North Hawaii Hospice Volunteer Coordinator Bobbi Bryant developed an end-of-life doula program for volunteers earlier this year.
By Jan Wizinowich
[S]ince 1986, North Hawaii Hospice has been providing end-of-life care and support for their local community members. The in-home care by their trained staff and volunteers has eased the journey out of life and given support to family and friends left behind.
Recently, through the efforts of Bobbi Bryant, the hospice’s volunteer coordinator, training has been offered to volunteers to become end-of-life doulas, returning to old wisdom and benefits that can be derived from it.
“Caring for the sick and dying before the Civil War happened in the home. It was just a continuation of women raising children. They cared for the elders at the end of their life,” Bryant said.
But with the rise of medical technology, the end-of-life stage was taken out of the hands of the family, and the knowledge and wisdom was lost.
“People were being brought to the hospital to die, and then they were embalmed so we weren’t really caring for people at the end of life. We lost our skills,” Bryant said.
The resurgence of end-of-life doulas are a reflection of the return of birth doulas beginning in the 1970s.
“Midwives to the dying have been around for a long time. It started as a result of the resurgence of birth doulas and midwives. The model transferred to how we can care for people at the end. There was a lack of education around the dying process and when people wanted to start caring for their loved ones, there was a lot fear. The conversation around death had come to a standstill,” Bryant reflected.
Recognizing the need for doula training, Bryant attended a conference on death and dying on Maui last April.
“When I came back, I spent the next several months creating a curriculum and trained 14 people including nurses, an ER doc and health aids,” she said.
The decision to enter hospice care can be difficult, but once made it can free the family and caregiver to focus on the patient.
“If you come for hospice support early, you can have so much support. There’s so much pain and suffering that isn’t necessary,” Bryant shared.
The North Hawaii Hospice team includes a lead, general and vigil doula. Initially, the lead doula meets with the family and the patient to provide information about all the ways they can assist them, and establishes a relationship of trust.
The doula’s role is to provide non-medical comfort and to be a facilitator; both subtle and profound. On a practical level, the doula does whatever needs to be done — offering companionship, running errands, assisting with household chores, providing healthful meals and helping with bathing and personal care.
“You just be there, be grounded and love them. You need a way to get trust from people. As soon as I get there, I get my hands on them. The medicine doesn’t always help. So when they’re in a lot of pain I’m running energy with that pain and helping them to move the pain through, and helping them to relax,” said Rose Riedesel, a hospice volunteer and healing body worker.
But a primary role for the doula is to sit, listen and be aware of what’s happening with the various aspects of the patient’s care in order to act as an information conduit between the medical care team and the patient.
“The doula is an adjunct to the professional people involved. They’ll find out some information that the care team needs to know and they’ll pass that on, or if the family needs some information the doula will pass that on to them,” Bryant said.
Emotional well-being is vital to ease the dying process. A big part of the doula’s role is to encourage the patient to “talk with people about their life and find places of deep meaning; a deep connection in life, the people who meant something to them in their life, the experiences, what their passions were and what their difficulties were. It allows the person to sink into this process of dying,” Bryant observed.
Another role for the doula is to notice any unresolved issues, which can cause anxiety and tension in the patient.
“They listen in the stories for anything that’s unresolved. Sometimes you’ll hear something about a family member who needs to be forgiven. We want that person to have as much relaxation as possible in the end,” Bryant said.
The lead doula also helps the patient and family with a vigil plan that includes the creation of a peaceful space, along with a team of doulas sitting in shifts when the active dying phase begins.
“They help create a beautiful space for the dying person to be in with things such as art, quilts, photos and a certain scent. They ask, ‘Would you like something read to you? Who do you want with you? Can somebody get into bed with you?’” Bryant said.
After the patient has passed, the doula assists the family in making arrangements, and follows up with them.
“The doula assesses how to help the family at that time and backs out. In a couple of days, they give the family a call and ask to come and talk about what happened, maybe a beautiful touch or an interaction before the person actually stopped speaking,” Bryant said.
Just as with the birth process, dying is a time of loving connection.
[J]ohn “Jack” Zito, 96, doesn’t give up easily. When his wife of 73 years was facing her final days last year, Zito put every ounce of energy and effort he could muster into caring for her so that his beloved Noni could die at home.
Noni died in May; she was 95. It was about a year before she died, as her health was rapidly deteriorating, that Lisa Jeansonne began helping Zito. An experienced end-of-life caregiver, Jeansonne’s gentle presence and calm demeanor was the balm Zito sought as he cared for his ailing wife.
