All In This Together: Coping With Advanced Illness and Dying as a Family

By: Fred Nelson MSW, RSW

“The moment we heard about Dad’s cancer diagnosis, everything changed in our family. My sister has always been kind of withdrawn. Well, she started to take over. I felt like my own world had ground to a halt; I couldn’t do anything useful. My brother just got busier and busier – totally absorbed in anything as long as it had nothing to do with Dad. Our first family dinner together after we got the news: we were like strangers. We didn’t have a clue how to even talk to each other.”

We all have our own ways of responding to and getting through a difficult situation. Sometimes we can predict pretty well what we will feel and how we and others will react. Sometimes it’s a complete surprise – to ourselves and everyone around us. The fact is that we are all affected – subtly or in a big way – when someone in our family is diagnosed with a serious illness. Our outlook on life can change. Our behavior can change. Our roles can change. Naturally, all of this affects how we come together as a family.

family

 

‘Family’ is whatever it means to you: a parent and kids; a group of siblings and their partners; a multi-generational extended family; a group of friends who have stuck together through good and bad. That part doesn’t matter. What does matter is that every family, however structured or defined, has its own established roles, rules – generally unspoken – and ways of communicating.

Here are some examples of rules, roles and patterns of communication that may occur within a family:

  • Nobody in the family talks about negative feelings. If you’re sad or angry, keep it to yourself.
  • If you have an issue with someone in the family, don’t talk to them directly; speak to Mum and she’ll deal with it.
  • We catch up on what everyone’s doing on Fridays after work.
  • Uncle Bill always mows the lawn and cleans up after a barbecue.
  • Nobody mentions Peter’s first wife, even when their son is visiting.
  • Only Dad can initiate discussions about family vacations.
  • Nobody ever praises a piece of pottery that wasn’t made by Mum.
  • We all congratulate Chris on his game, even when his team loses.
  • If you need to talk to someone about a disappointment in your life, talk to your big brother.
  • Aunt Julie can’t keep a secret.
  • New Year’s dinner is always at Uncle Remy’s – no exceptions.
  • Amanda is always the one who pushes for us to get together to plan our holiday activities.

family2All of this can be thrown up in the air like a deck of cards when someone in the family gets a serious, life-limiting diagnosis. And what happens when the cards come down? The possibilities are endless as family members:

  • deal in their different ways with strong emotions
  • consider how the future might unfold
  • move, willingly or unwillingly, into roles that have been occupied by someone else
  • work within or challenge established ‘rules’ about gatherings and ways of communicating

Even if individual family members stick pretty much to the roles they have occupied in the past, it is very likely that the intensity of the situation will ‘crank up the volume’ on the ways they interact with one another and force old differences to the surface. For instance:

  • I have never been compensated for the fact that Dad took you into the business and not me.
  • Who said this was my job, anyway?
  • Don’t tell me how I should feel!

Caregiving

Eventually, and sometimes right away, a serious, life-limiting illness means caregiving. Directly or indirectly, someone in the family is likely to become responsible for caregiving. The responsibility may be shared, but often it isn’t. And caregiving can be exhausting – emotionally, physically and financially. The emotional rollercoaster can be extreme (sadness to relief to hurt to fulfilment to guilt to satisfaction to tenderness to anger and resentment to just not knowing how to help). Physical challenges can be immense. (Am I ever going to get a good night’s sleep? How do I get him into this wheelchair?) And while many family caregivers will tell you that the experience is not only doable but life-enriching, tensions are inevitable. For instance, if the needs of a seriously ill family member outstrip the ability of a family caregiver to provide appropriate care. Disagreements over the right course of action are common between the main family caregiver and the person who is ill as well as among family members. Add to this mix, intense feelings, new or entrenched patterns of coping, and new roles, and it may be unrealistic to expect smooth sailing.

