Author Deborah Cohan details the obstacles she overcame while slowly losing her father to dementia.
Letting Go (Vanderbilt University Press, 2015), edited by Donna King and Catherine G. Valentine, questions modern attitudes toward achievement. At a time when women are being exhorted to "lean in" and work harder to get ahead, this book encourages both women and men to "let go" instead. It also explores alternatives to the belief that individual achievement, accumulation and attention-seeking are the road to happiness and satisfaction in life.
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I hate yellow gold. I always have. It looks gaudy and cheap to me. My skin is pale, my eyes green, and my hair almost black, and silver looks better on me. I like chunky silver bracelets, cuffs, or bangles, and a few big silver rings with African motifs. I also hate thin pens, the ones that are hard to grip. I prefer thicker pens, the ones that others often seem to dislike because they write more like magic markers. So I am not sure why I am obsessed with my dad’s pen. It’s gold; it’s thin; it’s one of those fancy Marc Cross pens that businessmen have used for decades. The powerful kind of pens that close deals, sign contracts, and make things happen. In my dad’s case, he made a living wrestling with words, arranging them just right into catchy ad campaigns. With his pen, he scoured others’ prose and made relentless revisions of others’ ideas, and more privately, he wrote my mom and me love letters and poetry, hate mail, and then apology letters.
On July 12, 2012, the movers were at my home in Boston to box me up and move me to South Carolina. The next day they would load everything onto the moving truck, drive off with it, and on July 15, I would get on a plane with one suitcase, my backpack, and my mother, who had agreed to join me, to help me unpack and get settled in my new home. I had decided it would be wise to pack certain things myself — like the contents of my jewelry box where I have been keeping my dad’s pen — but the packers convinced me that the more I let them pack and transport for me, the easier. I tend to over-pack anyway so this made sense. I found an oversized, red silk drawstring jewelry bag, dumped the contents of the jewelry box into it, and handed it to one of the men.
I arrived in Bluffton, and a few days later so did my stuff — all 149 boxes and my Nissan Sentra. As I unpacked, some things surprised me, things Mark, my ex-husband, and I had not used that had been stored in boxes in our basement from my dad’s place — boxes of slides from childhood trips to Europe, childhood diaries, letters that my grandmother had written to me, letters that my mother had written to my father, and so many photographs. It was intriguing figuring out how to repurpose furniture and objects in my new home. That spirit of reinvention inspires me. We unpacked my bedroom, but I couldn’t find the pen in the jewelry bag. Then I went to unpack my study and set up small colorful pails of pens and pencils on my desk, the same desk my father used years ago, and I still could not find the pen. How could I suddenly have lost the one thing that I have held onto for the more than seven years since my dad has been sick? How could I be that careless and disorganized? How was it possible that I had doubles and triples of some things, that I had every pashmina, every book, and way too many spatulas, and yet I could not find this pen? How have I managed to lose the one thing that seems most my dad, that tethers me to his work and the life of his mind?
I understand my dad lost his mind — after all, that’s what the diagnosis of dementia is all about — but I have not lost my own memory of my dad’s mind with all its crevices of brilliance, darkness, and madness. All I want is this pen. For me, it represents a link to a writing life, a creative life, a juicy life, and a prosperous life. It is also a link to my dad’s healthier days, an evocative object that helps me recall his vigor and vitality and robustness. I have other objects I know he used or enjoyed when he was living independently, but many of these are objects of leisure. My dad’s words are what I remember most, and the pen is the tool to craft and mix and blend the words that I long for. The very one he used.
Pens also remind me of a time less tethered, a time when a machine wasn’t the mediating force between the brain and the hand and the words on the page. I intuit that I may never use this pen to actually write. I just want it around to anchor me to creativity, to my dad’s and to mine.
