How to Cope with Anticipatory Grief and Ambiguous Loss

What to do when the person you are grieving is here but not here

By Cynthia Orange

[T]he longer we live and the more we experience, the more we find ourselves in the cracks between joy and contentment on one side of life’s continuum and grief and loss on the other. Children leave our nests, we move from vocations to avocations — from retirement to, as a dear friend puts it, “re-aspirement.” Addresses, relationships, bodies, even spouses, can change. More loved ones get more serious diagnoses. Sometimes we get dreaded medical test results ourselves.

When someone dies, the loss seems clear. But what about those times when grief is anticipatory — when the diagnosis is terminal and we grieve the inevitable? Or times when the loss is ambiguous? Perhaps a parent shows signs of dementia, a son or daughter in the military is missing in action or returns from combat with PTSD (post-traumatic stress disorder) or a dear friend has a serious stroke. Maybe a loved one is in the throes of addiction. What was has changed, replaced by uncertainty.

When You Are Caught in ‘Frozen Grief’

University of Minnesota emeritus professor and family therapist Pauline Boss, author of Ambiguous Loss, calls this state of complicated loss “frozen grief.” A loved one might be physically present but psychologically absent, as in the case of Alzheimer’s or other mental disorders. Or he or she might be psychologically present (to us) but physically absent, as in the case of a child gone missing or a tragedy like 9/11 where many bodies were never recovered. More common situations like divorce, adoption or estrangement can also cause confusing feelings of ambiguous loss.

We are a society that doesn’t do well with ambiguity. We want clarity. We want steps to acceptance. We want closure — a concept that makes me want to tear my graying hair out! Grief is a messy process, and ambiguous loss even messier.

“My point is very different, that ambiguous loss is a complicated loss, which causes, therefore, complicated grief, but it is not pathological. . . it’s a pathological situation,” said Boss in a 2016 interview with Krista Tippett, host of Public Radio Exchange’s On Being.

Boss, and those in the therapeutic community who have embraced her ideas, give us permission to ride the waves of this type of loss without feeling pressured to “just move on,” as so many expect us to do. Instead of feeling alone in a state of “bewilderness,” we learn that the pangs of grief we have when someone is here — but not here — are normal.

Her Mom’s Wish

As I wrote in my recent book, Take Good Care: Finding Your Joy in Compassionate Caregiving, a woman in my caregivers’ group beautifully described how it feels to ride this sea of rolling emotions:

Mom was in a memory care facility but still willing and able to have us take her out for special occasions. After one Easter family dinner at my house, Mom thanked me for the nice meal, commented on our nice family, then said, “Do you know what I wish?” “What, Mom?” my sister and brother and I all asked. “At times like this, I really wish I had children.”

We are still able to laugh about that memory; sometimes with Alzheimer’s, that’s all you can do. Then you go off to another corner of grief and look for the cracks of light — she still responds to hands that hold and hugs that enfold. She still likes to sit outside and look at the flowers. So here we are. But we are so ready.

A friend of mine compared ambiguous loss to water. Water can run through your fingers, but it can also become ice, still and solid.

“Water, not water, yet water,” she said. Her words helped me deal with the flood of emotions that overwhelmed me when my father was diagnosed with terminal cancer. “Dad, not dad, yet dad,” became my mantra before and after his death.

Your Unique Grief

As these anecdotes demonstrate, loss is as varied as the people who experience it, and we deal with it differently.

“The only expert on grief is the person experiencing a particular loss at a particular time. You,” writes Tom Ellis, a licensed marriage and family therapist and author of This Thing Called Grief. “Grief is so personally unique and changing that getting your mind and heart around it once and for all is impossible. Just when you reach a place of understanding, it changes again…. Despite this dilemma, there is value in gathering as much information as possible, in pulling together some tools to help.”

Tips for Coping

Here are some suggestions for people supporting someone, or those in the midst of their own ambiguous loss:

  • Don’t pressure yourself or others to “just move on.” As a therapist friend once told me, there is no closure for this type of grief — you just learn to carry it differently.
  • Be tender with yourself and try to take comfort in the knowledge that your feelings are normal. However, get the help of a qualified professional if your feelings overwhelm you to the degree they affect your ability to function or if you seek to escape them through addictive or harmful behaviors.
  • Seek support from family and friends who love, affirm and listen to you with open mind and ears and non-judgmental hearts.
  • Set and maintain appropriate and respectful boundaries. Although well intentioned, some caregivers tend to swoop in with answers or directives, when the best they can do is be with you in your ambiguity. As Ellis points out, “Loss is the problem, not you.”
  • Loss and grief can take their toll, so self-care is extremely important. Exercise, meditation, nature, journaling, play and laughter can all help. We each have different balance points and tipping points, but we can usually sense when things are out of balance.
  • Ask for, and accept, help when needed and offered. Let friends garden or clean for or with you. Let them take you to dinner or watch your children. So many caregivers have told me what a gift it is to do something to lift the burden or spirits of someone in need.
  • Make room for grief and loss, but try to take time each day to notice the beauty that surrounds us.

Each of our stories is unique, so the way in which we process loss will differ. But it is important to remember that we do not travel alone.

Complete Article HERE!

Walking hand in hand: Hospice workers accompany dying people

Lisa Sartin

By Jerrilyn Zavada

[A]s a nurse, Lisa Sartin has been interested in end-of-life care.

Sartin began her nursing career 25 years ago and has worked in oncology, critical care and as a nursing supervisor.

But in the last year, working as a hospice nurse for OSF Home Health in Ottawa, she found her niche.

“When I was working with oncology patients, I was just out of nursing school and loved it, but it was a little stressful,” Sartin said. “I was 22 years old and thought I could fix everything. Hospice was something I was just always interested in. This opportunity was available and I tried it and loved it.”

Sartin and the rest of the hospice care team, which includes skilled nursing, a social worker, certified nursing assistants and the chaplain/bereavement coordinator, work closely with one another to provide mental, physical and spiritual support for dying people and their families.

“From the minute they are admitted, each patient is always treated individually,” Sartin said. “Each patient has individual needs, each family has individual needs. We assess where they’re at in the grieving process, acceptance process and develop a plan of care from there.”

