Brad and I made two quick trips to North Carolina from Tennessee in the course of the ten days Stephen spent battling what turned out to be a severe strep infection. The second trip was to say goodbye.
His five-year-old son, Tyler, played in a small conference room down the hall with Beth’s parents while the rest of us—Bill, Diana, Beth, Brad, Jay, and I—held vigil at Stephen’s bedside with his minister, Mike. We rubbed his arms and legs and talked to him for hours, though he was unresponsive. It felt interminable. I thought about my mother. How she should’ve been here, how she wanted to be. I was her second-team replacement. This wasn’t supposed to be the order of things. We had thought we knew our enemy, the disease we were fighting as a family. Stephen’s sickness blindsided us.
Finally his heart monitor slowed. The blips on the screen were farther and farther apart. And then they stopped. He was gone.
Shaking and weak, I walked down the hall toward the bathroom alone, my sneakers still tacky from dialysis machine fluid that had leaked out onto the floor of Stephen’s room at one point in the last couple of hours. I pushed open gray double doors and turned left down another hall, leading me to an unexpected sign: Chapel.
I took a deep breath and opened the door.
It was a small room with about eight chairs in a couple of rows. In the corner was a large cross, and kneeling in front of it was a woman. She turned and looked at me, and a smile spread across her face as though she’d been expecting me.
“Hi!” she said. She had dark brown skin and sparkling eyes and wore scrubs.
“Hi,” I said, new tears welling up. “Can I join you?”
“Yes!” she said. “Do you want me to pray with you?”
“Yes, please,” I said, sitting on a chair slightly behind her. It felt weird to be suddenly so intimate with a stranger. But her kindness and my desperation created the perfect opportunity.
“What happened?” she asked.
“My cousin just died.”
“What’s his name?”
“Stephen.”
She grabbed both of my hands in hers and bowed her head.
“Lord, we are praying for Stephen right now,” she said. I slid forward off the chair onto my knees alongside her.
“We thank you for his life, Lord. Please be with Stephen’s family now, God. May they feel your love, and know the power of your Holy Spirit.” As she spoke, I felt as if I’d walked into a little miracle. As if, for the first time in a long, long while, God was sending me a message through this woman, a kind of angel.
He was saying, I am still here.
After she finished her prayer, we hugged and I thanked her.
“Are you on a break?” I asked. The woman giggled.
“No,” she said. “I just ran in here for a minute.” When I left, I noticed her abandoned cart full of supplies waiting outside the door.
—
Dad and Mom arrived a few days later for the funeral. She was more manic than ever. If she saw someone crying, she wailed. If someone laughed, she cracked up in hysterics. She radiated an urgency that matched her confusion. She didn’t fully understand what had happened but seemed greatly impacted by the weight of everyone else’s emotion. On the way back to the hotel after the service and a reception, Dad was driving down Interstate 40 at about sixty-five miles an hour when Mom suddenly wanted to get out of the car. She screamed at him, unbuckled her seat belt, and opened the door. My father grabbed her arm while keeping one hand on the wheel, and was able to swerve toward an exit. Her actions could have killed them both.
At the hotel, she peed on the lobby floor.
—
Stephen’s death shocked us and reminded us that each one of us was vulnerable. But within this sobering truth, the angel in the chapel gave me a new resolve. I wanted to be a survivor, living in the spirit.
Daily life didn’t leave much room for divine spirit. Without realizing it, I’d turned my mom into two different people: Old Mom and New Mom. New Mom was an unpredictable wild animal. One night she attacked my father at the top of a flight of stairs, screaming, “Get out! Shit! I hate you!” and pushed him hard in the chest, startling and scaring him.
New Mom needed to be treated with care and caution.
But held captive inside was her doppelgänger, Old Mom.
“You think I’m terrible,” Old Mom said the morning after that tantrum, when Dad told her she’d crossed the line. She was quietly weeping, and he noted that she’d spoken a rare complete sentence.
“No, I don’t,” he said, and he meant it. He was talking to my real mother.
Occasionally she broke out and showed herself—in a burst of genuine laughter or a funny expression I’d seen my whole life, one that I knew meant Isn’t this ridiculous? I’d recognize her in her delight at eating a scoop of vanilla ice cream, or in her heavy sigh at seeing the ocean. She was the one who had once covered a wreath in bright white lights and hung it in the window of my darkened bedroom when I felt as if I were going to die at sixteen from mono. The one who had once gotten so engaged on the sidelines of my high school soccer game, jumping in the air and cheering so loudly we couldn’t hear the ref. The one who made that soulful spaghetti and meat sauce I loved, and reassured me after a hard day by saying, “It’ll make a great story one day.”
A good story wouldn’t ever fix her. Old Mom tormented me, wounded me with her silence, and sometimes left me sobbing in bed for hours. She was like a ghost who was fading fast. The harder I tried to grasp her, the more it felt as if she’d deserted me. New Mom was a cruel counterfeit, reminding me that the other one wasn’t gone, wasn’t at peace, but was trapped. While I treasured rare glimpses of who she used to be, I also felt haunted. I kept wanting to say out loud, If you could see yourself now, Mom, you’d want to die.
