My father continued with his treatments over the next two months, and Nancy became more vigilant. She made sure he ate, drank the liter of water prescribed before radiation every day, and got rest. She listened to him, laughed with him, and helped him restore his battered sense of humor. I went from resenting her the night we couldn’t reach him to feeling profoundly grateful that Dad had someone he loved by his side.
—
The hospital visit taught us it was time to update my mother’s advance directives. Dad filled out a revised New York State MOLST form (Medical Orders for Life-Sustaining Treatment). As he had in the past, he checked the “do not resuscitate,” or DNR, box, and another box for “comfort measures only,” including the offer of food and fluids by mouth and meds to relieve pain and suffering. He vetoed several interventions, such as further trips to the hospital, unless pain for severe symptoms couldn’t otherwise be controlled. He asked to be consulted before any antibiotic use.
After the seizure, which showed the progression of her condition, she qualified for hospice care, a Medicare-backed end-of-life program focused on minimizing pain and discomfort. She was supplied with a new hospital bed and a high-backed wheelchair, an oxygen tank in case she needed it, and all incontinence supplies formerly paid for by my father. A one-on-one nurse supplemented the staff on her floor for four hours a day, five days a week. Though the term hospice conjured up a sickening reality for me that we were in the last phase of Mom’s disease, I was nevertheless grateful that her care was tailored specifically to her needs.
—
The next time I saw Nancy, a month later in New York, she and my dad and I went to dinner. I sat between them as we rode to the restaurant in a cab. Nancy had recently visited Mom for the first time. She was surprised at how painful it was for her to see her partner’s wife in that state. But they laughed together and held hands.
“It’s not fair,” Nancy told me in the car. She was crying. “It’s not fair, that she’s in there and I’m out here with your father.” She shrugged, and then shook her head, looking out the window. I admired her vulnerability and courage to talk about what we were all thinking but not saying.
“Everyone’s been focused on Dad and us kids,” I said. “What’s this like for you?”
“It’s hard,” she said, and paused to think for a moment. “But I often find that messy, complicated situations bring people closer than we would be otherwise. Your mother is a part of my life now. And she always will be. I am your ally, and hers.”
—
The garden at Barbetta, a restaurant on West Forty-sixth Street, was lush and cozy. We sat at a table near the back wall. Nancy and my father had separately dined there in the 1970s. Our cheeky Italian waiter said he remembered Dad from decades ago.
“You were with a different woman then, no?” he said.
The fact that this stranger somehow picked up on that truth, even if he was just guessing, sent us into hearty, healing laughter.
Later, my new ally and I stole away to the bathroom together. Both of us sensed we needed to talk privately, girl to girl.
“Thank you,” I told her as we stood beside the sink in the small space. “You know, the idea of my dad dating was…” I took a half step back and crossed my index fingers in the air as if warding away an evil spirit. The symbol seemed clearer than the words I had to finish the sentence. Nancy nodded and laughed. I took a deep breath.
“But if I could have imagined the ideal person for him now, it would have been you,” I said. “I am so grateful.”
We hugged. I meant it.
I thought this story would end with Mom’s death.
She didn’t die.
In fact, she rallied. She had no further seizures. Her vital signs were stable. Her blood pressure was normal, her heart strong. She fared so well with hospice care that it was discontinued after six months, just a few weeks before Easter.
One of the early days after the hospital visit, my father met with a Reiki therapist on the couch outside my mom’s room. Dad asked her how his wife had reacted to the treatment she’d just performed, a kind of laying on of hands.
“I don’t know,” the woman said, looking troubled. “Linda wasn’t very responsive. It’s almost as though she doesn’t have a soul.”
She appeared to regret her words as soon as they’d left her mouth. But I was infuriated when I heard the story. How dare this stranger suggest dementia had robbed my mother of her eternal spirit, along with everything else? Just because she wasn’t able to perceive Mom’s soul didn’t mean it wasn’t there.
Or did it?
I was embarrassed to admit that I understood what she meant. Mom’s eyes—“the windows to the soul”—were often vacant now. I believed that we each had a consciousness, or self, that transcended our earthly bodies. I had faith that if my mother died, her spirit would survive. But now I started to wonder, where was that soul in this purgatory of dementia? Sleeping? Awake and vibrant in ways I couldn’t see? What happens to consciousness when the brain deteriorates?
Mom used to embrace the possibility of miracles, but she had a harder time believing in God. She wanted to, and envied people who did. She celebrated the divine gifts of family, laughter, mystery, discovery, science, love. But not the afterlife.
“I just don’t know if I buy it,” she would say. I respected her honesty.
—
As her disease progressed, I sometimes wondered if PPA could be a cosmic lesson crafted just for her, a weakening of her rational mind so she could let go and discover what essential truths lay beyond reason. I wondered why she was still alive, three years after being moved to the dementia-care community, when her doctors had pointed to statistics suggesting that she’d already outlived many with her condition. Maybe she was ready to die but was afraid. Maybe she was holding on for something. Maybe I could help.
During a visit, I asked my father to leave Mom and me alone in her bedroom. She was in her wheelchair, head down, hands in her lap. I knelt in front of her to make eye contact.