Sartin said the frequency with which the team visits the patient and family depends on the illness. A key responsibility of the nursing staff is education, especially on pain management and medicine administration.

“We see them a couple times a week,” she said. “If they are more critical, we see them more often. We go out and we’re there for the whole family. We’re caring not just for patients but for the whole family. You develop very close friendships and relationships with them.”

At a time when emotions can be all over the map for everyone involved, Sartin takes special care to be honest with the patient and their family about what they can expect.

“I tell them I will always be honest with them and that I can’t promise them any time, but what time there is I will make comfortable for them,” she said. “Everyone is different. Not everyone can handle the same conversations at the same time. By the time of the transition, families and patients are very educated and ready. Some patients want to be educated right up front and others want to be educated as they’re going through the process. All are educated the same, just at different rates.”

When death is imminent, Sartin says most people are prepared, but she’s not sure anyone is ever ready.

“Every family is different,” she said. “They’re prepared to see the family member not suffer anymore. I’ve been present for many passings. As a nurse our job is to be a support system. There are many times when we get in the car and we cry, but our priority is to be a support and be with them at the time of death.”

Although hospice care isn’t for everyone, those who do work with dying people and their families find a great personal reward from the task. Sartin says hospice workers have to be caring and compassionate, not only for people, but also for the line of work they are doing.

“Hospice is very rewarding. In nursing you want to fix everybody,” she said. “Sometimes helping means not fixing. It is rewarding knowing you have helped a patient and family through what is the most difficult time in their life. You’ve given comfort and know you’ve made the passing as peaceful as it can be. I’m rewarded every day by the friendships I make with the families and the patients.”

Each member of the hospice team brings a great deal of professional work ethic. Still, the nature of the job is they are losing someone with whom they have formed a relationship.

“You become very close to them,” Sartin said. “With each patient you lose, you are losing a friend. That part is difficult. But the benefits and rewards you get in the job very much outweigh that part of it.”

Throughout the process, Bill Clark, bereavement coordinator, is present for the dying patient and the family to help with the grieving process.

“I visit the patient or family as often as they request me,” Clark said. “Providing active listening is primary. By listening, I am able to discern their needs and concerns about dying. The bereavement coordinator’s presence, spiritual support and prayers are what they most request.”

After the patient’s death, the bereavement coordinator continues care for the family for 12 to 13 months in various ways. Once a year, a memorial event takes place for families who have lost a loved one in the previous year.

Clark, also an ordained minister, provides a calm, pastoral presence “by representing the love of God and the hope of heaven and eternal life He has promised through His Son Jesus.” He also offers prayers, which he says hardly anyone declines.

“One of my important assignments is to ascertain their religious background and even offer to contact their own pastor, priest, rabbi or any other religious clergy,” Clark said. “I never attempt to replace someone’s church or clergy, but simply come alongside for additional spiritual support.”

During his years as a hospice chaplain, Clark, says he is surprised at how most people are able to work through a lot of their own issues within themselves.

“Their own faith background helps them,” he said. “They often need a sounding board for their thoughts and feelings, which the chaplain can provide. I have discovered that people with faith have more peace in the midst of the dying process than those who do not … Many questions are resolved in a surrendered life and future to God through prayer.”

Complete Article HERE!

Don’t Neglect the Softer Side of Your Estate Plan

Document and share your wishes for end-of-life care, the care of your pets, the disposition of your tangible assets, and more.

By Christine Benz

[A]s my family’s “first responder” and resident financial person, I served as power of attorney for my parents, as well as executor and trustee for both.

Their estate-planning documents attended to a lot of crucial issues: the distribution of their assets, the trusts that were to be set up upon each of their deaths, and their attitudes toward life-sustaining care.

Yet having gone through the process of seeing my parents through their last years and settling their estates, I’m struck by the number of “softer” decisions these documents didn’t cover–important topics like their attitudes toward receiving care in their home or in a facility, or whether they’d prefer to die at home or if a hospital was OK. Did I need to split up all of the physical assets equally among the children, or were they OK with me letting more stuff go to family members with a greater need for them?

Implicit in making someone an executor, trustee, or guardian, or delegating powers of attorney, is a statement that that you trust that person’s judgment to do what is best in various situations, including some of those outlined above. But I think it’s worthwhile to think through some of the softer, nonfinancial issues that could arise in your later years. Some of these issues, such as providing for the care of pets or getting specific about the disposition of your physical property, can be addressed with legally binding estate-planning documents. Other issues, such as how you’d like your loved ones to balance your care with their own quality of life, are best discussed with your loved ones and/or documented in writing on your own. (If you decide to leave physical or electronic documents that spell out your wishes on some of these matters, be sure to let your loved ones know how gain access to them.)

Attitudes Toward Guardianship
If you have minor children and have designated guardians to care for them if something should happen to you, you of course need to inform the guardians and make sure they’re OK with the responsibility. In addition, take the next step and communicate to your designated guardians about your priorities and values as a parent–your attitudes toward their education, spirituality, and financial matters, for example. And even if your children are grown–or getting there–it’s worthwhile to talk to close friends or family members about how you hope they’ll interact with your kids if you’re no longer around. After my sister lost a dear friend to cancer, for example, she and a group of other close friends serve as surrogate “moms” to their late friend’s daughter, now in her mid-20s. There’s no substitute for an actual mom, of course but it’s a relationship they all cherish, and they’re happy they discussed it with their friend before she passed away.

Attitudes Toward Life During Dementia
Given the increased incidence of dementia in the developed world, an outgrowth of longer life expectancies, it’s worth thinking through and communicating to your loved ones your attitudes toward your care and quality of life if you develop dementia. Would you prioritize in-home care above all else, or would care delivered in a facility be agreeable if it improved your spouse’s quality of life? Would you want your spouse or other loved ones to try to care for you themselves for as long as possible, or would you rather they delegated those responsibilities to paid caregivers, assuming the family finances could support it? How would you like your loved ones to balance your quality of life with their own? How would you like them to balance your health and safety with your own quality of life? How important would it be to you to receive daily visits from your spouse and other loved ones, even it meant that those obligations would detract from their ability to travel or pursue other activities? Would you prefer to keep your decline as private as possible, or would you rather be out in public interacting with people no matter what? There’s no “right” answer to any of these questions, but talking through them can help your loved ones be at peace with the decisions they could eventually make.

