Volume 5
An Online Literary Magazine
March 31, 2011


Last Days: The Bitter and the Sweet


Alexandra Garfield


Richard Grave (Alexandra Garfield's father) with brown trout. Photo by Ben Grave.


hold my father’s hand loosely, my thumb rubbing the raised veins in a slow rhythm. I am almost singing the story of this day quietly into his ear, the words breathing out in a low and soothing voice, comforting him about the room, his illness, the hospital and his family. I am hoping my voice will focus him. He is disoriented and anxious, tethered to bed number three on the eighth floor of Yale-New Haven Hospital. The mint green walls flatten and mix the sounds around me. Monitors hiccup, footsteps hurry down the hall, food trays rattle and lurch in and out of rooms, sighs and sobs drift from open doorways. Two bins of dirty linen overflow at the foot of the bed. Men shuffle in and out of the bathroom at the end of the room, gowns gaping, heads down. I cannot save him but I can hold his hand and be here. I can speak for him. I close my eyes and place my feet flat on the sticky floor. I have done this before. I am not afraid.


In the last twenty-four hours my father went from a lucid 82-year-old to near death. A fever, pneumonia, the diagnosis of Stage IV Prostate Cancer all took him down in a matter of days. Family members alternate staying by his side, talking with the ever-changing shifts of doctors and nurses and aides, trying to construct a plan that can stabilize him enough to go home. Doctors, nurses and aides arrive at the bedside at 6 a.m. with paperwork for treatments, repeated test orders, scan requests. Each time they wheel him out of the room he becomes so anxious that several aides have to walk with him to keep him on the stretcher.


I know we have alternatives to this room, this hospital and these treatments. We politely request meetings at 5:30 a.m. to talk with his medical staff about other options. My father cannot participate in the meetings, he floats somewhere behind his eyes speaking of adding machines, rowing his arms in the air. We need to be his advocates and this is tricky for the family. Wives, stepmothers, siblings–all trying to come together, stay rational, talk about death and dying and speak for my father. We are emotionally drained. My father withers more each day in the hospital bed, the noise and invasive procedures heightening his anxiety and decline. The family fatigues as the days drag on and no decisions materialize.


We are emphatic that he would not want a rescue mission but to be home with his dog, sitting under the blooming cherry trees. There is a look of confusion on the faces of some doctors when we initiate the conversation about going home sooner rather than later, and some just close their notebooks with a snap. We are at the epicenter of cutting edge medicine at Yale-New Haven Hospital, but the family believes he would want to gracefully live out his last day’s somewhere else. We stress the terms “management,” “comfort” and “quality of life.” The physicians speak of “alternative treatments.” We are negotiating the course of his last days.


The fact that we are even having this discussion is a significant advance in end-of-life treatment options. We are fortunate that this is 2010, hospice care is readily available and our family has been through both ends of this experience. In the space of forty years I’ve had a center seat watching the evolution of terminal care politically and personally from the bedside of my family: My father’s illness follows my aunt, my mother, my grandmother and my in-laws. My family was involved in the first hospice facility in the United States. Hospice home care is our choice, one that we have experienced before on several levels.


The evolution and concept of hospice care–terminal, or palliative care–can be attributed to the work of one compassionate Englishwoman in the 1960’s. Dr. Elisabeth Kübler-Ross believed that terminally ill patients needed “comfort” care at the end of life, not traditional medical treatment aimed to cure them. Dr. Kübler-Ross established a series of “hospices” houses, centers designed to address the specific needs of dying patients, manage their pain and surround them with family and friends. Kübler-Ross strove to change the ostracism and fear surrounding terminal illness into treating death with dignity. She pioneered a humane and realistic approach to death and dying, and “hospice care” has subsequently transformed the end of life care for millions of people-and the death and dying journey for most of my family.


Back in 1965, ten years before hospice would land into our lives, my striking, talented and raven-haired Aunt Ginny disappeared. Or so it appeared to my ten-year-old self. One day she was holding me spellbound at the Thanksgiving table and then a card arrived from the hospital. Inside the pop art drawing of a banana split Ginny had written to my mother: “Forget me and you get no dessert.” When I confronted my mother, she told me that Ginny had cancer and would not be home again. And she wasn’t sure she could visit her. We never spoke of her again. This was the first definitive experience my family had with terminal illness and in that era, a classic medical conclusion to terminal illness before hospice care changed the face of terminal care. Ginny’s loss, and her words, made an impression that have stayed with my family ever since.


Hospice care migrated from England to the United States in the 1970”s. I like to think that after helplessly watching Ginny be shut away, my grandmother grasped the opportunity ten years later to eliminate an archaic attitude and practice. My grandmother, State Senator Lucy T. Hammer and Connecticut’s then governor, Ella Grasso, secured the land deal for the first hospice facility in Branford, Connecticut.


