GRAND MAGAZINE, January-February 2011

Life in the face of death 
By Karen Kawawada

“Nova, my love! How are you?” Joan Feth approaches Nova Pollock, her arms extended. The two women embrace so tenderly, anyone watching would assume they were family, or at least close friends for many years.

In fact, Pollock, 79, and Feth, who is in her 60s, have known each other only a few months. Pollock has cancer and several months ago, doctors were expecting her to die within weeks, perhaps days. She has since rallied but her health is still fragile, her prognosis uncertain.

Feth is a longtime volunteer for Hospice of Waterloo Region. She meets with clients weekly, offering companionship, help with errands, or just a chance to get out and have fun.

Pollock has enjoyed the outings they’ve had together, such as to Sears to buy a winter coat, and to a tea room in New Hamburg for peach fritters she raves about.

But it’s the developing friendship that means most to her. “We’re very fond of each other. We both feel as though we’ve known each other for years,” she says in her precise voice. 

Feth says she felt the same way from the moment they met. “We just walked into each other’s arms. It was amazing.”

Despite the less-than-happy circumstances in which they met, the two women spend much of their time together laughing.

“There’s nothing morbid; we don’t sit around and wear crepe and prepare for the saddest time possible,” says Feth. “It’s very positive and upbeat.”

In fact, what Hospice of Waterloo Region does really isn’t about death, she says. “It’s absolutely about life. It’s living the best life you can as you’re dying.”

Pollock, though she accepts that she has a life-threatening illness, puts things differently. 

“I don’t view myself as ill. I just view myself as alive, and I keep on being active and doing things … I suppose I’ll die one of these days, but I’m not thinking that way. I’m thinking alive.”

***

Hospice of Waterloo Region has about 220 volunteers, most of whom visit with clients as Feth does, though some also provide transportation or help out at the new Hospice Family Centre.

The organization also runs a weekly day program for patients, bereavement programs, and support programs for children and youth faced with illness or death in their families.

It doesn’t, however, have beds of its own. As a community hospice, one of its mandates is helping people live at home as long as possible.

“Nobody wants to live in the hospital,” says executive director Irena Borg. “Most people say they want to die at home.”

Not having to operate beds gives Hospice of Waterloo Region the ability to help people for months or years. In contrast, the average stay at Lisaard House, the region’s only residential hospice, is two to three weeks, according to Jackie Hatherly-Martin, vice-president of that organization’s board.

Lisaard House, a six-bed hospice in Cambridge, recently celebrated its 10th anniversary. Over the last decade, there have been about 800 residents, all cancer patients, says executive director Connie Dwyer.

Last year alone, Hospice of Waterloo Region served 850 patients with a range of illnesses, and their families, for about a year on average, says Borg.

“Why community hospice? We can serve almost 10 times more people … We can provide more services.”

Still, there are plenty more people in the community who could benefit from Hospice’s programs, but who aren’t referred to the organization or don’t make the call, says Borg.

Too often, she says, her charity is called in only when a person has days or weeks left to live. At that point, the patient is usually too sick to attend the day program or go on outings. Hospice will do what it can, such as sending a volunteer to the patient’s bedside, but “if people would call sooner, they could get a lot more support.”

Putting off hospice care is part of our culture, says Borg. “People jump on, ‘I’m going to beat this’ … But there aren’t any cures for some of these diseases. That’s the truth.”

***

Pollock had been having stomach problems for some time when she went to the doctor’s last February. She asked him to investigate, but he told her there was nothing wrong with her.

Four days later, she woke up at about one o’clock in the morning feeling she needed to vomit. When she went to do so, all that came up was blood.

Pollock’s husband has dementia, but that night, he was lucid and supportive. He phoned friends, who took her to hospital, where doctors found she had multiple lesions in her stomach.

Soon, she had a diagnosis – non-Hodgkin’s lymphoma, an advanced case. She had lost nearly half her blood supply, and as a Jehovah’s Witness, she was firmly against blood transfusion.

Doctors helped her rebuild her blood supply without a transfusion, and she had radiation treatment. Her condition stabilized, but she could no longer live alone. So she moved into the Trinity Village Studios retirement residence in Kitchener, since her husband had gone into the long-term care centre next door once she became ill.

Pollock believes too much exercise led to a relapse in early summer. She had been taking the stairs rather than the elevator to her second-floor room when she collapsed. 

