Why Do We Write?

Reblogged from September 16, 2012

I attended the book signing this past August. Farther Along, written by my friend and mentor, Carol Henderson, which tells the stories of thirteen mothers (she is one of them), a bakers dozen as Carol points out, who had lost children at various ages.

I was prepared to cry. I don’t do well with death of children, even adult children. Children shouldn’t die before their parents. Maybe that’s why I choose geriatrics as my specialty. Old folks die. It’s expected. No surprises. I can deal with that.

I teared up but didn’t cry and was somewhat unprepared for the humor, serenity, and lack of self-pity as the six mothers read sections from the book. But then ten years had passed since the women came together under Carol’s guidance and direction. Certainly bereavement takes time to absorb, rant and rage against, come to terms and eventually accept the grievous loss that will never be forgotten until one’s dying day.

How fortunate the women found each other and Carol. Writing their stories seems to have brought them to a better place than they would be if they hadn’t immersed themselves in writing.

Why did these women write?

Carol says in her book:

“Writing about deep and traumatic matters, as many studies now confirm, is good for our physical health. Reflective writing actually lowers pulse and blood pressure, increases T-cell production, and boosts the immune system. Writing can help us cope with chronic conditions like physical pain—and the loss of health, of dreams, and, yes, of children.”

We all write for different reasons. I am haunted by my patients. They walk around in my memory and defy me to ignore them. I need to tell their stories.

“Why do we write? To make suffering endurable. To make evil intelligible. To make justice desirable and . . . to make love possible”― Roger Rosenblatt, Unless It Moves the Human Heart: The Craft and Art of Writing

Why do you write?

Marv Roelofs and Apple Sauce

Making applesauce sort of represents living life to the fullest. I think prayer is sometimes about asking God to let us do what we can and enjoy ourselves. Picking apples and making applesauce has made me do that.

—Marv Roelofs

 

I called Marv soon after he received the diagnosis of Stage IV Small Cell Lung Cancer this past January. I don’t recall if I have ever called him in all the 40 plus years his wife, Lois, and I have been friends. Now in the past few months, I had called him twice.

 

After his diagnosis there was a sense of urgency. The doctors had told him the cancer was very aggressive so when Marv declined treatment, I figured I better talk to him right away. How long would he be around? I needed to tell him how I appreciated his encouragement and support of my friendship with Lois.

 

Lois and I met in Chicago. Two nurses with two young children each: a boy and a girl, and both ready to break out of the stay-at-home-mom mode. Together, in the late 70s and early 80s, we completed undergraduate and graduate nursing degrees. In 1992 I moved from Chicago.

 

We didn’t need to get permission from our husbands to spend time away from home or to spend money on plane tickets when we rendezvoused over the years. But it was Marv’s encouragement and support of our long-distance friendship and warm reception and hospitality during my visits that I wanted to acknowledge. Since Lois didn’t cook, or wash dishes for that matter, it was Marv who made the dinners, baked the banana bread, and served Lois and I as we continued deep into our conversation—as women are inclined to do.

 

That phone call melted into tears for both of us. Maybe the rawness of Marv’s diagnosis and the awareness of impending death were too close to the surface. I was glad I had called to say thank you.

 

After that first phone call and when Marv didn’t die in a matter of days or weeks as the doctors had suggested, I called him a second time. It was about six months after the first phone call. He had written a book of his life and made fifty-five copies to pass along to family and friends. I read it almost all in one evening. I knew some of Marv’s stories already, but his life on the farm and the details of his self-started business was new to me. I was especially taken with the way he wrote—as if we were sitting in his living room in Sioux Falls, or back in Chicago, just sharing his recollections.

 

That second phone call was more uplifting. We laughed more. Cried less. I told him how much I liked the book, especially the story about him making applesauce.