—
Early in 2012, we were all dealing with different degrees of guilt about what we could and couldn’t do anymore for her. My dad was sharply focused on the secret he was keeping from her: He’d finally started considering options for long-term care.
The guilt I carried was about urging him in that direction. I felt like I didn’t have an ounce of his patience. The truth I hated to admit was that I couldn’t stand to be around my mother anymore.
I’d been talking more often with my therapist, Karen, in California. I’d started seeing her off and on when I’d moved to Los Angeles right after college, and she’d been instrumental in teaching me how to become a healthy grown-up.
Karen is a joyfully spiritual person who loves to celebrate everyday life with glitter—in her short spiky hair, on her face, on her nails. She smells of sweet perfume and sports a small sparkling nose ring. She laughs easily and often, and at the same time points unapologetically to the hard lessons. For years she’s kept a little pillow on her couch that reads, If it’s not one thing, it’s your mother.
Karen had watched and helped guide my evolving relationship with Mom. A long time ago, she’d shed light on the ways my mother attached her needs to mine, so that I sometimes felt as if I had to take care of her, and had to fight to make my own choices.
Everybody I’ve ever met has had some sort of issue with one or both of their parents. It’s what keeps therapists employed. And I have no doubt that one day Huck and Jasper will complain about the mistakes I’ve made. But Karen and I didn’t harp too much on the past. We talked a lot about moving forward.
“Turn anger into compassion, and fear into faith,” she told me more than fifteen years ago. I scribbled it down on a yellow Post-it note and stuck it into my Filofax. For a long time, it was my mantra.
These days we were delving deeper into forgiveness, of New Mom for her behavior and of myself for my resentment. Whatever issues I still had with my mother were mine alone to handle. I’d hoped for an epiphany—that Mom would one day say, “You know, I really overreacted to your engagement to Brad” or “I regret letting fear overcome me when I got diagnosed” or even “Gee, I may have struggled with anger and a bit of de
pression when you were little.” But I had to accept I’d never hear her say those words.
We talked about long-term care. I told Karen I thought it was fair to assume that Old Mom, at her best, would be screaming at us to save my father’s life. Karen’s answer surprised me. Conjecture about what my mother would have said under different circumstances was irrelevant.
“We have to look at what is,” she said. Bottom line: Dad couldn’t see it, but the current situation had to change. With Karen’s prompting and encouragement, my siblings and I and our spouses scheduled another telephone intervention with my father.
“Be clear about your agenda and intentions for the call,” Karen said. “Give everyone a chance to speak.” We would outline for my dad our concerns, using specific examples. We would present possible solutions. We would suggest a follow-up plan. We set up a date for our phone meeting with my father in early March. He arranged for someone to be with my mom.
With everyone in three states linked on a conference call, Brad told my dad about an incident when my parents had visited us in our house north of Los Angeles. We were getting ready to go for a drive, and I’d handed my two-year-old off to my father when he asked how he could help.
“Can you please put Jasper in his car seat?” I said, and walked back into the house.
But Dad got distracted when he saw my mom wandering around in our front yard, crying. He sensed that she was on the verge of a meltdown. He put Jasper down in the driveway, next to the road where cars raced by, and walked away. When Brad came out a minute later, he was horrified to find our son alone so close to the street.
My father didn’t have much memory of this incident when we recalled it, and he felt awful. We told him about another low point during that visit, when Huck and I had found my mother banging on the glass windows in the house, frantic to get out. She didn’t know how to use the front door right next to her.
She’d recently been prescribed a little pink pill called Seroquel, which was normally used as an antipsychotic. The drug was a lifesaver, although Dad was a slave to the timing of the dosage. I told my father that I’d seen in California what she was like when he was a little late in administering it: For the first time, I’d witnessed her babbling in anguish, totally unaware that she wasn’t making any sense.
We laid out once again how concerned we were for Dad’s health and safety. We told him again that he seemed vacant, depressed, lost.
“We really miss you,” we said. “Even when we’re with you.”
Jay and I offered to look into long-term care in Tennessee, where the cost of living was lower than New York’s and my parents could be closer to their grandkids and us.
“It’s time to rip off the Band-Aid,” Jay said, meaning it was going to hurt all of us to move her somewhere else, but it had to happen. We were relieved at the end of the call when Dad finally said, “I agree.”
Jay and I started looking at “memory care”—dementia—facilities in Tennessee. I called a friend in the medical profession in town for a suggestion. My mother-in-law put me in touch with a friend of hers whose older parent had been put into assisted living in the area. My brother and I came up with a short list between the two of us.
The first place we visited reminded me of my grandmother’s nursing home from almost thirty years before. It smelled like overcooked lima beans and diapers. There were no windows in the main sitting area, where residents dozed in front of a Jeopardy! rerun on a flat-screen TV. Two women, with paper bibs tucked into their shirts, sat at a small square dining table. They stared ahead, one with a half-empty cup of coffee in front of her and the other with a bowl of untouched applesauce. Neither spoke. All of the residents looked older than my mother by about ten years. We left feeling depressed.