Though she was unconscious and couldn’t respond, Pollock has some dreamlike memories of what happened after she was taken to hospital. 

“I could see my son’s face leaning over and saying, ‘Mom, you’re going to die.’ (Doctors) thought it would be a good idea for him to tell me, because everybody expected me to die. And I remember saying to myself, ‘How dare he? … I’m not going to die.’ It’s funny, isn’t it – that’s the way I reacted in this nightmarish state I was in. Well, it came true. I didn’t die.”

Eleven days after her collapse, she woke up. “(My doctor) told me later, when I was stabilized, that she expected me to have brain damage or be completely brain-dead, but I turned out fine. I really amazed the doctors and the medical profession.”

It was while she was recovering in a palliative care ward at the Freeport site of Grand River Hospital that she discovered Hospice of Waterloo Region.

At the time, the hospice organization had a weekly day program in the Freeport hospital, and Pollock got involved, enjoying brain teasers, crafts and companionship. Hospice also matched her with Feth once she was out of Freeport and back at Trinity Village. 

Like all Hospice volunteers who work directly with clients, Feth was carefully screened and went through an intensive 33-hour training program. Now she’s also a support person to other volunteers.

She has had about eight clients in as many years. Each relationship has ended the same way. She has gone to every funeral and mourned each death. Nonetheless, with the support of her husband and the many resources at Hospice of Waterloo Region, she keeps volunteering.

“The memories soon take over, the positive memories, and you hope that’s the way it is with their families as well.” 

She says she has gotten more from her clients than she could ever hope to give. 

“I think the biggest (lesson) is to simplify your world. When it comes down to … approaching the end, nothing much matters except the relationships you have with people, the positive memories you have. Stuff falls by the wayside. It’s just stuff.”

***

Borg, the Hospice executive director, is intimately familiar with the reflex to deny the imminence of death. In 1997, about 10 years into her career in palliative care social work, her own father was diagnosed with prostate cancer that had metastasized to his bones.

In hospital in Montreal, her father talked about having his garage door fixed so he’d be able to get in and out the house without having to lift the heavy thing. Without question, Borg got the work done. 

But her father never made it back home. It wasn’t until the doctor told her his CT scan “lit up like a Christmas tree” with tumours that Borg realized just how limited her father’s time was. 

As for her father, “right up until the very last week, he thought he was coming back (home),” she remembers. He ended up dying in hospital just six weeks after he was diagnosed.

With that experience in mind, Borg trains volunteers on how to talk to clients about death – but also teaches them that the conversation may never happen, and that’s OK. 

“None of us are programmed to accept that we’re going to die,” says Borg. “We always plan for the future. So talking about dying with someone is not typical.”

Sometimes, though, people do want to talk about death, says Dwyer, of Lisaard House. 

“Most people who are about to die know they’re about to die and they’re usually quite open to talk about it. Often they’re just waiting for someone to open the door.”

Part of the difficulty is that “the resident may be willing and the family not,” says Hatherly-Martin.

Societal unwillingness to address the idea of death openly can affect the medical care patients receive, sometimes compromising the quality of their lives in favour of slightly extending the quantity, says Borg. 

“Doctors are trained to cure people. They see it as failure when they can’t.”

Stopping active treatment and accepting palliative care doesn’t mean there’s no hope, Borg says.

“There’s always hope, right to the very end. Hope for a peaceful death. Hope for time with your family. Hope to get to that wedding.”

***

Gloria McCready, 55, knows something about hope – and also its counterpoint, despair. The Kitchener woman was diagnosed with pulmonary hypertension and scleroderma – a rare disease that hardens organs – back in 2002. She was given six months to live.

Then a new drug came onto the market that significantly lengthened her life expectancy. However, it still left her very weak. There were tubes going into her chest for the drug, and side effects included chronic pain and fatigue. 

Working was out of the question. She lost interest in her hobbies. And gradually, the friends who had been so helpful when she was first diagnosed stopped coming around as much. They had their own lives to lead.

About three years ago, she was so lonely and depressed, she wished for death. 

“I just had no hope left,” she remembers. “I just wanted to get it over and done with. Just, ‘God, why don’t you take me? Because what good am I? I can’t have conversations with people. My world has become so small, I don’t even know what to talk to people about anymore. So what’s the point? What is the point?’ ”

As she was still considered a palliative care patient, the Community Care Access Centre put her in touch with Hospice of Waterloo Region, which set her up with a volunteer.