The first Fall after Marv and Lois moved from Chicago to Sioux Falls, he noticed that many people didn’t pick the apples from their trees. The apples just fell and rotted on the ground. He knocked on doors asking to harvest the apples, not for profit, but to donate them to the homeless and churches, and to make applesauce.

 

It was right around apple picking season that I visited Lois and Marv in Sioux Falls. With a refrigerator and freezer stuffed with applesauce in zip-lock bags, Marv sent Lois and me into the neighborhood to give away the first samplings of his culinary concoction to neighbors that Marv and Lois had barely met. The friendly neighbors graciously accepted our offering.

 

Marv was a successful business person, a loving husband, dad, and grandfather. Like all of us he was also a complicated human. But it was Marv, the person who picked the apples and made applesauce, whose memory is the warmest in my heart.

 

Marv died at 4:10 a.m. on July 25.

 

Lois’ Blog “Write along with me” chronicles their journey with a terminal illness.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Leaving Our Legacy

I have been thinking for a long time about the fact that we older nurses are dying off. We will take with us our memories of nursing history. I have always loved to hear from other seasoned nurses about how they size up their nursing careers as they look back. What was important at the time, what were they happy to see disappear, and how do they assess current nursing practice and the future of the profession?

So I decided I would weigh in, occasionally, by spotlighting a nurse of a certain age, i.e., sixty and older, whether this is through an article I have read or by interviewing someone, or through my own stories.

This post is prompted by an article: Diane Saulecke, “There from the Start: A Hospice Nurse Looks Back,” American Journal of Nursing, 7, July 2017, 56-57.

The article features Dianne Puzycki, an 82-year-old nurse, who began to work with the hospice movement when it first started in the early 70s. She still works “the night shift at Connecticut Hospice once a week. ‘I want to be part of it as long as I can,’ she says, ‘It’s become part of my life, my philosophy.’”

 

 

 After graduating from nursing school in 1955, she started her career at Memorial Hospital (now part of Memorial Sloan Kettering Cancer Center) in New York City. There she cared for patients with cancer, many of them young women.

“At that time, we didn’t talk about death and dying,” she says. “We weren’t allowed to talk about that. It really haunted me for years.”

I remember those restrictions well. The diagnosis of breast cancer was withheld from my beloved Aunt Lena. I was in the first year of nursing school but never visited her in the hospital. One evening, when I was talking to my mother on the phone, I asked, “How is Aunt Lena?” “Just fine,” my mother said. That’s when I knew she had died. My mother would give me the bad new when I next went home to visit.

Puzycki mentions that she heard both Cicely Saunders, a doctor who founded the first hospice, and Elisabeth Kübler-Ross, who opened up discussion on dying through her 1969 book On Death and Dying. The early 70s were heady times in health care as discussion heated up regarding the previous taboo of being honest with patients by telling them their cancer diagnosis.

Kübler-Ross’ book was the subject of a workshop for the medical staff at the time I worked for a community hospital in the early 80s. To this day I remember one of the surgeons storming out of the classroom after loudly protesting, “my patients don’t want to hear that they have cancer.”

Being present for patients and “picking up on the little things” is to Puzycki the key to hospice nursing. And she says that seeing the compassionate actions taken by her colleagues, especially the younger ones, makes her feel hopeful about the future of the profession. She recently saw, for example, a fellow nurse lean down and kiss an elderly patient on the head. “I said, ‘That’s a good hospice nurse.’”

 

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WHY DO WE WRITE?

Originally appeared on September 16, 2012.

Nursing Stories

I attended the book signing this past August. Farther Along, written by my friend and mentor, Carol Henderson, which told the stories of thirteen mothers (she is one of them), a bakers dozen as Carol points out, who had lost children at various ages.

I was prepared to cry. I don’t do well with death of children, even adult children. Children shouldn’t die before their parents. Maybe that’s why I choose geriatrics as my specialty. Old folks die. It’s expected. No surprises. I can deal with that.