Decision-makingfamily3

First and foremost, the person who is ill should remain the central decision-maker for as long as he or she chooses or is able to be.  It is also important for the person who is ill to decide who will make decisions on his or her behalf if necessary. Even if a single member of the family becomes chiefly responsible for the care of the family member who is ill, it is likely that other family members, perhaps all of them, will need to be included in some important decisions. Financial decisions are a good example, and people avoid them for a variety of reasons. For instance, a person who is dying may not want to face financial issues because doing so would require a genuine acceptance of his or her condition. Or it might mean confronting some differences in the ways individuals in the family see things.

The best advice from people who have been in this situation is to be practical, honest and straightforward. For example:

  • I know that you want to be in control of your affairs and money as you have always been, but I am concerned about the ‘what-ifs’.
  • If you haven’t made these decisions and completed the paperwork, I worry about us not being able to do what is important for you when you are unable to do so.

Telling people what they should do – someone who is dying or another family member – may lead to resistance and is usually not as effective as speaking for ourselves.  (E.g.You need to do this now vs. I am concerned that…)

In many families, there is a tendency to try to protect one another by avoiding frank conversations. If we talk about it, we will take away all hope. Or If we talk about death, it will happen sooner. Or This is just too hard for him/her to talk about, when in fact it might be truer to say, “This is too hard for me to talk about.  While such reservations are common, they can actually leave all involved (the person who is ill and family members) feeling isolated and that their feelings and concerns are not heard or understood. It can take a lot of emotional energy not to say what needs to be said. In the end, expressing ourselves to one another and going through tough times together can free up energy for something more worthwhile and help us feel more connected to one another.

Anger

family4Family members are not always on the same page at the best of times. In times of stress, disagreements, conflicts and anger are much more common. Anger often comes from a place of frustration, being misunderstood, being afraid or not being heard or acknowledged. It is a natural reaction to the threat of loss or loss itself. Hurt, fear and feelings of guilt can contribute to anger. Anger often surfaces when we feel insecure or vulnerable.

When everyone is under stress due to a serious illness and an intense caregiving situation, try not to take anger personally. If you can, consider – with as much compassion as you can find within yourself – where the anger is coming from and what feelings or experiences it might be rooted in. Remember that all relationships have a history and that past grievances commonly surface during times of stress. Counselling support can help provide a fresh perspective and help family member talk to and better understand each other, although there certainly are times when differences are too entrenched and individuals are too wounded to resolve issues.

A wise person once said, ‘At any given moment, human beings are doing the best they can.’ The bottom line is knowing what each of us can and cannot take responsibility for, and finding a way to be okay with that.

Conflict

The presence of conflict doesn’t mean there’s something wrong with you or your family, although it certainly can feel that way. When conflict is making you feel like you or your family are failing, think again of all of the changes that are in play – changes in feelings, roles, family ‘rules’, situations, finances – and the stresses that everyone involved is enduring. In fact, it would be surprising if there were no conflict.

Again, with as much compassion for yourself and others as you can muster, step back, take a breath and consider everything this particular conflict is rooted in. Consider all the places that you and your family members find support – community, professional, through the health care system, friends and family – and figure out how to access them. Consider what you can do and what is simply beyond your control. Make sure to treat yourself with kindness and respect.

After all, you and your family members are dealing with the countless changes and challenges that come with caregiving and loss. There are no perfect solutions. But like other human beings, you are doing the best you can. Looking back on this intense time, you may, like many other families, be surprised by your resourcefulness and resilience.

Complete Article HERE!

Learning to Die

By MARGOT MIFFLIN

My mother taught me many things, including, in the end, how to die.

Her death went well, I told the few friends who I knew would understand my meaning: She was not in pain, she was conscious until the day before she died, she was at home, my sister and I were with her. It was a peak experience, revelatory and meaningful — something I wouldn’t have traded for anything — except her life.

