Dying to Know Day a national call to action to remove taboos around death

by GERALDINE CARDOZO

Death 'fans' Clive Salzer, Gypsy Artemis and Anthea Paterson planning events around Dying

Death ‘fans’ Clive Salzer, Gypsy Artemis and Anthea Paterson planning events around Dying to Know Day on the Central Coast.

For Umina retirees Anthea Paterson and Clive Salzer, life has never been better since facing up to death.

The couple, who call themselves “death fans” say they had a life-changing experience after attending an end-of-life course.

“Both our mothers are 94 and approaching death, so we went along to an end of life course to try and prepare ourselves for what is to come,” Mr Salzer said.

“While it was very emotional, the experience has changed our outlook on life and death completely.”

The pair are now part of the Central Coast End of Life Collective, which is associated with the Groundswell Project – the group behind Dying to Know Day.

“This is a national day of action challenging the taboo of death and bringing to life conversations around death, dying and bereavement,” Central Coast organiser Gypsy Artemis said.

Making a will is an important part in dealing with the inevitability of death.

Making a will is an important part in dealing with the inevitability of death.

“To me, Dying to Know Day is about saying things you may wish you’d never left unsaid.”

Ms Artemis, formerly known as Kim Ryder, said her fascination with “society’s last taboo” was sparked after a near-death experience in 1997.

“This changed my outlook on life forever and then my mum was diagnosed with terminal cancer and died in 2008. This was my first first-hand experience with death and I started thinking about how we, as a society, don’t deal with death very well.”

For Mrs Paterson, talking about death has helped her deal with grief associated with the death of her father.

“It’s not a morbid thing, this is about exploring death to enhance life,” she said.

ORGANISE YOUR OWN FUNERAL

Find out information about how to organise your own funeral, alternatives to cremation, how to make a will and advanced care plan at Dying to Know events next week. For details visit www.dyingtoknowday.org.

 
Complete Article HERE!

Life And Love After The Love Of Your Life Dies

“I had real love in my life once with Doug and I would desperately like to have it again. I know this is a big trap…sex and intimacy are not one and the same thing. But I always wind up acting like they are the same. I always have it in my head that maybe my next sexual encounter will bring me love. It’s maddening.”

My friend Kevin is 39. He is living with HIV. He tested positive twelve years ago. Luckily he continues to be asymptomatic.

Kevin is a music teacher and member of a jazz quartet. He is currently single and shares his house with two roommates. His lover, Doug, died five years ago just one month shy of their tenth anniversary together.

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Kevin is trim and buffed. He works out at a local gym four days a week. He is boyishly handsome with tousled red hair. He rides a motorcycle and is a wicked pool player.

Kevin tells me; “Even though I’ve had many friends die of AIDS, I still have plenty of my own death stuff to deal with.” He reports that he has recently engaged in some questionable sexual practices. “That’s a sure sign that I’m shoving a lot of this under the carpet. And I know this kind of thing could be, well, a fatal mistake!”

Kevin was born and raised a devout Roman Catholic. His Boston Irish Catholic family had high hopes that one day he would become a priest. “I know I disappointed them and I don’t think they ever really got over it. Ya see, when I came out in college I left the church at the same time. It was a preemptive strike, if you want to know the truth. I wasn’t about to wait around for them to throw me out just because I was gay.” His inability to find a suitable spiritual home makes him sad. “Sometimes I feel lost and rudderless. I know God loves me, but the sweet and easy connection I once had with God as a younger man eludes me now.”

My friend Kevin and I meet for lunch about once a month. We talk about life and death and what makes us tick. At a recent lunch we started to talk about life and love after the love of our life dies.

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Kevin tells me; “My sexuality has always been a driving force in my life, but sometimes I simply feel driven. A manic pursuit of pleasure is no pleasure, if you know what I mean.”

“I do know what you mean. That’s how so many of us pursue our pleasure. It’s exhausting, huh?”