Zito’s eyes moistened and he dabbed at them with a handkerchief in a recent interview, remembering his wife and the care Jeansonne lovingly gave her.
“That is why Lisa is here now,” Zito said. “She looks after me. When that time comes, she’ll be here to help me, too.”
Jeansonne would go on to receive specialized training from her employer to become an end-of-life doula — a professional who can provide comfort to a dying person, and support to that person’s family. It’s part of a growing recognition across Wisconsin and nationally that caring for the dying is a skill — for some, a calling — and can be a pillar for family members.
For Zito, Jeansonne’s care for Noni, given name Margaret, helped forge a lasting emotional connection.
Jack Zito, 96, looks at photographs of his children playing with a young Lisa Jeansonne, who now serves as caregiver for Zito and previously took on the role as an end-of-life doula for his wife, Noni, so she could die at home.
A World War II veteran and retired Chicago business owner, Zito has the strong, clear voice of a younger man. He enjoys puttering about the kitchen cooking, verbally sparring with Jeansonne as they duel in Scrabble games and “letting her” drive when the duo completes household errands. Noni’s death has left a chasm in Zito’s heart and Jeansonne’s companionship partially fills the void.
The Zitos literally landed in Door County after summers of sailing the Great Lakes when they retired to their favorite boating site. They immersed themselves in church and community activities in northern Door County from their home nestled in the woods near Sister Bay. Noni avidly painted watercolors of the area’s fabled scenery and wildlife, while Zito happily assumed the housework and cooking duties.
For decades their health was good and the couple relished visits from family and hosting barbecues with friends.
Old age began to catch up with the Zitos in 2016 when Noni was diagnosed with congestive heart failure. Zito said he knew the end was coming, but he was determined to care for Noni so that she could die in their cherished home in the northern Door County woods.
The pressure to care for his dying wife was fatiguing and it was emotionally draining to watch Noni decline, he said. Although Zito insisted to his children, who are scattered across the nation, including in Door County, that he didn’t need help, his family arranged for a part-time caregiver from Advocates In-Home Care in Sturgeon Bay.
Since Zito was adamant he alone could care for his wife, he devised a plan. When the hired caregiver arrived for the first day of work, he was going to be friendly, and explain he had everything well managed.
That plan slowly melted when Jeansonne knocked on Zito’s front door about two years ago. Her handshake was firm and she looked him in the eye while explaining her role to help him.
Lisa Jeansonne, an end-of-life doula and caregiver, waters plants at 96-year-old Jack Zito’s Sister Bay residence on Jan. 24, 2018.
Later that day, a bond began to develop as Jeansonne and Zito sipped coffee at the kitchen table while Noni slept. Lisa said to Jack, “I know you. Your kids are about the same age as me and we used to play together in the summer.” Lisa refreshed his memory with tales of summers boating, swimming and fishing off of the Ephraim marina with his kids.
Zito’s eyes filled with tears as he told the story of that day, but he was also smiling. From the very first day, Zito said, he could see that Jeansonne’s quiet presence and easy manner was exactly the help he and his wife needed.
“That day, I saw how good Lisa was with my Noni, and, why she was practically like family,” Zito said.
New movement to die at home
While Jeansonne was hired as a caregiver, she also assumed a role that she has fulfilled dozens of times during earlier positions with families — giving specialized, attentive care to a family member who was dying.
The care Jeansonne provides isn’t medical. Rather, it focuses on doing whatever is needed to ensure the dying person is comfortable. It’s a holistic approach that offers emotional, spiritual and physical support to clients and families.
Jeansonne and other caregivers at Advocates In-Home Care are trained as end-of-life doulas. It’s part of a new movement to enable the dying to remain in their homes.
Similar to a doula who cares for and supports a woman through her pregnancy, an end-of-life doula supports a patient and the family through the dying process, said Marggie Hatala, a registered nurse and end-of-life doula in Door County.
Hatala also is a certified trainer for Doulagivers End of Life Elder Care Training Program and founded Doula Givers of Door County more than a year ago to offer free seminars about end-of-life care and also the training for certification as an end-of-life doula — or, as it is sometimes known, a “death doula.”
The end-of-life doula is there to listen and develop a relationship with the patient that transcends the illness and may last days, weeks or years depending on the prognosis, Hatala said.
“Dying and death has become institutionalized, that everyone dies in a hospital or nursing home,” Hatala said. “Most people want to die at home and they don’t want to die alone.
“People are awakening to the fact that there is a way to have a good death.”
