Winnipeg Free Press - PRINT EDITION
Earth's Angels: Helping those who would otherwise die alone
Karen McClelland has lived a full life. She's seen the world. Been to places such as Japan and Bosnia, where she was a witness to the latter country's first elections in 1990.
She's ridden atop a camel and an elephant. Oh, and years ago, her 650 Suzuki.
She's raised two daughters, and now proudly claims, "I've reproduced myself. I'm a successful female occupant of the universe."
One daughter, Kathleen, described her mother as "a bad ass" back in the day.
"All my friends thought she was cool," Kathleen explained.
"Let me put it this way: I was the only girl in high school who got a hand-me-down motorcycle for a graduation present. She wasn't waiting for the world to catch up with her."
The world is catching up now. Two months ago, McClelland was diagnosed with terminal cancer. Six months to two years, the doctor said.
On Good Friday, McClelland was lying in her bed on the top floor of a downtown apartment building -- still in the process of adjusting to upped pain medication -- when two visitors came calling.
"Dying is a very frightening thing. It is for me," she said. "I think it takes a special kind of person to take that information and run with it. I think you get better at dealing with it. Everybody dies a little differently because everybody lives a little differently."
McClelland pauses, perhaps digesting her own words. Then smiles.
"I would like to die well," she said, feigning the dramatics of an olden-days actress, throwing her head back and pressing her palm against her forehead. "But I don't know if I can. Let's face it, no one has come back from this."
-- -- --
However, of this much McClelland is certain: She does not wish to die alone. Or even face dying alone, a reality that those in the palliative care field say is far more common than the general public would like to believe -- when they think of death at all.
"I have continued to be surprised how many older people have very few people in their life," noted Nina LaBun, a clinical resource nurse with Revera Living, which operates eight private personal-care homes in Manitoba.
"People who are truly alone. There's more than we think. It's very heartbreaking."
McClelland agrees. "It must be terrible not to have anyone come to visit," she said. "Terrible."
There are no studies or hard numbers, but the human stories can be found in almost every nursing home and hospital. As life expectancy continues to increase, parents can outlive their family and friends. More families are splintered due to geography. Children leave the nest and fly further away.
Both of McClelland's daughters live in the U.S.; the closest resides in Detroit. So every Thursday night, a visitor named Sheila arrives at McClelland's apartment. Sheila is a compassionate companion provided with a match through Hospice and Palliative Care Manitoba.
"What do we do?" McClelland said. "Women can sit for hours and talk about nothing. Or we play cards. We go out for a walk. We take down Christmas decorations... well, it's about time because it's April."
McClelland's sense of humour, apparently, is not terminal.
But this isn't a story about dying, really. It's about regular folks who step into the end-of-life void the 21st century has created. It's about total strangers who offer comfort and companionship to the Karen McClellands of a changing world -- some closer to the end of their journey than others.
Talking to them. Holding their hands. Perhaps taking them for a drive, maybe to a movie or restaurant. Brushing their hair.
Sometimes, right up until the last breath.
Are they Earth's angels? For some, perhaps. But they are also security guards or landscapers or retired elementary school teachers. All with a shared trait: the strong desire to ensure no one leaves this world alone.
"One thing I hate is when someone says, 'Oh, you have to be a special person to do that,'" offered long-time HPCM volunteer Helen McKenzie.
"You don't have to be a special person, but you have to be a caring person. Not everybody is comfortable watching people die."
-- -- --
"Hello, my name is Helen. I've come to sit with you a while."
Those are the first words Helen McKenzie will offer when she first sits vigil for a complete stranger. Chances are, she had just received the call to the usual destination: the third floor of the palliative care unit at Riverview Health Centre.
"Once I'm with a person, I'm fine," she said. "But before I walk into the room I'm nervous because I don't know what I'm going to be getting. It's the unknown.
"It's not that I'm not affected at all, but I take the attitude that I'm doing something to enhance the lives of people," McKenzie added. "I can't stop them from dying. But you do have satisfaction that you're helping quality of life. These people want the best while they're alive."