“Yep! Do you think it’s just a gay thing?

I don’t want to suggest that I’m a sex addict or anything, but I sometimes feel out of balance. I know a lot of this has to do with my relentless pursuit of love. I had real love in my life once with Doug and I would desperately like to have it again. I know this is a big trap…sex and intimacy are not one and the same thing. But I always wind up acting like they are the same. I always have it in my head that maybe my next sexual encounter will bring me love. It’s maddening.”

I smile knowingly and say; “I wish I had a nickel for every time I head a similar lament. We gay men, in the age of HIV/AIDS, have a unique set of sexual issues that need to be understood and addressed. Besides the obvious safer sex concerns, there are all the issues that arise with the death of a partner. Unresolved grief can and does cause sexual dysfunction. When a relationship ends with the death of a partner, the surviving partner has an array of new concerns. How and when does he begin to date again? If he is sexual with someone new, does this violate the memory of his deceased partner?

I frequently hear the same complaint. ‘I’m so lonely, but my grief is getting in the way of my having any kind of sexual feelings.’ As a therapist I try to help the surviving partner face these concerns as soon as possible. I often find myself saying; ‘Listen, I’m sure your lover wouldn’t want you to stop living. Choose life! It will be the best testament you could offer your deceased lover.’

It’s been my experience that if these concerns go unresolved for too long, the likelihood that they will develop into a full-blown dysfunction increases exponentially.”

I sense that I’ve hit a nerve in Kevin, but I push on.

“Kevin, you said you’re looking for a partner, but that you are only meeting men who are interested in sex. Searching for a life partner isn’t easy even under the best of circumstances. Looking for someone new after the death of a partner is even more difficult. There is always the tendency to compare the new love interest to the one who’s died, and that can be disastrous.

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On top of that, where does one go to meet a potential partner? One thing’s for sure, it’s not likely that you’ll find this person in a sex club or in a bar. I suggest that you look in a less seductive environment like a café or at the gym. An HIV support group might also be a good place to look. Or perhaps you could try a common interest club, like the ones they have for line dancing or playing bridge.”

Kevin thought for a moment and responded. “I’ve considered all those things and have tried them all too. But then I begin to think; what happens if I meet someone who is HIV negative? I don’t want to get attached to guy who might reject me just because of my HIV status. That’s why it’s less of a gamble if I keep the connection more casual. So you see, I’m in a double bind. I want the intimacy that comes from a long-term relationship, but I’m afraid of the rejection. Or, what if I infected him? That would be the worst. And, even though I’m doing okay now on the medications I’m taking, but what if I get sick later? I don’t want to put anyone through what I went through with Doug.”

“If ya focus on the fact that you could be rejected for your HIV status, or infect a partner, or get sick and die yourself you simply won’t be able to live each day to the fullest. And all the love you have to give will die on the vine, so to speak. Fear is ruling your life, not pleasure, and certainly not love.

So many of my friends with HIV consider themselves damaged goods. That’s no way to approach the rest of one’s life. I understand the stigma, but HIV is simply a chronic illness like any other. Nowadays it’s manageable and there’s very little to interrupt one’s quality of life. Do you honestly intend to live without the intimacy you need and desire and sabotage the very thing that will enrich your life, just because you’re afraid? Gosh, I hope not.”

WRITE YOUR OWN OBITUARY

I have an interesting exercise for you.

I want you to write your own obituary. Just like you would want it to appear after your death. You can be as creative as you like.

Obituary

Try to remember that this is just an exercise, okay? A wise man once said that we are unable to manage what we cannot measure. And this is an opportunity for you to take measure of who and what you are. Give it some thought. As the saying goes: Things that are difficult for us will tell us more about ourselves than the things we do with ease.

Take some time over the next week or so to review examples of obituaries and death notices…they’re in all the newspapers and online. Now write your own obituary. You died today. What would you like to say about yourself and your death? Model it upon the ones you researched or be creative and design your own. Remember, this is just a snapshot of who you are at this moment. It would be interesting to compare this obituary with the one that you might write at the next year or when it is truly needed.