Another community was a little more cheerful. As we walked into the sunny living area—there were plenty of windows here—an upbeat female resident was playing the piano. She said hello as we passed by. Although the men and (mostly) women living in this place also seemed older than my mom, many appeared generally happy, or at least placid.
We checked out a room where a handful of residents were assembled for a current events symposium. Newspapers lay strewn on the tables and on a couple of laps. A younger worker at the front of the room was leading a discussion by reading the paper aloud. Some listened patiently, others slept. One man barked passionate opinions.
“That’s mutiny,” he said. “My head’s wrapped around that one. That’s the one.”
“You think so?” said the discussion leader, nodding as though he’d made a really good point.
We told our tour guide a little about Mom.
“So she can’t speak?” the woman said.
“Not much, no.”
“Is she able to show where she has pain?” she said.
We hesitated. “Well, not necessarily.”
Turned out that was a problem. She couldn’t be accepted there unless she was able to communicate.
In New York, Dad also encountered a glitch in his search for a place. The assisted-living residence that supplied Millie and other home health aides for my parents told him that if my mother were admitted, she’d have to spend a couple of weeks in a psychiatric ward first to get her meds worked out—meaning she’d have to be sedated enough to prevent attacks on other residents or staff. My dad couldn’t bear the idea of sending her from home to a hospital bed.
Other places he looked at were similar to the ones Jay and I toured. Dad got very sad in one of them, watching an exercise class led by two adults for more than a dozen quiet residents, most of them older than Mom and all of them seated.
One of the residents introduced herself to my father.
“Hi, I’m Spunky,” she said. “All the people here are boring. And stupid.”
Finally, though, after seeing three communities close to home, Dad visited a place about fifteen minutes from Rye that had opened recently and could pass for a good hotel. Because it was new, it still had a vacancy. A friendly woman greeted visitors at the reception desk and kept watch over the two-story-high hall. Its centerpiece, at the foot of a dramatic staircase to an upper floor, was a gleaming grand piano. A rainbow-colored jukebox was playing “Boogie Woogie Bugle Boy of Company B,” the Andrews Sisters hit from 1941, the year Dad was born. Patients like Mom didn’t live on this floor, though. They were on the locked-down fifth level, which offered the most intensive care.
My father was invited into a small conference room. He sipped decaf coffee at a table with Sarah, the director of family services, as well as the executive director, Courtney. He knew by now that the first visit to any such community involved a sales pitch, and staff members would be on their best behavior. So it was important to see beneath the glitz. But these women seemed remarkably down-to-earth.
“Tell us about Linda,” Sarah said.
“We’ve been married forty-five years,” my father said. “Until recently, she’s been my close partner in everything.”
They wanted to know about him. “How do you feel?”
He was tired, he said. “My grandson told me I look old.”
“What will you do after she enters long-term care?”
“I want to go away. Be alone.”
He wondered, What do they think of me? He scanned their faces. Sarah’s eyes were filled with tears. Her father had died of dementia. The questioning continued. For one of the only times since Mom’s diagnosis, my dad cried.
They brainstormed with him about how he could break the news to his wife that she’d be leaving home.
“There is no formula,” one of them said. “No easy way.” Often families chose to stretch the truth about what was happening, opting instead for what they termed “fiblets,” little white lies to help residents ease into the truth. You’re going to stay at this nice hotel for a week. Or Just try it to see if you like it. Often this seemed the kinder way to go.
“We’ll help you and Linda through this,” they said. Furthermore, they’d be able to t
ake her without an extended hospital stay first. Their advanced license allowed them to offer many of the services that nursing homes could. Mom would never have to move.
After two more visits, my father was sure he’d found the right place, but he knew he couldn’t pay for it on his own. Brad and I offered to offset the cost of care, and that clinched it. He and I chuckled to ourselves over what Mom would’ve said all those years ago during our tense engagement if we’d told her that, on top of everything else, my future husband was going to be the one to make it possible to send her away one day. But my heart went out to all the many people in our situation who didn’t have the means to even consider a choice like ours.
—
It was settled. Dad wouldn’t be moving to Tennessee. Jay and I would miss having them close to us, but we realized that our father would probably adjust better if he stayed within his existing community. Mom was scheduled for the move less than two weeks later, in mid-April.
Aunt Diana flew in a couple of days beforehand, although Mom didn’t yet know why. Ashley came home as well but hid at Sheelah’s house, the site of my parents’ retirement party years earlier. We didn’t want my mother to realize what was happening until right before moving day. My father asked my brother and me not to be there, because he thought it would be harder on my mom if all of us showed up only to deliver her to a new place and leave her there alone.
I didn’t fight him on this decision. I was filled with a mixture of guilt and relief. Guilt, because of course I wouldn’t physically be there for one of the most difficult challenges we had ever faced as a family. And relief, because I wouldn’t have to feel firsthand the pain of committing what felt like a great betrayal. I didn’t realize how hard it would be to experience it secondhand, from so far away, as a powerless witness.
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