Good News and Bad News

My manuscript, Hope For a Cool Pillow, has been picked up by a publisher and will be available in March 2016.  I am very excited to be working with Outpost 19 Books.  I’m excited that this work will be available both in print and in an e-version.  Unfortunately, I do have to remove the portions I’ve posted from the blog (with the exception of Chapter 1) per the publisher’s request.  This seems entirely reasonable.  As my mother would have said, though perhaps in a different context, why buy the cow when you can get the milk for free?  To which I can only respond, moo.

Stay tuned!

Hope For a Cool Pillow – Chapter One

IMG_1356.JPG - Version 2Note: The manuscript that follows is an exploration of end-of-life care based on my experiences as a daughter and as a physician. It recounts the gradual evolution of a viewpoint regarding an important issue.

The story does not follow a traditional chronological course; rather it follows the path I took in figuring it out. Which means I wrote it slightly backwards, looping about, side to side, and with the considerable use of retrospect.  The names and characteristics of all patients have been altered to protect their privacy.  My parents appear as themselves.  Friends and family members have had their names changed as in my previous book.  If you have comments or questions, please send them through the website or FB and not the blog, which is closed due to heavy spamming. Thanks for reading!  MO

 

On the first day of my first clinical rotation in the third year of medical school, I was assigned my first patient. Her name was Esther. An internal medicine resident told me to insert a urinary catheter into Esther, who hadn’t peed in a day or so.

Placing the catheter would mark another first. But the problem proved murkier: how to make the transition from a normal social interaction to elbowing apart the knees of a stranger and mucking about in her nether region. The whole concept seemed intrusive, certainly an invasion of her privacy.   I hadn’t learned the necessary etiquette from gross anatomy, physical diagnosis, or Emily Post. So I called my mother from the nursing station. Her knowledge of decorum was encyclopedic.

“You got me, honey,” Mom said. “I can’t help you with this one.”

Esther was a hundred and two but she looked lovely, sitting up straight in her hospital bed, her hair a white halo surrounding a gently grooved face. I recognized the Q sign pretty quickly: open mouth slashed at five o’clock by a protruding tongue. I had read that this usually indicated death.[i]   I looked for some movement of her chest but it remained perfectly still. Was it possible that the resident might have sent me to place a catheter in a dead person? It was not only possible.

Scrambled eggs marred Esther’s otherwise tidy hospital gown. It appeared that someone had tried to feed her, not noticing she couldn’t swallow, not recognizing she had passed.

That morning, on rounds, her geriatrician announced: “All my patients are do not resuscitate unless otherwise specified.” So I did not perform CPR.

From the end of the bed I marveled at her quiet aplomb. This is the way to go, I thought. Nobody stomping on your chest, zapping you with voltage, shoving tubes this way and that. A quiet death without fuss or muss. Esther, wearing a pink satin bed jacket, had slipped away peacefully; she had gone doggedly gentle into the good night.

~

My own mother died on September 22nd in the year 2010. I like to think she chose that particular day for reasons of her own—it was the birthday of someone who had displeased her immensely—but death makes it impossible for me to know. She was a disciplined and principled woman who stayed true to her beliefs throughout a long life, which ended consistent with her trusted maxim: enough is enough. Had there been a coupon for a coffin—and she’d had her wits about her—I think she would have clipped it. I loved her for that and so much more.

The funeral proceedings took place in the traditional Roman Catholic fashion, with a mass and burial on the day following a wake complete with open casket. I used to think the open casket a barbaric tradition that should be consigned to the past, much like bloodletting for consumption or trephination for mental disorders. It seemed a creepy holdover from a different century. When my father died in 1998, he was almost unrecognizable from the ravages of cancer. Something in me—either doctor or ad hoc decorator—wanted to cover it up. I had suggested to Mom that perhaps we close the casket.

“No,” she said firmly at the time, “I want to be able to see him just one more day.”

I never understood the open casket until Mom died. Then I needed to be with her, to gaze at her face one more day.