“Life doesn’t cease to be funny when people die any more than it ceases to be serious when people laugh.”
— George Bernard Shaw

Excerpts From World Class Obituaries:

Ronnie loved spur-of-the-moment trips in luxury cars to Vegas with his friends. We would also like to thank the people who issued his credit cards.

 

Allison studied cooking to prevent recurrences of memorable culinary disasters and fend off resulting “blond” jokes.

 

When you remember Brett, remember he was more than a great set of biceps; he was also an incredible set of pecs.

 

She is remembered for her endless capacity to love, her romantic ideals, her wit, her sense of humor, her homemaking and her ability to accessorize.

 

Jenette is probably shrieking from the other side now that her true age has been published.

 

Handsome and tailored to a fault, he somehow still managed to wear too much jewelry.

 

William, the proud owner of an outrageous giant poodle named Orbit, could often be found in his red pumps on Bernal Hill or high in the Sierras.

 

Here’s to short skirts, tall hairdos, seamed stockings, and bad attitudes!

 

He lived in San Francisco according to the Gospel of Mame and believed implicitly in the virtues of room service and frequent flyer miles.

 

Ron loved collecting ‘50’s memorabilia as well as dining out and drinking Merlot and driving his treasured 1961 Cadillac — sometimes unfortunately in that order!

 

She lived by the words of Alice Roosevelt: “If you haven’t anything nice to say about someone, come sit next to me.

 

Weary of reading obituaries noting someone’s courageous battle with death, Mike wanted it known that he died as a result of being stubborn, refusing to follow doctors’ orders and raising hell for more than six decades. He enjoyed booze, guns, cars, and younger women until the day he died. So many of his childhood friends that weren’t killed in Vietnam went on to become criminals, prostitutes and/or Democrats. He asks that you stop by and re-tell the stories he can no longer tell. As the Celebration will contain adult material we respectfully ask that no children under 18 attend.

Quebec passes landmark end-of-life-care bill

Act respecting end-of-life care, Bill 52, allows terminally ill patients to choose death

veronique-hivon-dying-with-dignityTerminally ill patients in Quebec now have the right to choose to die.

The non-partisan Bill 52, also known as an act respecting end-of-life care, passed Thursday afternoon in a free vote at the National Assembly in Quebec City.

‘Dying with dignity means dying with the least amount of suffering,’— Véronique Hivon, PQ member of the National Assembly

The bill passed 94-22. There were no abstentions.

“Sometimes when you are suffering in pain, one hour can feel like one week.… The protection of the vulnerable is reflected in every aspect of this bill,” said Parti Québécois member of the National Assembly Véronique Hivon, who drafted the bill when she was minister of social services under the former PQ government.

Bill 52 allows for and outlines under which conditions terminally ill Quebecers can request to receive medical aid in dying.

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Health Minister Gaétan Barrette, right, stood with members of the National Assembly from the three other parties (including Véronique Hivon, who drafted the bill) in late May to affirm the cross-partisan support for Bill 52. (CBC)

The main indicator for requesting medical aid in dying is “an incurable disease, an incurable illness, which is causing unbearable suffering.”

“For me, dying with dignity means dying with the least amount of suffering … and respecting who that person always was during his or her whole life,” Hivon said in the National Assembly before the vote took place.

Her speech was followed by applause and a standing ovation.

Liberal Christine St-Pierre was one of the 22 who voted against Bill 52.

“I don’t believe it’s right to give [anyone] the power to kill somebody,” St-Pierre said.

This legislation is the first of its kind in Canada. Its passage comes at a time when the right to die is being heavily debated in the rest of the country.

The Parti Québécois tabled the bill nearly a year ago after years of work from both the PQ and the Liberal government that came before it.

A committee on dying with dignity was assembled during Jean Charest’stenure as Quebec premier to study the issue and produce a report.