About 25 percent of the Door County population is 65 years or older, according to the state data from 2015. In the same year, about 12 percent of the state’s population was 65 years or older.
Based on population trends, Wisconsin’s elderly population in the state will grow 72 percent by 2040, according to the Department of Health Services.
“This is happening throughout the United State — as the baby boomers are aging, there is going to be a growing need for in-home care,” Hatala said. “Door County already has a large aging population that wants to grow old in their homes.”
A former hospice nurse, Hatala said she was frustrated by being limited to providing medical care when she saw that patients wanted and benefited from having a person consistently with them as they were dying.
“I felt a true need to remain with a patient and their family without any agenda, simply to be present to them,” Hatala said. She became trained as a doula and later completed the certifications to teach and train others after she moved to Door County about five years ago.
In 2017, Hatala’s first class of caregivers from Advocates In-Home Care, including Jeansonne, became certified through Doulagivers of Door County program. Besides training to provide physical, emotional and spiritual support to the dying and their families, doulas also receive training to support family members following the death.
End-of-life doula care is paid for privately unless there is a portion of the service that is covered through the caregiver services provided to a client. The cost for end-of-life doula care is about $20 an hour.
Death can be frightening for an ailing patient and it also raises anxiety for family uncomfortable with death, said Mary Beth Williams, a hospice nurse and caregiver with Advocates In-Home Care. “Most people do not want to die alone, and they want to die at home where everything is familiar with people that they love.”
Doulas work in tandem with medical professionals and hospice programs to provide care that integrates the emotional, spiritual and physical support clients and families seek. It’s different from being a hospice nurse, Williams said, because while the nurse in hospice care focuses on a patient’s medications, a doula’s role is to provide a patient with comfort.
“As a doula, you’re aware of the pain (a patient has) and the medications they are taking, but a doula finds other ways to provide comfort; for example, if someone is short of breath, a fan on their face or elevating their head might be beneficial,” Williams said.
Hatala also conducts online training classes for people throughout Wisconsin.
The participants in Hatala’s online classes are as diverse as the regions of the state where they live. They include a paralegal from Sheboygan, a retired minister from Manitowoc and a practitioner of alternative pain management therapies from Green Bay.
They shared similar stories of being drawn to doula care after exposure to aiding the dying and finding it was a fulfilling and gratifying experience.
The Sheboygan paralegal, Shannon Shaurette, was exposed to hospice care while her father was dying from cancer seven years ago at a Milwaukee hospice.
“The hospice workers were beyond amazing to my dad, my mom and the rest of our family … and after my father died I thought about volunteering at a hospice, but the timing wasn’t right,” Shaurette said.
A friend from Vermont told Shaurette about the growing movement to die at home with the support of an end-of-life doula. She started the classes because she wanted “to be able to bring the same feeling of comfort, peace and love to others, as the staff at the hospice did for my family,” she said.
Jack Zito, 96, sits at the kitchen table in his Sister Bay home on Jan. 24, 2018, while talking with Lisa Jeansonne, an end-of-life doula and caregiver, who currently helps Zito with chores and visits with him three times a week.
A way to a ‘good death’
For Zito, the care Jeansonne gave his wife made her “almost family.”
Prior to the day Noni died, she had been talking and sharing memories with family who had gathered at the Zito home. When she slipped into a deep sleep May 21, family members stayed at her side, holding her hand throughout the day. Zito was gone for a few minutes to make more coffee in the kitchen. When he came back, Noni had died.
“It was very peaceful,” he said. “People were with her, she was holding her son’s hand and she had a smile on her face.” Zito said he will be “eternally grateful” for the hospice care and Jeansonne’s attention to details that provided Noni and his family additional comfort.
Since Noni’s death, Jeansonne has continued to provide part-time care for Zito.
“I do the cleaning and we do grocery shopping, trips to the library or the hardware store together. We like to play Scrabble and Jack loves to read,” she said. “Jack can pretty much take care of himself, but I’m here for the help he does need.”
When Zito’s time arrives for his final journey, Jeansonne said, she will be there to help him and his family.
“He’s a wonderful man and adored his Noni. It’s a gift I can give him to make him as comfortable as possible,” she said.
Learn more about the end-of-life doula program
To learn more about Doulagivers of Door County, call Marggie Hatala at 920-495-1566 or check the website www.marggiehatala.com
[W]ith terminal illness comes newfound, and profound, wisdom, researchers report.
They uncovered this silver lining of terminal illness as people in their final months tried to strike a balance between accepting their fate and making the most of the time they had left.
