January 21, 2011
By KAREN M. THOMAS
On a warm June night, my mother is standing in the dark in her New Jersey home. Her white cotton nightgown is illuminated by the streetlight shining through the kitchen window.
“What are you doing, Mom?”
“I couldn’t sleep. I’m going for a walk,” she says.
It’s only then I notice her sneakers. I touch her arm.
“Mom, it’s late, too late for a walk. It’s time to sleep now. Let me help you back to your bed.”
“Is Barry home?”
“No, Mom. Not yet.”
She turns to me. I see it then, the worry in her eyes even as she walks with me out of the darkness. Her words say what we are both thinking.
“I miss Barry.”
Barry is my brother, the youngest of Beryl and Roderick Thomas’ three children, a laid-back handsome man with milk chocolate skin and salt -and -pepper hair. We are 11 months apart, our close relationship nurtured decades ago during a happy childhood.
He is the baby, I am the middle child, and my brother Rod is the oldest. This is our birth order, but our roles have changed. Barry, who never married, is guiding us. He stands where I once thought I would as Mom’s only daughter. As Mom’s caregiver, Barry calmly and capably navigates her world as dementia steadily steals her away.
He is part of a growing number of men who are taking care of their aging parents, according to several recent studies. The men have stepped up. That’s in part because some have no choice, thanks to smaller families, more women in the workforce and siblings separated by geographical distances.
He has what he calls a front -row seat to Mom’s decline. She can no longer fix her food, dress, drive, plant her flowers or even read the tons of books she still lovingly stacks and strokes each day.
Barry is on a much-needed vacation with my husband the night my mother is missing him. I have traveled from Texas to care for her while he is gone. My visit is my small part of doing what I can to take care of Mom.
My mother, now 79, is the proud daughter of Jamaican immigrants. She is well-read, well-traveled and fiercely independent. When my dad died nearly 34 years ago, my mother decided she wasn’t going to let her family lose its footing in a hard-won spot in the black middle class. She went back to school, earning first a master’s degree and then a doctorate. She became a tenured nursing professor and paid off the mortgage. She roared and we watched, bathed in her strength, courage and love.
Now she must rely on her youngest child for her most basic needs.
A SMALL VOICE
Before I agreed to marry Dale, I told him that one day my mother would come live with us — he had to be OK with that. It was part of my upbringing. At one point in my childhood, we lived in a Bronx, N.Y., home with four generations of women — my Mom, Grandma, Nana and I.
Dale agreed, and in 2001, the year my mother turned 70, we bought a house in Arlington with an extra bedroom. A year later, on a trip to visit my mother, she lost the keys to the house she shared with Barry. First, she silently searched for them, then frantically. Suddenly she fell apart in the middle of the living room floor.
“Barry is going to be mad at me,” she said in a small voice I didn’t recognize but would come to know.
It turns out this was not the first time she had lost the keys. Losing them told us what she could not. My grandmother had suffered from Alzheimer’s disease. It’s an illness my mother feared would one day rob her of her memory. Alzheimer’s disease had, in fact, begun to do exactly that.
With the extra bedroom waiting, I assumed Mom would come to live with me. I assumed I’d figure out a way to juggle my young family, demanding job and caring for her. I assumed she would somehow adjust to Texas, a place foreign to her East Coast roots.
But Barry wasn’t thinking about assumptions. He was listening to Mom. Wouldn’t it be best, he posed, that she stayed in her New Jersey home for as long as possible? She loves that house, painted a cheery yellow and the site of so many family gatherings. She had friends, family and her garden. There were museum trips and the theater — the occasional foray to New York City, all things my mother loved.
I don’t remember exactly my response. I know a part of me breathed in relief, while another part filled instantly with guilt. I do remember what my brother said next.
“Karen, you have a family,” he said. “You’re doing what you’re supposed to do. I got this.”
When Barry and I were little kids in the Bronx, we spent hours outside, running up and down the block. My mother said my brother suddenly would call for her.
She rushed to the window, sure that something was wrong. Instead Barry would smile and wave.
He was good to go then, off on his bike or his feet.
“He just wanted to make sure I was still inside,” Mom said then.
As we got older, Barry grappled with school. While I devoured books, he struggled to read. My mother placed him in tutorial programs, but education would never come easy. Back then, no one routinely tested, but my mother later suspected he had dyslexia.
After high school, Barry tried several professions, eventually moving back into Mom’s house. He finally settled on being an optician, a career that has stuck.
I admired my brother’s ability to let go of one dream and take on another. I admired his ability to live on tiny salaries and yet pay cash for things that brought him great joy — a custom guitar when he began to play jazz, an Italian racing bike and a Corvette that he still spends hours customizing. He maintains a small, tight circle of friends, most of whom he has known for decades. His laid-back personality and methodical way of approaching life were the opposite of my frenzied pace.
Over the years, our telephone calls increased. We visited each other when we lived in distant states, and our childhood bond became an adult friendship.
After her diagnosis, my mother took charge. She gave us copies of her will. She told us a nursing home was fine when it was time — just make sure there weren’t any bugs in her bed. She even asked us to identify what we wanted from her home, a sad task that the three of us ignored.
At first, it was easy, but then my mother began to take spills. She lost the ability to drive and to travel alone. Her friends began to slip away when her ability to hold a conversation declined.
The caregivers arrived, first a few days a week, then every day when Barry realized he couldn’t bear to bathe his own mother. Now he does almost everything else — cooks her gourmet meals, makes hairdresser appointments and makes sure her nails are freshly painted. Each spring, he plants her garden.