“I really feel like she’s pretty much saved my life,” says McCready. “I’ve never had anyone in my life that has been so willing to listen and put someone else first ... I’ve never seen her not put me first, and that is not an exaggeration.”

More recently, another new drug has further improved her condition and now she’s no longer considered to be under palliative care. 

“As far as I’m concerned I’m going to be here for a long time … and that’s a good thing,” she says.

However, with that silver lining comes a cloud. After three years of seeing her volunteer weekly, Hospice is now asking McCready to gradually reduce her contact with the volunteer and go to the weekly day program instead.

McCready says she enjoys the day program and understands intellectually that other people need her volunteer more than she does. But it still hurts.

“She’s my best friend and I don’t know how I’m going to deal with that,” she says, tearing up. “I’m going to miss her so much.”

It’s rare for Hospice clients to improve as much as McCready has, but it happens, says Borg. Life is unpredictable, and so is death. “That’s part of the reality.”

***

For Pollock, stopping chemotherapy after three sessions this autumn – and therefore, stopping the fight against cancer, at least in the typical medical sense – wasn’t a difficult decision. 

“I really got very ill and I felt like it was taking the quality of my life away from me, so we stopped it,” she says matter-of-factly, adding the chemotherapy was aimed only at extending her life, not curing the lymphoma.

She hasn’t however, given up on life. She’s seeing a naturopath and drinking noni juice, which is reputed to have health benefits. 

“I’m not saying it’s going to cure the cancer but it’s giving me strength and I’m feeling good,” she says. “I’m beginning to feel strength coming back into me.”

Whether due to her positive outlook, the natural supplements or both, Pollock’s health has improved. Recently, her doctor gave her “the most wonderful news” – her cancer is now in remission. 

It’s not a cure. At some point, the disease is likely to worsen again. But regardless of just how much time she has left, Pollock has “a new lease on life,” she says.

For now, she’s taking life a day at a time, concentrating on what’s important. She has written her memoirs on her laptop, chronicling her youth in what is now Zimbabwe and Zambia, the sudden loss of her first husband, and her struggles to raise three children alone in Canada. 

Recently, 11 family members came from as far away as North Carolina to gather in Trinity Village’s private dining room, where Pollock presented them each a copy of the 27-page booklet. 

She’s still keeping busy. She’s knitting a sweater for her grandson, learning Spanish from the Colombian receptionist at Trinity Village, doing lots of reading. She doesn’t dwell on the idea of death. But when it does come, she won’t be too scared.

“It was a little scary at first but I know that death is only falling asleep, really,” she says. “Naturally, your body just ceases to exist, but I have the hope of being resurrected and living in God’s kingdom … That is my belief. So I’m comforted by that…

“If it has to come, it will come, but I honestly don’t feel it’s staring me in the face. And I think that’s what’s keeping me alive.”

Sidebar - Hospice Facility

Hospice of Waterloo Region has been helping patients with life-threatening illnesses since 1993, but only recently has it had a physical home to call its own. 

Last August, the organization opened its own building on Lawrence Avenue in Kitchener. The $1.7-million Hospice Family Centre is the result of seven grueling years of planning and fundraising, says executive director Irena Borg. 

Now, for the first time, there are purpose-built examination rooms for clients to see palliative care doctors whose aim is to help patients live in comfort and dignity in the time they have left, rather than to cure disease. 

Clients can come to the same building for the weekly Day Away program, which gives them a fun outing and their caregivers a break. The program is held in a large central room that’s airy, homey and backs onto a park.

There is space for programs for children and teens that help them cope with a family member’s illness or death. A room for play therapy is full of toys, including a large sand table.

There’s also a mini hair salon, full kitchen, meditation and prayer room, resource library, volunteer lounge, and a workspace for nurses who provide palliative care education programs around the region – mostly training nurses, support workers and social workers at nursing homes.

The building is paid for in full, “so money coming in doesn’t go to a mortgage,” notes Borg with pride, noting that for the last couple of years, charity watchdog organization Charity Intelligence has named Hospice of Waterloo Region one of Canada’s top health care charities.

The organization, which has six employees, does its work on less than $500,000 a year. The budget may be lean, but it does a lot with what it has, says Borg.

“It’s very hard to raise money for palliative care. It’s much easier to raise money for the cure.”