Some people volunteer to deliver Christmas hampers. Some volunteer to coach the kids' volleyball team. Some give at the office. For the last 17 years, McKenzie, a retired nurse, has volunteered with Hospice and Palliative Care Manitoba, which provides a wide range of programs for terminally ill and end-of-life patients.
There's a distinct difference. Compassionate companions are "matched" with terminal patients, such as Karen McClelland. But for the Final Days, Final Hours program offered by HPCM, a group of some 30 volunteers operate on an on-call basis.
"These are people who will drop what they're doing and go in at any time," said Mary Williams, the HPCM executive director.
"It certainly is a different kind of volunteering. It takes courage. It also takes compassion. And for the person on the receiving end, it's profoundly important."
Rotating shifts are usually four hours each. One volunteer hands off to another. Until the end.
The program is designed specifically for individuals who have no one else; they're either alone or their family members are out of town.
"I don't have the numbers of people who are dying alone," Williams said. "But there are many, many people who have outlived their friends, outlived their family, who are basically alone, who are really in need of the kind of compassion and support that attests to the value of their life. I can't imagine what it would be like to face your final days and final hours by yourself.
"It would really raise a lot of questions about the value of your life if you're all alone. And we want to ensure that people know that they matter, they are valued."
In some cases, family members living elsewhere simply can't arrive in time and can be at least comforted that their loved ones weren't alone.
"It helps them with sense of comfort and with peace," Williams said. "It helps them accept that this person was not abandoned. That's so important. Because that's one of the greatest fears that people have is being abandoned, especially at a time when you're totally vulnerable and relying on other people. It's incomprehensible to imagine being in that situation."
Yet it happens, and Williams doesn't think the frequency of "that situation" will ebb.
"There are lots of aging and frail people out there with chronic health issues who don't have anybody," she said. "It's just logical there will be more people facing the end of their life (alone)."
Make no mistake: the vast majority of deaths occur with people surrounded by loved ones. Check the obituaries. But what about those terse obits that are just a few sentences? Where do you find those short stories?
"You just have to go into any personal-care home," offered Judy MacDonald, another volunteer with Final Days, Final Hours.
In fact, Final Days, Final Hours is a hybrid of the landmark No One Dies Alone program founded in 2001 by Sandra Clarke, a former nurse who worked at Sacred Heart Medical Centre in Eugene, Ore. Clarke was profoundly affected by an elderly male patient who asked her, "Could you sit with me?"
Clarke said she would after she finished her rounds. But when she returned 90 minutes later, the patient had already died.
"I felt like I had let him down," Clarke told the Los Angeles Times in 2004. "Here you are in a high-tech world in medicine and he only asked for something very simple. It seemed so wrong to me. I felt guilty and frustrated. It wasn't that anyone had done anything wrong. But it wasn't done right."
Clarke wasn't alone in her frustration. Megory Anderson is the director of the Sacred Dying Foundation -- based in San Francisco and founded in 2001 -- which is devoted to end-of-life issues.
"Being alone, dying abandoned, is one of the biggest fears people have," Anderson told the Free Press recently. "We often get situations where families say, 'Just call me when it's over,' when a family member is in a nursing home or suffering from Alzheimer's. That's really, really, dying alone."
Clarke's vision led to NODA, which has spread throughout North America, including programs established in the last few years at both Seven Oaks and Deer Lodge hospitals in Winnipeg.
Like Final Days, NODA is specifically targeted for patients who are believed to be on their deathbeds.
All volunteers undergo training programs conducted by professionals whose occupations run from grief counsellors to oncologists to registered nurses. All submit to background checks.
But there is no manual to follow. No script.
Said MacDonald: "You just ask for the grace to say the right thing at the moment."
-- -- --
Joey Lesko, 33, works in the maintenance department at Seven Oaks Hospital. He does some landscaping. Maybe some drywall work. A Joey of all trades.