I remember how my dad looked hunkered down over the oversized dining table in our house, working on advertising slogans and marketing presentations for prospective clients late into the night with multiple yellow legal pads and his gold pen. I can see the way his right hand gripped the pen, and his left hand gently yet with a sense of firmness held the paper in place, his head cocked slightly to the left; all that was obvious to me was how words looked like they effortlessly flowed out of my father and onto the paper. Occasionally, he made notes on the margins of the papers for his secretary so she would know to flip the paper over and follow the arrows for inserting section A, B, or C. This was the seventies and eighties, before my dad used a computer with the cut and paste functions. But when you would read my dad’s work over in its entirety, it was seamless. The whole scene conjures up an intense sense of work, well, actually of procrastination. I relate to this. In college, I often worked on papers until two, three, and four a.m. and have retained something of my topsy-turvy, twenty-something routine even today. In recent years, I have tried writing in the mornings and afternoons, yet there is still something about the night, the way creativity seems to linger more quietly yet swirl around more urgently and magically, that pulls me in, that gives me a surge. My dad was critical of my schedule, thinking I stayed up far too late and slept too much of the day away, and I often internalize that same criticism, wishing in some ways that I was a true morning person. Perhaps he was trying to get me to learn from what he perceived to be his own mistakes.
But the iconic image of my dad propped up with his pen in the middle of the night simultaneously moves me and arrests me. My dad at one with the pen: the relationship is reassuring in its durability and reliability yet unsettling in its relentless quest for perfection.
Two summers before I was to move to my new home in South Carolina, Craig, my dad’s therapist, called and asked me to bring slides for my dad to see, so I loaded up the trunk of the car with boxes of slide carousels, rented a projector, and made the drive to Cleveland. I didn’t know it then, but that would mark the last visit I would ever have with my father. A talented photographer with a keen eye, my dad had taken all of these pictures through the years, and Craig had decided this would be a good activity to share together. Craig, my dad, and I made our way to the family lounge to go through the slides — some were from childhood trips with my mother to the French Riviera, the English countryside, Scandinavia, Italy, Carmel, Big Sur, and Maine. Others were pictures from concerts, botanical gardens, and museums. I was concerned about what it meant for my dad to be inundated with all these images. As it turned out, the projector didn’t work and we were unable to view the slides. So Craig wheeled my dad upstairs while I loaded everything back into the car. When I returned to Dad’s room to find them, Craig took me aside and quietly whispered, “Your dad broke down a little.”
I asked, “Why? What did he say?”
Craig told me that my dad had said, “You’re not gonna leave me, are you?” and then suddenly Craig burst into tears, covered his mouth with his large hand, and ran out of the room and down the hall. I felt compassion for his sense of shame in crying as a therapist, for his need to rush away from me. I imagined there might be unconscious father/son dynamics going on and potential countertransference issues for him in letting go of my dad. There are times in my own work with college students, particularly when teaching about violent trauma and its effects and seeing how it resonates with too many of my students’ life experiences, that I cry or hold back tears or speak with a broken voice, and more accurately with a broken heart.
Looking back, I was always caught up in my dad’s writing, and especially in its slickness and precision, qualities that went missing upon my dad’s diagnosis of dementia. I remember visiting him at the dinner hour on a Sunday night at a different nursing home in Cleveland, probably in 2006 or so. He was seated with a woman named Rose. The other woman assigned to the table was Ann, but she was not there that night; her son Fred and daughter-in-law Joan had come to take her home for dinner. This is something I was unable to do since I was visiting from Boston. After dinner, we were all hanging around the lounge area and Joan approached us; she had just dropped Ann back at her room, and she went into detail about what she had prepared for dinner. They had steaks on the grill, sugar snap peas, sweet potatoes, and sherbet with cantaloupe and berries for dessert. It sounded healthy, colorful, and bountiful. On behalf of my dad, I was thoroughly envious. I longed for him to have this sort of meal, either home-cooked or in a great restaurant; I wished I could regularly afford to take him out for dinner. But I also know that to do that I needed to hire an aide to help us. All of this was prohibitive in the midst of searching for a tenure-track position while juggling crushing student loans and credit card debt. I was faced with a far more limited financial landscape than the one in which I grew up. The whole thing was like a bad sequel to the nineties indie film, The Slums of Beverly Hills with this one called something like Going on Medicaid in Beachwood, Ohio. A sort of tragicomedy in which I come to understand class privilege as fluid and dynamic, nervously shifting in the course of one’s lifetime.
