The kitchen of my mother’s 1872 home, possibly the only bright and inviting room in the house, is where everything began and where everything ended. It’s the center of our lives-- the table has a sort of gravitational pull, drawing us in from neighborhoods and cities far and wide, creating an organic space for family and friends to enjoy each other (and a lot of wine) until the wee hours of the morning. It still has glitter embedded in its varnish from when I was a child and insisted on dumping glitter on everything I made, there’s a deep burn from when a prism in the window was struck just perfectly by the sun, the table’s surface, like the rings of a tree, helps us remember our past even as the inevitable new layers appear.
One summer afternoon the year that I graduated from high school, the kitchen’s force field was particularly strong, and had brought someone new into the house my mother and I had lived alone in for some time. I first met Russ when I was a senior in high school, and by the summer before I went away to college, he had been visiting frequently. At this point I wasn’t completely aware of the significance of his presence, and did not know that he was engaged in a romantic (paper!) correspondence with my mother. The next fall while I was away at school, he moved from La Jolla, California into our house in Salt Lake City, and they were married shortly after in a quiet ceremony in a friend’s backyard.
He was a giant in our dollhouse, his legs too long for any of our beds, couches, chairs. He bought and cooked gigantic portions of red meat, he could name a motorcycle blocks away based on the sound of the engine, he drove us to the mountains in his Saab convertible to watch meteor showers, he insisted on always having a bottle of champagne chilling in the fridge. His stories were hilarious, his warmth contagious and his cooking was indescribable. Even my father loved him.
But there’s a catch: when my mother met Russ he had been already been diagnosed with prostate cancer. They fell in love anyway. For years Russ’s health was stable, and when I graduated from college in June 2009, he and my mother and everyone else came to Oregon for the ceremony. I moved to southern France to study the following autumn, but left abruptly after living arrangements fell through. Those stressful and lonely last days in France rocked me. I was embarrassed, scared and I had no plan, but all of those feelings evaporated the moment that I got off my transcontinental flight home. It was the first day since I had met him that Russ wasn’t OK. I dropped my bags and spent 9 hours in the emergency room, watching one of the biggest, strongest men I know (he ran ultra-marathons) lie crippled with pain. I spent the next eight months helping my mom and taking care of Russ until his final breath.
A study conducted by the AARP Public Policy Institute found that as life expectancies grow, more terminally ill Americans are taking their lives into their own hands, choosing not to continue treatment. While most treatment options, especially for cancer patients, prolong life at least temporarily, treatments like chemotherapy and radiation can be painful, debilitating and invasive processes. When Russ stopped going to his radiation treatments no one could blame him. The treatments rendered him incapable of enjoying his short time left: he didn’t have energy, he felt immense, uncontrollable pain, and food, one of the true loves of his life, tasted like metal. For this reason Russ chose to die at home, with the care of his new family, his old family and registered professionals in dignity and “relative comfort” (he felt absolutely terrible). My mother joined the silent ranks of some three million people nationwide that provide at least part-time care for a disabled or ill spouse.
When the weather started to cool off in the fall, I could usually find Russ in the living room reading whenever I returned from the gym, coffee with a friend, or picking up groceries for dinner. One evening, after I graduated from college and the frenzy of figuring out my future had died down, after my failed mission to France, after the ER, Russ called me in, where he was reading a Clive Cussler novel, with our gigantic grey cat, Nigel, perched regally on the back of the couch. He endured endless grief from my erudite mother for his choice in reading material. Russ preferred this type of book as time went on-- action-driven, minimal-commitment entertainment. I sat next to him, moving the burgundy velvet throw pillow out of the way, and he gave me his watch: a big, old, gold and chrome Tag Heuer-- my graduation present. Months later, when I finally picked up the watch after having it resized, Russ was in his hospital bed, still reading. I showed him the watch and we both burst into tears. The space around death is an intimate one, and something happened to my relationship with Russ that couldn’t have happened in any other situation, no matter how close we might have become. Gradually, he let me into this space, and in time I came to understand what that meant.