Attitudes Toward End-of-Life Care
I first became aware of The Conversation Project, designed by to help people discuss their own thoughts on end-of-life care, on NPR. In the segment, two adult daughters used “The Conversation” template to interview their elderly dad about the decisions they might eventually make on his behalf. Their father had drafted an advance directive that specified, rather strictly, that he didn’t want any life-sustaining care if he had no chance for a good quality of life. But one of the daughters asked whether it would be OK if they took a bit more time with the decision to let him go if it provided them with a sense of peace. Without skipping a beat, the dad said, “Oh, of course. Absolutely.” That conversation drove home the importance of adding nuance to the end-of-life discussion, above and beyond what could be provided by living wills or advance directives. You can read more about The Conversation Project and download a conversation starter kit here, but don’t feel bound by it. If there are important end-of-life issues that it doesn’t address, feel free to expand the discussion with your loved ones and/or commit them to writing.

Attitudes Toward Funerals, Burials, Etc.
Many people make plans for any funerals/memorials and the disposition of their bodies well in advance; the right approach to these issues may be predetermined by culture or religion. But for other people, attitudes toward these matters aren’t obvious at all, so it’s useful to spell out your wishes in advance, either verbally, in writing, or both. (My mother initially insisted that my dad would be buried rather than cremated, but even she was convinced that cremation was the right thing after we found three written statements from him about his desire to be cremated.) Maybe your wishes are simply to have your loved ones say goodbye in whatever way gives them the most peace at that time; in that case, tell them that or write that down.

Attitudes Toward Care of Pets
It’s a cliche to say that pets are like family members, but for many people, that’s absolutely the case. The good news is that you can actually lay the groundwork for continuing care for your pet as part of your estate plan. The gold standard, albeit one that entails costs to set up, is a pet trust; through such a trust, you detail which pets are covered, who you’d like to care for them and how, and leave an amount of money to cover the pet’s ongoing care. Alternatively, you can use a will to specify a caretaker for your pet and leave additional assets to that person to care for the pet; the downside of this arrangement is that the person who inherits those assets isn’t legally bound to use the money for the pet’s care. At a minimum, develop at least a verbally communicated plan for caretaking for your pet if you’re unable to do so–either on a short- or long-term basis. This fact sheet provides helpful tips to ensure for your pets’ continuous well-being.

Attitudes about Disposition of Personal Possessions
Are there specific physical assets you’d like to earmark for children, grandchildren, nieces, nephews, or friends? If so, your estate-planning attorney can help you codify the disposition of those assets in your will so there’s no confusion. Also let your loved ones know if there are physical assets that you’d like to stay within the family (again, your will is the best way to do this). Importantly, you should also let them know what you don’t feel strongly about them selling or otherwise disposing of when you’re gone. Do you want your executor to take pains to divide the assets equally among your heirs so that everyone receives tangible property of similar value? The topic of dividing up tangible property among family members is a complicated one, to put it mildly; the more you say about your wishes in advance, the better off everyone will be in the end.

Complete Article HERE!

The Brutal Truth Of Living With A Terminal Illness

Brought to you by Stop The Horror
Stop The Horror is a five-minute short film that confronts viewers with a harrowing retelling of the true events surrounding one man’s traumatic death.

Kass Hall is a law student with a background in art and design; she lives with her husband and their pug called Elvis. She describes herself as a sister, a daughter, an aunty and a friend. 

She has been living with cancer for 27 years.

“I’m getting good at defying the odds, but I’ll never be in remission,” Kass says. “I’ll always be under my oncologist and surgeon’s eagle eyes, and I know that each hurdle, big or small, is a hurdle closer to the finish line.”

Impending death is not the kind of thing you adjust to. Despite the number of times she’s come close, Kass, now 39, is frank about being scared. She is under no illusions about what dying is like — she has seen “many, many friends, from children to older people, dying slowly and painfully.”

“I’ve been in the room in the final moments of life, and though we do our best to make people ‘comfortable’, it’s a situation I do not want to find myself in — for my own sake and that of those who love me,” she says.

She hopes that finish line isn’t soon. But in the event that it is, she wants a say in drawing that line.

This is how Kass has come to be an advocate for voluntary assisted dying legislation — her experience leaves her pretty uniquely placed to clap back at people opposed to it. With new assisted dying legislation proposed in Victoria at the moment, now is a particularly pressing time to persuade people of the bill’s importance.

“I have always liked the idea that, when I reach ‘my line’, I could choose to end my own pain. Watching someone you love die is one of the worst experiences a human can endure, and I imagine being the person dying is even worse.”

It’s an experience explored in the recently released film, Stop The Horror. A graphic five-minute short directed by Justin Kurzel, the film tells the true story of a man who dies over a period of three weeks, exploring what he and his family are forced to deal with.

Getting Diagnosed

Kass’s first diagnosis was in 1990, when she was twelve. The kind of cancer she has is incredibly rare, and was hard to pin down for a long time — as she wryly puts it, “what they thought it was then is not what they think it is now”.

That first diagnosis led to surgery and chemotherapy. On five separate occasions, her parents were called to the hospital to say goodbye. And yet, against all odds, Kass survived, though not without complications. “At that time I lost part of my stomach and duodenum [the first section of the small intestine],” she says. “The chemo left me infertile and with a heart condition, though thankfully my heart has remained strong.”

These complications have been multiplying steadily ever since. In 2000, Kass lost a kidney. In 2008, her thyroid. In 2011, the cancer returned to her stomach and liver. It was only in 2012 that her doctors discovered she had a genetic defect that was causing the tumours to return.

That was the moment, Kass says, when realisation hit. “This disease was — barring the unforeseen — what would kill me”.

Here’s the cruel thing about this genetic defect: in addition to all but guaranteeing the cancer’s return, it makes Kass ineligible for an organ transplant. And while so far it’s been possible to combat the resurgence of tumours with surgery, she’s keenly aware that things can’t continue this way forever.

“There’s going to come a time where surgery is no longer an option, and that’s when I start the slow process of dying.”

“The idea of dying anytime soon is not one I am comfortable with,” she says, “but who is, though?” She’s coming up on her 40th birthday in January, a milestone her oncologist has been telling her for years would be a “great outcome”.