Its massive report, filed in March 2012, provided the foundation for Bill 52.​

However, Liberal Leader Philippe Couillard refused to play ball with the PQ when the party tried to force the bill into passage right before calling an election. Bill 52 died on the order paper as a result.

During the 2014 Quebec election campaign, Couillard promised to reintroduce the bill as it was drafted at the earliest possible moment during the new parliamentary session.

He also got the support from all four parties to reintroduce the bill at the stage it had died, instead of starting from square one.

It was reintroduced in late May by the new Liberal government.

Liberal Health Minister Gaétan Barrette made that announcementwhile standing side by side with MNAs from the three other parties.

“Between the four of us, we think the bill will pass strongly,” Barrette said at the time.

Complete Article HERE!

Aid In Dying, Part 2

“If you expect heroics from the people who attend you, even if it doesn’t include hastening your death, you’d be well advised to treat your attendants as heroes. Mutual respect and consideration, honor and compassion should be the hallmarks of your relationship with them.”

 

(We pick up our discussion where we left off last time. Part 1 is HERE.)

One of the most predictable questions I get when I present on the topic of aid in dying is; how do I go about finding someone who will be willing to help me? And I always answer the same way; the only way to know is by asking.

AidinDyingphoto_mediumI suggest that anyone looking for help with their end of life choices begin by interviewing those they love, to see who may have psychological, emotional, or moral reservations about assisting them in this fashion. I suggest that you never ask anyone to violate his/her ethical code regardless of how much you need help.

Once you find the person(s) you are looking for, I suggest that you check in with this person regularly to see if their level of commitment remains high, and excuse anyone who may have developed the least reservation about helping you as the time approaches. I suggest that you keep the number of people involved to the smallest number possible. One or two people at the most is my recommendation. Confidentiality and coordination of effort is essential and a large group make that virtually impossible.

At this point in the presentation I share two stories of very different death scenes to make my point. I was invited to consult on both occasions.

Jeffery was dying of AIDS. He and Alex, his lover of nearly twenty years, were preparing for his imminent death. Jeffery had a fear that he was beginning to slide into dementia, which was his worst nightmare. He wanted to short-circuit this final indignity and wanted to know if I would help them plan a strategy for proactively ending his life. I told them that I would be happy to offer them whatever information I had.street drugs

On this first visit with them I tried to assess the situation; to get a feel for the level of commitment that each person was bringing to this endeavor. There was no doubt about it, Jeffery was actively dying, his doctor confirmed the dementia diagnosis, and so time was of the essence.

I asked, “Have you guys done your homework?”

“If you mean, have we squirreled away enough medications to do the trick, the answer is no. We never gave this eventuality a thought until recently and now there’s not enough time to do that.”

“Will your doctor assist you with a prescription for a lethal dose of, let’s say, a barbiturate?”

“Doubt it. We’ve never talked to her about this. I don’t even know where she stands on the issue.”

“Well, then, how were you going to make this happen?”

“We were thinking about using street drugs, you know, coke and heroin. I also have some oral morphine left over from a friend who died last year.”

the_end_life_by_liquifiedsoul-d3fuz2nThat’s it? That’s your plan? What if you mess up on the dosage or something else goes wrong? I’ve seen it happen. You could be in worse shape than you are now and still be alive. Do you have a Plan B?”

Jeffery responded; “Alex and I talked about it some and Alex promised that he wouldn’t let me suffer.”

“But what does that mean? Alex, do you know what it is you are promising?”

The three of us talked for hours about their half-baked scheme. I tried to get them to see how implausible their plan was and how serious the consequences would be if there was a miscalculation. They would have none of it. Their love for each other and Alex’s blind commitment to Jeffery to preserve him from any more suffering was all there was to know. Alex would be as resourceful as necessary, even if it meant he had to suffocate Jeffery in the end.

