'My brother was deteriorating before my eyes'

The author's brother, Michael, after teaching her how to make bread for Thanksgiving in 1984. Photo / Family photo via Washington Post

My brother stood near me as I measured out flour, cocoa powder, baking soda and salt, as I poured buttermilk, broke eggs and measured in spoonfuls of blood-red beet juice. I was making his favorite cake, a chocolate red velvet with a rich chocolate ganache frosting following the same recipe he used every year for his own birthday. He watched silently, occasionally shaking his head no when I needed correction, more often than not smiling with that familiar smirk, mugging for me in an attempt to infuse his Brooklyn kitchen with the old humor and joy of years of cooking and baking together.

There was none of his witty conversation, none of his usual wisecracks, nor even any brotherly advice offered beyond a pointed finger. There was no conversation, for my brother had no words.

The author and her brother at a family event in 1996. Photo / Family photo via Washington Post

Michael was well into his second year with ALS, amyotrophic lateral sclerosis, a progressive degenerative motor neuron disease characterized by muscle atrophy, increasing difficulty swallowing and breathing, growing weakness that leads to the loss of motor function and mobility - and, eventually, a shutdown of the body. He could barely croak out words, so he communicated with gestures and grimaces. He was already having trouble swallowing, so eating with him sometimes ended in a choking fit as I stood and watched, helplessly wringing my hands. The gradually imposing dementia, rare for this disease, was making it increasingly difficult to have a complex discussion. It had been a mere six months since his immediate family discovered he had been stricken by this rapidly advancing disease, and now there I was, spending two months with my older brother, offering what help I could.

I was at a loss. My usual yearly visits, whether on my own or with my two sons in tow, had been filled with museum exhibits, trips to the cinema, tromps through archives and cemeteries with Michael in our quest to discover our roots, and lengthy discussions about fashion, art, movies and literature. And when he wasn't taking me out to dine at one of his longtime favorites or to share a new discovery, we would go to the market and cook together.

All of this was now out of the question. But I knew I could cook, and feeding him was a priority. His body was ravaged; his slim yet strong figure had melted to be feeble and unsteady, and he was losing weight rapidly. His legs wrapped in heavy braces, he would steady himself against the wall as he shuffled between rooms. Hands that once played piano, kneaded dough, sketched and pieced together costumes for the Boston Ballet and Broadway shows were atrophied, clenched in permanent fists that could no longer twist the lid off a jar, slice a tomato or use a can opener. His weakness made it near impossible for him to lift a pan of boiling water from the stove or remove a baking dish from the oven.

The author and her brother in 1972. Photo / Family photo, via Washington Post

He needed to be nourished, and I was desperate to feed him. Each evening, I would pull out the pile of takeout menus he kept tucked beside his stand mixer, and we would choose a cuisine - Cuban, Italian or Thai - and he would point to what he wanted, urged on by me to pick whatever was most caloric. Or I would fix him a meal under his wordless guidance, something that made him still feel like the excellent cook he had been and the big brother he still was. He showed me how to pull off all of the skin of chicken pieces and rub the flesh generously with bottled curry paste before baking; he silently instructed me how to steam Brussels sprouts to be perfect, tender buds without the bitter edge; together we roasted vegetables and made pancakes and stirred pots of soup.

And, surrounded by the silence, I baked him his favorite chocolate red velvet cake, placing a thick wedge and two large scoops of ice cream in front of him at the end of each meal, making sure he ate every bite. He would smile, nodding his head that the food was good, that his kid sister had done all right. Sometimes, through these familiar gestures, sharing a meal almost felt like it used to.

I had also lived in Brooklyn, a long time ago, just a couple of years out of college. Michael found me an apartment, a one-bedroom one story up from his own in an old six-floor walk-up off Fourth Avenue. Once I settled in, he showed me his preferred grocery store and his favorite Korean market, the little Italian place that sold handmade ravioli and marble-sized ciliegine mozzarella balls, his tried-and-true bagel shop and bakery for real rugelach and hamantaschen. He showed me where I could buy a paper plate weighed down by half a roasted chicken and the best Cuban red beans and rice, all for just five bucks. An extraordinary cook, Michael watched over me as I attempted to bake my first yeast breads (he enthusiastically gobbled slice after rock-hard slice) and my first Thanksgiving turkey, gave my first dinner party and tested recipes for a friend's cookbook. In the two years I lived above him before moving to Europe, Michael fed me chicken soup, steaming plates of lasagna, omelets and salads, bagels and lox when my own paycheck didn't get me through the month.