Why Voluntary Assisted Dying Legislation Matters

Assisted dying has always been controversial, often for reasons Kass is keen to see us move past. Concerns about younger people — not children, but adults in their late teens and early twenties — having access to the option of assisted dying are, to Kass’s mind, utterly dismissive of terminally ill young people’s experience.

“There is no difference in older people and younger people making this decision,” she says. “If anything, for younger people the decision is harder because we think about what we may miss out on — weddings, children, travel.”

Kass says arguments that say young people with terminal illness don’t have the necessary perspective or clarity to decide to end their lives “seek to debase a person’s autonomy and thought process.”

“It’s designed to second guess a person. No one has the right to do that. Anyone who said that to me would probably not like the response they get from me.”

As for those who argue that choosing to die is a selfish act, Kass says her response “probably isn’t fit to print”.

“What I can say is that what other people think is not my problem. They are not living my life, they’re not walking in my shoes. Everyone has an opinion, but my life deals in facts. What others think about my choices, especially if they’ve never experienced my situation, is of zero consequence to me”.

Some of the most legitimate and important critiques of voluntary assisted dying legislation, though, come from people who have experienced Kass’s situation, or situations like it. These campaigns are run by people with terminal illness or life-threatening disabilities who are concerned that assisted dying legislation will needlessly kill many people through a subtle combination of pressures. Things like, for example, the feeling of being a burden on close family or medical services.

These are arguments Kass is willing to engage on — she says she’s aware of and understands the campaign in question, but thinks the legislation proposed by the Victorian Government includes adequate safeguards, including a multi-step process she hopes will catch any instance of family or external pressure.

“To my mind,” she says, “that is why patient autonomy is the key. At the end of the day, what family members think and what their needs are is not what this is about — it is and should always be about the primary patient. If the primary patient has not requested and been through the voluntary assisted dying process, then it shouldn’t be available.”

“And any family member that puts any pressure on a person who is dealing with illness or disability should find the map to hell and go there. There are so many people in the disability community and those with long term illness who have so much to contribute and who are outstanding members of society. Having an illness or disability doesn’t diminish us as people.”

Reaching The Finish Line

In Kass’s case, she knows her husband will support her decision if she reaches her line. She hopes that won’t be soon — she wants to grow old with her husband, see her nieces and nephews grow up, have a full legal career. For the time being, she’s optimistic.

But even on good days, the line is there, and Kass says that when she hits it, she has “no hesitations” about what she’ll do.

“I have no interest in suffering unnecessarily,” she says. “It will be my decision.”

“I respect that this won’t be for everyone. I just feel that a choice for those of us who do seek to end our own suffering should be given to us. We all have our own paths in life, and should have as much choice made available to us as possible.”

Complete Article HERE!

Dogs in Funeral Homes Offer Comfort for the Grieving

Mourners receive unconditional love from the animals, who often know who needs it most

Marcy Johns who is preparing for the funeral of her sister holds Angel at Cornerstone Funeral Services in Boring, OR.

By Kerri Fivecoat-Campbell

[J]an Thomas wouldn’t have described herself as a “dog person” six months ago. But that was before she met an 8-year-old Lhasa apso named Angel at a most unlikely place, the funeral home that hosted her sister’s visitation and funeral.

Angel is the official mascot and unofficial therapy dog at Cornerstone Funeral Services, a small family business owned by Elizabeth Fournier in Boring, Ore.

For years, therapy dogs have been used to help in hospitals, nursing homes, hospices, schools and even at the site of disasters such as Ground Zero at the World Trade Center. Fournier and a growing number of funeral directors across the country also believe therapy dogs can help people in possibly their greatest time of distress: when they’re making arrangements after the death of a loved one. And the dogs have been greeted — often literally — with open arms.

Dogs in Funeral Homes Offer A Calming Effect

Thomas, 52, said most of her family was prepared for the death of her sister, Tammi, 56, who had battled a long illness. But Jan Thomas’ 18-year-old son, Zachary, was close to his aunt and took the loss hard.

When Zachary, who has autism, was introduced to Angel, the small dog calmed him as he sat for nearly two hours petting and playing with her.

“When Elizabeth told me I could go in with Angel, I did,” Jan Thomas said. “When I went in the room with Angel, I felt more like I was with a friend next door. Elizabeth has a very casual setting with a homey feel and Angel really made a difference for me, she is such a quiet dog. There is definitely something to the calming effects.”

Indeed, many studies have proven that animals have not only a positive emotional effect on humans, but also physiological effects, including reducing blood pressure. And therapy dogs have also shown to have a calming effect on children with autism.

Fournier introduced Angel in the business as a puppy. “I had a baby and brought Sofia [the baby] to work with me,” said Fournier. “Sometimes people would come in and hold her, and when she got older and it was time to quit bringing her to work, people would still come in and ask for her. I realized something was needed to help people cope, so Angel took Sofia’s place.”

‘Unconditional Love’

Kriss Kevorkian, a therapist who works in private practice in Gig Harbor, Wash., and is an adjunct professor at Walden University, said that it’s especially important for children to have such interaction at a difficult time.

“I’ve worked with kids in therapy who wanted to bring their own pet to funerals and they weren’t allowed,” said Kevorkian. “Animals give us so much unconditional love, as any of us are going through the process of grief, it gives us that extra sense of comfort.”

Michael Perotto has seen that same unconditional love from Rocky, a 2-year-old goldendoodle that he and his family raised to work at their business, Bartolomeo and Perotto Funeral Home in Rochester, N.Y.

When a family is gathered before a service, “he greets every single person,” Perotto said. “Somehow, some way, he can figure out who’s having the hardest time and then he’ll park with that person.”

Rocky is even trained to go with a mourner to the kneeler bench, put his paws on it and lower his head, as if in prayer.

Perotto said he watched one small boy approach the kneeler with Rocky to pray. “When I watched it, it was so moving and so powerful — it’s unreal,” he noted.

Easy to Relate To

Fournier said she has never had any complaints about Angel, but said she learned with Sofia to only include her in the meeting if people were receptive. “I would schedule appointments during Sofia’s nap times; I know everyone isn’t receptive to a baby in the office,” said Fournier. “With Angel, I leave her in the office and if people have an issue with her, she stays there.”