I recall that Joan asked my dad what he had for dinner. He did not respond. I thought to myself, “But Dad, you just had dinner an hour and a half ago. You used to be able to recall meals you had months and years ago in fancy restaurants.”
Fred said, “Jim, you don’t remember?”
And to compensate for any potential embarrassment, I jumped right in: “Oh yeah, my dad had matzo ball soup, a small salad, pot roast, mixed vegetables, boiled potatoes, and marble cake.” I wanted to add, but don’t, “On dusty rose-colored plastic plates, the kind used in hospitals around the world.” There’s something about those dishes that would look dirty and unappetizing even if Ruth’s Chris steaks were sizzling on them or Cheesecake Factory cakes were served on them.
As we were all talking, the nursing aide brought my dad neon-orange peanut butter crackers as a snack. My dad’s hands shook as he tried to release the plastic surrounding the crackers, just as they had shaken when he ate his dinner. The image was haunting — my dad had trouble stabbing the grape tomatoes on his salad. I recalled how he took his left hand to hold the tomato still and then tried to steady the fork in his right hand to prick the tomato. Yet twenty-five years ago, during an argument at a dinner party with my mom’s parents, he had thrown plates in the kitchen with great precision. On better, calmer days, he had grasped his pen with ease, dreaming up sharp, pointed ad campaigns. But the tomato, that small ball of fleshy, juicy red matter, was out of his reach, out of his control. And then even the conversation began to lack precision and self-control as he remarked to me, “I wish I could shower with you again. When you were a baby, you would get naked and I would wear a bathing suit and I would take you in the shower.” And then, completely out of context, he turned to Fred and says, “Bananas give me gas.”
From about 2000 until 2006, my dad used his pen less and less and started to transition to using an iMac, that now retro-looking machine with the royal blue sides, not exactly the choice of most men in their late seventies, but he possessed an aesthetic all his own. After 2006, steeped in the confusion of dementia, he stopped using both the computer and the pen.
I spent months believing that only if and when I found the pen again would I be able to write. As a result, my creativity felt conditional at best. At some point, I stumbled upon an old favorite book by Carolyn Heilbrun, Writing a Woman’s Life, in which she is critical of this line of thinking, for it is ultimately self-punishing:
We women have lived too much with closure: “if he notices me, if I marry him, if I get into college, if I get this work accepted, if I get this job” — there always seems to loom the possibility of something being over, settled, sweeping clear the way for contentment. This is the delusion of a passive life. When the hope for closure is abandoned, when there is an end to fantasy, adventure for women will begin.
I decided to try to tame my self-expectations about finding this pen. After all, clearly it was gone. Inspired by Buddhist teachings that it is best not to cling, to not be too attached, I tried to live out the mantra, “Not too tight, not too loose.”
In late fall 2012, I found myself interested in dating and very reluctantly decided to join Match.com; it felt like the only way to meet anyone. I was sick of being picked up by seventy-something, wealthy, retired golfers at the Starbucks near Hilton Head. I realized this online dating thing was where my dad’s craft would really shine. He would have me neatly and crisply packaged with a great photo and tagline and a nifty description of what I seek in a relationship. If nothing else, we’d get a good laugh out of the whole thing, and he would be amused by the terrible self-marketing of others. So I took a chance. And I met Mike. We spent an entire month emailing and calling until our first date on December 1. We arranged to meet for lunch at noon and wound up leaving each other after eleven p.m. Later that same week, I found myself sharing relationship advice with a former student from years ago who has become a friend, and I said, “The real litmus test is if you never want the conversation to end.”
