As the leader of one of the largest synagogues in the world, Rabbi Steve Leder has comforted thousands of grieving families who’ve lost loved ones. But as he tells us in the following excerpt from new book, The Beauty of What Remains, it still didn’t prepare him for the loss of his own father to Alzheimer’s.
In a way I knew little of death and grief until I buried my father slightly a year before beginning this book. His disease and his death revealed the powerful, disturbing, painful, beautiful lessons that only loss can teach us. I marveled at the way he accepted the diagnosis twelve Thanksgivings ago.
“Leonard,” my mother said matter-of-factly, “the doctor says you have Alzheimer’s.”
“Really?”
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“Yes, really.”
“Dad, do you have any questions?” I asked.
“Nope. I know you kids love me and will do your best to take care of me. It is what it is.”
Then he yawned (exhausted each day by noon from the hard work that thinking had already become), lay down on the couch in my sister’s basement, and took a nap. Facing the facts without drama or remorse was classic Dad.
Dad was strong. Ten damn years with Alzheimer’s—amazing what you can get used to. At first we got used to him trying to make phone calls with the TV remote. Then there were the car accidents, the confusion, the extra time it took him to pay the bills at the office, the way he could no longer find things or figure out an 18 percent tip, his angry outbursts, his withdrawal. We watched it all as if in slow motion.
He was right about our doing our best to take care of him. Even Mom, who mostly struggled with him through fifty-five years of a terrible marriage before the diagnosis, tried hard for a while—dressing him in the morning like her eleventh grandchild. She kept him at home until one night he fell in the bathroom with the door locked, stuck there trapped and urine soaked until morning. The paramedics took him to the hospital and he never came home again.
The new normal was a nursing home, where Dad seemed to enjoy the aquarium and singing along to “You Are My Sunshine.” His singing that song to the five of us kids in the back of the station wagon was one of the few mellow things I remember about my father when I was young. “You’ll never know, dear, / How much I love you. / Please don’t take my sunshine away.” Somehow I knew he meant it. He really loved us. Years later, watching the well-meaning nursing home volunteer with her guitar coax those words from my father’s failing brain broke my heart.
There would be plenty more heartbreak where that came from—seeing him in a diaper and bib for the first time; watching him being hoisted from his wheelchair to his bed with a lift, dangling and helpless like a marionette. The catheter, the baby food, the drool. Like most boys, I watched my dad shave in the morning with awe. Never did I think I would be shaving him while he stared blankly into space.
Despite his lack of formal education, my father was a natural professor of sorts; he was always teaching. Usually, each lesson included a Yiddishism from his childhood. If the day’s topic was “Things could always be worse,” he quipped. “Iz beser vie a geshfir aoyf deyn hinter—It’s better than a boil on your ass.” No matter how anxious, sad, frightened, or defeated we felt, no matter what terrible things we thought we were facing in our teenage angst, the idea of its being better than a boil on our ass always made us laugh.
But Dad was right. A boil on your behind is no joke. At the time that expression was coined, there were no antibiotics. A bedsore meant almost certain death from infection. Six months after he entered the first nursing home, my mom called to say she was moving him to a new home because the care was awful and he had a bedsore on his butt. I wept.
In the quiet of endless days my tough, frightening, crude, funny, and wickedly smart dad slipped mostly away. His memory and body were nearly gone; he sat in his nursing home wheelchair and stared blankly, asleep most of the time. Often he did not know my name. Every day the disease gained ground. Eventually it won.
But it also lost. Alzheimer’s lost when it tried to fracture my family. We group-chatted and talked and visited with one another, in some ways closer than ever before. Alzheimer’s lost when it tried to distance me from my dad, teaching me instead how much it meant just to sit in silence and hold his hand until he fell asleep.
I think again about shaving him in his wheelchair, feeling both heartbroken and deeply moved by the intimacy of it all—touched by his tender dependency on me in that moment. Of course the world was safer when my dad could protect me. My mind flashes back to when I was very young, maybe eight or nine, and my dad, for the first time I can recall, took my brother and me on a three-day fishing trip to a lake lodge in Minnesota. I doubt my father or my brother remembered the incident, but it is embedded in me. One night we heard something scurrying around the cabin, and it scared me. I remember my dad saying it was just a mouse and, “Let’s find the little guy and give him something to eat,” while putting a piece of bread on the floor. “He’s just a little guy who’s hungry.”
I don’t remember what happened next, but I do remember feeling safe because my dad was there, turning something that loomed large in my childhood psyche into “just a little guy who’s hungry.” How could I now be shaving my once-strong dad? The old Yiddish proverb is true: “When a father gives to his son, both laugh; when a son gives to his father, both cry.”
In a way, Alzheimer’s weaned me from my dad and started me grieving that loss long before he actually died. People with diseases that involve memory loss really do die twice. But still, there is a shocking finality, a heavier grief, when death finally comes. That journey began when my mother called and simply said, “Steven, your father died an hour ago.”
From THE BEAUTY OF WHAT REMAINS: How Our Greatest Fear Becomes Our Greatest Gift by Steve Leder, to be published January 5, 2021 by Avery, an imprint of Penguin Publishing Group, a division of Penguin Random House, LLC. Copyright © 2021 by Steve Leder