Fournier said Angel seems to also know when people need some comfort and instinctively keeps her distance if people aren’t receptive to her presence.

For Thomas, her only challenge now is the debate at home with Zachary about getting a dog. “We have the conversation almost daily,” said Thomas, laughing. “He really wants a dog.”

Complete Article HERE!

The Poetry of Death

When death, as public as a President or as private as a lover, overwhelms us, it speaks itself in elegy’s necropoetics.


[J]ane Kenyon and I almost avoided marriage because her widowhood would have been so long, between us was there such a radical difference in age. And yet today it is twenty-two years since she died, of leukemia, at forty-seven—and I approach ninety. I was a high-school freshman and decided to write poems five years before Jane was born. She finished primary school in 1958, the year that I took a teaching job in her home town of Ann Arbor. With me came my wife, Kirby, and my son, Andrew; my daughter, Philippa, arrived three years later. The marriage crumbled after a decade, and I endured five wretched years of promiscuity and booze. To our endless good fortune, Jane and I found each other and, three years later, I quit teaching and we moved to New Hampshire. My children came east for their education and remained here as our neighbors. In my twenty years with her, everything in my poetic history happened again, this time to Jane: her first poem in Poetry, her first book, her second, an N.E.A. fellowship, her third book, a Guggenheim, her fourth book, multiple poetry readings, her reputation rising and spreading.

When we knew for certain that she was about to die, she told me the whereabouts of her unpublished poems, and I read them for the first time. They were dazzling, and I faxed them to the New Yorker. When we heard back from the poetry editor Alice Quinn a few days later, Jane’s eyes were open but she couldn’t see. I told her that Quinn was taking seven poems. She had stopped speaking, but her oncologist said that she could still hear.

Poetry begins with elegy, in extremity, as Gilgamesh laments the death of his companion Enkidu, watching worms crawl out of Enkidu’s neck. Homer sings of heroes as they die in battle, and Priam weeps to see the body of his son Hector dragged around the walls of Troy. Virgil follows Aeneas from the graveyard of Troy to the founding of Rome, Dido’s pyre flaming on the way. In the fifteenth century, poetry emigrated from Chaucer’s England north to the Scots, where William Dunbar wrote his elegy for the makers—in Greek, a poet is a “maker”—and grieved over twenty-five dead and dying Scots poets. Not a line from them remains. In “Lament for the Makaris,” Dunbar writes:

I that in heill wes and gladnes,
Am trublit now with gret seiknes,
And feblit with infermitie;
Timor mortis conturbat me.

He hes done petuously devour
The noble Chaucer, of makaris flour,
The Monk of Bery, and Gower, all thre;
Timor mortis conturbat me.

He hes Blind Hary and Sandy Traill
Slaine with his schour of mortall haill,
Quhilk Patrik Johnestoun might nocht fle;
Timor mortis conturbat me.

The refrain translates as “the fear of death confounds me,” but conturbat is more violent than “confounds.” A few years later, in Shakespeare’s English, Hamlet dies, Lear dies, and Prospero dies. In Milton’s “Lycidas,” the vowels of lament are golden, as erotic in sound as they are in “Paradise Lost,” but the grief is formal, not intimate; literary, not literal. Tennyson’s “In Memoriam” embodies grief before resolving it by theology. The profoundest or most mournful American lament is Whitman’s for Lincoln, “When Lilacs Last in the Dooryard Bloom’d.” A great elegy from the seventeenth century, rooted among the best poems of the English language, is Henry King’s “The Exequy”:

Accept thou Shrine of my dead Saint,
Insteed of Dirges this complaint;
And for sweet flowres to crown thy hearse,
Receive a strew of weeping verse . . .

His bride has died in her twenties: “Thou scarce had’st seen so many years / As Day tells houres . . . ” In almost a hundred lines, tetrameter couplets hurtling with a passion of grief, King looks ahead to his own death and the inevitable reunion with his bride. It is not compensatory.

Sleep on my Love in thy cold bed
Never to be disquieted!
My last good night! Thou wilt not wake
Till I thy fate shall overtake:
Till age, or grief, or sickness must
Marry my body to that dust
It so much loves; and fill the room
My heart keeps empty in thy Tomb.

When Jane and I lived in New Hampshire together, we suffered the deaths of dear friends and of cousins. Edna Powers, the granddaughter of my grandfather’s brother, was a parishioner of the South Danbury Christian Church—affectionate, large, warm, outspoken. She died, in her late fifties, on the operating table at the Franklin Hospital. I read Henry King’s “Exequy” aloud.

When death, as public as a President or as private as a lover, overwhelms us, it speaks itself in elegy’s necropoetics, be the subject a twenty-five-year-old bride or Enkidu or Edna Powers or Blind Harry or Abraham Lincoln or Jane Kenyon. “The Exequy” kept me company again when Jane died.

[W]hen I was nine or ten, Great-Uncle Wilfred felt a pain in his back at Cousin Nannie’s funeral. We buried him five months later. I woke in the night hearing myself declare, “Now death has become a reality.” My first poem, at twelve, was “The End of All.” At one point, I decided that if we flattered death, it might spare us, so I wrote “Praise for Death.” Between my two years at Oxford, I returned to the United States for my own wedding. My New Hampshire grandparents couldn’t attend—the year before, my grandfather had suffered a malfunction in a heart valve. The day after the wedding, before sailing to England, Kirby and I had only a day to drive to the farm where I had spent my childhood summers, listening to my grandfather’s stories, haying with him every afternoon, eating my grandmother’s chicken fricassee or red flannel hash for dinner. My mother’s father, Wesley Wells, had been my life’s love, the measure of everything. Kirby met Kate and Wesley; we ate a hen fresh from the henyard; we chatted; and when Kirby and I started upstairs for sleep, Wesley could not help but tell a funny story. The night he and Kate married, Kate’s cousin Freeman had wired a cowbell to their bedsprings.

Three days later, Kirby and I boarded the Queen Elizabeth for England and Oxford. In March, the airmail letter from my mother arrived—transatlantic telephone calls had to be scheduled—telling me that my family was burying my grandfather. In our Banbury Road flat, for a season, I sat at my desk writing “An Elegy for Wesley Wells,” fiercely iambic, making him the high point of the dying world. “Soon I will leave, to cross the hilly sea / And walk again among the familiar hills / In dark New Hampshire where his widow wakes.”