I teared up but didn’t cry and was somewhat unprepared for the humor, serenity, and lack of self-pity as the six mothers read sections from the book. But then ten years had passed since the women came together under Carol’s guidance and direction. Certainly bereavement takes time to absorb, rant and rage against, come to terms and eventually accept the grievous loss…

View original post 179 more words

A Hospice Nurse is Featured in The New Yorker

Larissa MacFarquhar is a staff writer for the New Yorker. She has written profiles on “do-gooders,” people whose altruistic acts “spring from genuine empathy.”

Her subjects are varied: Quentin Tarantino, Diane von Furstenberg and Paul Krugman. Most recently she spotlighted Heather Meyerend, not a famous person, but a nurse. Her story starts on page 62 in the July 11 & 18, 2016 edition of The New Yorker, titled: The Threshold: A hospice nurse’s encounters.

“Heather Meyerend is a hospice nurse who works in several neighborhoods in South Brooklyn—Sheepshead Bay, Mill Basin, Marine Park, Bensonhurst, Bay Ridge. She usually has between sixteen and twenty patients, and visits each at home once a week, sometimes more. Some patients die within days of her meeting them, but others she gets to know well, over many months. She sees her work as preparing a patient for the voyage he is about to take, and accompanying him partway down the road. She, like most hospice workers, feels that it is a privilege to spend time with the dying, to be allowed into a person’s life and a family’s life when they are at their rawest and most vulnerable, and when they most need help. Some hospice workers believe that working with the dying is the closest you can get on earth to the presence of God.

Heather is not brisk or efficient, as nurses in hospitals are. She is purposely inefficient, in fact. Most of the time when she visits patients, she doesn’t have much to do: she takes vital signs, she checks that there are enough supplies and medications in the house, she asks if old symptoms have gone away or new ones developed. If she were rushing, she could do all that in about five minutes, but her visits usually last an hour or more. Sometimes there is a complicated medical situation to take care of. Sometimes she does something non-medical that needs to be done, which is the hospice way—she might sweep a floor, she might heat up dinner. But, even when there’s nothing else to do, the idea is to be around longer, to chat, to sit close by, to put her hands on the patient’s skin as she goes about her checkup. Her visit may be the high point of the day for the patient, who may not be able to get out of bed, or for whoever is taking care of the patient, who may not have left the house or seen anybody else for a day or two; either or both of them may be going a little crazy and may badly need interruption or variety of any kind, ideally someone different to talk to. So Heather moves slowly; she sits down; she delays; she lingers.” (Italics mine)

 

 

Heather Meyerend examines Mary, a ninety-two-year-old woman, at her home, in Marine Park, Brooklyn, in September, 2015. Mary died later that month. Heather believes in caring for the whole person, body and mind. PHOTOGRAPH BY EUGENE RICHARDS FOR THE NEW YORKER
Heather Meyerend examines Mary, a ninety-two-year-old woman, at her home, in Marine Park, Brooklyn, in September, 2015. Mary died later that month. Heather believes in caring for the whole person, body and mind. PHOTOGRAPH BY EUGENE RICHARDS FOR THE NEW YORKER

 

Weaving throughout Heather’s story, MacFarquhar gives us the scope of hospice:

“Hospice believes in caring not only for the patient but also for the family, and tries to address psychological and spiritual needs as well as physical ones, providing social workers and bereavement counsellors, music therapists and chaplains, who work together as a team and consult one another frequently.”

And the history of hospice:

“The first modern hospice was founded in 1967, in London, by Cicely Saunders, who was both a doctor and a social worker: she wanted to offer homelike care that aimed to provide comfort and serenity rather than to prolong life. Two years later, Elisabeth Kübler-Ross’s book “On Death and Dying” focussed public attention on the idea of the “good death.” The first American hospice opened in 1974. In those days, hospices were small nonprofits staffed mostly by volunteers; but in the mid-nineteen-eighties Medicare began to cover hospice, and now roughly twice as many people in America die in hospice as die in hospital.”