What it means to be a caregiver for your patient in your home is something that many people will come to understand, whether a loved one falls ill or they become responsible for an aging parent. It wasn’t until I was dropped in the middle of the emotional no-man’s-land of end-of-life care, that I realized that I was embarking on my own journey, not just Russ’s. The care for a loved one involves two different kinds of sick people: the one who is dying, and the one whose sickness is created by the slow deterioration of someone they love. There is no way to describe this feeling, as it manifests itself in so many different ways. First, always first, it is sadness. It is paralyzing grief. But it’s more complicated than that -- it’s frustration, it’s anger, it’s paranoia: the complete surrender of yourself and the intense guilt of having even the smallest of selfish needs. The American College of Physicians Guide to the caregiving of someone with stage-four cancer attempts to make sense of these feelings, pointing out that to be the best caregiver you need to take care of yourself:
Anger: Caregivers as well as the person being cared for can feel overwhelmed and confused when they learn that the disease is not responding to treatment or is progressing. These feelings are normal.
Fear: You may become afraid when someone you care for deeply has a serious illness. You do not know what is in store for this person or for yourself, and you may fear that you will not be able to handle what happens.
Grief: A serious, life-threatening illness can bring on a great sense of loss and sorrow. Memories of how he or she used to be may make you sad, and you may feel burdened by more responsibilities that you must handle alone.
Guilt: Many people who care for someone with advanced cancer feel guilt at some time during the illness.
While the emotions so flatly described here are all inevitable, they inadequately define the inner conflict that is even more inevitable. For all the help you seek and the support you receive, the frustrating distance from at which physicians, though they probably have no choice, place themselves seeks to simplify and compartmentalize all of the complications of terminal illness, emotional and physical alike. While Russ slowly lost his freedom, I lost mine too. I wasn’t sickened from cancer, but from my own conscious choice, bound by a sense of love and a sense of responsibility.
The most frustrating and draining part of living with someone with advanced cancer is the pain. To be sure, for both the caregiver and the sufferer, pain creates feelings of incapacitating fear, helplessness and anger. The main cause for cancer pain is a tumor pushing against a nerve or putting pressure on bones, tissues, or organs. Russ’ cancer had spread to his bones, causing a dull, constant and consuming pain. Pain in his joints had been an issue for some time, but from the day I returned from France to the day Russ died, the only goal we had was curbing the anguish. In fact, according to the American Cancer Society, the American College of Physicians and the AARP’s Caregiving Resource Center, the job of the family caregiver is to “take control” of the pain. However, from the view from the ground, “take control” is a very problematic phrase. Even more problematic is the ACP’s statement that “most cancer pain can be controlled or even eliminated. For example, even with advanced cancer, pain can be controlled in 90% to 99% of cases. In nine out of 10 cases, physicians can control pain by using pills alone; they do not have to use injections, operations, or other methods.”
If this is true–and I am skeptical that it is– Russ became part of the 1 to 10% whose pain, no matter what arsenal of drugs we fired into his system, just couldn’t be alleviated. He needed “other methods.” The bedroom that my mother and Russ shared sits above the kitchen on the second floor. From the door, one is greeted by a chaise lounge placed in front of an old black tile fireplace, straight through this room, is the second chamber, holding the iron-framed bed in which they slept. The master bedroom is the most antique room in the house, though most of the furniture my mother owns belonged in its era and didn’t fit the modern man or his lifestyle. Needless to say, Russ’s 6’4” frame didn’t match the typical body type in mind in the construction of Victorian beds, or furniture in general. No matter what bed he slept in, excluding the king-sized bed in the apartment they built together over our garage where we were eventually forced to move him before the hospital bed arrived, his feet dangled over the edge. In the end, cancer is indeed about pain management, and while Russ was almost never comfortable or even “controlled” if he wasn’t sedated into sleep, when the pain jolted him awake from drugged unconsciousness, bed was where he experienced the most misery and where we watched impotently by his side.