Ten days later I was invited to their home again. I didn’t realize it at first, but earlier that day they had set their plan in motion. Alex had scored some cocaine, freebased it, and watched as Jeffery shot up. Both of these guys had had a long history with intravenous drug use so all of this was familiar territory. Unfortunately, Jeffery’s history with drug use complicated matters considerably. He had built up a tolerance to the drug and even though he was nothing more than skin and bones, the dose was not lethal. This is the situation as I found it. Jeffery was comatose and appeared near death, and Alex was at his wit’s end.

“He’s been like that for hours. I thought for sure he’d be dead by now. I think we’ve screwed up. What am I gonna do now?”

“I’m afraid I can’t advise you. I can only help you weigh your options.”

As I saw it, Alex had two options. He could call the paramedics and have them try to revive Jeffery with all the trauma that would involve, or he could honor the commitment he made to Jeffery and complete the plan they rehearsed.

Then there was Earl and his wife Christina. Earl was in the final stages of lung cancer. He was a hard, difficult man, plagued angerby many personal demons. Even when he was well, people used to say that he was an acquired taste, and if you ask me, that was being generous. The sicker he got, the more difficult he became. He alienated just about everyone – his sons, his friends, even the people from hospice. No one could tolerate his fury. In the end there was only Christina.

Some weeks before he died, Earl demanded that Christina call me over for a visit. I wasn’t inclined to accept the summons because I hated to see how he treated her, but Christina sounded so defeated on the phone that I relented and made plans to stop by the following day. Nothing had changed in the eight months since my last visit. Despite being a mere shadow of his former self, Earl was as abusive as ever. How had Christina been able to stand it all this time, I wondered.

“I want to die! I want this to be over now. I can’t get decent care. All these fuckin’ doctors and nurses make me sick. They don’t know what they’re doing.”

“He doesn’t mean that, Richard,” Christina interjected. “He gets good care.”

“Pipe down! I’m doing the talking. What do you know about it anyway? She don’t know nothin’ about what it’s like for me. Listen, Richard, I want to die. I want to end it right now, but I need help. I’m sick of this.”

“What kind of help do you need?” I asked.

“I read Final Exit, you know. I know how to do it. I got all these pills I can take.” Earl pointed to the cache of pill bottles in the nightstand drawer. “But I don’t want any slip-ups. I need someone to help me with the plastic bag at the right time, and she won’t help me.” He nodded in the direction of his long-suffering wife.

keep-calm-and-do-your-homework-100It was true. Christina absolutely refused to help. When I asked her why, she could only sheepishly shrug her shoulders. There was clearly much more to this than what was on the surface.

Earl then turned his attention to me. “You got to help me. You’re the only one left.”

“Earl, I won’t and can’t. It’s not that your request is out of line. It’s because I’m a stranger here. In all the years that we’ve known each other, you’ve never once invited even the most casual of friendships to form between us. You’ve always kept me out. You can’t ask me to overlook that now. You’re asking me to participate in one of the most intimate experiences two people can have in life and, I’m afraid, there just isn’t any foundation for that here. I’m sorry.”

“You’re a fuckin’ coward, just like everybody else. So you can just get the hell out and leave me alone. Damn you all!”

I hated to leave Christina alone with him, but I did as he demanded. Christina showed me to the door.

“Why won’t you help him?” I asked, when she and I were alone. “It would be the end of your misery.”

“That’s exactly why I won’t. After all these years, I couldn’t be sure whether helping him die would be an act of compassion, which would end his suffering, or an act of violence, which would end mine.”

These two scenarios provide a blueprint of what not to do if you are seriously considering having someone assist you to die. If you expect heroics from the people who attend you, even if it doesn’t include hastening your death, you’d be well advised to treat your attendants as heroes. Mutual respect and consideration, honor and compassion should be the hallmarks of your relationship with them.

You also have to have a well-thought out plan. And a “Plan B.” There’s no substitute for meticulous attention to detail. Who, what, when, where, and how. Do your homework!