And an overview of the dying process:

“As the end approached, patients sometimes fell into an agitated delirium in which they saw people from their past appear in front of them as they lay in bed, often people who had died years before. This happened more often than Heather had expected—to about a third of her patients. The spectres appeared sometimes sitting in a chair by the bed, sometimes standing near the door. Often, a dying patient saw his mother or his father in the room, waiting. Sometimes these spectres were welcome: it seemed to the patient as though someone he loved who had gone on before had come back to accompany him to a life after. But other times the spectres were terrifying. Sometimes a patient believed that someone was running after him, out to get him; sometimes he was haunted by someone he had hurt long ago.

When death drew closer, a patient usually began to withdraw, not wanting to see people, and talking less if someone came. He began to sleep more. There was a kind of quieting, a kind of drawing in, as if he needed time to prepare. He might open his eyes for a minute and smile, but then he closed them and returned to wherever he had been. Hearing was the last sense to go. The patient might seem to be asleep or far away, but still he might hear what his family said around him. People tended to whisper around a dying person, so Heather might say to them, Don’t whisper! Talk, play music, he can still hear you.

When death is imminent, the breathing changes, and discoloration begins. The skin under the nails starts to get cyanotic, to turn blue. The legs grow dusky and cool. When Heather sees these signs, she calls family members who aren’t there and tells them, If you want to be here, this is the time. But she has seen, many times, that the patient seems to choose whom he wants there at the moment of death. Sometimes he waits for someone to arrive; but just as often he waits for someone to leave. Heather would see a husband or a wife or a child sit by the bedside day after day, hour after hour, and then he or she would say to the patient, I’m just running out to the market for ten minutes to get lunch, or I’m just going to take a shower, and that would be the time the patient would go. This happened over and over again. She wasn’t sure why. Maybe the dying person wanted to spare his spouse or his child the grief, or maybe it was harder to let go with that particular person around. Maybe dying was just easier to do alone.

If Heather was there when the end was very near, she would ask if the family wanted to gather together in the room. Then she would hang back, leaving the family to say goodbye. If the family were Christian, and if they had talked about that before, she might ask if they wanted to pray together. If the family were not Christian, she didn’t want to impose her beliefs, so she prayed silently in her head: God, here is this person, have mercy on him.”

“The patient’s breathing changes. He might stop breathing altogether for half a minute or so, and then start again. Then he stops again, but for longer. Then starts again, but shallower. This means that death is very close. For a person who hasn’t seen dying before, this strange, unpredictable breathing can be bewildering, a horror: because of the irregular intervals between the breaths, there is no knowing until a while afterward which breath is the last. Just before it happens, there is a staring. The eyes don’t focus anymore. The person is not there behind the eyes. Even so, Heather may need to step forward, after waiting some time, because the family may not know that the patient is dead.”

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Impressive how MacFarquhar entertains and educates The New Yorker reader about both hospice and the life of a hospice nurse, topics not usually given such high visibility. It’s the attention to Heather’s interactions with her patients that I so enjoyed reading. You see, I once worked as a hospice admissions nurse. The immediacy of connection with the patient and family could be overwhelming. I never knew what I would find with each new admission—anxiety, fear, apprehension resided in most households. The caregivers, who could be spouses, friends, siblings, adult children, and parents, had to learn about medications, side effects, how to care for the patient, and be prepared for the final outcome, death. It was not a time to rush with instructions. I knew that assessing strengths and shortcomings of the family unit would save problems later on. I loved my job.

One day, the supervisor pulled me aside before I left to see my first patient. In the chill of an empty hallway, she told me I was too slow. Not that I was performing poorly, but that I was too slow.

I knew “too slow” meant that I was costing the organization money. But I also knew I was doing a good job as evidenced by the frequency of hugs I received from the family/caregivers before I left, and the appreciation from the nurses who took over the care of those I had admitted and went out of their way to tell me, “the caregivers are always so well informed.”