He also volunteers to sit vigil with dying patients and vividly remembers his first. She was an elderly woman who craved personal touch.
"She genuinely wanted someone holding her hand all the time," Lesko recalled. "There were lots of hugs. How could you say no?"
Lesko has sat with about a dozen patients as part of the hospital's No One Dies Alone program, made up of volunteers from both inside and outside the institution.
"If I can be with that person to comfort them, be their friend," Lesko reasoned, "you are the last person there to be with them when they pass away."
During his vigils with a dozen patients, only one died while Lesko was in the room. "He peacefully slipped away. He kinda fell asleep really," Lesko said.
Does Lesko still remember the stranger?
"Definitely," he replied. "First name. Last name. The way he spoke. The tattoos on his arm."
Indeed, the patients may go but an impression is always left.
"Each one of them, I can still bring their face up. And their story," noted MacDonald, who has been with the Final Days, Final Hours program for six years. "I've learned so much. There's just some amazing people out there in this world."
Isn't there? Stacy Johnson serves as the phone co-ordinator for NODA at Seven Oaks. At least, when he's not working hospital security.
"I knew I couldn't be a companion," Johnson conceded. "It's just not in me. I don't know what it is. I knew it would be too emotional for me. But I really believed in the program."
Instead, Johnson organizes the vigil shifts. Any time, day or night.
"What a wonderful group of volunteers," he said. "I have to phone people to interrupt their life... and 95 per cent of the time they answer. I leave a message, and I get a call back.
"You always worry about missing a spot," Johnson added. "It frustrates you, but maybe that's the way they wanted it. Sometimes, it's only a half-hour gap. Maybe they were waiting. You wonder."
It should be noted that many of the patients in NODA or Final Days are not able to communicate. Many are comatose.
What to do? First, Rae Patts, a NODA volunteer at Deer Lodge Centre, simply absorbs the surroundings.
"I try to get a feel of the person," Patts explained. "I look around the room and see what's on their shelves, what their pictures are."
If there's evidence the patient liked country music, that's exactly what Patts will pop into her CD player. If there's hints the patient enjoyed fishing -- a picture on a boat, or example -- Patts will start extolling her own fishing tales.
"I really believe they can hear me," she said. "They can't communicate with me, but I can talk my way through anything."
Cynthia Tretiak, a NODA volunteer at Seven Oaks, considers each vigil a journey in itself.
"The first thing you think when the phone rings is, 'Here's another opportunity'," she said. "You never know until you walk in the door who you're going to meet."
Even if they find the patient calmly lying in bed, unable to speak, often photos nearby will serve as a reminder, according to Tretiak, "It's not just the person dying in the bed; you have memories of their life."
Perhaps it's a family portrait from the old country.
Or a woman, much younger, as a bride in a wedding photo.
So Tretiak sings. Patts plays her CDs. Lesko gives hugs.
Mostly, they will sit quietly and hold hands. After all, Patts said, "It's amazing the grip some people have."
The emotional grip, in many ways, remains on the volunteers themselves.
MacDonald remembers sitting with a woman around Christmas. She picked up a Bible and began reading about the birth of Jesus. When she finished and looked up, the woman was gone. "It was so serene," she said.
Patts remembers a gentleman in his 80s at Deer Lodge. His wife, also in her 80s, fell ill and couldn't visit her husband anymore. She was admitted to the Grace Hospital.
"They had no family, no children," Patts said. "They just had each other."
Patts was with the elderly husband when he died. A few days later, she got a call from someone at the Grace Hospital. The ailing wife wanted to meet her. "I can only assume she just wanted to say thank you, to give her closure."
But minutes before Patts arrived at Grace, the wife had died, too.
"That's always stayed in my mind," said Patts, who strongly believes "that if at all possible when you leave this world, there should be somebody with you."
Patts has been known to sit on vigils for up to 12 hours, to the point where administrators will urge her to go home. She also sits with her 91-year-old mother, who suffers from Alzheimer's and lives at Riverview Health Centre. She still laments the day her father died, a few years ago, while she was en route to the hospital.