When I moved to France, married and became a mother, we spoke on the phone every two weeks, and our conversations invariably turned to food. I worked in gastronomic tourism then as a food writer, so we shared discoveries of and gossip about restaurants and chefs, discussed cookbooks purchased and recipes developed. I would return to Brooklyn once a year or so with my sons, and we would follow Michael from restaurant to restaurant. He would cook for us, introducing my sons to chile con carne, bami goreng, gumbo and chopped liver, and we would dog his brisk steps as he led us to the grocery store or shops or down into the subway. He was always leading.

And now I would navigate the streets of Brooklyn on my own. Instead of trotting to match his stride, I would grip his elbow and help him carefully maneuver the steps, the sidewalks, making sure he didn't fall. But mostly he would stay at home while I wandered his new, unfamiliar neighborhood. I would choose what to buy, what to cook, what to feed him, which was never easy for me, who all too often relied on others - and mostly on my big brother when we were together. No advice, no discussion, no excitement, no fun. I was there only to make sure he ate as much as I could get him to eat. I ordered takeout, I heated up pot pies and casseroles, I bought doughnuts and cookies that I would place before him as often as I could persuade him to sit and eat.

Cooking and eating were all we had. We spoke little during those two months I stayed with him. We avoided each other when we weren't sharing a meal. He watched TV for long hours and I read, the silence heavy with what we loathed thinking about: his illness and impending death. In the confusion and denial caused by his dementia, he refused to believe he was dying; in my fear and sadness, I simply could not face it. And so I busied myself with cooking, praying that those slices of cake, bowls of soup, plates of chicken and Brussels sprouts could save him.

My brother and I have never been demonstrative with our affection. Although we were devoted to and fiercely protective of each other, sharing food and cooking and eating together had always been how we expressed our love, how we entertained ourselves and made the other happy, how we protected and soothed each other from life's bumps and bruises.

As I stood in his warm kitchen during those cold, dark February days so long ago now, back in 2009, and watched him eat, I recalled my mother once telling me that when she brought me home from the hospital 50 years earlier, Michael, all of 3 years old, decided it was his responsibility to feed me. We had come full circle, and now it was my turn to feed him.

The last day of my stay, I left Michael standing in his doorway, that familiar crooked smile on his face as he and I said our goodbyes, much like all the other goodbyes at the end of one of my visits, quick and slightly embarrassed by the lack of a hug. I stepped into an early March morning, the taxi waiting to take me to the airport and back to my husband and sons in France. But I knew that if I left that way, I would always regret it. I turned around and ran back up the steps, wrapped my arms around him, now all skin and bones, and he laughed nervously. "I love you," I murmured into his T-shirt, tears in my eyes.

I turned to the woman I had hired to care for him, our shared look speaking volumes: "You take very good care of him. Feed him well, and make sure he eats."

I hadn't thought twice about making that difficult trip over to care for Michael, no matter the sad silence that hung between us. The time I spent preparing and serving him chicken and vegetables, urging him to eat another slice of chocolate cake, made me realize just how much that food is our first and our last connection with those we love. Although our history is infused with so many stories of shared meals, cooking and baking adventures, I had never before felt the overwhelming power the simple act of nourishing carried to comfort not only my brother, but me.

I couldn't get back to Michael at the very end, after they brought him home to Florida; he could no longer stay in his own house, even with home care, the last couple of months before he passed away on Sept. 15, 2009. The end came so quickly. My sister Sue told me how she spoon-fed him bits of applesauce and water when he could no longer lift a spoon, when he could no longer swallow much of anything, the same thing I had done for our father twenty-some years earlier when he was dying of the same disease.

Years of sibling rivalry between Sue and Michael melted away under the weight of necessity, the raw emotions of love and devotion, the innate reflex to protect. Our lives whittle down to basic needs, and we take to the responsibility without a thought. We feed, bathe, dress them as we did our children, as they, Michael and Dad, did for us when we were young.