“The end of life presents a unique perspective,” explained senior study author Dr. Dilip Jeste, senior associate dean at the University of California, San Diego’s Center of Healthy Aging.
“This is an extremely challenging time, a confluence of learning to accept what’s happening while still striving to grow and change and live one’s remaining life as best one can,” Jeste said in a university news release. “It’s this paradox that, if embraced, can lead to even greater wisdom while confronting one’s own mortality.”
The study, funded in part by the U.S. National Institutes of Health and the American Cancer Society, involved 21 men and women between the ages of 58 and 97 who were in the final six months of their lives and receiving hospice care. About half of the patients were dying of cancer.
The researchers asked these people opened-ended questions about wisdom, such as “How do you define wisdom?” and “What experiences have influenced your level of wisdom?” The patients were also asked if their illness had altered their understanding of wisdom. Each of the interviews was recorded, enabling the researchers to analyze and interpret the responses.
The participants ranked traits associated with wisdom. The most important quality listed was having prosocial behaviors, followed by demonstrating social decision-making, emotional regulation, openness to new experiences, awareness of uncertainty, spirituality and self-reflection, as well as having a sense of humor and being tolerant.
The patients admitted that facing their own mortality and imminent death dramatically changed how they viewed wisdom. “My perspective, my outlook on life, my outlook on everything has changed,” said one of the patients. “It’s grown tremendously.”
One common experience among the terminally ill was their desire to find peace or acceptance as their health declined and they lost their ability to function normally.
According to study first author Lori Montross-Thomas, “It wasn’t passive ‘giving up,’ but rather an active coping process. They emphasized how much they appreciated life, taking time to reflect. There was a keen sense of fully enjoying the time they had left and, in doing so, finding the beauty in everyday life.”
Montross-Thomas is assistant adjunct professor in UCSD’s department of family medicine and public health.
One study participant said: “For all my life, being a Southerner and having been in beauty contests, I got up in the morning, put my full makeup on and did my hair every day. A lady was never in her nightgown unless she was giving birth! Now all that is very, very difficult for me… I’ve accepted it, and I’ve realized that I have to let it go… I try to take all this with as much graciousness as possible and I’ve realized that my friends really don’t care that I don’t have makeup on or I’m in my nightgown. They are just happy to see me out of bed sitting on a chair.”
The patients also found that living with a fatal disease stimulated growth, leading to more determination, gratitude and optimism. The researchers noted this path to increased wisdom ebbed and flowed as the patients struggled to find balance, peace and happiness at the end of their lives.
Many patients focused on looking for the positive instead of the negative. “I want them to remember me with a smile, laughing and giggling and doing some of the silly things we do,” one person said. “Why do you want to leave on a sad note? I do not want to be remembered being sad.”
[I]n my early years in hospital pharmacy we made Brompton’s Cocktail in accordance with prevailing clinical guidelines, that is, “to order, for terminal patients”. The cocktail consisted of morphine crystals, cocaine powder, alcohol, syrup and chloroform water and it was given sparingly, on the fourth hour, to a patient in extremis.
In her welcome, engaging book, With the End in Mind, Dr Kathryn Mannix, revisits this practice, using it to highlight the days when medical morphine was spooned out cautiously, often in doses too feeble or too potent for the individual, the days, she writes “before we had worked out how to titrate painkillers”.
Informed by her staff that a new hospice admission was refusing morphine on the basis of bad memories of Brompton’s Cocktail, she visited the dissenter personally and discovered a retired psychiatrist who had once tutored her at medical school. In his experience, patients were rendered semi-conscious by the “industrial strength drug mixture”, unable to speak coherently or with dignity, attributes he could not accept for himself or put his family through. Mannix conquered the role reversal implications of ministering to her one-time mentor and employed her softly, softly conversational approach to bring him to a position where “he might allow that medicine had progressed” since the 1980s.
Mannix is a British palliative-care specialist who, in her own words has spent “half a lifetime … keeping company with the dying”. Her book is part memoir, part witnessing and a good part wise counsel in best practice for the dying. Her strong suit is conquering the moment with a quiet conversation, often begun in an atmosphere of heightened emotions, fixed beliefs and the competing interests of family gathered at the deathbed.
She is a natural storyteller with an eye for detail, dialogue and the telling moment. “I am offering the reader my eyes and ears, my seat at the table, my place in the conversations, and my perspective on events.”
As recently as 2016, Australian author, the late Cory Taylor, wrote in Dying: A Memoir: “For so many of us, death has become the unmentionable thing, a monstrous silence. But this is no help to the dying, who are probably lonelier now than they’ve ever been.”
