She said it was the “happiest day of her life.” I learned to accept the feeling that life is out of my control.
Lately, when I read articles about the tragic sweep of Covid-19 through nursing homes and senior care living centers, I am reminded of the day my mother ran away from her senior residence home. In retrospect, she said it was the happiest day of her life. As for me, the responsible son charged with taking care of my parents in their final years, it was the day I realized that I would never feel in control of the situation. And I could learn to come to terms with that feeling.
My mother, Irene Kleiner (née Slovak) was a second-generation American. Her parents had been among the Jews emigrating from Hungary in the early 20th century. She was small, fierce, and angular, like a New York version of Granny from Li’l Abner. In all her years of tempestuous fury, I had never seen her angrier than when I placed her and my father, at ages 90 and 95 respectively, in a senior center in Riverdale, New York, a residential neighborhood in the Bronx.
My father took to it right away. After years of caring for my mother, and for the suburban house they’d lived in for 60 years, he loved being taken care of himself. He liked having a dining room to walk to for his meals, and having his laundry done and his room cleaned. But my mother chafed at everything: the restrictions, the institutional ambiance, and especially the loss of control. Of course, what bothered her the most was the illness that had brought them there. She had just gotten a preliminary diagnosis of Alzheimer’s syndrome a month before, and she was declining rapidly. It was only a year since she had been sharp enough to write and self-publish a book — a memoir about my brother, who was a 55-year-old autistic adult.
The book told the story of raising an autistic child in the late 1950s and early 1960s, when the standard practice was to lock kids who couldn’t communicate away in psychiatric wards. But my mother had refused. She had insisted she would beat this thing; she had pushed relentlessly for a diagnosis from psychologists who didn’t know anything about autism. She had also pushed my brother relentlessly, forcing him to communicate, finding ways for him to get into public school classrooms run by educators who didn’t understand his needs — and later into private schools for the developmentally disabled, that were just being established in those years. Thanks to her persistence, Edward had graduated from school, and finally he had gained the ability to live independently as an adult in his own apartment.
Having triumphed over her son’s autism, my mother was determined to overcome her own case of Alzheimer’s.
Having triumphed over her son’s autism, my mother was determined to overcome her own case of Alzheimer’s. But it wasn’t working out as she planned. She wanted to be useful; she wanted to write another book. But she could barely read, though she pretended to type at her computer. So she chafed. In her second week at the senior living center, she tried to poke a pencil in a staff counselor’s eye. They warned me then that she might not be a good fit there.
Every few days, she would summon me imperiously by phone, and threaten to run away if I didn’t drive down from my home, an hour and a half away, to hear her complaints. The food was bad; the elevators were packed; and people were telling her what to do. I was afraid that if she ran away, and the police found her, they’d force her into a locked-up mental health facility, and she and my father would be separated. I believed — no, I knew — that this would crush both of them.
Then one December Tuesday, when I was a few hours late to visit her, she decided she had had enough. She packed her suitcase, grabbed her computer bag, put on her winter coat and hat, and walked out the front door. No one stopped her. A city bus pulled up in front, and the driver said, “Where are you going?”
A young woman, passing by, helped her pull her suitcase up into the bus. “I hate the way they treat old people in this country,” my mother told the driver. “Take me to Canada.”
“I hate the way they treat old people in this country,” my mother told the bus driver. “Take me to Canada.”
“This bus doesn’t go there,” replied the driver. “But I can take you to the end of the line.” He let her board without paying a fare. And she vanished without a trace.
I arrived a couple of hours later, around lunch time. I found their apartment empty, and when I took the elevator down to the cafeteria, my father was eating alone. “Where’s Mom?” I asked.
“She left,” he said, spooning soup into his mouth complacently. He shrugged. “She’ll be back.”
I couldn’t call the police, so I began driving around the streets, looking for her. I knew she could be anywhere, I had no control over the situation, and I thought I should be panicked, but I felt strangely calm and clear-headed. There was no sign of her on the streets, and I’m not sure what I would have done next, but fortunately I got a call on my smartphone, from a woman who said she worked at Montefiore Medical Center. That was a large hospital complex in the west Bronx, about a 15-minute drive in city traffic from Riverdale.