The vocabulary of end-of-life care suggests a new language in itself, and my pain literacy improved as I gradually became fluent.“Breakthrough” pain is the phrase that I remember most clearly, and this phrase came to represent our biggest fear. The ACP defines this phenomenon as pain “that ‘breaks through’ the relief achieved by regularly scheduled, around-the-clock medicines.” In other words, this is the pain that no one expects, the pain that can’t be harnessed by one’s customary dosage. At the pain clinic on the fourth floor of the cancer hospital where Russ’s oncologist worked, he saw a special doctor who analyzed his pain. They too, confidently told us that the pain could be conquered, as if cancer and the pain it causes were something mankind routinely tamed or even understood. The International Association for the Study of pain describes cancer pain slightly more honestly, as being “subjective.” “It affects each person differently, depending upon factors such as age, personality, perception, pain threshold and past experiences with pain.”
In many ways, Russ’ experience wasn’t a battle to control pain, but a war of attrition with opiates. Even when they work they make you miserable, depressed, foggy, and extremely tired. Russ was often unable to appreciate when he was pain free, because the drugs added a new torment.
As the nighttime pain progressed, sleep lessened and Russ grew considerably weaker. In the morning, when I would hear him approach the stairs from my room, I would sit up in bed and just listen. The stairs not only represent the fear of the fall, but they also represent the indescribable fear of what falling means. This hyper-alertness around falling was something I had experienced before with my grandfather, whose decline was marked distinctly by a fall he took on his way outside one summer afternoon years ago. This memory haunted me, and since Russ’ knees were going first, and because both of our flights of stairs are treacherous even to the able bodied, I listened carefully to his movements.
When I would hear him start down the stairs– and if I was there when he began he would get frustrated that I felt compelled to help or watch– I would run to the bottom, as if I were able to break the fall of a tall man. Our stair dance continued for several months before his strength diminished considerably and the pain in his joints where the cancer had spread made each trip up and down a heartbreaking ordeal. Forced to reevaluate, sometime between Thanksgiving and Christmas, we called for help. Russ was never a difficult patient. His tremendous and at times macho pride never got in the way him of doing what he knew my mother and I needed. We didn’t take his concessions for granted–his easy cooperation was vital for all parties– still, you could see the sadness in his expression when we started discussing hospice services.
The Mayo Clinic defines hospice as a service for people who are no longer seeking further treatment to combat their illness. Hospice is for the people who want to live out their last days as comfortably as possible. And when the final attempt at radiation made him miserable, hospice was for Russ. Some people call hospice workers the angels of death, meaning that you have given up and that the people around you have given up on you too. This wasn’t the case with us, and Russ soon got over the notion that a hospice team meant that he was done for. Rita, the chain-smoking battle-ax of a nurse that was assigned to our case, had a special way with him. Their humor synchronized instantly and her no-nonsense way of dealing with a disease so often euphemized or softened and made him trust her.
The word itself, according to the Hospice Foundation of America, originated from the Latin “hospitium,” that means guesthouse, a place for people on religious pilgrimages to stop and rest. However, its current meaning began to take shape in the 1960’s, when Dr. Cicely Saunders, a British physician, established St. Christopher's Hospice near London. St. Christopher's sought to approach caregiving differently and began the first program that used “modern pain management techniques to compassionately care for the dying.” In other words, comfort replaced any attempt to treat or cure the patient. The first hospice in the US was established in Connecticut in 1974. In 2007, more than 4,700 hospice programs nationwide cared for almost 1.4 million people. As with us, over eighty percent of this occurred in the home of the patient or their family.
For months Russ braved the stairs, and my insistence on looking on from below. He would make a joke about how skinny he’d gotten and how maybe I could break his fall after all. But the weaker he got, the more the stairs became an issue. Eventually we had to discuss what came next. By the time we brought up putting a bed on the first floor, we were probably weeks too late. When we put a hospital bed into the dining room, the stairs to the bedroom became the past, and the new stairs–the two stairs down from the front porch, or the step up into the car– represented even greater limitations. Ultimately, stairs became the walls that led to his final confinement. No one blamed him for resisting the hospital bed, and he didn’t blame us for pushing it.
