, her face registering a measure of sadness, mixed with something else. It was finally clear to everyone that she had not been exaggerating, that she had not been lying, but in that instance, I saw her and wondered if she was thinking what I would be thinking, “But I wish I had been.”

As my family greeted each other, it became clear that many of them had not seen each other in quite some time. We got no explanation for why this was the case; more than likely it was the same for them as it is for most families everywhere – days turn to weeks turn to months turn to years when you’re not looking.

The aunts and cousins decided to take this opportunity to discuss a legal matter, which affected most of them. They gathered around the main table to deliberate, leaving my aunt Martha sitting with Sarah at the table against the wall. Martha was straining to hear what was being discussed. It was time – I couldn’t put it off any longer.

“Thia,” I said, “Go sit with the others. I’ll sit with Thia Sarah.”

And that’s how I came to sit next to her. She turned to me and smiled, warmth in her brown eyes.

“You are a beautiful woman,” she told me.
“Thank you Thia.”
“You have a lovely smile.”
I smiled at her. She held my gaze, smiling back.
“Do you have children?” she asked.
“Yes, I do; two boys – Matthew and Peter.”
“May God bless them and fortune shine down on them. May they be healthy and happy all the days of their lives.”
I felt the force of her blessing, a palpable thing, comforting and familiar, but powerful at the same time.
“Thank you Thia.”
She nodded once, still smiling. She glanced at the table, her eyes focusing on a glass of water. She made no move to pick it up.
“Are you thirsty?” I asked.
“This is your water – here.”
She took a long drink and set the glass back down, in the middle of the table. She glanced towards the street. I turned my attention to the group at the table, trying to follow the conversation for a bit. After a minute, I turned back to Sarah. She turned to me too.

“That’s a beautiful color for you,” she said.
“Thank you Thia.”
“You are a beautiful woman.”
“Thank you.”
“And you have a lovely smile.”
I smiled wider.
“May God bless you and your family and bring you everything your heart desires.”
“Thank you Thia.”
Again, that powerful feeling flowed from my aunt, from her thin frame to wash over me.

And so it went. Every few minutes, our conversation would end, we would look away for a minute, and when we reconnected, my aunt would start all over again. But I noticed there was a consistency to her engagement with me – she seemed sincere in her observations and her blessing was always forceful and palpable. In a very real sense, she came from the same place in each interaction. The words were different, but the sentiment was the same. And I got the impression that though she may not remember speaking to me 60 seconds ago, my aunt Sarah  - the essence of my aunt Sarah – was present in our every encounter.

Now let me say that I have met my aunt Sarah only a handful of times in my life, the result of living continents apart. She is real to me in the stories my mother has told us of growing up, of her 6 brothers and sisters, of life during World War II in Greece.
But I don’t have shared personal history with Sarah, so I didn't have as much to lose as the rest of the family, approaching her in my mother’s garden that day in June.

So maybe that’s why I was able to feel that I had found my aunt Sarah, stripped of history, stripped of memories. I encountered the essence of the woman. She was kind and generous, always starting our interaction with kind words. And she gave me her blessing freely – backed by the force of her spirit, and not just as a stream of words casually spoken.

As more relatives arrived, my cousin John came into the yard. He saw aunt Sarah standing in the midst of her family, smiling but not recognizing anyone. He turned a big smile her way and said in a booming voice “Well, do you know who I am?” She turned to him and didn't skip a beat as she responded, “Yes, you are your mother’s son.”

And a funny thing happened. In that instance, with that witty comeback, my cousins relaxed. Her sisters breathed deeply. They saw the essence of Sarah just as I had – they realized that there was something the disease has not been able to take away. And while they know that much of their shared history is gone, they know now that their sister, their aunt is still here.