“Your mother is here,” she told me. “She wouldn’t let us call you, because she said you’re an impostor who is trying to hurt her. But she has your card in her pocketbook and she finally gave it to us. We need you to come pick her up.”
Maybe I wasn’t as clear-headed as I thought I was. I could see that the hospital phone number was blocked, but I didn’t want to stop driving, so I didn’t do the common-sense thing: pull over and write down the caller’s name, phone number and address. Instead, I said, “Just stay on the line please. I’ll use my phone’s navigator to get there.”
But while navigating the hospital parking garage, and fumbling for cash for the attendant, I accidentally disconnected my phone call, losing contact with the woman I assumed was a nurse or nurse’s aide. I still didn’t have her name or number, but I wasn’t worried. I’d just go to the admitting desk.
When I got there, however, the receptionist could not find a record of my mother. She suggested I ask at the emergency room. That room was too crowded to move, and I couldn’t spot my mother inside. There were a dozen people there ahead of me, all trying to push their way to the inquiry desk. We all had to step aside several times, to let incoming gurneys with patients come through first. It took me about 20 minutes, but I caught someone’s eye. She checked the screen and said that they, too, had no record of my mother’s name.
There was a clinic across the street, she told me. Maybe my mother was there. So I ran across, and talked to the security guard at the front desk. He had no record of her either. He called around to several other security guards, to see if they had one. And one of them gave him a hopeful answer. He hung up, looked me in the eye, and said, “They think they saw your Mom. A little old lady, in a coat with a suitcase and computer bag, walking up Gun Hill Road.”
“They think they saw your Mom. A little old lady, in a coat with a suitcase and computer bag, walking up Gun Hill Road.”
Now I was getting a little anxious. So I ran out the door and up Gun Hill Road — a congested street of stores and shoulder-to-shoulder people. It’s the kind of street for which the word “teeming” must have been coined. I scanned the crowd, and thought I saw a little old lady with a wheeling cart and a heavy overcoat, so I started running up the hill. And then my phone rang.
“Where have you been?” said that same woman’s voice. They had been trying to call me, and the signal was blocked while I was in the hospital buildings. “We still have your mother here, and we’re waiting for you.”
This time, I took the address. I found a sign in front that said, simply, “Caregivers.” Inside the door was an indoor waterfall sculpture, and behind the soft churn of its ripples on the teak background, in a cozy chair, my mother was smiling and talking. It was like stepping through a doorway from bedlam into a retreat. The office was called the Montefiore Caregiver Support Center. Somehow, three social workers there, in that incredibly busy place, had found the time to spend a couple of hours chatting with an old woman who had wandered in off the street. One of them had called me, and now all three of them greeted me warmly, and invited me to stay and talk some more. I sat down, accepted a cup of coffee from them, and fell into the mood.
My mother greeted me with bubbly enthusiasm. She told me about her adventure that day. She had been so angry. So she had packed her bag, gathered her computer, put on her winter coat and hat, and made her way out the door. A young woman had helped her. A bus driver had let her board. And as she was looking out the window, she saw the site of one of her happiest memories. It was at Montefiore Hospital, years and years before, that my brother had first been diagnosed with autism, giving her the information she needed to push him into adulthood.
So she had rung the buzzer, come down from the bus, and walked up the street looking for that old clinic she had visited with her son. She didn’t find it, but she saw another sign called “Caregivers.” She said to herself, “If anyone needs a caregiver, it is me,” and went inside. And they had welcomed her. She had been there so long, warm and happy, that my mother was ready to trust me again. I was clearly not an impostor if these new friends of hers were so nice to me. And after another half hour or so, she allowed me to drive her home, to be with her husband again.
My mother was ready to trust me again. I was clearly not an impostor if these friends of hers were so nice to me.
That was Tuesday, December 11. By coincidence, it was my brother’s birthday. I got home in time to call him and wish him happy birthday. Then, that Friday, December 14, a shooter named Adam Lanza killed 28 people in Newtown, Connecticut. Most of them were children and teachers at Sandy Hook elementary school. That school happens to be about 20 miles from my home, and my three school-age daughters, like many of their classmates in our area, were afraid to go to school the next Monday.
“Look,” I said to them. “Horrible things happen all the time with no acceptable explanation. But equally mysterious wonderful things happen too. Look at what happened to Grandma. She didn’t get robbed. She didn’t get hurt. People helped her every step of the way. And instead of being locked up in an asylum, she ended up with three social workers looking out for her and she said it was the best day of her life.”