An English major, a director of media relations, a music buff, a lover of word play, and an avid reader, Mike is no stranger to the significance of words and the power of voice. Like my dad (and he really isn’t), there’s a basic similarity: the appreciation for a good story, a good tagline, a catchy, memorable slogan that captures it all. A few days after our first date, we were talking on the phone about aging, dementia, and abuse, and I shared with him a bit about my dad. I briefly made mention of the fact that this is the subject of much of my writing. The next day he emailed me indicating an interest in reading my work if and when I would be up for sharing it. So later that day I sent him my first gritty essay about caregiving for my dad that had just been accepted for publication. I figured the quality of writing was decent enough, and that the content would either make him interested to know me more or be completely off-putting and make him run like hell. Either way, these seemed like good things for me to learn early on. To know if he can sit through that level of discomfort, really be here, talk about it, ask questions, and still want to stay. I hate to admit it but in some ways perhaps I was testing him. His gracious response and curiosity ignited in me a desire to write more, to get my work out; it has made me gutsier about my writing, the way I have longed to be.
Every morning since December first, with the exception of the mornings we are able to wake up together on weekends, Mike has sent me an e-mail. However, I have never received words on paper, neither a card nor a letter. The tiny cards that accompany the flowers he has sent don’t count because it’s not his writing. Other than seeing him sign his name on a restaurant bill or tally up my losing score when we play Uno, I have no idea what his handwriting even looks like. There seems to be nothing about how we function that relies on a pen. On words, yes, many of them. But not on pens. Perhaps it is indeed possible to write, and live, and love without the pen.
Long intrigued with silence and solitude but not always making the time for it that I know is nourishing, I decided in August 2012 to finally read Anne LeClaire’s Listening Below the Noise: The Transformative Power of Silence. A woman minister sitting next to me on an airplane had recommended it. LeClaire talks about her journey in practicing full days of silence, essentially letting go of the surface chatter of the world to venture into the depths of her own being. This resonates with me. I know that in stillness there is greater light and clarity for living a more expansive, profound, creative, and spacious life. What hadn’t yet registered with me was how that same stillness and quiet is necessary for dying. LeClaire recalls a story of a friend’s husband who said when nearing the end of his life, “I’m dying. Dying requires concentration. It requires quiet”.
Standing at the ticket counter at the Savannah airport on August 13, 2012, ready to check in to race to Cleveland for a visit to have my last goodbye with my dad, I received a call from hospice that he had just died. I fell to the floor sobbing. It was as though my dad had left me mid-sentence. How do we finish the narrative of our lives without our parents? Minutes later I overheard a young boy, about eight years old, ask his mom, “Do you know where Dad is?” I wanted to scoop the kid up and say, “Ya’ know, honey, I have the exact same question.”
On the last day of my father’s life, he stopped speaking, and I have come to believe that with his urgent desire to protect me, he would not let me see him that way, nor would he let me interact with him in the absence of words. The thing is, my dad and I were never really quiet around each other. It was only when my dad lived in nursing homes that we experienced more quiet together than ever before. While he slept or while the nurses assisted him, I got into a habit of always having with me a tote bag of work to do, papers to grade, books to read, and a legal pad to jot down notes about this whole experience of caregiving for an ill and elderly parent who had been abusive. So much confused me, and writing seemed like a way to sort through the muck, to let the grime of the experience fall out of me and away from me. Writing was a way out and a way in.
Alternating between my dad’s naps, hallucinations, and jarring moments of lucidity, I sat and stared at him, wept, studied his face and his body and the room, and compulsively wrote, with one of my own thick pens on legal pad paper, never on my laptop, which I did not bring on my trips. Somehow, the words that best captured how I felt revealed themselves in front of him. It was as though, as he continually lost his grasp of language, I was able to more fully come into my own sense of voice about our experience.
