Leslie’s House of Nightmares

Early in the fifth book of L.M. Montgomery’s Anne of Green Gables series, Anne’s House of Dreams, the title character—just married to her true love Gilbert Blythe and en route to their honeymoon house—spots a shockingly beautiful woman. The woman, wearing a white dress with a red flower, wanders the scenic Prince Edward Island shore with a flock of geese. She fixes the new bride with a baleful stare. Anne wonders about that stare for weeks, until she meets her reclusive next-door neighbor, Leslie Moore. Anne had assumed a Mrs. Moore would be a typical housewife; instead she is the beautiful goose-girl.

Leslie Moore is also, equally surprisingly, a full-time caregiver for her husband. Dick Moore is a onetime sailor and abusive spouse whom Leslie, raised in poverty, married under duress at age 16. Dick suffered a traumatic brain injury years before, during a bar fight in Cuba, and is now—in the not-so-sympathetic phrasing of the community—an “imbecile.” He is no longer abusive, but can be fractious, and like a toddler he requires constant care. As the novel opens, Leslie is just 28, and other characters make a painful refrain of discussing how many hopeless years of caring for him lie in her future.

In its examination of female friendship and its twisting plot, Anne’s House of Dreams is both more complex and more compelling than many of the Green Gables books. I read the series compulsively as a child and frequently return to it, but I always found the “bosom friendship” of Anne and Diana—a bond born initially of Anne’s loneliness and Diana’s compliance—unrealistic, and Anne’s “kindred spirits” twee.  Anne and Leslie, by contrast, have a friendship as rocky as the PEI shore they both wander. Anne, Leslie says, does not—cannot—understand her life’s tragedy. Leslie is referring ostensibly to having witnessed the gory death of her brother and discovered the suicide of her beloved father. Even without that, however, Anne’s bridal happiness (even her name is Blythe), right next door to Leslie’s dreary burden of caring for a man she always detested, could hardly fail to alienate the less privileged woman. Leslie’s entrapment in the daily grind of caregiving sets her apart.

As a child, reading this odd, sensational novel—so different from other Anne books—I never considered Leslie’s role in the narrative as the dark shadow of Anne’s happiness. But now, after more than a year as a caregiver for my own husband, who has been suffering from cancer and life-threatening complications of a bone marrow transplant, I think of it frequently. I, too, now have friends whose uncomplicated happiness and blundering attempts at kindness I resent. I, too, care for the man I married, who seems different now than he ever did before—though less so than Dick Moore. I, too, have learned the hard way that the experience of caregiving separates a person from friends, from family, even from the ill person him- or herself.

When I read Anne’s House of Dreams now, I wish for a narrative with Leslie, not Anne, as the protagonist. I want more of her story, more of her inner life, even more of the daily details of her fictional life. Montgomery is no gritty realist, and she glosses over backbreaking chores like laundry, the doubtless disgusting details of Dick’s toileting and wound care, the daily tedium of entertaining a grown man with a toddler’s capacities. But there are hints: Leslie’s “brown, work-hardened hands”; her mention of a day when “Dick had been very—very hard to manage”; her wondering aloud if she will follow her father to suicide, just to escape her life. The book’s plot will eventually twist enough to release her from this life (more on that later), but still, Leslie’s plight seems insoluble, and therein, I argue, lies a metaphor for the many of us who feel trapped in a life of caregiving. Caring for a very ill spouse has been for me, as it was for Leslie, a world apart.