My kids went to school. Gradually, the shock subsided. My father lived another two years with my mother. I had to transfer my parents twice to new senior care facilities, before they found one where they felt welcome. We had a year of relative peace, in which they settled in to their new rooms, and it looked like they would grow old happily together.
Then one day my mother stopped recognizing my father. She insisted this strange man move out to the couch in their outer room. He was heartbroken, but accepted it. “Your mother is crazy,” he told me, by way of stoic explanation.
About a month later, getting up from sleep, he fell and broke his hip. A few months after that, he fell again and broke his pelvis. I took my mother to visit him in the hospital. She seemed all right when I dropped her off, but the next day, she couldn’t speak; she could only eat and gesture. She never recovered from that state of aphasia, and when the senior residence center insisted that she be hospitalized, to adjust her medication, I could not refuse. After all my efforts to avoid them being separated, my mother and father were now placed in two Connecticut hospitals, 75 miles apart — my mother for her coma, and my father for his pelvic surgery. He was still mostly cogent, and neither he nor I were sure that surgery was right for him. But what else could we do?
It seemed like my parents might never see each other again. Then the time came for their release from the hospitals, each to a nursing home for rehabilitation. I had no control over when they would leave or where they would be placed; it depended on their progress, on Medicare regulations, and on where there were empty beds. But by some quirk of grace, they were released the same week, and to the same facility near my house. My father had been placed there once before, and I knew the admissions staff; I was able to get my parents into the same room. My mother was still not speaking, and she gave no sign of being able to hear. But my father knew she was there. He could hear her breathe, and I could tell it meant everything to him.
Only a few days after being admitted, my father passed away. My mother lingered another two years, still without speaking — although she held tight to my hand when I visited. Just three months after my father died, in April, my brother was diagnosed with stage four pancreatic cancer. He lived until Labor Day. The co-op apartment where he lived, which he and my mother owned jointly, was left to her. For that reason, when she needed to move out of senior living to full-time nursing care, we had a place for her to live. The co-op board legally couldn’t prevent it, or they would have refused to let a live-in caregiver join her.
The day we moved my mother into my brother’s old apartment, she stirred and opened her eyes. She looked around and said, “He’s gone.” Then she fell back asleep. To my knowledge, those were the only words she said during the last two years of her life.
None of these events were under my control, and I never knew what would happen next, but somehow it all kept moving forward. I always felt like I was one or two steps behind.
None of these events were under my control, and I never knew what would happen next, but somehow it all kept moving forward. I always felt like I was one or two steps behind. I would solve the problems of the day before, knowing that new problems were coming that I would be completely unequipped for; and somehow I would muddle through, learning just enough to be able to reprove myself in hindsight, for the opportunities I missed to make things better, and the careless ways I made things worse.
And yet I felt at peace. In the end, my father and mother passed away in peace. My brother’s death was more difficult and untimely, but he was well-cared-for throughout. And I came out of it intact.
Now, of course, I know how lucky I was. My parents, my brother and I benefited from a whole attentive medical infrastructure, paid for largely (but not entirely) by Medicare. Hospitals were not overwhelmed. Lungs were not freezing and collapsing. My mother could communicate, at least to some extent, by holding my hand. I can imagine how much more complex and terrifying it would all have been if this story were taking place now. I admire the people working in hospitals now, more than I can articulate.
For I know how I would feel if I were in that role. I would, once again, feel like I have no control over the events around me. I would not know how to solve many of the problems that come up. I would have to figure things out as I go along, without time to stop and think. When I got home, I would have to resist beating myself up, in hindsight, for all the opportunities I have missed to make things better, and for all the careless ways I have made things worse.
And at the end of the day, I would have to let it all go. I would have to withdraw to that inner place where I think a lot of people go, when things are beyond our capacity to manage them. It’s not despair. It’s not exactly hope. Or even acceptance. It’s the sense that there’s a story going on, and we are part of it. We may not even be the main character. We certainly can’t control the plot. But it is pulling us, taking us somewhere, in a way that’s faster and more challenging than we had hoped for, and where there is the possibility of real loss, unfathomable and irretrievable loss — but always the hope that somehow, someway, we will get to the other side.