Russ accepted Rita rapidly, and he learned to live with supervised stairs and eventually with no stairs at all. All of these potentially humiliating moments were taken with great stride and grace. I have felt the absurdity of watching others rush around you while you sit still after I underwent a pretty massive leg surgery- but all of that restless boredom, and the agony of missing out on even the most mundane activities didn’t end in death; it ended in getting to resume my life. One thing that Russ found to be uncomfortable or embarrassing at times was the massive amount of friends that descended on our house to help my mother.
But forever the cool patient, Russ understood the value of respite for my mother and me. One winter evening I returned home to relieve him of guests and found him trapped in a recliner, his piercing gaze fixated on me. In a hilariously misguided act, some friends of my mother came over and sang him songs and played guitar. We sat and listened to terribly corny, folksy songs sung by quiet, well-meaning and generous people for at least twenty minutes, but I had no idea how long they had been there before I arrived. Russ’s distress was visible in his eyes and he struggled to keep a straight face, managing in the end to thank them politely as they departed, breaking into a grin when I led them out of the room.
Respite is an awkward but necessary part of homecare. Despite the guilt and anxiety we felt when we left the house even for a half an hour, those coffee breaks, grocery store runs, lunches with friends on the outside, became an essential part of my sanity. Respite means “rest,” and that’s exactly what we needed. The outside world gave me a physical break from the palpable tension that bounces off the walls inside. We soon got accustomed to friends hanging out with Russ, and we let him devise a list of “VIP” friends, or the people he enjoyed having around the most, followed by the friends who had volunteered but with whom he didn’t feel as comfortable. The campfire singers fell under this category. The in-crowd would talk to him, read him poetry, take him to lunch or sometimes just sit in silence. Our brief getaways did help contain the horror at home, but by allowing our closest friends to be his respite team, Russ allowed them to share his mortality with him. To be a part of an intimacy as close as death is an honor not many get to have.
After Russ’ arrival in our world we inaugurated a new Christmas tradition: we would clear all of the furniture out of the dining room, light the fireplace, put in steel kitchen prep tables, and create a taco and margarita bar for a number of families with whom we always shared holidays. Then and now– we cooked in his honor this year though the fare was considerably less remarkable– this tradition embodies the way Russ thought about sharing his table. It was relaxed but thoughtful, laid back but the quality of the food was impeccable, and most of all it was fun. Last year we altered the face of the dining room after Christmas as well, as once Russ could no longer go up and down the stairs due to pain and our fear of him falling, we finally made the decision with Rita that it would be the place of the hospital bed. It seemed like a perfect room for it- not as central and much bigger than the kitchen, not cold like the greenish-grey parlor, but a warm gold color with a big fireplace and tall ceilings and weird, eclectic artwork. We pushed the table into the back corner of the room, where his visitors would sit, and the small couch was turned around to face the new TV we had installed the day that the Winter Olympics started so that Russ wouldn’t feel left out. My media-phobic mother resisted this idea until the moment we turned it on, but towards the end it became her companion when Russ no longer could be, and helped her sit by his side when time stood still. With some soft blankets, colorful bedding, and big pillows, the transformation was complete.
The metamorphosis of the dining room marked a turning point: the beginning of the end. As his life became limited to the first floor of the house and the occasional outing, we were encouraged by his overwhelmingly positive and open attitude, continued humor about life’s absurdities, and his love and appreciation for my mother and me, as well as for the friends and nurses who surrounded him daily. Blinded by his encouragement, we may have overlooked the first signs that his body was beginning to shut down.