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capetryon3_2012I can claim neither extraordinary beauty nor a flock of geese, but I identify with that feeling of wandering the seashore, looking balefully on happiness. Leslie’s only defense, besides that resentful stare, is her beauty: she maintains her “golden cloud” of hair at Crystal Gayle length and always makes sure that she has a red accessory on somewhere, a flower or a ribbon. The gleam of color, Anne reflects at one point, expresses Leslie’s pent-up, quashed personality, that which she has to suppress in her life of sorrow. It’s a small outlet, but a significant one, reminding me powerfully of the work of a present-day writer whose essays on caregiving move me deeply: Ella Risbridger, whose columns on her lipsticks and her boyfriend’s cancer are inspiring and gorgeously written. Risbridger’s recurrent and brilliant theme is that keeping the flame of oneself alive, in large part through things as simple (and perhaps as frivolous-seeming) as wearing a lipstick that makes you happy, is essential. Indeed, before I ever read Risbridger’s work, I also always made sure to have a gleam of red about me, much like Leslie. I wore bright lipstick to the hospital, even on days I gave up and wore yoga pants, even after my husband lost his vision thanks to a rare complication and I was literally unseen. Most days, I tried to wear a dress, to look nice, to present a cheerful face.

When my husband was in the hospital, our situation felt all-consuming. I visited daily; I cared for our daughters, who could not visit; I paid all bills, did all paperwork, made all decisions about parenting. His parents helped immensely with the daily chores of the household, but their worried presence also came with a certain emotional strain. Their son was in the hospital, close to death; my husband was in the hospital, close to death. During the horrible month of February 2016, as we wondered whether he would live or die, it felt to me like the strain could get no worse.

But it could, and it did, when he came home from the hospital in mid-May. At discharge, his doctors explicitly told me that he could not be left alone for even a moment. When I pointed out I have two children and they need to be taken places, like school (let alone my own need to occasionally go places), my husband’s primary oncologist responded dismissively, “For most patients family steps in and it works out fine.” I wanted to ask the doctor whether his family was available, because mine certainly wasn’t. (My mother died by suicide, like Leslie Moore’s father, six years ago; my father and brother live in my hometown, 90 miles away. His parents, who live in another country, had already been here for four months.)

To accommodate the physicians’ blithe assumption that I would simply provide round-the-clock companionship to a desperately ill man despite the other demands of our family life, we hired 24-hour attendants, whose pay was not covered by insurance. The fact that we could afford it means that I’m probably in the top 1 percent of privilege for caregivers, and I’m deeply thankful for that.

Despite having these attendants to do things like empty his commode and administer his eye drops and medications (some 30 prescriptions on a complex schedule, plus as-needed pills for pain, diarrhea, etc), the sheer management of his care was incredibly time consuming, and it fell to me. When he came home from the hospital, I fielded 8–10 phone calls a day about appointments, medications, insurance, benefits, and more. (He was far too ill to handle these reliably, in addition to being hampered by blindness.) I took him, in a wheelchair, to lengthy and crucial medical appointments, and I worked around his many in-home appointments. I refilled the pillbox and tracked medications and refills, none of them automatic. I tracked every bite he took on a calorie-counting app. I learned to administer intravenous medications.

Since he struggled to eat, he was sent home on IV nutrition (called TPN), given nightly through one of his two chest catheters. One of his transplant doctors told me, “Oh, it’s so simple. You just hook it up! Most of our patients just do it themselves!” My husband, blinded, would have struggled to do so in any case, but I also wonder if that doctor has ever actually observed the procedure for “just hooking it up.” The instruction booklet for doing so ran to 20 pages; the process, once I was good at it and it was running smoothly, took a minimum of 20 minutes. Insurance does not cover home health nursing for giving daily IV meds; it’s up to the family. Likewise, the medical establishment simply expects that the family will competently learn and perform minor wound care, give showers (which requires waterproofing his catheters—we were told to use Saran wrap), track medications, and empty the commode. Those are the sorts of tasks for which I hired nursing attendants; they are the kind of thing that I felt would quickly kill any chance of our recovering a normal marriage, which was already threatened enough.