Clery Funeral Home, the stalwart if temporary mainstay for the recently departed that graces my hometown of Elmhurst, Illinois, had done a terrific job preparing her hair and make-up. Mom didn’t look a day over eighty. My sisters Erica, Beth, and Bonnie and I had chosen a suit she’d particularly liked, one that complemented her coloring. We added a cheerful scarf that I had bought her. We picked out her favorite rosary and a pair of coordinating earrings. She looked good, if not well. She certainly did not seem ninety-three. My sisters and I felt confident that Mom would have been thrilled with her posthumous appearance. I’d never given too much thought to cosmetizing, which is the art of making the dead appear better than dead, almost alive really, just kind of still. Or perhaps I’d thought of it in terms of outcome, not in terms of process. It must be a difficult profession, certainly not for everyone. I don’t think I’d want to do it, but I’ve learned from experience that I can do just about anything if I have to.

A surprising number of people showed up for the wake and the funeral. When you’re ninety-three, you can’t expect too many mourners unless you’re famous. Most of your contemporaries are long gone. But Mom still had a few friends who paid their respects. Those who couldn’t attend had their children come in their stead. Friends of mine, friends of my sisters’, even friends of our kids came to say good-bye to our mother, Lydia Overton. She’d left an impression. I’m not sure you can ask for more than that.

The wake was odd in the manner that wakes usually are, but nothing truly weird happened. Not at the wake anyway. Nobody grabbed any dead body parts or fell to the floor in prostration. I’ve been at wakes where some distant relatives hauled the dead person up and out of the casket, hugged him, and carried on. I’ve attended wakes where the family hired a professional to wail. That was definitely awkward and personally discomfiting. My family, for certain, doesn’t emote much. Our funerals are civil affairs; the weeping is silent, mostly contained. But still, there we were, standing around a dead body in a casket, making polite small talk about this and that and it was unnerving and frankly pretty damn exhausting trying to pretend it was all just normal, not too devastating really. People I hadn’t seen in ages—people I didn’t even like—came by to say hello. Or good-bye, as it were. Some hugs and kisses. I kept glancing over my shoulder at Mom. It would be my last day with her. Forever. I studied her profile in between visits with other mourners. What if I developed facial agnosia and forgot what she looked like once she was buried? How could pictures ever prove adequate? I wasn’t ready for this, and yet she was more than ready. And she was so much more than her image, right? How could a two-dimensional figure evoke the full magnitude of the woman? I was glad to have that one extra day. I needed it. But what I really needed was the mom I’d had years before, when both she and her mind were present in the same room at the same time and we could all have a meaningful discussion. That’s the woman I wanted, right here and right now. I wanted her laughter and wisdom; I wanted her insight. But those were long gone.

I kneeled in front of the casket and pretended to pray so I didn’t have to talk to anyone. I wanted time alone with her. Mom looked the same in repose as she had each day in recent memory—a slight, beneficent smile affixed to her face. The smile was her default setting, placed there more to reassure than to signal underlying happiness or contentment. Dementia misleads you that way. It’s the great teaser, using the expression of equanimity to hide the tragedy of a soul’s inching disappearance. But in death her dementia kept its distance; the still silence almost allowed me to forget the previous six years. She was, once again, the brilliant mother who’d taught me to read before I started kindergarten. She’d taught me to cook too, not well, unfortunately, but rather to enjoy the science lab of the kitchen, the science of making do with whatever. Together we experimented with Tollhouse cookies, using butter in differing quantities, baking at differing temperatures, then noting the differences in shape and texture of the cookies. How chewy they turned out. We made fudge and divinity and mincemeat pies at Christmas, banana cream pies for birthdays, apple-crisps in the fall. I stayed in my bedroom emerging only with flesh-colored nose-plugs when she cooked sauerkraut for my father, or split pea soup for the family. I’d hated her vegetable soup, though it smelled terrific. I refused to learn that recipe. What was I thinking? There were other lessons she taught me, like how to take things apart before sending them to the repair shop. Always turn the power off and then on before you decide something is broken. Check your connections, check your electrical source, your circuit breakers or fuses, and check your wires; learn how to do basic maintenance on all major appliances simply by following the instructions provided in the manuals—that’s what they’re there for. If the toilet doesn’t flush, take off the top and study the mechanism. It’s incredibly simple. Replace the flapper if it doesn’t seat properly, they’re sold at the hardware store, you know. Change your filters; clean the lint trap; let’s follow the hot and cold water lines; you have to know your home. Why hire somebody to do what you can do yourself?

My daughter Ruthann placed a warm hand on my shoulder. I’d been kneeling a long time.