No one tells you how discreetly death can make its catch, or how languorously. It rolls in like a low wave: It’s moving, and it’s not; she’s there, afloat, and she’s not; it simultaneously sluices through her and tugs her in its tide for hours, until she’s silently dispelled by its force.

I understand, now, why death has so often been personified in art — it’s maddeningly anonymous. Sylvia Plath’s Death is two people: the one who never looks up, and the one who smiles and smokes. But her suitors are too sexy and menacing to represent the remote, impassive, mundane death I witnessed. Jacques Brel’s Death is a spinster, a princess and a witch — all impossible: the experience of death could never be so monumentally solitary with this crowd of enablers on the sidelines.

My mother hallucinated lightly in the week before she died, and her morphine visions assured me that her death — or at least what followed it — would be O.K. “I wish I were a tree,” she said one day, which seemed reasonable in light of both her love of forests and the nature of her illness, multiple myeloma, which was whittling her bones away. She wanted to be solid again. She wanted to stand up and be rooted. A few days later she said brightly, “My father’s waiting for me.” She was ready to go.

On the night she died, five or 10 minutes after she stopped breathing, I held her in my arms and she was still there. An hour later, she was not. But she hadn’t been taken. I’m certain she had left, and seeing her go gave me the courage to think that I could do this myself, without fear.

I practiced in a dream. I was running along the rooftops of Lower Manhattan when I hit a sheer drop of 20 or 30 stories, and began to fall. I knew I would die, so I gave myself a quick admonition. First: Relax. It’s a long way down, and you could have a hell of an experience before this ends if you don’t tense up and miss it. Second: Stay horizontal so you get a clean hit and don’t make a huge mess. Third: On the ground, before you die, explain that this was an accident, not a suicide. People who love you deserve to know.

I hit the ground and found myself running again — scrambling around trying to get back to a building where I’d left a newly purchased book I was desperate to retrieve. I’d died and gone to — a bookstore. Life went on.

A month after her death, my mother was still dying. When I went to her apartment to sort her mail and pack up her things, she was there — a little less each week, but still. She walked in and flopped down on the full length of the couch with one outstretched hand brushing the floor, a Kleenex in her sleeve, surveying the vast empire of magazines on her coffee table. She appeared in my dreams, allowing me to hug her for a preposterously long time, though we both knew she was dead. This is how I held on to her for a few years — when I played it right. One night in a dream, for example, I spoke to her at length by phone, but when I asked her where she was, she sounded irritable and hedged, and the dream dissolved. So I learned not to ask.

And now, four years have passed. A gap has widened between what happened before her death and what’s happened since, and she’s slipped into it. They’re all gone now: the ghost mother, reclining on the couch; the missing person, dissembling on the phone; and the absent presence lingering in the woods where her scattered ashes have settled into the underbrush, buried under seasons of snow and wildflowers. And yet it feels as if I just met this radical new mother who did the unthinkable — the renegade who journeyed deep into the wilds of a terminal illness, shape-shifted magically before my eyes, and took off. It was an artless, innocent betrayal, based on a misunderstanding: I had simply thought she would live forever.

Complete Article HERE!

Deeply religious Jimmy Carter embraces cutting edge science in cancer battle

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Listening to the 90-year-old Jimmy Carter’s press conference last month concerning his battle with cancer, one might assume his pre-political career to have been in medicine, rather than nuclear physics for the U.S. Navy’s early nuclear submarine program. Not only did the former president explain his surgery in terms of the precise volume of liver tissue resected and the size of the four metastatic lesions in his brain shown on his MRI, but he also outlined the treatment plan.Former president Jimmy Carter

Importantly, in response to more than one question regarding whether, due to his religion beliefs, age, or other reasons, he ever considered something other than what his doctors — topic specialists in oncology, surgical oncology, and radiation oncology — were recommending, he replied with a resounding “no”. Despite talking frequently about his religious faith, despite teaching Bible classes to kids on Sundays in his hometown church, Carter will do what he can to prevent nature from running its malignant course. He will not sink into the gutter of alternative, faith-based medicine, but quite the contrary. He his put his fate in the hands of science. In his case, that means immunotherapy, which currently is showing promise for just a handful of cancerous conditions, but that includes the one he has, melanoma. It also radiation therapy, targeted very precisely to the four lesions in his brain.