[T]wo and a half years after our wedding, Kirby gave birth. When the baby turned out to be a boy, we named him after my father and me, Donald Andrew Hall. We would call him Andrew. Every night, with pleasure, I gave him his 2 A.M. bottle. Every day, I worked on a poem called “My Son My Executioner.” The New Yorker published it, an anthologist put it in a college textbook, teachers assigned it, and for decades textbook anthologies reprinted it. I was the fellow whose son strapped him into the electric chair.

My son, my executioner,
I take you in my arms,
Quiet and small and just astir
And whom my body warms.

Sweet death, small son, our instrument
Of immortality,
Your cries and hungers document
Our bodily decay.

We twenty-five and twenty-two,
Who seemed to live forever,
Observe enduring life in you
And start to die together.

In Andrew’s first autumn, Kirby enrolled for her senior year of college. We had married after her junior year. I fed Andrew breakfast while his mother took classes and studied or wrote papers at the library. I gave him his bath, played with him, changed his diapers, put him down for his morning nap, changed his diapers again, walked around with the baby on my shoulder, and gave him another bottle. At noon Kirby relieved me. I liked to be part-time mother while remaining the father of my executioner.

[M]y father turned fifty-two on December 6, 1955. He died, of lung cancer, two weeks later, and we buried him, on Christmas Eve, in the Whitneyville Cemetery in Hamden, Connecticut, a block from the house he grew up in. During his seven months of dying, I drove the two hours to see him once a week. He could not speak outright of his approaching death. In a low voice that cracked and shuddered, he murmured, “if anything . . . should happen . . . to me . . .” Week after week I watched as his skin paled, he grew frailer. My mother, Lucy, rubbed his balding head. He died a few hours before one of my weekly visits. The last time I sat with him alive, I thought that every breath might be his last. I had not yet observed the brain-stem breathing—three quick breaths, a pause, and a long one—that I would see as my ninety-seven-year-old grandmother, and, twenty years later, my wife, died.

Everyone was there for my father’s funeral. My grandmother took the train from New Hampshire, from the tiny depot of Gale, three-quarters of a mile from the farm. She wore her Sunday black dress. Kirby brought Andrew, and I remember him playing with a plastic toy telephone. My mother, a widow at fifty-two, hadn’t had a night’s sleep for many months. She would live until almost ninety-one without dating another man. It was cold as we buried him in the early darkness.

For many months afterward I worked on “Christmas Eve in Whitneyville.” I used Thomas Gray’s stanza, if not the rhythms, of “Elegy Written in a Country Churchyard.” It was the best poem I had written, and it lamented that my father never did what he wanted to do. “’The things I had to miss,’ you said last week, / ‘Or thought I had to, take my breath away.’ ” I decided that, for the rest of my life, I would do what I wanted to do. I sent the poem to the Kenyon Review, the prestigious literary magazine of its day, and John Crowe Ransom accepted it, calling it “pious.”

[J]ane’s own necropoems began when her father died. During his cancer, she and I flew from New Hampshire to Michigan and, with her mother, took turns staying up all night beside him. Not long after he died, Jane’s poems attended my almost-death. Two years before her leukemia, I lost half of my liver to cancer. My surgeon said that, after such an operation, a man of my age had a thirty per cent chance of living five years. We wept driving home from the hospital. She showed me her poem “Pharaoh” as I lay in bed recovering from surgery:

I woke in the night to see your
diminished bulk lying beside me—
you on your back, like a sarcophagus
as your feet held up the covers. . . .
The things you might need in the next
life surrounded you—your comb and glasses,
water, a book and a pen.

“Is it all right?” Jane said, bending anxiously over me in the bedroom’s half-light. Jane had the habit of repeating a difficult sentence with a heavier emphasis. She said again, “Is it all right?” “It’s a wonderful poem,” I said as I finished it. I paused and added that, yes, it was remarkable to read of my own death, I was so used to writing about other people’s. When I was still skinny with chemotherapy, she showed me a draft of “Otherwise” beginning:

I got out of bed
on two strong legs.
It might have been
otherwise. I ate
cereal, sweet
milk, ripe, flawless
peach. It might
have been otherwise.

As she showed me the poem, it ended two stanzas later: “But one day, I know, / it may be otherwise.” I wonder if Jane suspected that I would change a word; frequently, we revised each other. I crossed out “may” and wrote “will.” And so it was, but not as we assumed.

When, twenty-odd years later, the New York composer Herschel Garfein set several of my poems to music for tenor and piano, he mentioned my name as he visited the medical school at Columbia. “Oh, yes,” a doctor-teacher told Garfein. “We use him.” After I published my book of poems about Jane’s death, many medical schools used me. Sometimes they invited me to read to their students and to answer questions. Twice, the University of Utah flew me from New Hampshire to Salt Lake City to read my poems at the School of Medicine. I told student doctors about our oncologist, Kris Doney, in Seattle, where Jane had her bone marrow transplant. Dr. Doney adhered to Jane’s suffering and to my own as husband and lover. After the successful transplant and our return to New Hampshire, when Jane’s leukemia outwitted her new marrow, Dr. Doney flew cross-country for Jane’s funeral.

Stories of dying and death used to reside outside medical discourse. Death was medical failure, and doctors concentrated on the not yet dead. Then, in the second half of the twentieth century, attention turned to the only event common to everyone. In 1967, in England, the doctor Cicely Saunders founded St. Christopher’s Hospice, not to prolong life but to comfort the dying. Death and grief were subject to intimate analysis in Elizabeth Kubler-Ross’s “On Death and Dying.” Gradually, we have equipped ourselves to think and talk about the dread of terminal suffering. Palliative care has become a medical profession, and dying the subject of lyric and narrative attention. Columbia offers a master’s degree in narrative medicine, directed, appropriately, by Dr. Rita Charon. A doctor at the Yale School of Medicine, Anna Reisman, quoted Jane’s last poem, “The Sick Wife,” on NPR, saying that doctors still “don’t really understand what patients are going through.” Ira Byock wrote “Dying Well.” Atul Gawande’s “Being Mortal” was a bestseller for a year. Every season adds to the literature of dying. Necropoetics includes necromemoir. The young neurosurgeon Paul Kalanithi wrote “When Breath Becomes Air” as he was dying of cancer at thirty-six. Smitten with multiple tumors, he continued to operate on patients. While dying, he made his suffering into a devastating memoir. Last year, in the Journal of the American Medical Association, Dr. Jed Myers, a psychiatrist who lives and works in Seattle, wrote “Poetry’s Company” after he watched his father die over six months of glioblastoma. He quotes from my poems about Jane’s death, then from my friend Christian Wiman, afflicted for decades with his own multiple cancers. Myers ends by addressing the medical profession. “I commend to you, fellow physician, the pragmatically useless treatment called poetry, whereby we might leave our patients less alone when our medicine leaves us all alone.”