Mannix wants the lost vocabulary as well as the etiquettes of dying brought back to the death bed. She teaches families what to expect, to give each phase of the body’s shutting down a name. She begins with “the gradual increase in daytime sleeping, the gradual reduction in time spent awake” and ends at Cheyne-Stokes pattern breathing, cycles of fast-to-slow breaths, often with long gaps between, until the “gentle ending of the cycle”. The approach of death, she hopes, will one day be conceived more generally as a process, like birthing, moving stage by stage to an outcome.
The other string to Mannix’s bow is her qualification as a Cognitive Behaviour Therapist, a discipline she used to develop coping strategies for people facing impending death (she wrote Britain’s innovative CBT First Aid Plan for palliative care).
This psychological intervention is reported to dramatic effect in the case study of 22-year-old Mark, who was in the end stage of cystic fibrosis with no transplant available. He was incapacitated by panic attacks, gripped by fear and very angry. Mannix took his fear, put it on paper in a diagram and allowed him to discover how adrenaline was driving the circuit, creating a self-defeating increase in his panic.
The liberating effect of studying the pattern allowed Mark a few months of relative freedom from fear (including a pub outing with mates) before he developed a fatal chest infection. Mannix was called to see him and was greeted by Mark at his most triumphant: “You should be f—ing proud of me … I’m f—ing dying and I’m not f—ing panicking!”
Dr Charlie Corke is an Australian intensive-care specialist and a strong proponent of timely advanced-care planning. His book, Letting Go, walks the same terrain as Mannix but his map is the ICU of a busy hospital where decisions are made on the run, as it were, not in the relative quiet of a hospice setting. His patients arrive in ambulances, desperately ill, close to death, often unable to communicate their wishes, and reliant on a frantic relative’s instructions.
“Doctors and families feel a tremendous responsibility to do something to save (or extend) life,” he writes. “This happens however unpleasant the medical journey is likely to be — and however poor the outcome.”
In crisp, clear prose Corke confronts the reader with the scenario most of us in Western society are likely to face after a period of declining health and function: ambulance, hospital, unconsciousness, no plan in place, family disagreements about treatment, escalation of medical intervention, and finally, our last days spent “connected to machines, cared for by strangers, and separated from family”.
“Medical terminology will dominate our last days and weeks,” he writes.
While not denigrating his own profession, he takes a humanistic approach to its limits. The reader learns of the “covenantal ethic” whereby a surgeon promises to use his or her skills “to battle death on behalf of the patient. In return, the patient puts their trust in the surgeon and accepts whatever is required”. The covenant can have unwanted outcomes, notably when a surgeon has not been given prior permission “to stop if things [go] badly”.
Keeping in mind that “saving is what doctors do”, Corke advocates forward planning well in advance of old age and infirmity, in writing, with the added backup of an appointed decision maker.
He presents brief case histories to show how things can go wrong. Rosalie’s story, for instance, gives pause for thought when appointing a decision maker. She chose May, her only daughter, as her agent. May gave up her job to care for her mother and swore to sensitively respect her mother’s wishes. When Rosalie was taken to hospital after developing a severe infection, May acted upon her mother’s stated wishes: comfort care with no burdensome attempts at cure.
However, May’s five brothers arrived at the hospital and exerted pressure on May to instruct the doctors to do everything possible to “save Mum”. Rosalie was put on life support, had six operations, developed multiple organ failure and finally died. May, writes, Corke, “seemed crushed and guilty”. The message is clear, he summarises, inform everyone concerned beforehand and obtain reassurance that all will respect the bargain.
Making choices is hard. Corke suggests that “prior (well-considered) wishes should carry more weight than a later decision made in a crisis”. And he covers all the bases, from religious to legal ramifications, to distorted portrayals of the success rates of CPR in TV and film, and emotive journalism around withdrawing life support.
The book ends with practical tips and accompanying case histories, tying up Corke’s thesis with the kind of wise, informed advice we crave in the era of Dr Google, advice that may be more useful than we think in light of the recent Productivity Commission Report into palliative care in Australia. Seventy per cent of Australians wish to die at home, without pain and surrounded by family. The “without pain” part is the work of the severely underfunded palliative care sector. Fourteen per cent achieve that goal.
As a manual for how to avoid ending up in ICU, in what one of Corke’s patients called “the bad bit at the end”, Letting Go is a guide book for our age.
After years of living with stage IV cancer, I have some suggestions.