In the spring of 2009, I wrote this as my dad took a nap:
I watch you as you sleep, not unlike you probably watched me as I slept as a newborn baby and as a young girl. In wonder, in awe, in calm, and in worry. A parent watches a child sleep with anticipation of a future. An adult child watches a sick parent sleep with a sense of the past. You are finally still and quiet, you a man whom I know as chaotic and loud. We rest in this calm as you fall in and out of slumber and I grade papers. I need to study your face, memorize it, as I know I’ll need it one day, yet the you now is not the you I want to remember. In a few days, I’ll be back with over a hundred students, giving lectures, attending meetings, going to a concert, a lunch with a friend, a performance of The Vagina Monologues, and in my week ahead, I worry about being too busy, about running from one activity to the next, breathless, yet one day, Daddy, you did this, too, right? How would you restructure those days now? What did you hope for? What do you hope for now? With your tongue half out of your mouth, you resemble a little boy with Down Syndrome. You look tired though I can’t tell if you’re tired of this life. Yesterday I brought you coffee from Caribou with one of their napkins that made a jab at Starbucks that said, “Our coffee is smooth and fresh ’cause burnt and bitter were already taken.” Whenever I see great lines and logos, I think of you. Your creativity still shines through as we leaf through Metropolitan Home and marvel at minimalist spaces. Your stained maroon sweatpants are pulled up halfway toward your chest and your stomach looks distended. Earlier today, I saw as you put imaginary pills to your mouth with your fingers, something I assumed to be a self-soothing ritual you performed after the nurse told you it was not yet time for more medication. Being in Cleveland, I’m surrounded by childhood friends hanging out with their dads, younger men than you, in their sixties and early seventies, robust, athletic, energetic men vigorously playing tennis and golf, working, traveling, and chasing after their dreams, not figments of their imaginations in thin air. Oh, Daddy. Your eyes open suddenly and you ask, “What are you writing?” I quickly respond, “Oh, nothing really, it’s just for school.”
However, writing about my dad in front of my dad seemed like a profound act of betrayal. It also felt mean. As I see it now, it helped me grieve and let go. Contained in a tight, unattractive, physical space with my dad, enmeshed in his care in ways I probably should have never been, I was writing to untangle a knotty family narrative, to finally record and understand my experience as my own. By writing in front of him, I think something else happened that was necessary. I came to realize that all we had to give to each other was space. Psychic space. Most importantly, I needed to give him space and quiet to eventually die. My dad’s almost eight years of debilitating illness made me grasp his final inability to help and guide me, and that gave me the space I needed to dream of what I wanted to do. Though he helped me and was involved in most major decisions I had made in my life, dementia forced him to check out. It also forced me to check in with how well I was writing my own life.
I remember one day, a little over two years before he died, he asked me, “Deb, what does ‘quiet’ mean and how do you spell it?” Of all the words to ask about — I was floored. Quiet is a word that small children know. How could my dad be eighty-two years old and unable to process this simple word? But it felt tremendously revealing; this was my dad with a loud voice and a mean bark at times. People remarked that he had a great voice. Even in his eighties, he often sounded much more youthful. His voice was soothing, booming, crazy making, gentle, and loving all at once — and it was always clear.
I value what’s involved in cultivating one’s voice. Feminist politics and my antiviolence work have always led me back to the power of finding one’s voice. I think voice is both the quality of how we speak as well as what we speak about from a gut level of clarity and wholeness. On my fortieth birthday, my dad left me a gorgeous voicemail in which he told me he loved being my father; I obsessively recorded it in various places so I would be sure to always have it. While I am fortunate to have an uncanny memory for voices anyway, his voice is one I want to hear again and not just in my head.
I have heard that it’s in the silence that we most come to know another person and ourselves. Six weeks before my dad died, the nursing home called me wanting my signature to get my dad into hospice. All the years of worrying about how and when they would call to tell me he died were replaced in my head with, “He’s dying; it’s happening now.” I asked to speak with him. I really just found myself wanting his advice more than anyone else’s, and I said, “I want you to know I love you, Dad.” I tried to say it in a way that he wouldn’t be fully aware that I knew he was dying.