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tpei013_js_anne_green_gables_0759_sI have a Ph.D. in Victorian literature, but I am absolutely the wrong kind of doctor for these tasks. And the burden lies not just in the sort of grunt work that would have been far more burdensome in Leslie Moore’s time, but also in learning about my husband’s rare disease and trying to help make the best decisions about it for the past two years. All that, for me, has come in addition to taking on every single element of household management and child-rearing and to the huge emotional strain of having my partner be life-threateningly ill, with no clarity about his long-term prognosis and the significant chance that he would be a lifelong invalid. These demands became an unpaid, all-consuming volunteer role with lightning speed.

So much I valued in my life—my writing and professional work, the equality and companionship of my marriage, our sex life, time alone in my home, my ability to mother my kids as I would like, time for myself, even cooking—went by the wayside thanks to the overwhelming demands of my husband’s cancer. This, obviously, was an urgent and necessary struggle, one in which we needed all hands on deck. But for me as for him, the price was high. That price, for me and many other people in a caregiving role, should and must be acknowledged, especially by the medical establishment.

I came to feel that my own life had become collateral damage in the fight to save my husband’s. What seemed even worse was that I felt that neither he nor anybody on his medical team noticed or particularly cared. For caregivers like me, the crisis doesn’t end when the immediate threat to life for the ill person ends. It is an ongoing and slow-moving ordeal that takes an enormous and often hidden toll. The emergency of severe, life-threatening illness like aggressive cancer—powerful, expansive, devastating, all-consuming, adrenaline-fueled—is the hurricane. Caregiving is cleaning up after the news crews have left, scrubbing the hidden black mold years later, becoming ill from the contaminated floodwaters. I had already been a so-called cancer spouse for more than a year before he came home from the hospital after his transplant. And even then, I had no idea how burnt out I was and how demanding caregiving could be, until I experienced the further demands of having him home and very ill. Over the course of his illness, I have diligently attended to self-care, as recommended for caregivers: massages, regular therapy, occasional nights away, exercise. But sometimes, all the self-care one can squeeze in just isn’t enough for the ongoing, long-haul demands of a situation. And sometimes, self-care felt like just another, and the most dispensable, of the many forms of care I had to provide. I wanted somebody else to care for me.

One day, in a follow-up appointment, I broke. I had always worked hard to maintain a stoic, almost professional attitude in appointments. To ask good questions. To be easy to work with. To seem competent. To put on a nice dress for appointments. To be a good cancer spouse. Maybe I had performed my role too well, fooling everyone into thinking I was coping admirably. One hot summer morning, I missed breakfast in the rush to drop off the girls at daycare and get to an early appointment. I struggled with the wheelchair, slammed the trunk, snapped at my husband. I fumed in the waiting room, but in the exam room that hot rage turned to silent, dripping tears. I sat weeping, unable to speak or look up. At the end, the oncologist turned to me and asked if I was all right. I sullenly said no. He chided me for not taking better care of myself, saying that I couldn’t give good care to my husband if I wasn’t doing better. I cried harder when we left, harder still later that day. I felt, as one character says of Leslie Moore, like underneath my defenses my soul must be raw.

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big-toast-imgIf you type “caregiver” into Google, the first search that pops up is “caregiver burnout.” I discovered this just after that disastrously miserable day in the oncologist’s office, while googling for resources to help myself—an act of so-called self-care that felt like yet another task I resented, yet another obligation I had to fulfill to hold everything together. The top search result was a quiz to determine whether the caregiver taking the quiz is burnt out. I took it. At the end, the page gave me the oddly breezy result, “You’re already toast!” illustrated with a stock photo of a burned piece of bread. The quiz result recommended taking more time for myself, getting a massage or taking walks, arranging for care so I can have an hour to myself, like Leslie on the shore, or an occasional night away. But it said nothing about what to do when you already were doing all that and were burnt out anyway. I considered, many times, simply turning around while driving to the pharmacy or the grocery store, heading to the airport instead, and buying a ticket on any plane going somewhere semitropical, preferably Hawaii. Of course, I never got far enough with this fantasy to think through the actual fallout that would ensue: Abandoning or alienating everyone I’ve ever loved, everyone who has loved me. Shocking our friends. Further traumatizing our already fragile children. Producing a lifelong load of guilt, by becoming a person who abandoned my husband at nearly his lowest point.