By KATE BOWLER
[E]VERY 90 days I lie in a whirling CT machine, dye coursing through my veins, and the doctors look to see whether the tumors in my liver are growing. If they are not, the doctors smile and schedule another scan. The rhythm has been the same since my doctors told me I had stage IV colon cancer two and a half years ago. I live for three months, take a deep breath and hope to start over again. I will probably do this for the rest of my life. Whatever that means.
When my scan is over, I need to make clear to my friends and my family that though I pray to be declared cured, I must be grateful. I have three more months of life. Hallelujah.
So I try to put the news in a little Facebook post, that mix of sun and cloud. I am trying to clear the linguistic hurdles that show up on my chart. Noncurative. Stage IV. I want to communicate that I am hoping for a continued “durable remission” in the face of no perfect cure, but the comments section is a blurry mess of “You kicked cancer’s butt!” and “God bless you in your preparations.”
It feels impossible to transmit the kernel of truth. I am not dying. I am not terminal. I am keeping vigil in the place of almost death. I stand in the in-between where everyone must pass, but so few can remain.
I was recently at a party in a head-to-toe Tonya Harding costume, my blond wig in a perfect French braid, and a woman I know spotted me from across the dance floor.
“I guess you’re not dying!” she yelled over the music, and everyone stopped to stare at me.
“I’m working on it!” I yelled back, after briefly reconsidering my commitment to pacifism.
We all harbor the knowledge, however covertly, that we’re going to die, but when it comes to small talk, I am the angel of death. I have seen people try to swallow their own tongue after uttering the simple words “How are you?” I watch loved ones devolve into stammering good wishes and then devastating looks of pity. I can see how easily a well-meaning but ill-placed suggestion makes them want to throw themselves into oncoming traffic.
A friend came back from Australia with a year’s worth of adventures to tell and ended with a breathless “You have to go there sometime!” He lapsed into silence, seeming to remember at that very moment that I was in the hospital. And I didn’t know how to say that the future was like a language I didn’t speak anymore.
Most people I talk with succumb immediately to a swift death by free association. I remind them of something horrible and suddenly they are using words like “pustules” at my child’s fourth-birthday party. They might be reminded of an aunt, a neighbor or a cousin’s friend. No matter how distant the connection, all the excruciating particularities of this person’s misfortune will be excavated.
This is not comforting. But I remind myself to pay attention because some people give you their heartbreak like a gift. It was a month or so into my grueling chemotherapy regimen when my favorite nurse sat down next to me at the cancer clinic and said softly: “I’ve been meaning to tell you. I lost a baby.”
The way she said “baby,” with the lightest touch, made me understand. She had nurtured a spark of life in her body and held that child in her arms, and somewhere along the way she had been forced to bury that piece of herself in the ground. I might have known by the way she smoothed all my frayed emotions and never pried for details about my illness. She knew what it was like to keep marching long after the world had ended.
What does the suffering person really want? How can you navigate the waters left churning in the wake of tragedy? I find that the people least likely to know the answer to these questions can be lumped into three categories: minimizers, teachers and solvers.
The minimizers are those who think I shouldn’t be so upset because the significance of my illness is relative. These people are very easy to spot because most of their sentences begin with “Well, at least ….” Minimizers often want to make sure that suffering people are truly deserving before doling out compassion.
My sister was on a plane from Toronto to visit me in the hospital and told her seatmate why she was traveling. Then, as she wondered when she had signed up to be a contestant in the calamity Olympics, the stranger explained that my cancer was vastly preferable to life during the Iranian revolution.
Some people minimize spiritually by reminding me that cosmically, death isn’t the ultimate end. “It doesn’t matter, in the end, whether we are here or ‘there.’ It’s all the same,” said a woman in the prime of her youth. She emailed this message to me with a lot of praying-hand emoticons. I am a professor at a Christian seminary, so a lot of Christians like to remind me that heaven is my true home, which makes me want to ask them if they would like to go home before me. Maybe now?
Atheists can be equally bossy by demanding that I immediately give up any search for meaning. One told me that my faith was holding me hostage to an inscrutable God, that I should let go of this theological guesswork and realize that we are living in a neutral universe. But the message is the same: Stop complaining and accept the world as it is.
The second exhausting type of response comes from the teachers, who focus on how this experience is supposed to be an education in mind, body and spirit. “I hope you have a ‘Job’ experience,” one man said bluntly. I can’t think of anything worse to wish on someone. God allowed Satan to rob Job of everything, including his children’s lives. Do I need to lose something more to learn God’s character? Sometimes I want every know-it-all to send me a note when they face the grisly specter of death, and I’ll send them a poster of a koala that says, “Hang in there!”