Cherry trees in bloom, April, 2010, Guilford CT. Photo by Alexandra Garfield.


t took until mid-1980 for Medicare to fully approve hospice care, but since then hospice availability has increased a hundred fold, and is found throughout the United States in hospitals, homecare, nursing facilities and hospice houses. In a fitting tribute to their work, both my grandmother and Ella Grasso themselves ended their lives under hospice care.


Terminal illness continued to touch our lives. In 1982, my mother was diagnosed with Stage IV Ovarian Cancer. I was 22 then and as all youth, thought myself immortal. And she was strong and 48 and wanted to fight to the end. Between us, we blazed a trail of determination, convinced we could defy statistics. I read every book on her illness, sat in hospital corridors for days straight, fed her nutritious meals even when she could hardly eat, kept diaries of her food and drug intake. She sought all and any available treatment and laid herself on the operating table long after her doctor wanted her to stop.


In the end, we could do no more. Her body and my strength had reached the limit. Her body couldn’t take more surgery, her veins more chemotherapy. I was confronted with the reality that I could not make her well. Finally, what gave her the most comfort was lying together on her bed, holding hands, telling her stories. She went home to her farm and sat under the apple trees listening to her birds. With hospice visiting to manage the pain and medications, volunteers to help the family members, friends to work the farm and do errands, my mother died in her own bed with her family holding her, the crickets singing under a full moon, a month after her fifty-second birthday. I had learned the limits of desire, the facts of life. We had helped my mother die at home with the simplest of comforts: Our presence, our hands, and our hearts.


Ten years after my mother died, my grandmother–in one heart-catching moment–ceased to recognize me. Up in Maine that same year, my father-in-law forgot how to tie a shoe. When they both forgot how to swallow, the double Alzheimer’s diagnosis was heart breaking. We were not only losing them from terminal illness, but watching them lose their identity long before they died.


For three years I visited my grandmother every day at a dementia facility, juggling time around three small children, school and sport commitments, and home life. Her needs became so simple: I gave her my hand and presence, and she gave me her hand and big hugs. Each time I stepped off the elevator she would exclaim ‘You found me!’ and I knew that despite the fact she didn’t know how she knew me, she knew I was there for her. I was her stranger.


Ten years after I buried my grandmother, I completed the Hospice volunteer training program and work as a patient volunteer. In the forty years since Ginny’s death, hospice is now a common and available option for end-of-life care, and volunteers are an important part of the team. In my greater community alone there are several hospice houses as well as hospice care available in nursing homes, for home care and designated wings at hospitals. As a hospice volunteer I visit with terminally ill people in need of a hand unpacking, packing, eating, singing, walking and talking. Again and again, there is nothing so comforting as giving another human being my hand and company. A hand held, a brow rubbed, helps them with their journey. Each and every time I am called to a vigil to sit with hospice patients while they die, I hold their hand and think of Ginny, Lucy, Ella, my mother, my grandmother and now, my father. I send a little of the sweet gift of comfort to Ginny and countless others who were traditionally ostracized with a terminal illness.


I have experienced the evolution of end-of-life care very personally over the last four decades. In that time, I have seen the medical and cultural shift towards death with dignity thanks to hospice care. These last months, advocating for my father, I also see that there are still cultural, medical and philosophical conflicts that arise surrounding decision making during critical illness. We need to continue educating ourselves on options, understand our family wishes, know the patient rights–all critical to be ready to help when the time comes. Doctors will always want to cure and use the newest medicine but everyone has the right to maintain a quality of life no matter what the diagnosis or treatments available. In the end, we can help our family and friends by offering our time, presence and awareness.


I am thankful every day for my health. I am grateful that I had the opportunity to lie next to my mother and hold her hand, be there for my grandmother, and now be the eyes and ears and advocate for my father. I am not afraid of death, but hope he will be able to meet it on his own terms. I believe we can achieve quality of life in his last days, despite the diagnosis. This makes me strong. While a lot of sadness and loss have been part of the last forty years, I sit by my father’s bedside knowing we are giving each other the gift of trust and love.


Slowly my father’s fever subsides. He has lost so much weight they cannot take him off the I.V., which is a condition for being discharged. We coerce food into him, bite by bite. He is so confused without a clock or window that he awakes for the day at 3 a.m. and spends the day in a tired stupor. But he has asked for his glasses, and has allowed a few visitors. We have to talk about the tough decisions. “Where do you want to be?” I ask. “Home,” he answers.


In the waning light, I look into my father’s eyes and continue to talk to him, leaning in closer, wrapping his hand in mine. We talk about what it will take to get him home to his dog, sitting under the blooming cherry trees. This is my dessert, the most bitter of sweet.


Alexandra Garfield lives and writes from Boston and Seattle. Mother of three grown children and two Scottish terriers, she is a volunteer with Hospice of the North Shore. Her father is currently at home, under full hospice care. This is her first story for The Writer’s Workshop Review.


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