"To learn on a cellphone your father has died," she said, "is very, very hard."
Indeed, there is a similar thread for many volunteers. Lesko rues not being present when his grandparents died.
A fellow NODA volunteer at Seven Oaks, Wayne Voyer had left his father's hospital bedside for a couple of hours.
"It just happened we all went out to lunch and buy some Christmas presents," Voyer, a security guard at the hospital, noted. "That's when he decided to leave. I always felt bad about that.
"As years go by, I've lost family, friends, co-workers, especially in the last little while," he added. "I don't think anybody should have to go through that by themselves."
So Voyer will sit with elderly women, comb their hair. And let them comb his hair.
"It gives you a good feeling from the fact you're just there," he said. "Everyone has people there when you come into the world, so..."
-- -- --
When Robert Beaudin's wife, Barbara, died of cancer four years ago, the grief hit him like a Mack truck.
"I felt lost, unique. Alone," he said.
After all, Robert and Barbara were "attached at the hip." They only needed each other. On Friday night, they would hole up in their home and play board games, have a few drinks and giggle like high school sweethearts.
After Barbara passed, Beaudin became almost incapacitated. He'd lie on the coach for hours staring blankly at the TV. Worse, he'd stand on the back porch waiting for Barb to come home from work. He'd swear he heard her car pull up in the driveway, or the front door opening.
His mind was playing cruel tricks. After all, Barbara had died right in the living room, in a hospital bed where she had spent her final weeks following the terminal diagnosis. Robert moved his bed beside hers.
"She was a lot stronger than I could ever be," Beaudin recalled. "She didn't want to die in the hospital alone, that's for sure."
On the Saturday night of Jan. 12, 2008, at 11:30 p.m., Barbara's heavy breathing stopped.
Beaudin attended a weekly grief seminar at a funeral home, sponsored by HPCM. The topic was hope. Beaudin wasn't impressed.
"This is ridiculous," he muttered. "There is no hope."
But a few days later, the 51-year-old electrical designer decided to return to another seminar. If you've lost everything, what else is there to lose?
He mingled, this time, and felt the dark clouds lift.
"They knew there was no such thing as getting over it," Beaudin said. "They understood there was no timetable."
These days, Beaudin attends the seminar each month. Sometimes, he's a speaker. He's also a volunteer with Final Hours, Final Days.
His motivation is straightforward.
"I came out the other side," he said. "I survived it. It's a corny thing to say, but it's paying it forward. In the end, to have human contact, just to be in the room so they know they're not going all by themselves, that they're not making this journey alone. Because it must be, I don't know, a scary thing to know that you're going."
"We talked about everything; what scared us, what we wanted, what we didn't want," he said. "It was just something you had to do. You couldn't walk away from it."
On the night before Barbara died, Beaudin said he "poured out everything." How much she meant to him. How much he loved her. How his years with her were the best of his life.
"Maybe I knew something was coming," he said.
Curious what you can learn, just by talking. Or better yet, listening.
Beaudin has discovered, for example, that people alone on their deathbed rarely discuss what many people find themselves so preoccupied with the vast majority of their lives.
"What I found is they don't talk about their disease," he noted. "They don't talk about their job or career. Or even religion. They talk about vacations they had. They talk about fishing trips. They talk about going to Las Vegas for the first time. They talk about their grandchildren. They talk about that deck they built on their house. They talk about their life experiences."
In other words, Beaudin said, they talked about what they "enjoyed" doing, not necessarily what they had to do.
So if life is a journey, a mosaic of experiences and life lessons, what do people like MacDonald and Lesko take away from their chance end-of-life meetings?
"I guess I'm learning about myself," MacDonald said. "So often I think I'm grateful for the family I do have when I come home. My problems are nothing compared to others. It's insignificant."
Added Lesko: "It's quite often people make petty complaints about their families. Then you meet someone in a hospital bed who has no one, who would give anything to have those problems. Good times or bad times, at least they're times with families. Those are the thoughts that go through your head."