“Mom,” I said, holding on to her knees. “Many, many people love you deeply. Me especially.” Her eyes opened wider, as they often did when someone spoke to her, and she seemed to look at me in wonder.
“We will always love you and celebrate you. No matter what.” Her gaze drifted to the side as though she was processing what I was saying. I continued.
“I was wondering,” I said. “Are you ready to leave this place?” She straightened up, then glanced out the window and back to me, as though she thought she was supposed to do something but couldn’t understand the directions. I realized I had to be more specific.
“What I mean, Mom,” I said, “is that when you are ready to leave this world, it’s all right. We’ll be okay. And I believe that you’ll be okay, too.” She took a deep breath and sighed. A tear rolled down her cheek. Was she understanding me?
“This has been hard,” I said, trying to mirror what I guessed she felt. I held her wrinkled, bony hand in mine, waiting, giving myself time to settle on what I had to say. And then I went on.
“I believe, Mom, that when you’re done here, when you’re ready to be free of this body, that you are gonna get to dance. And party. And fly. And be healed.” She gazed above my head, as though something amazing had just caught her attention. A vision? An angel? Or just a spot of dirt? I glanced behind me. Nothing but a white wall.
I sang one of her favorite songs. She still seemed to be uplifted by music.
“Amazing grace, how sweet the sound…” She stared above me for the length of the song. I’d not seen her this alert in a long time. I had more to tell her. I took another deep breath.
“I believe that God loves you, Mom,” I said. “And that when you die, your soul will live on. I believe that you’ll go to heaven.” And my mother looked right at me, fully alert, and said the first clear sentence I’d heard from her in more than a year.
“No, I won’t.”
The disappointment that my
mother hadn’t embraced a new belief or answered my larger “why” question paralleled my delight over getting a rare glimpse of lucid, authentic Mom. Part of her was still in there.
She’s not ready to die yet.
—
I tried to connect with her again when I went to see her next. This time I came with something I knew she used to believe in: bourbon. Brad had given me an appreciation for what was once Mom’s beverage of choice.
He told me that bourbon is like a time machine. The final result is a combination of factors. Each batch is different and contains memories, of the crop that year and the quality of the grains. Bourbon is a different kind of time machine for me. One sniff takes me back to my childhood. Maybe it would do the same for Mom. She deserves a little party, I thought.
So I snuck a silver flask full of Evan Williams 1783 onto the fifth floor. Debby probably would’ve let me bring it in openly, but I didn’t want to ask. Besides, I thought, Mom would appreciate a covert operation. Brad chose Evan Williams for me because it was the same company that made Heaven Hill—the cheapest bourbon available to my parents when I was a kid. This version would possibly be the best she’d ever tasted.
I didn’t know if it would interfere with her current meds, so I decided to pour only a few drops onto a spoon. Neat—no water, no ice, no soda. First I held it up to her nose. Bourbon sometimes burned my nostrils when I tipped my nose into a glass. I wondered if it would do the same for her on the spoon. Dementia patients often lose their sense of smell. She didn’t react.
Bourbon usually singed the tip of my tongue when I drank it. It made my eyes water. Mom used to have it diluted with ice every night. Would she spit it out now or want more? I was a little nervous as I brought it to her lips. She opened her mouth, as she did anytime something was put in front of it, and I tilted the caramel-colored liquid onto her tongue. I waited.
Nothing. It was as though I’d given her a sip of water. The drink puddled in her mouth, and eventually she must have swallowed it because it didn’t dribble back out again. She stared straight ahead without any reaction.
Instead of embracing New Mom the way I’d been learning to do, I went home this time feeling sad. Maybe we would never reconnect again in a way I could understand. And my questions remained: Why was she still here? Sometimes lucid but often not? What was the larger spiritual lesson in all of this? What was I supposed to do now?
When I told my therapist, Karen, about the bourbon experiment, the heaven conversation and Mom’s response, and my questions as to the whereabouts of her soul, she told me, “Consciousness is there in ways you can’t understand or explain the way your ego wants to.” She added that I was focusing on the wrong thing.
“These questions are about you, not her,” she told me in her no-nonsense way. “You’re projecting what you want to see onto your mother. The pain, the joy, the connection or lack of connection—all of it.”
It’s what many of us do. “Linda was happy today,” her caregivers say. Or “I think she missed you.”
“Your mom seems calm,” Dad reports after a visit.
“Mom was really attentive,” I tell Dad after our God talk. To think so makes me feel better. And when I guess that she isn’t clued in with me, I feel sad. But again, I could choose to project something else.
“Here is your work,” Karen said. “Don’t look at what you’re not getting from your mother. Look at what you are getting.” It was a lesson I thought I’d already learned. But it was time to delve deeper.
—
This is what I came up with: My mother is not only presenting me an opportunity to love unconditionally, she’s also allowing me to practice being comfortable with what is uncomfortable. To grieve and also embrace what is broken. To know that some days I can receive who my mother is now and some days I struggle with it. To allow that two opposing thoughts may exist in my head at the same time.