He replied, “You don’t need to worry about that, Deb; I know you do.”
I then asked him, “What’s your advice for me, Dad, for anything in the world?” I so desperately wanted his input, maybe even his criticisms to weigh against my own perceptions and judgment. Sometimes in the past he would say, “It’s your life, Deb, live it.” And now, for the first time, he said nothing. There was dead air. Not a word. Just blank space. In my head, I was saying: “Wait, Dad — for decades you wanted to tell me what to do and how to do it and now I actually want and need your advice and you aren’t gonna give it?” Then suddenly this silence became oddly reassuring and liberating for me. Finally, there was no dictating, no steering, no telling me what to do more of, what to do less of, criticizing what decisions I made, no shouting or swearing at me at the top of his lungs. His parting gift to me was the absence of all that. There was just quiet space, actually an odd silence of acceptance and connection. And in that was freedom for me. Perhaps the air wasn’t dead, but more alive and full of possibility for me to recraft my life than ever before. To write my life into being, into meaning. The legacy he left me with is this.
It was a Wednesday in late February 2013, and I was packing up at the end of my Introduction to Sociology class. My student Caitlin approached me to explain to me why she’d had so many absences. I started to put the washable markers away that I had been using on the white board in class. I stuck them in the small pouch that I never seem to use and suddenly found myself touching something thin and familiar. I looked down and saw the gold pen. I don’t even recall putting it there, but then it made sense that I must have because the backpack was my carry-on luggage for the plane, where I put all the things I most definitely did not want to risk losing. I smiled at myself in that way where maybe no one could see it on my face, but it was deep within my very being. My dad had always wanted to see me teach a class and never did; he wanted to move to the Carolinas and never did. And suddenly, right there, was my dad. In my classroom in South Carolina. I wanted to either laugh hysterically or cry, but I knew what I had to do in that moment: I had to talk to Caitlin. I had already learned to begin to write a life without the pen: a life full of new love and intense possibility.
Caitlin told me, “I am so sorry I haven’t made it to class, See, it’s just that my friend shot and killed himself, and this is all on top of my dad dying a few months ago, just like you, Deb.” Grief tugged really hard. I was suddenly struck by what students remember of what we tell them, what they relate to, how so much of what’s important for them is not the pure academic stuff but the life stuff, the survival skills. During the course of the year, I had become more open about how my dad had died right before school started, how I was divorced, how I had grown up in an emotionally abusive home. I had been feeling an extraordinary pull to not sugarcoat the realities.
Caitlin began to cry and then told me about her worries in caring for her little sister since her widowed mother had a heart attack within days of the father’s death due to the stress of it all. It hit me that Caitlin was just eighteen, that I was forty-three, perhaps about the age of her mother. I had thought I was too young to lose my father, that this man so deeply lodged in the world, in my world, was gone far too soon. I am certain Caitlin was too young to lose a father. Instinctively, I reached out to hug Caitlin, and we exchanged very few words; quiet presence through this pain was all that was necessary. I lightly touched her face as she cried. I completely let go of what is supposedly appropriate in a professional, academic context. I was suddenly reminded of Craig, the therapist at the nursing home.
All that I clung to is what seemed right in that moment of deepened vulnerability — for Caitlin and for me. I have learned that if I throw the whole of myself into teaching, the students learn more and so do I. I have also learned that teaching and learning can heal. Healing only happens from the rawness that’s exposed. I told Caitlin I am here if she needs anything. But we were headed into spring break and she soon vanished after that. She’ll never know how serendipitous it was for me to share new fatherloss and to find that pen all in the space of that tiny conversation.
I left campus, jumped into my car, and immediately called Mike. “You’ll never believe this. I just found the pen,” I exclaimed, and then I chuckled. “I even think there’s a story in here, something about how I’m glad that I found it but even more glad that I first had to figure out how to let it go.”
Reprinted with permission from Letting Go, edited by Donna King and Catherine G. Valentine and published by Vanderbilt University Press, 2015.