What the treatment will mean for Carter’s prognosis is not something that can be answered with great precision, given the small amount of information that’s been released about his condition thus far. What is both public and improves his prospects is the fact that the four brain metastases are tiny, approximately 2 mm each, and the fact that it’s a cancer that responds to the immunotherapy drug that he’s getting. On the other hand is a concern that other metastases may yet turn up in other parts of his body. Either way, however, Jimmy Carter apparently plans to make his battle with cancer very public, and potentially this can do a lot for cancer awareness that ultimately can save many lives.

Carter’s diagnosis

In recent years, health-centered media have done a fairly good job at making people aware of malignant melanoma. For this reason, the public has a fairly accurate image of melanoma as a type of skin cancer, in fact the most deadly type. Many people are aware that a change in in a mole or the appearance of a new, dark mark on the skin is not something to ignore, but something to have examined by a dermatologist and biopsied. But what’s not well known is that approximately 2 percent of melanomas begin deep inside the body, not in the skin. These internal melanomas come from melanocytes, the same types of cells that cause cutaneous melanoma. But, unlike cutaneous melanoma on Sun-exposed areas, you cannot prevent internal melanomas by controlling your Sun exposure, nor can you see them in an early stage with your own eyes.

In President Carter’s case, the only reason why doctors found his melanoma, initially in the liver, is that he had an abdominal magnetic resonance imaging (MRI) scan as part of a comprehensive exam after developing a very bad cold. After approximately 10 percent of his liver was resected biopsied, it was confirmed that the liver lesion was cancer, and specifically it was melanoma. However, the testing also showed that it had been removed with clear margins of healthy tissue around it, meaning that the rest of the organ was in good shape.

In a certain sense, the melanoma diagnosis after surgery was a relief for Carter, because initial presentation had looked as though it could have been pancreatic cancer, which runs in Carter’s family. His father, two sisters, and brother all died from it, and the liver is commonly a presentation site, even though it starts in the pancreas. But Carter’s doctors had a high level of suspicion that the melanoma had not started in the liver, that the liver lesion was a metastasis from another site. Consequently, they ordered more MRI scanning. This revealed the four spots in his brain and it’s the reason why some media outlets have referred to Carter’s condition rather inaccurately as “brain cancer”.

Different types of cancer affect the brain

What President Carter has is not “brain cancer”. It’s metastasis to the brain from somewhere else. Metastasis by cancers starting somewhere else actually is the most common kind of cancer to have in the brain. However, it’s important to distinguish brain metastasis from malignant tumors that arise in the brain itself. One category of primary brain malignancies is glioblastoma, which kills approximately 15,000 adults in the US each year and is the brain malignancy that Vice President Biden’s son, the late Beau Biden, may have had, based on reasonable speculation by the Washington Post.

It’s particularly important to raise awareness about brain malignancy and where state-of-the art medicine is at present, in light of a scientifically illiterate and extremely paranoid accusation made last June by writer Mike Adams of the pseudoscience publication Natural News. After outlining his opinion that the younger Biden was “killed by a combination of chemotherapy, radiation, and glyphosate”, Adams went on to slam the field of oncology with a string of accusations and insults:

Oncologists who prescribe chemotherapy drugs earn massive profits from those drugs, all while failing to disclose their own conflicts of interest to their patients. Unfortunately, chemotherapy kills far more people than it saves because its primary side effect is recurring cancer. Yes, chemotherapy causes cancer. And the ignorant oncologists who prescribe it actively encourage patients to avoid protecting their healthy cells with nutritional therapies such as medicinal mushrooms, anti-cancer foods and healthy oils such as cod liver oil. In fact, oncology as practiced today is a barbaric medical practice that quite literally kills people by the hundreds of thousands each year…Beau, it seems, was handed over to the conventional cancer industry which, sadly, told him he had a “clean bill of health” just 18 months before the cancer surged back… almost certainly worsened by the chemotherapy itself.