I want things to be the way they were, and I am relieved that they never will be again. I regret I didn’t feel more acceptance from my mother at times in my life, and I’m grateful for the lesson she is giving me now in accepting myself. Jay put it this way: “Letting go of what she used to be has been the hardest act, and yet the most liberating.”
This emotional clash within me feels like the eagle pose in yoga. You wrap one bent knee around the other and hook your foot on the back of your standing leg. Then you twist your arms in a similar fashion and bring your hands together in front of your face. Oxygen and circulation are limited. But still, you try to breathe and avoid falling. As you stare at your sweaty self in the mirror, you attempt to smile and stay present, even when you want to quit. Many days I see my red-faced struggling self in the mirror, and I don’t feel like the regal bird this pose is named for. But some days I kind of do. I accept this.
My dad told us a story about running a strange article in Omni magazine, where he was the editor in the 1980s. It was about a wild plan from a scientist who suggested that someday we might send a flotilla of insulated spaceships to the sun to collect its plasma and truck it back to Earth. It would provide all of our energy needs. The topic was typical of the publication, a mixture of science and science fiction. An Omni staffer called a physicist at Princeton to weigh in and provide balance. What he said at first wasn’t surprising: “It’s not gonna happen.”
But then he went on: “What’s going to happen will be much more fantastic than that.” It was a line my father quoted often as we were growing up, and it became the core of a kind of optimistic surrender to what we couldn’t know. In accepting our limited wisdom, we allow for infinite possibility.
—
Nancy sent me some helpful words one day after I told her that I was struggling with writing a difficult chapter in this book. They were from the Leonard Cohen song “Anthem”:
Ring the bells that still can ring. Forget your perfect offering.
There is a crack in everything. That’s how the light gets in.
The lyrics became my anthem as I sought to make sense of what’s happened to my mother, my family, and me. Many other people, some I hardly or never knew, aided my quest.
I learned that even near death, some people with dementia can communicate their love. I was able to find new ways to connect with my mother. Then I learned that the messages I got from her followed no deathbed script, suggested no happy or sad ending. I realized that every time I cast my mother in some sort of role—New Mom, Mom headed for heaven, Mom with no soul—real life intruded to say, You can’t really know her, can you?
She’s more of a puzzle now than she was when I began writing this book. But lately, just when I think I’ve lost her, I find her again in small things and brief moments. They deepen the mystery, and feel something like miracles.
—
It was during a talk with Veronique at the Fox Foundation that I first learned how Mom attached gold paper clips to mailings for people she wanted to make feel special. After I spoke with her, I sat writing for a couple of hours, thinking about the significance of this simple tool, meant to hold things together. Finally I got up to stretch and get a drink in the pantry off our kitchen. Something flashed at me from the middle of the floor: a gold paper clip.
We use silver paper clips. Red and blue and green and yellow paper clips. Never gold. I’m sure we probably had a few in the house, perhaps from a Fox Foundation mailing. Veronique told me that Mom’s gold-clip initiative had become a tradition. But what brought it to the pantry on that particular day? I showed it to Huck, who had no idea that it carried deep meaning to Mom, and now to me.
“Oh, yeah,” he said, “I found that in the bag”—an old recycling sack hanging on the back of a chair in the kitchen. Of course it could have been just a coincidence. But I took it as a sign from my mother to me. We were still connected by a bond as enduring as precious metal, but much more fantastic than that.
A couple of months later, I found another gold paper clip, and then about a month later, another. Sure, I was looking har
der for them, but each showed up somewhere it wasn’t supposed to be: on the floor under a dining table in a friend’s house, in the little cup holder of a treadmill. I found the most ornate gold paper clip I have ever seen in the back of my car, under the seat. It looked like an elaborate treble clef.
“Oh, yeah,” Huck said. “I got that from my music teacher last year.” But I took comfort from what I chose to believe. It was left behind to travel with me.
One night in the car on the way home from a great dinner in downtown Nashville, I was telling my friends Tracie and Missy about the wondrous paper clip sightings.
“I’m calling it a God wink,” I said. “It’s as if God is winking at me and saying, I’m here. And there is more going on than you realize.” I remembered that there had been other God winks in my life: my mother spewing Grandpa’s colorful profanity at the moment my eight-year-old self was asking him for help. The woman waiting for me in the hospital chapel around the corner from my cousin’s room right after he died. And now the gorgeous gold clef at my side in the center console of my car.
“Yes! A God wink!” my friends cheered.
And at that moment we rounded a curve and our headlights illuminated an albino deer staring at us on the side of the road. Ever since I had moved to Nashville, I’d assumed that stories about this regal creature were fables. By some estimates there are only a few dozen of them in Tennessee, and most residents would be lucky to see even one. But there it stood, still and majestic, pure white, a giant rack on its head. We gasped and reached out for one another. Are we all seeing this? There was no doubt for any of us that this was an exclamation mark on our conversation.
That is where the light gets in.
—
Mom was getting her nails done when Huck and I arrived for a visit recently. This activity is a challenge because it’s hard for her to sit still. The technician was a master at it. He wore rubber gloves and worked with speed and precision. He was blowing warm air on my mother’s right hand when we sat down with her.
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