The hardest lessons come from the solutions people, who are already a little disappointed that I am not saving myself. There is always a nutritional supplement, Bible verse or mental process I have not adequately tried. “Keep smiling! Your attitude determines your destiny!” said a stranger named Jane in an email, having heard my news somewhere, and I was immediately worn out by the tyranny of prescriptive joy.
There is a trite cruelty in the logic of the perfectly certain. Those people are not simply trying to give me something. They are tallying up the sum of my life — looking for clues, sometimes for answers — for the purpose of pronouncing a verdict. But I am not on trial. To so many people, I am no longer just myself. I am a reminder of a thought that is difficult for the rational brain to accept: that the elements that constitute our bodies might fail at any moment. When I originally got my diagnosis at age 35, all I could think to say was, “But I have a son.” It was the best argument I had. I can’t end. This world can’t end. It had just begun.
A tragedy is like a fault line. A life is split into a before and an after, and most of the time, the before was better. Few people will let you admit that out loud. Sometimes those who love you best will skip that first horrible step of saying: “I’m sorry. I’m so sorry this is happening to you.” Hope may prevent them from acknowledging how much has already been lost. But acknowledgment is also a mercy. It can be a smile or a simple “Oh, hon, what a year you’ve had.” It does not ask anything from me but makes a little space for me to stand there in that moment. Without it, I often feel like I am starring in a reality program about a woman who gets cancer and is very cheerful about it.
After acknowledgment must come love. This part is tricky because when friends and acquaintances begin pouring out praise, it can sound a little too much like a eulogy. I’ve had more than one kindly letter written about me in the past tense, when I need to be told who I might yet become.
But the impulse to offer encouragement is a perfect one. There is tremendous power in touch, in gifts and in affirmations when everything you knew about yourself might not be true anymore. I am a professor, but will I ever teach again? I’m a mom, but for how long? A friend knits me socks and another drops off cookies, and still another writes a funny email or takes me to a concert. These seemingly small efforts are anchors that hold me to the present, that keep me from floating away on thoughts of an unknown future. They say to me, like my sister Maria did on one very bad day: “Yes, the world is changed, dear heart, but do not be afraid. You are loved, you are loved. You will not disappear. I am here.”
[I]nside a medical care facility in central Phoenix there’s a small chapel with frosted glass windows.
On the wall there’s more than a dozen framed photos of smiling faces. These are the people who have passed on here; many were in the final stages of their life.
James Martz was diagnosed with lung cancer in 2017 and hit rock bottom before getting help at Circle the City.
“They all brought their gifts to this world and they ended up in a place where they had no one,” said Lin Sue Cooney, Hospice of the Valley Community Engagement director. “It’s our collective responsibility as a community to make sure that they have dignity and comfort at the end of life.”
The medical care center Circle the City has 50 beds to care for the homeless, and several are reserved for hospice patients. Medicaid can pay for end-of life-care and even those who can’t pay anything are still treated.
The state’s largest emergency shelter, Central Arizona Shelter Services, known as CASS, saw 423 clients over age 62 last year.
CEO Lisa Glow said the oldest, 89, came into the shelter pushing a walker. Her son was taking her pension and she was homeless.
“There’s vulnerability to fraud, vulnerability to disease, vulnerability to abuse and being taken advantage of,” Glow said. She said there aren’t enough resources at CASS or in the Valley to handle the predicted influx of older people who will end up on the streets and in poor health.
“Being an emergency shelter, people have to take care of their basic daily living needs,” Glow said.
Jesus Tovar, 67, was discharged from the hospital to Circle the City.
“Me sufre mucho en la calle, mucho frío, llueve, a veces no tienes que comer.” Tovar said he suffered a lot in the streets; it was cold, it rained and sometimes he didn’t have anything to eat. Tovar is diabetic and has problems with his lungs and heart.
His voice became thick with emotion when he talked about life on the street.
“Aquí tienes cama. Te dan tus medicinas.” Here there’s a bed, they give you your medicine. It’s like another family, Tovar said. “Aquí tiene como otro familia.”
Tovar is also working toward connecting with his own family through a social worker at the center.
Jesus Tovar said he became disconnected with his family when he lived on the streets. He hopes to mend their relationship with the help of a social worker at Circle the City.
“With that aging comes an inherent need for better end of life care and we have to be able to rise to that challenge,” said Brandon Clark, Circle the City CEO.
“When people come here on hospice they frequently have no one,” Clark said. “It’s rare they have no one when they leave this world.”