After attributing Beau Biden’s death to chemotherapy, Adams goes on to blame the herbicide glyphosate (an analog of the amino acid glycine) — and indirectly Hillary Clinton and others who support biotechnology companies — for Biden’s developing the malignancy in the first place. The possibility of a glyphosate-cancer connection has been addressed, and shown to be highly speculative, on the Genetic Literacy Project and other news outlets, but here we can address Adams’ alarmist assertions regarding conventional oncology treatments, and chemotherapy in particular.

Chemotherapy saves lives

There are two things that Adams got right, although he wrote about them so far out of context that they can do nothing but mislead the readers. First of all, people do receive chemotherapy and then die, and often this happens after they initially start to get better after following a cancer diagnosis; they go into what is called remission, but often the remission does not turn into a cure. That happens because many types of cancer respond well at first to certain cancer drugs, and then more resistant cancer cells take over.

What Adams didn’t say is that with many types of cancer, today the incidence of the cancer coming back after initial remission is reduced compared with a half century ago, because of increasing understanding of how the chemotherapy drugs work, increased capabilities of new chemotherapy drugs, and because of the development of systematic protocols for using particular chemotherapeutic “cocktails” of different agents. Adams also didn’t say that reason why patients die when cancer comes back after a remission is not that chemotherapy causes new cancer. He implied that in his article, but it’s completely false. What comes back is the same cancer that the patient had before.

The second thing that Adams got right is that many chemotherapy drugs can themselves cause cancer. As explained above, it’s not the same cancer that comes back within weeks or months in cases when chemotherapy doesn’t get rid of a cancer. Instead, the correct but out-of-context fact is that there are cancer drugs that can cause secondary malignancies decades later. This is particularly true of a category of anti-cancer drugs called alkylating agents. This is a huge issue in oncology, particularly in cases of people who are treated with those drugs for childhood cancers, who are then at elevated risk for other cancers decades later.

But what Adams did not say–what makes it extremely out of context–is the reason why we know about secondary malignancies caused by certain chemotherapy agents. We know about it because there is an increasing number of survivors of childhood, teenage, and young adult cancers who are walking around today and sometimes developing cancer 20, 30, or 40 years after chemotherapy, radiation, and surgery cured them of the cancer they had in their youth, that otherwise would have killed them.

In the 1940s and 50s, cancers, such as acute lymphoblastic leukemia (ALL) in children and Hodgkin lymphoma in teenagers and young adults, were nearly complete death sentences. But today, most of the kids diagnosed with these two conditions survive, and they survive because of chemotherapy. How did this happen? By the 1960s, oncologists had just a handful of chemotherapeutic agents. Sometimes, they worked a little for certain cancers. People got better, or went into remission for a little while, and a small fraction were actually cured. Overall, the cure rate was dismal, but then researchers started noticing that the cure rates varied a great deal from medical center to medical center. Different oncology teams were using and dosing the different drugs in slightly different ways. Some were combining more than one drug but the combinations also varied between institution.

Thus, in the 1960s and 70s, oncologists and scientists started having cancer teams report what their cases and treatments very systematically, and they started looking at the outcomes of different drugs, alone and in combination with other drugs, for different types of cancers.

What grew out of this approach was a knowledge base founded on the collective experience of oncologists around the world. This led to very particular protocols for combined chemotherapy cocktails for specific types of cancer. As the various cocktails were being developed, various new drugs were also introduced to mitigate the side effects, thereby allowing for more aggressive doses. Depending on the type of cancer, and the locations within the body, the chemotherapy protocols are also combined with radiation therapy and surgery, along with other types of drugs.