It saddened me that management didn’t appreciate my efforts. I didn’t want to work for an organization that valued the bottom line over patient/family satisfaction.

And since I didn’t want to be faster, I quit.

It’s clear MacFarquhar’s did her homework, depicting the specialness of hospice and a nurse who chose to work there. Hospice is not the same as an acute care hospital. The patient and family needs are different and there is no need for hurried nursing care. What is necessary is a nurse who lingers.

THE TIME IS RIGHT

Taking a Blog break. This post appeared on March 10, 2013.

Nursing Stories

A friend deliberated whether she should visit her father for his 95th birthday. She was swamped with commitments. Since he was unaware of his birthday as well of his surroundings and didn’t even recognize his three daughters, there was no urgency to travel to another state.

However, she cleared her schedule and made the trip, as did another sister and a niece. Both lived out-of-state also.

As it turned out, on his birthday, he had a choking episode with difficulty breathing. He stopped eating and died three days later, surrounded by those he loved who otherwise would not have been there had they not come to commemorate the day he was born.

This story reminded me of a patient I cared for back in the early ‘90’s when I worked as a nurse practitioner in a home care program. I had made a first visit to an elderly man…

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Baby Found A Home

UnknownThere is one story I wrote that still chokes me up every time I read it. How could it be that something that happened over 40 years ago could still feel so raw?

I walk down the hall of that ten-room pediatric unit in my mind—passing the linen closet on the left, the utility rooms on the right and a room directly across from the nurses’ station with a huge glass window for the sickest children. There weren’t pediatric intensive care units at the time and hospital rules prohibited parents from staying overnight. I, along with my nurses aide, had full responsibility for all the babies and children over an eight-hour night shift. I was twenty-one.

It was in that linen closet that the baby, covered with a blue baby blanket in an isolette, was left to die. I had all but forgotten about him until his story began to pull itself up from the catacombs in my brain, shake off the cobwebs, and demand attention.

I like to think that by writing Baby in the Closet I have honored his short life.

Thank you Hospital Drive for giving Baby a home.

FAMILIES STORIES

A few years ago, I started to snail-mail a list of questions to my Aunt Anna and she would write down the responses on the pages and mail them back to me. She was my father’s youngest sister and last survivor from a family of ten—five boys and five girls.

I entered some of her answers on my computer and filed away other replies that I haven’t looked at since. Her answers were clipped.

Here’s an example:

Question: You once said the depression was hard on the family. What do you remember about it? How old were you?

Answer: “I was seven years old. I remember wearing cardboard in my shoes (to cover the holes). No hat or gloves in the cold weather. Eating homemade bread and bananas for lunch. Never had money to buy anything until the older ones found work and gave us some (money).

A beautiful doll was given to Aunt Pam (older sister) and me one Christmas. We had to share it. The doll’s face had to be washed with butter, which wasn’t too often. In our socks we got nuts and fruit if we were good. That’s what Santa was giving out in my day. The bad kids got coal in their socks.”

My Aunt Anna taught me you didn’t need to be rich, have advanced degrees or accumulate material possessions to be content. She lived simply, loved her family, especially her grandchildren and great grandchildren, and relished Italian food. She had an irreverent sense of humor, feisty disposition and spoke her mind.

My earliest memory of her outspokenness was something I had overheard as a child. She and her sisters were talking at the kitchen table in Grandma’s house. Aunt Anna had been reprimanded by a Catholic priest during confession when she said she had chosen not to have any more children. She had two sons. When the priest chided her that it was her duty as a Catholic to bear as many children as God sent to her, she told him that he could support them. At that time, I never knew anyone who had talked back to a priest. She continued to question authority throughout her life. I can credit/blame her for my own antiestablishment tendencies.