The National Cancer Institute’s resource for family caregivers warns to be alert for delirium and hallucinations, caused by “A higher- or lower-than-normal amount of certain chemicals in the blood that keep the heart, kidneys, nerves, and muscles working the way they should, side effects of drugs or drug interactions, and dehydration.” About two weeks before he died, Russ was sitting in the plush recliner in the kitchen that a friend had loaned us, (we really did have no furniture that Russ found comfortable), and his sister and brother, and my mother and I were sitting around the table. The phone rang, and Russ answered: “We’re all just here,” he said. “Beth’s having some friends over, we’re going to make dinner. We’re all just here.” There were no friends coming over, there was no dinner planned- and then he got up from his chair, walked to the fridge, took out some celery and carrots and began to slice. He placed the perfectly julienned vegetables in a bowl and brought them to us at the table.
“What do you do?” asks Natalie Portman’s character in Garden State, when talking about life’s tragedies. “You laugh. I'm not saying I don't cry, but in between I laugh, and I realize how silly it is to take anything too seriously.” I didn’t have any idea what this meant at the time, and instead of waiting for death I witnessed an endearing flicker of the old Russ that I once knew who would, in fact, be entertaining, preparing dinner for my friends. In the humor of his action, the complicated and often paradoxical emotions of homecare and death surface. “We’re just here,” often returns to my mind as a phrase that symbolizes Russ’s generosity and openness – and prep cooking skills–even in his final moments.
According to recent polls conducted by the AARP, most Americans would prefer to die at home. Russ did. He didn’t want us spending time in hospital waiting rooms, and signed his “do not resuscitate” form months in advance. He even called the mortuary in advance to arrange for them to pick up his body, and he signed the check himself. Russ was fortunate enough to have as much control as possible over his own mortality, and when the clear physical signs that death was finally arrived, there was no panic or confusion about what the next steps would be. He knew it would be a horrible enough day without having to make a one thousand dollar payment.
The ACP’s explanation of a cancer death is acute: “When people have a chronic illness such as late-stage cancer, they usually do not die from one major event or for only one reason. Instead, they die because of many different factors that combine to slow down the body’s important systems, such as the heart and lungs. In a sense, the physical body slowly ‘gives up.’" People spend more time in bed, spend less time eating or drinking, and eventually the lack of nourishment causes them to fall into a sleep-like state. When this occurred, we frequently played Russ Paul Simon’s “Graceland” while we sat and held his hand, put petroleum jelly on his flaking lips, but mostly remained silent, motionless, suspended.
Russ died on March 28, 2010. It was a bright and crisp day; the sun lured friends and family who had gathered at the house outside, warming our skin and spirits after a dark winter. His daughters were in town from California, and my mother’s friends had brought lunch, for the first time in months, I felt at ease. We took turns sitting with him and when our turn ended we would return to the backyard that was beginning to show signs of life after what was apparently a harsh winter, though I didn’t really remember the weather. At this final stage, what the National Cancer Institute and about every nation-wide cancer treatment organization say to watch for is something called the “death rattle.” Medically, “Rattle occurs when saliva or other fluids collect in the throat and upper airways in a patient who is too weak to clear the throat.” Psychologically, the death rattle is the most excruciatingly soft noise. When it happened, thankfully only two or three times, it turned our dining room into an echo chamber. Hank, a dear friend and doctor, who had been monitoring Russ’s condition all morning, was the last one to hear it, followed by one final clear release. He walked outside slowly to get my mother, who had just started to regain color in her face. As she hurdled back through the kitchen one last time, she heard silence. Maybe the last breath was still raspy, but I choose to remember the relief in his breath and in his face during that last moment. In the end, that’s really all you can hope for.
As I write this, exactly one year has passed since we all sat in the back yard on the first promising day of spring eating strawberries and quiche, the day that Russ left us. As I write, my mother is having chili with Russ’ brother, Gerry, and what appears to be a very large group of people who loved him. Seven years have passed since he ate my quesadilla, sitting at the very kitchen table where I sat when the men from the mortuary arrived. Within a week the hospital bed and borrowed recliner were gone; the nurses, social workers, doctors, they were all gone. And so was he. But the bottle of champagne remains.