All of this together has given oncologists the ability to kill off cancer to the point that it does not come back, because any cell that happens to be resistant to one agent is killed by another agent, or by the radiation, or, if the tumor mass gets low enough, by the patient’ own immune system. Thus, while chemotherapy armaments today do include many old drugs used unsuccessfully 70 years ago, they way they are used today is very different, and for a bunch of cancers the rate of survival has increased significantly. At the same time, radiation oncology has also gone through major advances. Not only is the power of radiation that can be delivered to a tumor gone up steadily, but the targeting has gotten better, due to precise imaging with technologies such as MRI and computed tomography (CT) and nuclear medicine techniques. Also, the shielding has improved, which makes a huge difference, allowing delivery of powerful radiation only where it is needed while sparing healthy tissues.

Importantly, one of the main factors affecting survival is matching the precise staging of the cancer (where and to what extent is has spread in the body) to the appropriate treatment. Today, the staging is more precise that it used to be, because of improved diagnostic capability, and that is improving survival as well.

President Carter’s Treatment Plan

Based on what information is available, President Carter is now receiving radiation to the four metastases in his brain. There is a very good chance that all four lesions will be eliminated from his brain with minimal side effects, because of the small size of the lesions, the precise targeting, the high tech shielding, and because of one other reason: special agents can be given that will make the brain metastases more sensitive to radiation. Carter is also getting treatment with pembrolizumab, which is being called abreakthrough drug. It works by boosting the immune system, and therefore is part of an emerging type of therapy known as immunotherapy. Currently, immunotherapy has limited use for cancer across the board, but melanoma is one type of cancer where immunotherapy is showing particular promise.

Complete Article HERE!

Burial, cremation, or full fathom five? I can see the allure of a watery grave

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Eighty-five-year-old twins from Brooklyn are setting off on what they say will be their final voyage. Their plan to die at sea has an undeniable romance

Sunset over the sea
‘The sea is where we came from in the first place. There’s a definite romance to saying goodbye to the land, and setting sail for that last adventure.

The endlessness of the sea offers an eternal alternative. Perhaps if we just pushed off into it, we could escape death itself – as if its amniotic waters might be a return to a universal womb. After all, the sea is where we came from in the first place. There’s a definite romance to saying goodbye to the land, and setting sail for that last adventure.

Van and Carl Vollmer, 85-year-old twins from Brooklyn, certainly think so. The brothers are about to embark on the handsome 158ft, three-masted barquentine, the Peacemaker, on a round-the-world voyage in search of remote islands and sunken galleons, from the Panama Canal to the Great Barrier Reef, the Philippines, and on to the Mediterranean.

In order to get there, the pair – who currently live on a powerboat moored on City Island – have bill-posted Brooklyn’s hipster district of Williamsburg with an enticing proposition: “Brooklyn sea captain seeking crew!” They’re advertising for a 12-strong, able-bodied crew of men and women, including a mechanic, deckhand, cook, nutritionist and an aquaponic gardener to grow vegetables on top of fish tanks – a kind of hip 21st-century version of Ahab’s crew on the Pequod in Herman Melville’s Moby-Dick. They’ll even get suitably retro uniforms of old-fashioned sailor pants with 13 buttons and yellow-and-white striped shirts. I’m guessing they’ll all have beards already.

But instead of a demented captain suicidally spearing a great white whale, the Vollmer twins are instructing their shipmates that when the time comes, they’ll be glad to go over the side. “To swim with the fishes for eternity”, as Van Vollmer says. “We want to spend the rest of our lives on this boat”, Carl adds. “We want to get thrown overboard”. Melville, who lived and died by the New York waterfront, would approve of such wild ambition. Having ended his own life as an ageing customs inspector on the Manhattan wharves looking out longingly to sea, the great writer probably wished he had done the same. Indeed, it’s a scene reminiscent of his last, elegiac seafaring tale, Billy Budd, whose protagonist ends up consigned to the deep: “…roll me over fair! / I am sleepy, and the oozy weeds about me twist.”