“Do you want to go get something to drink? There’s food in the other room.” I stood up, my legs stiff and sore. I looked around. More visitors had gathered. I vaguely recognized most. I should say hello, thank them for coming. Mom would have wanted me to be a gracious hostess, on this occasion as on any other.

“I’m going to sit for a while,” I said. “Maybe later.”

“Are you okay?” she asked and studied my face. I nodded and sank into an upholstered chair.

It wasn’t just home maintenance she’d taught me. Mom preached from the practical to the heartfelt: High heels will ruin your feet; spend money on decent shoes because when your feet hurt, you hurt all over. Clean underwear went without saying. Stand up straight, practice yoga, stretch every day. Send thank-you notes and sympathy cards. Put some thought into what you write. Go to wakes; call friends who’ve lost a loved one, and don’t just call the week after the funeral, but keep calling. The second year is harder than the first. All of life was a lesson and I trotted along at her heels. She made everything interesting, whether it was how to cut and sew a Vogue pattern, how to hit a golf ball on a downhill lie, or how to choose a ripe pineapple. She taught me how to listen, and how to wonder. She taught me how to focus.

It wasn’t that I didn’t see this coming. I’d seen it coming for a long time. Maybe that was the problem. The long slow decline was over. And now, what should have been relief turned out to feel like nothing of the sort. Why does grief take us by surprise?

She gave birth to me and then instilled me with everything she knew. What’s the opposite of unfurl? That’s how her life ended. She folded up. I stood and moved into the crowd. I tried to socialize and make everyone feel welcome, just as my mother would have done.

~

The funeral showcased the Clery’ family expertise. The Roman Catholic mass, the drive to the cemetery, and the burial all constituted a precise symphony of tradition and symbolism, each movement perfectly executed by a team with longstanding experience and comfort in their roles. We had only to follow their instructions and our dead would be interred. Wear black, remember lipstick, place tissues in your pocket. Make the sign of the cross and mouth the words to the twenty-third psalm. One final day and this strange but comforting ritual would be complete. Her suffering had ended. Long live suffering. And then, as the graveside service concluded and the mourners began to disperse, Mom’s caregiver walked over to the casket and gave full, vibrant voice to her grief, a grief that was completely out of tune with our longstanding civility and repression.

Mom’s caregiver was Vicki, a sunny and capable woman in her sixties from the Philippines. She lived-in during the last year of Mom’s life, sleeping on the sofa in the living room, spending twenty-four hours a day, seven days a week with Mom except for a few days a month when one of her sisters would come to relieve her. Vicki cleaned Mom, dressed Mom, fed Mom. She put make-up on Mom and plucked her eyebrows. She sang to her. She watched an amazing amount of television with Mom, and got her hooked on Dancing with the Stars and Filipino Karaoke. Vicki’s singing voice made my ears bleed, but Mom loved it. And when Mom died, Vicki grieved, not in the tidy and quiet way of our family, but in the loud and messy way of her own.

It was in that awkward moment at the cemetery, a moment of pure finality and utter solitude—after the prayers had been said, when the visitors began ambling back to their cars, when I felt the slim fragments of religious belief slip further away from me—that Vicki draped herself over the casket and howled. Her chest heaved and her unrestrained sobs filled the dry autumn space of St. Mary’s Catholic Cemetery, from which I could see, in the distance to the south, my childhood home. Between my old house and my parents’ graves lay the Elmhurst College campus, with its grassy playing fields and nondescript dorms. There used to be tennis courts dividing the graves from the fields and my back yard, but they’d been removed to accommodate more parking. I remembered hitting balls there with Mom, when I was twelve or so. She didn’t play well, but she adored Rod Laver. I rubbed my arms. The day was cool for early fall. I think it had rained and yet everything seemed surprisingly arid. “Dust thou art and unto dust thou shalt return.” True enough. All cried out, I felt like a piece of fruit made indestructible by some appliance you might buy from the Home Shopping Network, use once, then forget about. Apricot jerky, perhaps, or an apple chip. I watched Vicki sob and understood that her emotion was purer than mine. She’d known Mom a brief but intense period of time; she’d had the last measure of Mom, distilled to its essence.

Perhaps this was a cultural problem. I knew from my work that different cultures prepare themselves differently, or not at all. It’s complicated. But who doesn’t anticipate death in the elderly? Life ends. That’s the only thing we can agree on. Certainly knowing that simple fact should help us prepare. It’s shocking when it does not.