I could not see an easy escape from my life, any more than Leslie Moore could. But thanks to the magic of a plot twist, Leslie is shockingly freed. Anne’s husband Gilbert, a doctor, has read about a seemingly miraculous brain surgery that may restore Dick’s senses. We get few details on this surgery—and since the story takes place circa 1900 it seems far-fetched—but Gilbert conceives of the idea while examining carbuncles (large boils) on Dick’s neck and observing his scars. The mention of the carbuncles subtly underscores the difficulty Leslie must have in caring for Dick; carbuncles could easily become infected, one more thing for her to tend to. But that is an aside. Gilbert and Anne have their first marital disagreement about the surgery. Anne knows that Leslie would be even more miserable if her abusive husband were restored to his senses. Gilbert, however, feels it is his duty to tell Leslie that Dick could be cured.

Leslie agrees that Dick should have the operation, but with obvious difficulty: “terror” comes into her eyes when she understands that the operation may restore her husband. But Gilbert is determined, telling Anne: “‘’Ye shall know the truth, and the truth shall make you free.’ I believe that, Anne, with all my heart. It’s the greatest and grandest verse in the Bible…And it’s the first duty of a man to tell the truth.’” Anne shoots back: “‘In this case the truth won’t make poor Leslie free,’ sighed Anne. ‘It will probably end in still more bitter bondage for her.’”

Grimly determined, Leslie takes Dick to Montreal for the operation—and the truth indeed makes her free. It has been a case of mistaken identity all along: The man she has been laboriously tending for years is her husband’s cousin, “George Moore of Nova Scotia, who, it seems, always resembled him very strikingly. Dick Moore died of yellow fever thirteen years ago in Cuba.”

A series of coincidences worthy of Dickens produce this twist. Montgomery piles up reason after reason why this mistaken identity could have gone unnoticed: Leslie, younger than her husband, never met the lookalike cousin, who “both had that queer freak of eyes—one blue and one hazel.” Dick and George are double cousins—their fathers brothers, their mothers identical twins—who sailed to Cuba on the same ship. Dick just happened to die after giving George letters and his watch to take to Leslie; George, after his injury, just happened to be found, with no other identifying information, by seafaring neighbor named Captain Jim, who knew Dick in PEI. The Captain, fooled by the watch and letters, brought “Dick” home to Leslie. The Four Winds community, including Leslie, attributed differences in “Dick” to his accident. (The only creature not taken in was Dick’s dog, Carlo; Leslie remarks to Anne that she always thought it odd that the dog was not more friendly to its former master.) That Leslie has remained beautiful and unbowed through the years of her drudging life, incidentally, is nearly as unlikely as the mistaken identity.

The story then transforms into pure romance. Leslie has fallen in love with a writer who vacationed on the island, and he with her, and the two are free to marry. The story ends happily. Anne says to Leslie: “‘Your chain is broken—there is no cage.’” A grand deus ex machina has smashed the seemingly immutable conditions entrapping Leslie. When Leslie’s suitor, hearing of her freedom, returns to the island to court her, Anne tells her: “‘Take off your tragic airs, my dear friend, and fold them up and put them away in lavender. You’ll never need them again.’”

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5b546d475d521ba8992a962d0d820ea0Perhaps Leslie will not. But the real truth about caregiving is that it does not set anyone free, not easily. There are very few miracle cures that suddenly snap a patient back to health, much less back to the recollection that oh, oops, he’s not your husband after all and you’re free to walk away. For many caregivers, only the death of their beloved ends their duties, a fact that of necessity comes with a complex stew of loss and grief and relief, but never the revelation that all along, you weren’t caring for your loved one at all. For others—I hope for me—the burden slowly, gradually lightens as the sick person recovers, but it leaves behind trauma and a life changed utterly.