[B]efore she became my student, Jane had lived a quiet, rural life, just outside the bustle of Ann Arbor. Her parents were musicians, and she grew up in a house full of books. In junior high, she started writing poems and keeping a journal. She enrolled in the University of Michigan, flunked biology, dropped out, took a job, returned to major in French, studied to be a teacher, switched to English, and took my lecture course in Yeats and Joyce. The following year, she applied to take my poetry workshop, and most of the poems she submitted were slight and fantastic, a habit of the moment that Robert Bly called “light verse surrealism.” Yet one of her poems was darker and stronger. She wrote of trying to capture the attention of her sick grandmother, approaching the hospital bed “like the young nurse with the needle.” The image brought her into my class and altered our lives forever.

In the first three years of our marriage, when we stayed in Ann Arbor, she worked on poems mostly when I flew out of town to do poetry readings. When I was at home my presence appeared to inhibit her. In New Hampshire, for the first time, she worked on poems every day. Here she had no job, no local past nor friends. We had each other, we had our house, we had our landscape, we had my cousins in the small white clapboard church. Every day was devoted to each other or to making poems. She wrote tentatively about inhabiting my place, my history. She saw, or imagined she saw, my ancestors haunting our kitchen. She floated in space like an astronaut detached from the mother ship—or was she attached? She found in the shed a woman’s long gray hair.

A poet from Ann Arbor had moved to Boston, a woman Jane’s age who belonged to the Alice James Poetry Cooperative. Joyce Peseroff recruited Jane, and the Cooperative published her first book, “From Room to Room,” in 1978—the beginning of her career in poetry. Jane and Joyce started a poetry magazine, Green House, addressing their generation of young poets. It was eight years before Jane did another book, the second of the four, but as she published new poems in magazines she came to national attention. I remember when the New Yorker bought its first poem by Jane, “Thinking of Madame Bovary.”

The year when Jane published her first book, I brought out my seventh—that’s what she had to put up with. “Kicking the Leaves” was a breakthrough for me, deriving its force from the ecstasy of marrying Jane and the change from university teaching to life in New Hampshire. My bland first collection, in 1955, had been overpraised. When the second book followed—and the third and the fourth and the fifth and the sixth—no one paid much attention. (Just before “Kicking,” I published a prose reminiscence of older poets. Friendly reviewers found it ironic that the author of “Remembering Poets” had once been a promising poet.) “Kicking the Leaves” was reprinted many times, selling in the end ten times as many copies as my first six titles together. With my marriage to Jane and my return to old sources, I had found myself as a poet.

Meanwhile, Jane’s reputation bloomed, poem after poem and book after book. Three or four times a year she workshopped with Peseroff and Alice Mattison, who published short stories in the New Yorker, and would return from the three-woman workshop triumphant. I watched her excitement and progress with joy and envy.

For decades, she and I had written what could be described as the same sort of poem. It was free verse—mostly short poems in lines of largely similar length, delicate rhythms with forceful enjambments and an assonance of diphthongs. My earliest poems, long before Jane and I knew each other, were rhymed and metrical. Ten years after Jane’s death, out of love for Thomas Hardy and the seventeenth century, I wrote metrical poems again, many of them about Jane. But in the long middle of my life I improvised, like Jane, a sensuous sound without meter. Our work had been different enough—people knew us apart—but we belonged together to a stylistic consensus. Then, as Jane moved from glory to glory, the language of my poems began to diverge from hers. In one lengthy collection, my lines became more ironic and more ingenious in structure. A subsequent, still weaker book collected brief plain poems of anecdotal reminiscence. It appeared just after Jane died, and a compassionate reviewer attributed its failure to my anguish. Over the years I have come to understand how or why my poems altered and deteriorated. Working beside her, I felt overwhelmed as I read “Let Evening Come” and “Briefly It Enters.” I admired the embodiment of her struggle with depression in “Having It Out with Melancholy.” I remember when she handed me “Twilight: After Haying,” one summer after a neighboring farmer finished cutting our fields:

Yes, long shadows go out
from the bales; and yes, the soul
must part from the body:
what else could it do?

The men sprawl near the baler,
too tired to leave the field.
They talk and smoke,
and the tips of their cigarettes
blaze like small roses
in the night air. (It arrived
and settled among them
before they were aware.)

The moon comes
to count the bales,
and the dispossessed—
Whip-poor-will, Whip-poor-will
—sings from the dusty stubble.

These things happen . . . the soul’s bliss
and suffering are bound together
like the grasses. . . .

The last, sweet exhalations
of timothy and vetch
go out with the song of the bird;
the ravaged field
grows wet with dew.

Such sensuous beauty. As the dew falls the soul eases into bodily receptiveness. These devastating enactments of Jane’s art became daily events. The emotional abundance of her language climbed to the summit of literary achievement, the pupil exceeding her teacher, and I made my poems as unlike Jane’s as I could manage.

[W]hen Jane was put to bed in Dartmouth-Hitchcock, an hour north of our house, I rented a motel room next door and spent every day with her. I took notes in brief lines of verse—observations, anecdotes, humors, terrors. I found and used a few of these lines later, when I assembled my poems of her death. Only six months into Jane’s leukemia, I had drafted the poem “Without” in the present tense. She had been diagnosed in January. In the New Hampshire Hospital, as we waited for a stranger’s bone-marrow match and a flight to Seattle in late August, I saw the trees begin to turn yellow from the window. I had not noticed the melt of March nor the green leaves when they arrived in April. We inhabited not the natural world but the landscape of leukemia. I read a draft of “Without” to Jane. From her bed, Jane said, “You’ve got it, you’ve got it!” A year later, I put the poem into the past tense, and eventually it became the title of my book of Jane’s death.