‘Pride almost killed me’
Almost everything James Martz is wearing from his UnderArmor sweatshirt to his tennis shoes is new, at least to him.
A chunky silver ring on his right hand is one of the only material possessions Martz still has from his “old life.” It represented his time as a member of the North American Hunting Club.
“Pride almost killed me.” Martz said it’s what kept him from asking for help earlier.
Martz can list the events that lead to rock bottom — drug use, an eviction, a pneumonia diagnosis that revealed lung cancer, chemotherapy.
“It would make me throw up, the other thing,” Martz said grimacing. “You didn’t want to eat. You wanted to sleep all the time.”
In September, Martz said his oncologist gave him six to nine months to live.
Around that time he was sleeping in his broken down 1993 Oldsmobile Cutlass in a strip mall parking lot in Mesa. Eventually police kicked him out after the center’s owner complained.
“I just grabbed my meds and anything essential and just walked off the property,” Martz said. He walked until the skin on his feet bubbled into blisters. A hospital covered the wounds with salve and discharged him.
“I got out of the hospital and I tried to get out of the wheelchair they wheeled me in and I couldn’t even stand up,” Martz said. Then he remembered he had a number for Hospice of the Valley.
“He was very sick, sad, uncertain of the future, some anxiety and I think he just didn’t know what was going to happen,” said Kim Despres, a program director at Circle the City where Martz ended up.
Homeless people can recover there when they’re not sick enough to stay in a hospital, but not well enough to be on the streets.
It’s also one of the only places that provides end-of-life care for people who have nowhere else to go. James Martz had decided he was done with chemotherapy and entered hospice there.
Hospice of the Valley took care of 18,500 patients and family members last year. It’s just one of dozens of hospice organizations in the Valley.
[I]f your family doesn’t want your stuff when you’re alive, they sure won’t want it when you’re dead.
That’s the blunt assessment of yet another self-help author from abroad who is trying to get Americans, who have an addiction to collecting and storage units, to clean up their acts.
The latest volley in the decluttering business comes from Stockholm, where 80-ish artist Margareta Magnusson has just published a slim yet sage volume, “The Gentle Art of Swedish Death Cleaning.” The book will be published in the United States in January.
While Japanese item-control diva Marie Kondo gave us strict instructions to keep only things that spark joy, Magnusson’s book is straightforward and unsentimental (with a bit of humor). The main message from this mother of five is: Take responsibility for your items and don’t leave them as a burden for family and friends. It’s not fair. Magnusson says you can keep things that evoke good memories; there are no hard-and-fast rules such as folding your remaining T-shirts to stand upright in your drawers, as dictated by the KonMari method.
The concept of decluttering before you die, a process called “dostadning,” is part of Swedish culture. (It comes from the Swedish words for death and cleaning.) Karin Olofsdotter, 51, the Swedish ambassador to the United States, says her mother and father, who are in their 80s, are in the midst of it back home.
“My parents and their friends are death cleaning, and we all kind of joke about it,” Olofsdotter says. “It’s almost like a biological thing to do.” Olofsdotter says part of Swedish culture is living independently and never being a burden to anyone. How you keep your home is a statement of that.
Magnusson, who has moved 17 times, says women often end up doing the death cleaning. After her husband died, she had to declutter their house; it took her almost a year before she could downsize to a two-room apartment. She says that although it felt overwhelming, she is glad she did it herself, as her husband would have wanted to keep everything and her kids would have disagreed about what to keep and what to toss. This way, she made her own decisions. Now she continues to do it on a regular basis.
Magnusson suggests that age 65 is a good time to start death cleaning, but the process is freeing at any age.
A few of her tips: Don’t start with your photos, as you’ll get bogged down in your memories and never accomplish anything. Make sure you keep a book of passwords for your heirs. Give away nice things you don’t want as gifts, such as china or table linens or books, as opposed to buying new items. Keep a separate box of things that matter only to you, and label it to be tossed upon your death. It’s okay to keep a beloved stuffed animal or two.
Magnusson and one of her daughters filmed a video in which she talks about why she decluttered and how it’s not a sad process, but more of a relief. Her daughter asks whether her mom would help her begin death cleaning. They go to a storage locker overflowing with luggage and clothes and blankets topped by a garden gnome.
“Oh, my God. What are you going to do with all this crap?” her mother says in perfect English, taking a look around. They discuss how long it’s going to take.
“You are never ready with your death cleaning because you don’t know when you are going to die,” Magnusson says. “So it goes on and on.”