Which leads to philosophical questions. Is dying alone really so bad? Is there any solace in holding the hand of a stranger? In fact, at Deer Lodge, part of the in-patient form asks whether the individual even wants a "passionate companion" when the time comes.
But in all the interviews conducted for this story, the prevailing sentiment echoed that of Mother Teresa, who once said, "Each human should die with the sight of a loving face."
Pat Ferris, a chaplain at Deer Lodge Centre, said "I think it's an honour to be with someone at that point in life. A birth and a death, those are two of the most important days of our life."
Robert Beaudin made that promise to his wife Barbara, and now pays it forward.
His first client, he said, was an elderly man originally from the Caribbean.
"He couldn't sit up, but he could talk up a storm," Beaudin recalled. "He loved his life. He enjoyed it all. He said, 'I'm ready to go.' He had a great sense of humour. He seemed quite content about what was going on."
Beaudin paid the man a visit every Thursday night for a month.
On the fifth visit, the bed was empty. The nurses were tidying up the room. Said Beaudin: "That was it."
-- -- --
Karen McClelland has a Bucket List.
She had always wanted to learn how to play the clarinet, but doesn't think she would have the patience now. She's hoping to travel to Greece in the next two months, if she can still get around.
The list, she said, "is undergoing transition. There's some things I can't do anymore."
Then comes a mischievous look.
"And I'm not going to tell you what they are, either."
McClelland fully understands the isolation that can accompany terminal diagnosis.
"Your friends don't know what to say to you," she reasoned. "Your family doesn't know what to say to you. They don't want to talk about the Big D or the Big C. But it's not so bad. It's something you learn.
"Just to be there. That's the biggest thing. It might never get mentioned. But just by being there, it's like talking volumes about it."
The paradox of death is that it's the one topic most human beings avoid, yet it's life's singular guarantee.
"Our society today is a very death-defying society," said Ferris. "We don't talk about it. And we have all these euphemisms for death, like 'passing' or 'gone.' It's facing our own mortality, absolutely."
Or not. Meaning ultimately that the circumstances of one's death are rarely contemplated, if at all.
"People just avoid that," Beaudin concurred. "We talk about marriage, we talk about finances, we talk about kids, we talk about retirement. But we don't talk about the death part."
"To talk," he said. "If you have a significant other, talk about everything. That's so important because how else is that person ever going to know what makes you happy or what you want or what terrifies you? Because we're all going to get that in the end. We're not going to avoid it. We're not going to buy our way out of it."
That's the rub, though. What if there is no significant other in the room? What if a terminal patient, for any number of reasons, is left to fend for themselves on that final journey?
McClelland's daughter, Kathleen McClaine, travelled from Michigan to spend a week with her mother recently. She left just after Good Friday, at least knowing Karen's "compassionate companion" would be dropping by the apartment on a regular basis.
In McClaine's view, a relative stranger is better than an estranged relative.
"But the right stranger is only a stranger for a moment," she added. "They stand in the gaps for me when I can't be here. I know she's not alone. Because being alone is tantamount to pushing the button. Time becomes the enemy. You can't let that happen to someone you love. You can die a lot faster from loneliness than any disease in the world. Believe that."
Her mother agrees.
"It's right up there at the top," she replied, when asked about the importance of a visitor. "You have to have something to focus on other than yourself and your illness. You have to have more.
"People need to have someone to talk to. They need someone to care. It will make a difference on how I make it through this process. This is about living. As long as you're here, you're living. You're not dead, right? I mean, sometimes I'm surprised that you can actually forget you're dying. I can still forget I'm diagnosed as terminal."
"Like right now," McClelland replied. "When we're talking about living and dying. People are here talking. The hum of life."
As McClelland said, everyone dies differently because everyone lives differently.
The end is an unknown, but it comes just the same.
Hello, my name is Helen. I've come to sit with you awhile.
Republished from the Winnipeg Free Press print edition April 21, 2012 J1