In the weeks after her funeral, I drove four times a day to her grave. I read novels only if they exercised rage and misery—“No Country for Old Men,” not “The Ambassadors.” I took pleasure only in disaster: Oklahoma City, an airplane crash in New York with everyone killed. My days were misery, except for an hour in the morning, when I revised the wailing and whining I had drafted beside her hospital bed. Today I realize that these death poems had already begun to bring my language back to life. One morning I looked out of the window at her garden. Her peonies, basketball-sized, stood tall and still unopened late in May, with weeds starting from the black earth around them. I began the poem that, by autumn, became “Weeds and Peonies.”

Your peonies burst out, white as snow squalls,
with the red flecks at their shaggy centers
in your border of prodigies by the porch.
I carry one magnanimous blossom indoors
and float it in a glass bowl, as you used to do.

Ordinary pleasures, contentment recollected,
blow like snow into the abandoned garden,
overcoming the daisies. Your blue coat
vanishes down Pond Road into imagined snowflakes
with Gus at your side, his great tail swinging,

but you will not reappear, tired and satisfied,
and grief’s repeated particles suffuse the air—
like the dog yipping through the entire night,
or the cat stretching awake, then curling
as if to dream of her mother’s milky nipples.

A raccoon dislodged a geranium from its pot.
Flowers, roots, and dirt lay upended
in the back garden where lilies begin
their daily excursions above stonewalls
in the season of old roses. I pace beside weeds

and snowy peonies, staring at Mount Kearsarge
where you climbed wearing purple hiking boots.
“Hurry back. Be careful, climbing down.”
Your peonies lean their vast heads westward
as if they might topple. Some topple.

It was Jane’s “prodigies”; it was Jane’s “magnanimous” blossoms; it was Jane who saw Gus’s “great tail swinging” and the “repeated particles” of snow. After her death I was able again to assume a diction as potent as Jane’s. I revised and finished “Without” and “The Porcelain Couple” and “The Ship Pounding.” I wrote “Letter With No Address” in our common language, and continued my posthumous one-way correspondence through “Letter After A Year.” After “Without,” I continued to write about Jane in “The Painted Bed,” sometimes returning to metrical forms. In the months and years after her death, Jane’s voice and mine rose as one, spiralling together the images and diphthongs of the dead who were once the living, our necropoetics of grief and love in the singular absence of flesh.

Complete Article HERE!

Most Families Wait Too Long to Utilize Hospice Care

Researchers say elderly people are in hospice care for an average of only 12 days. Why aren’t they admitted sooner?

by Gigen Mammoser

[H]ospice centers provide valuable end-of-life care for the elderly.

So, why aren’t more people using these centers?

The Medicare hospice benefit (MHB) was established in 1982 in order to give recipients access to high-quality care near the end of their lives.

But, new research in the Journal of the American Geriatrics Society states that those who utilize the service often do so too late.

The study included 562 individuals, all aged 70 and older with an average age of nearly 87 years.

Of these older adults, only 43 percent of them were admitted to hospice during their last year of life.

While hospice is available to individuals with six months or less to live, researchers found that for half of the study participants their duration of hospice care was less than 13 days.

The authors say underutilization of hospice care can create a burden for healthcare workers, and result in patient suffering.

Why don’t people utilize hospice?

The reason why hospice care isn’t used more frequently is complex.

According to statistics from 2000, only 23 percent of Medicare beneficiaries who died were in hospice care at the time.

The MHB was initially offered for those with end-stage cancer. However, more and people have begun seeking hospice care for noncancer-related ailments.

The problem is that other issues, such as frailty and dementia, may be harder to discern when determining an individual’s eligibility for hospice care.

“It is well documented that the prognostication [predictability] for those patients with a noncancer diagnosis is more difficult and is a complicating factor for physicians and others who refer patients to hospice care,” said John Mastrojohn, executive vice president and chief operating officer of the National Hospice and Palliative Care Organization (NHPCO).

Lead study author, Dr. Thomas Gill, a professor of medicine at Yale University, agreed.

“Cancer tends to have the most predictable course,” he told Healthline, “meaning it is generally easier to predict when someone with cancer is in the last six months of life than someone with another terminal condition.”

“The challenge is even greater for older persons since many die from a combination of different conditions and/or debility, none of which may meet criteria for hospice,” Gill added.

That gets even more problematic when you look further at the results of Gill’s research:

The most common conditions leading to death were frailty and organ failure, not cancer. However, hospice acceptance rates for frailty were the lowest, and for cancer the highest.

Waiting too long

Not only is care jeopardized by condition, but by duration of stay as well.

The median of 12.5 days spent in hospice indicates that even when individuals do utilize the MHB, it is at the last possible moment.

“A large proportion were admitted shortly before they died, which makes it difficult for hospice to optimize its benefits,” said Gill.

Hospice care offers a unique opportunity to individuals who are near death in that it is not intended to cure them.

It is strictly palliative, meaning it is meant to provide comfort and quality of life.

Benefits of hospice care, Mastrojohn told Healthline, include expert pain management, spiritual support, as well as social and physical activities, tailored to the individual.

Hospice also provides service to families through bereavement support to help them deal with the loss of a loved one.

“Hospice is a benefit delivered by clinicians who are expert in the care of those with serious, advanced illness,” said Mastrojohn. “It is my hope individuals would be more open to receiving hospice services so they can maximize the many benefits they need and deserve.”

Changing how hospice is viewed

While this new research helps to highlight the underutilization of hospice care, it does not provide crystal clear answers why.

However, the authors hope that their work will lead to better strategies for addressing those who need hospice care, and getting them enrolled sooner in a program, rather than waiting until the last moment.

But hospice care also represents a difficult dilemma for families, which may help explain why duration of stay is so low.

For some, putting a loved one in hospice care can sometimes be seen as a sign of defeat.

“Some patients and/or families might interpret hospice as ‘giving up,’ but this is clearly not the case,” said Gill.

Complete Article HERE!