Yet as unrealistic as Leslie’s sudden freedom is, and as great a contrast that fairytale plot is to the bleak realism of her life as caregiver, it does hold a metaphor. In positing that the person you care for is not the person you knew before the illness, Montgomery’s story reveals a deeper, deeply painful truth. In fundamental ways, I am not caring for the husband I once had. He is different. He did not die of yellow fever in Cuba. I loved my husband before; his return would not be an occasion for dread. But when he went through his transplant, the man I married was changed. His body has changed completely, wasted away. And I don’t know that anyone could go through a near-death ordeal and return with the same personality. His outlook, his interests, his hopes are different than they were two years ago; mine are too.

My husband’s story also, like George and Dick Moore’s, offers a bizarre genetic twist. He has changed on a genetic level, though it’s not apparent to the eye. He is a chimera now—in scientific terms, an organism with two different genetic signatures. In the stem cell transplant, all of the cells of his immune system were wiped out through intensive chemo and radiation, and stem cells from his brother’s blood repopulated his marrow. He bears his brother’s DNA in his blood, though that hasn’t changed his appearance. Occasionally, natural chimerism results in two differently colored eyes, so the fictional George and Dick Moore may have been chimeras of a very different sort. I am reminded of the odd eyes of David Bowie, one brown and one blue, who coincidentally died on the day of my husband’s transplant; he, however, was not a genetic chimera but rather had one eye injured in a fight. My husband’s eyes too have changed, but both are now a clouded, occluded blue, their former clarity obscured by a thick layer of corneal scratches and swelling, a rare complication of his transplant.

To become a new hybrid organism, my husband endured what in the lingo of bone marrow transplants is called Day Zero, in which he received new stem cells, a small sandwich-sized bag of brick-pink, viscous fluid that bore his new life. He lived through his doctors deliberately nearly killing him in order to cure him, and then he lived again through his new immune system blindly and dispassionately almost killing him with graft versus host disease. He lost four months of his life, his hair, his vision, his ability to eat and digest food, significant chunks of his memory. Some of these things are returning, at different speeds. His personality is fussier and more demanding, more self-centered yet passive, and oddly patient. He rarely seems bored despite sitting for long stretches with little to do; a former English professor, he cannot even read. He has, in other words, a personality conditioned by long, dull stretches of hospital time, the personality of an invalid. This, too, will shift and change as he slowly regains his independence.

We are now in a stage of the long slow retreat of his illness. I feel fortunate that my role as an intensive, round-the-clock caregiver is diminishing and will—assuming his cancer does not relapse—continue to diminish. For many, if not most, conditions requiring long-term caregiving, improvement and recovery are as unlikely as the one we see in Anne’s House of Dreams. But my role as caregiver has a limit. My husband does not have dementia, or a progressively worsening condition requiring ever more intensive care; nine months after his transplant, he is already more independent than he was, though his medical needs remain high.

Every small step toward independence, like administering his own eye drops (he has three different types, four times a day), feels hard won and precarious. These days, every so often, we walk slowly to a Starbucks three blocks from our house, he waving the long white cane over the ground in front of him, me warning him if he veers too close to the curb. If we have time, we sit together. He sips about an eighth of an iced mocha. We don’t have much to say. I am slowly, slowly returning to writing. We are slowly, slowly reducing the hours of the caregiving help we hired. The other day he was able put some dishes in the dishwasher for the first time this year. My therapist told me I sounded less angry. Slowly, slowly I am forgetting the sight of my husband near death in the hospital. Slowly, slowly, we are emerging, blinking in the light, out of the cage of his dependence, our limbs cramped, our senses confused. It is not easy to understand what to do with our newfound freedom as it grows. But like Leslie, I hope soon to fold up my tragic airs and put them away, never to need them again.

Kate Washington, already toast.