After a moment, I went to Vicki. My sisters joined me. Because that’s how we do things. I placed a hand on her back. She turned and hugged me, hugged each of us. I would never be like Vicki, I thought; I would never have the luxury of such rich clear feeling expressed publicly and precisely. I come from different stock. My sisters and I descend from a long line of women who tough it out, suck it up, and huff ambivalence with every breath. My grandmother taught my mother, her mother taught her, my mother taught me. We are American women, the lot of us, daughters of more than one revolution; we’ve buried loved ones in these plains since the 1600’s. Stoicism comes easily to the ambivalent. My mother’s family had been poor and depressingly dour until this past generation. That’s when Dad and his cronies arrived, pumped up on ambition fed by the Great War, seeking and finding opportunities and giving us the chance we needed to laugh, at long last. I gazed at the overcast sky that had only begun to break. Faint streaks of blue split the gray, promising something beyond the gloom of the day. It felt like a little gift, a heavenly surprise. Thank you, Mom.

My daughters Beatrice and Ruthann put their arms through mine and together we walked to the car. We would have a luncheon for my mother at the club where she’d played golf for over fifty years. Still, I marveled at Vicki’s public display. It seemed like performance art: a statement of high anguish. I didn’t know what to make of it. Her loss was genuine—she’d cried before, big heaving sobs. But I kept my sobs in. My sisters kept theirs in. Silence best held the grief I understood.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[i]The House of God, by Samuel Shem, 1978

Thoughts on a Cool Pillow

Maintaining a blog begins to seem like a commitment once it has a certain heft, a certain number of entries.  I’m sure that varies from one blogger to the next.  It isn’t like a paperback journal you can put aside then pick back up years later.  This feels stale if you let it go too long.  It has a life of its own, as all things Internet do.  So when I stopped blogging for the better part of a year, something in me began to nag: Don’t you have anything?  Anything??

Well yes.  I do have something.  It has simply been too painful to put out there.  But I’m beginning to come to terms with it.  So here goes.

A year ago, I finished working on my second book, Hope For a Cool Pillow.  It is a memoir, of sorts.  It is a personal story about caring for my mom and dad in hospice, about learning the economics of healthcare, about coming to terms with how medicine profits and patients suffer from excessive treatment at the end of life.  It is a literary examination of my career and my very prescient parents.

Writing the manuscript was a long, involved process and a dark time for me.  Depressing.  I was, in short, death-obsessed.  I read, researched, and wrote about end-of-life issues (both personal and professional) for a couple of years.  When I thought I had finished, I sent it to my agent who tried to get it published but had no luck.  Then over six months, I completely rewrote the thing.  Renamed it too.  The second time, it was a much better book.  The agent thought so.  She told me it was “glorious”.  She tried again to sell it.  No luck again.  Then I tried to sell it on the independent publishers’ market.  But I have not had any success.

There are probably other options for my book, such as self-publishing, pitching it to Amazon and the like, but I am tired of this process.  I need to move on for myself and for my writing.    Each week, as I read reviews of yet another book published that is similar to mine, I know that my subject matter was timely.  Perhaps there was too much competition.  Perhaps a better idea is to pursue a subject that is not so timely.  Back when I started working on this, in 2010, end-of-life care and death with dignity were not the hot topics they are today.  Many physicians have written books in the meantime.  People who have cared for parents have written books.  And physicians with parents wrote books too.  So the field crowded me out, I suppose, perhaps for a good reason, perhaps not.  Either way, I have to change direction.  As much as death and dying, hospice and palliative care, the economics of elder care, the advantages of advance directives and POLST interest me (and will continue to do so), the process of writing this book made me realize that I need to live my life in the here and now; I need to focus on the positives.  I let my attention wander too far into the dark, and I let it stay there too long.  Much that is good came out of writing this – I made important decisions about my own healthcare and future that are invaluable and I had hundreds of fascinating discussions, but publication does not necessarily have to be part of the picture.  I always assumed that something I wrote, which I found fascinating, would be interesting to others.

Ain’t necessarily so.  At least, not to editors at specific publishing houses in 2014 and 2015.

But stay tuned for snippets, or paragraphs, perhaps full chapters from my manuscript.  I learned a lot over the past 4 years.  There’s no reason not to share some of it right here…