We spoke on the phone frequently. While she had multiple health problems, she didn’t give in to self-pity but seemed to relish entertaining me with cheeky complaints toward hospital and medical personnel who mistakenly dismissed her as an older, silent, compliant patient.

The last time I visited, four years ago, I taped some of her stories. I can’t remember what she spoke about or where I put the tape. Soon after that I stopped documenting her life. I suppose I thought she would live forever.

She died on Saturday, June 8th three months after her 91st birthday.  I will miss her.

Aunt Anna on left and her husband Tommy on right standing up for her younger brother, Uncle Tommy, and his wife Hedy. Cousin Patricia is flower girl
Aunt Anna, matron of honor, on left and her husband, Tommy, best man, on right. My youngest uncle, Tommy, is the groom. Heidi is his wife.Cousin Patricia is flower girl, age 5.

THE TIME IS RIGHT

A friend deliberated whether she should visit her father for his 95th birthday. She was swamped with commitments. Since he was unaware of his birthday as well of his surroundings and didn’t even recognize his three daughters, there was no urgency to travel to another state.

However, she cleared her schedule and made the trip, as did another sister and a niece. Both lived out-of-state also.

As it turned out, on his birthday, he had a choking episode with difficulty breathing. He stopped eating and died three days later, surrounded by those he loved who otherwise would not have been there had they not come to commemorate the day he was born.

This story reminded me of a patient I cared for back in the early ‘90’s when I worked as a nurse practitioner in a home care program. I had made a first visit to an elderly man in the western suburbs of Chicago who was referred by his doctor because he had terminal cancer (I don’t remember his diagnosis). But I do remember his sunny apartment. He and his wife sat on the sofa, holding hands, his wife’s face streaked with tears. She had just been informed she had breast cancer. The patient calmly told me he wanted to help his wife through her ordeal. He would call me when he was ready to be admitted.

Sure enough, a couple of months later, he called telling me he was “ready to die.”  In another sunny living room, the patient and his wife held hands as they sat side-by-side on a floral sofa in his daughter’s home where they had relocated. His appearance had changed little since I last saw him. His wife had had successful treatment of her cancer and now his responsibility ended. The serenity of that visit remains vivid in my mind as he, his wife and daughter discussed his impending death.

After he disclosed he was having pain, we agreed I would return the next day bringing morphine with me. When I arrived the following afternoon, he was comatose. His daughter called later that evening to say her father had died.

Was it a coincidence my friend’s father died during the time his family gathered around him? Did my patient let go when he knew his wife no longer needed his support?

Calla lilyMaggie Callanan and Patricia Kelley, both nurses, co-authored Final Gifts, a book that speaks to the dying experience. They use the term “nearing death awareness” which “is a special knowledge about—and sometimes a control over—the process of dying.” In a chapter called “Choosing a time: the time is right, they describe how some dying people “choose the moment of death.”

Vignettes of both sudden and lingering death portrayed in Final Gifts show us “what is needed in order to die peacefully” and how “those close at hand can help bring that person peace and recognition of life’s meaning.”

I read this book years ago. Having read it again, I only appreciate all the more how much of a contribution Callanan and Kelley make toward our knowledge and understanding of the dying process. They do this by telling their nursing stories.

I encourage you to read this book.

What stories can you share about your experience with “nearing death awareness?”

VANISHED Part 3 of 3

A couple of weeks after our hallway discussion, I spotted them exiting the elevator. Margaret pushed Josie in the wheelchair with one hand while lugging an IV pole with the other, rushing to the back door of the building and out to the parking lot in a obvious effort to avoid me. The bottle that hung from the pole had a milky beige color that could only be a supplemental feeding. Josie had a tube in her stomach. A conduit to deliver nutrients to keep her alive.

As much as Margaret had badgered me for recommendations, it was clear she no longer needed, or wanted my input.

I never saw either of them after that day. Soon rumors circulated that Josie had died. No one knew what happened to Margaret.

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