But not everyone is happy about the Vollmers’ intentions. At least one crew member, Steven, chosen by the twins as their first mate, is equivocal about this duty. “Van kind of brings it up and he’s like, ‘I want to teach you everything I know so when you dump me into the sea you can take over.’ I’m hoping that’s just some kind of expression. It’s not something I really want to think about.”

Not going gently into the good night but raging against the dying of the light, as Dylan Thomas recommended, has a long maritime tradition. It is an ambition peculiarly suited to the sea – particularly in our fractured archipelago of the British Isles. In Charles Dickens’s David Copperfield, Mr Peggotty, the Yarmouth fisherman, says of his brother-in-law Mr Barkis as he lies dying: “People can’t die, along the coast … except when the tide’s pretty nigh out … He’s going out with the tide. It’s ebb at half-arter three, slack water half-an-hour. If he lives till it turns, he’ll hold his own till past the flood, and go out with the next tide.” Nowadays, anyone hoping to swim with the fishes in eternity without going to the bother of sailing into the blue yonder can opt for burial at sea off the Isle of Wight, in a designated zone.

Meanwhile, the modern Odysseus takes to the ocean liner. Wealthy wanderers of a certain age have sold up on land to live at sea in permanently rented suites. A somewhat ominous-sounding company called Utopia caters to those who intend to spend the rest of their lives on the briny, while US websites discuss the practicalities, pondering, “Is cruise ship retirement cheaper than assisted living?”.

Beatrice Muller thought so. After her husband died on the QE2 as it sailed out of Bombay in 1999, she announced her intention to live on the liner till the end of her days, paying £3,500 a month for the privilege. Unfortunately for Mrs Muller, she outlasted the ship; it went into retirement in 2008. And although the stalwart senior citizen continued to defy the land – “I’ll keep on staying at sea”, she said, aged 89, “I don’t want to go back to housekeeping” – sadly, she seems to have ended up in a retirement home in New Jersey.

As someone who swims in the sea every day, I’ve often considered it as my last resting place; that like Barkis, I might be taken out with the tide. After all, I wouldn’t be using up valuable land space, or contributing to climate change. It sounds almost idyllic. “Full fathom five my father lies”, as Ariel sings in The Tempest, “Of his bones are coral made”, transformed “into something rich and strange”. But then I think of how lonely it might be, nibbled away by crawling slimy things where “the very deep did rot”, as the fated Ancient Mariner saw it. And would I really want to be recycled by lobsters, to end up in the food chain? Perhaps it’s not such a reassuring thought after all.

Complete Article HERE!

Therapy Dog Gently Comforts Hospice Patient While They Both Listen To Poetry

hospice dog 3

 

By Regina Lizik

JJ the dog has a very special job. She’s a therapy dog who spends a lot of her time comforting patients at a hospice in Oregon. Recently, JJ’s mom, nurse Tracy Calhoun, posted a video one of JJ’s therapy sessions to Facebook.

It shows JJ comforting a patient who, sadly, does not receive many visitors. Her time with the pup is very precious. In the video, they spend their time sharing snuggles and listening to a poem by W.B. Yeats.

JJ’s mom translated the pup’s dog thoughts on Facebook:

“She cannot see and often does not wake up, but she did like having her hand on my fur. She was very calm during my visit. We were listening to Yeats, by the way. I was very insistent to have her touch me, more so than usual. We fell asleep later with her hand splayed on my head, both of us snoring.”

You can follow JJ’s amazing work on her Facebook page.

Complete Article HERE!