Barry and I call each other constantly. We strategize over Mom’s behavior, medical care and finances. Sometimes my brother just needs to chat. So do I.
I used to regularly call my mother for guidance and connection. Now just the mere act of reaching my brother helps to soothe my sadness. He has taught me, over the phone, the fine line between hearing and listening.
On Easter morning four years ago, my mother announced during a telephone call that she wanted to take me to the Amazon for a cruise.
“She cannot travel that far,” I screamed to my brother on a later phone call. “We will both be lost.”
Later that day, with Mom out of earshot, Barry called. “The point is this,” he told me. “She wants to do something with you. It doesn’t have to be the Amazon. You figure out where you want to go.”
I heard my mother, but I did not listen. It wasn’t about the jungle. It was my mother’s way of pulling me close. My mother, the nurse, knew then that the clock was ticking. Maybe it would be a year, maybe more, but her brain was forsaking her. One day she wouldn’t know me. She’s known all along. Maybe I did, too. But it’s Barry who made me listen.
He says he is at a place in life where taking care of Mom makes sense. His job is not overly demanding. He likes being home, sitting in his room, working on his music or washing his Corvette in the driveway.
My brother seems to have it all under control. I once printed out an article about an elderly man with Alzheimer’s disease who lived with his adult son. The son took the man to the beach. The father drowned. Witnesses said that the son did nothing to help his father, that the son seemed overwhelmed by his caretaking responsibilities.
I meant to show Barry this article. I wanted him to know it was OK to say when he was overwhelmed.
I learned the hard way that grief cannot be tamped down, that sooner or later it spills out.
In 2007, on Christmas Day, I began to set the table. Mom, who came to visit, wanted to help. I passed her the silverware, but she just stood there. It took me a few moments to realize that she couldn’t remember where the silverware went. I excused myself and made it to the bathroom. I turned on the shower to drown out my sobbing. My mother, once the holiday queen of our family, couldn’t remember where the fork went.
My husband and children came into the bathroom, but I couldn’t explain. I couldn’t talk. I could barely breathe. I saw the fear in my children’s eyes and the helplessness in my husband’s face. He held me.
I have a family. What did Barry do when he felt sad, when his grief spilled out, I finally asked?
“It sneaks up on you,” he acknowledged. “Does it get me down? Yes, it gets me down. There are times when my eyes tear up. Even at work. When I need that quiet time to sob, that is my shower time. Tears are in the bathroom.”
I threw the article out.
LEADING HER TO SAFETY
The Sunday morning after Thanksgiving of 2009, I woke to the sound of running water, slamming doors and shuffling feet.
My brothers and my mother had come to my house for the holiday. It had been years since we celebrated together. The days were filled with outings and laughter. Maybe we had Mom out too late the night before. Maybe this trip was too much, a stretch for someone who needs quiet, routine and a familiar home.
My mother woke up and needed to use the restroom. She didn’t make it. Rod, my older brother, heard her fumbling in her room. He walked in, saw what happened and walked across the house to get his baby brother. Then Rod retreated to the den, the door shut.
It was Barry who led Mom to safety, placing her gently in the tub. When I walked into the room, I began to bathe her, talking to her as I often do on the phone, reassuring her that she was safe and loved. When I could no longer contain my emotions, I stepped out into the hall and cried.
“I know, I know,” Barry said when he saw me there. I returned to my mother and he returned to cleaning the room with my husband.
My mother has always been the family’s backbone. In many ways, she is still the glue that bonds us. I grew up on her strength, courage and love, lessons I try to replicate in my own house as I raise my girls.
I used to be mad at my older brother Rod’s inability to accept Mom’s illness, but I now understand his distance is fueled by grief and fear. I am learning to face my own fear — I share Mom’s long-ago worry: Will this happen to me?
I have learned to see my baby brother differently. Once a mama’s boy and a beloved playmate, he is now our family patriarch. He is leading us in this painful journey. Because of him, I am beginning to understand the grace and simple power of love.
WITH NEW EYES
When I arrived in New Jersey so Barry could take his June vacation, I saw my childhood house with new eyes.
Barry showed me the breakers he turns off so Mom can’t turn on the stove. He showed me the lock on the deck door so she cannot wander. He told me to turn on the classical music to help her wind down at night and what to listen for early in the morning or in the middle of the night when her mind will not let her sleep.
I once marveled that he knows all of this. Now, I rely on him to tell me how to help. As I take Mom back to bed from that dark kitchen corner and help her climb under the covers, I know Barry cannot do this forever. None of us can. Mom’s illness is getting to a point where even he may not be able to keep her safe. There’s an edge now in his voice when we speak on the phone. At the end of each conversation, he steers me to the inevitable.
“Karen, when would be the best time to come?” he recently asked.
“Come” means Mom might move to Texas. “Come” means that she will leave that cheery yellow house for a nursing home. But “come” means something else, too. If Mom comes here, Barry says he will, too.
“I don’t want to stay in our childhood home without Mom,” he told me.
I am surprised and happy. This time I feel only relief — not guilt. It feels right to finally be in the same place. Perhaps one day my older brother will follow. If Barry needs to, he can take Mom’s bedroom in our house. Maybe then I will have a chance to give back to my brother what he has given to me.
Deep into that June night, I hear the alarm beep on the front door. My brother has returned from his trip. When I hear him go downstairs to his room, I roll over and fall into a deep sleep. Mom is in the kitchen when I wake up.
“Is Barry home?” she asks, the same question she has asked each of the six mornings I have been here.
This time, I say yes.
Soon after, my brother walks into the kitchen. My mother smiles and holds out her hands to him.
“Hi, Barry,” she says.
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