After surviving the Holocaust, letting go of life is complex

By Melissa Apter

A Holocaust survivor looks at a candle commemorating the liberation of Auschwitz Birkenau, January 27, 2015, in Ayr, Scotland. (Jeff J. Mitchell/Getty Images)
A Holocaust survivor looks at a candle commemorating the liberation of Auschwitz Birkenau, January 27, 2015, in Ayr, Scotland.

Jewish hospice chaplains confront the emotional and medical complexities of death and dying every day, but Holocaust survivors present special challenges.

Rabbi E.B. “Bunny” Freedman, director of the Jewish Hospice and Chaplaincy Network, said that chaplains are increasingly being called on to provide spiritual support to survivors and their families.

“There are a lot of complex issues,” said Freedman, who has worked in end of life chaplaincy for 23 years. “One of them is making the decision of unhooking hydration – much more complex for a Holocaust family. The idea of not providing nutrition is crossing a sacred or not understood emotional line.”

Survivor guilt and mixed feelings at the prospect that they may “meet their relatives on the other side” commonly surface, he said.

Rabbi Charles Rudansky, director of Jewish clinical services at Metropolitan Jewish Health System’s hospice in New York, reported similar experiences with Holocaust survivors he had counseled.

“Last time they saw their loved ones was hellish, hellish, hellish, and now they’re crossing that bridge,” said Rudansky.

Some Holocaust survivors are apprehensive at that prospect, he said, while others are “uplifted.” A usually talkative person may fall silent, while a quiet person may suddenly have a lot to say.

“I’ve been called in by Holocaust survivors who only want to speak with me so some human ears will have heard their plight,” said Freedman.

Jan Kellough, a counselor with Sivitz Jewish Hospice and Palliative Care in Pittsburgh, said she encourages, but never pushes, survivors to share their stories. While it can be therapeutic for some survivors to talk about the Holocaust, she said, it is problematic for others.

Rabbi Freedman giving a presentation to hospice workers in Baltimore, Maryland, spring 2015. (Courtesy: Dr. Gary Applebaum)
Rabbi Freedman giving a presentation to hospice workers in Baltimore, Maryland, spring 2015.

For some survivors, “there’s an attitude of not wanting to give up, there’s a strong will to fight and survive,” said Kellough.

Children and grandchildren of survivors can also struggle to cope with their loved ones’ terminal illness, said Rudansky.

He said such people tell the hospice staff, “’My grandfather, my father survived Auschwitz. You can’t tell me they can’t survive this!’ They have great difficulty in wrapping their heads around this is different — this is nature.”

That difficulty can be compounded by the fact that children of survivors may not have had much contact with death in their lives, said Rabbi David Rose, a hospice chaplain with the Jewish Social Service Agency in Rockville, Maryland.

Because so many of their family members were wiped out in the Holocaust, children of survivors may be less likely to have experienced the death of a grandparent or aunt or uncle.

“That’s one of the benefits of hospice. We work with them and their families to help them accept their diagnosis,” said Kellough.

Hospice offers families pre-bereavement counseling, 13-months of aftercare and access to preferred clergy.

Special sensitivity is paid to spouses who are also survivors.

“Survivor couples, particularly if they met before the war or just after the war are generally exceptionally protective of each other,” said Rose. “A few different couples come to mind – every time I visited, the partner was sitting right next to their spouse, holding hands the whole visit.”

Freedman underscored that chaplains are trained not to impose their religious ideas on families, but rather to listen to the patient and family’s wishes.

“I tell the people I train that if you’re doing more [than] 30 percent [of the] talking in the early stages of the relationship, then you’re doing it wrong,” said Freedman.

“Seventy percent of communication is coming from your ears, your eyes, your smile — not your talking. Rabbis tend to be loquacious, we’re talkative,” he said. “But when I’m with a family, I am an open book for them to write on.”

Though the work is emotionally demanding, Freedman said, “Helping people through natural death and dying is one of the most rewarding things people can do.”

 
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