Bethell House: A tranquil home away from home
Bethell House not only offers a tranquil setting for those at the end of life and their families, but it is a remarkable cross-community effort that truly proves the adage that it takes a village.
I pull up the lane leading to Bethell House and carefully nose my car into a spot among the half-dozen panel trucks and pick-ups that crowd the entrance way. As I enter the front door, I’m assaulted by the buzz of chainsaws and the pounding of hammers. I’m here for a tour of the site, and I know the current storm of activity will soon subside and be replaced by an extraordinary oasis of tranquility – a “home away from home” for residents of Caledon and Dufferin who are living through their final stage of life.
Set on four acres on the northern edge of Inglewood village in Caledon, Bethell House will officially open April 14 as the fi rst full-service residence dedicated to hospice care in the Headwaters region.
Today, my tour guides are Nancy Hall, manager of resident care, staff nurse Donna Loughren, and Sheilagh Crandall, a member of the gardening committee.
As Nancy hands me a hardhat, I ask her about the guiding principles behind the new building. She answers without hesitation, “If this were my home and if this were my family, this is what I would want.”
Her reference to “home” echoes an earlier interview I’d had with Gabrielle Coe, executive director of Hospice Caledon: “The purpose of Bethell House is to provide a beautiful home for people in the most fragile time of their life.”
A 1997 national survey revealed that a vast majority of Canadians want hospice care available to them if they become terminally ill. Yet 75 per cent of us still die in hospitals or long-term care residences that may or may not have palliative services. Full-time residential palliative care facilities are as rare as mid-winter robins. According to The Hospice Association of Ontario, there are only twenty in the province.
Locally, Headwaters Health Care Centre does have three palliative care rooms where families can visit at any time and even spend a night or two with their loved ones. However, nursing staff must divide their attention between palliative patients and their general ward duties. Local home-care services are also available to palliative patients in their homes, but between visits families fend for themselves.
Carol Riddell, the palliative care co-ordinator at Headwaters, says she “can’t wait till Bethell House opens.” She believes it will provide a welcome addition to current health care services by meeting the specific requirements of adult patients in the last two to three months of their lives.
In those final weeks, wouldn’t all of us choose to live as comfortably as possible, both physically and psychologically? That is the primary goal of full-time on-site palliative care. Dr. Robert Saul, who heads palliative care at Credit Valley Hospital in Mississauga, has noted that “having a site outside of the hospital allows you to be more creative, it may stop ‘medicalizing death’ so that we can focus on other things, like how can we create a space for living rather than for dying.”
Nancy Hall, who worked for more than two decades for the Victorian Order of Nurses, mostly as a palliative care resource nurse, says that a site away from the clinical milieu of the hospital has been a dream shared by Hospice Caledon and community nurses for a long time. “People really want to stay at home” she says, “but that is not always possible if the caregivers in the house don’t have the necessary skills, if they’re burnt out from exhaustion, or if they don’t have the money for round-the-clock personal care.”
Realization of the dream became possible when Caledon resident Lorna Bethell donated $2 million to the cause. Her late husband Tony and her daughter Elizabeth had convinced her over the years that a hospice in Caledon would benefit the community. Elizabeth’s conviction came from her years in community nursing and Tony’s from his war experience. He had been a prisoner of war in the notorious Stalag Luft III where he witnessed the deaths of fifty comrades at the hands of enemy soldiers. These events affected him deeply and years later he confided, “Nobody should die such a lonely death as these men did.”
When Tony was dying six years ago the family was fortunate enough to be able to care for him at home. “Everyone deserves that kind of care,” says Lorna. “People should not have to go to a hospital to die – the hospital’s job is to make people better. When life is nearing the end and doctors can do no more, people should live in a home-like atmosphere with family and friends around them.”
After her husband’s death she took up the torch and dedicated her contribution to the memory of Tony and his ill-fated comrades. Her formidable generosity was the catalyst that inspired many more donations from the community. With those, along with funding from the Ministry of Health and Long-Term Care, Bethell House was soon to become a reality.
Nancy, Donna and Sheilagh lead me into the central living space just beyond the entrance hall. This houses a spacious kitchen, a dining area, a sitting room, a library, a quiet room and a children’s playroom.
Donna makes it clear there are no formal meal sittings. “Food will always be available and residents have the option of using the dining area, but attendance is not mandatory if they choose to eat in their rooms. We want families to feel as though they were at home participating in their loved one’s life.” Part of the kitchen will be open at all times to visitors who might want to “heat up some soup or make tea and toast for grandma” during their visit.
Visiting privileges are consistent with the home-away-from-home philosophy. Relatives, friends, even pets can come and go anytime. They might even camp for a while on the double pull-out couch in each of the residential rooms.
Each of those ten, fifteen-foot square rooms also includes a wheelchair- accessible en suite bathroom, a mini-fridge, and a capacious shelving unit for books, TV, photos and other personal items. The peaceful atmosphere is enhanced by the interior design of Rafe Bethell (Tony’s son) which features muted colours and handmade wooden furniture. Each room also includes two framed prints and an original watercolour by a local artist.
In addition, all the rooms have a glass door that exits directly to the outside and two windows to let in natural light and provide a view of the gardens.
Today, Sheilagh can hardly contain her enthusiasm for the unique garden design donated by local landscape architects Audrey and Juergen Partridge. An experienced gardener herself, Sheilagh sweeps her hand across the still-wintry scene and declares, “The aim is to create the gardens so that they can be enjoyed as much from the inside as from outside.”
Populated by a mixture of native plants and shrubs, Sheilagh promises the gardens “will attract a wide variety of birds and butterflies.” Then she adds with more than a hint of pride, “Beyond the formal gardens, another significant departure from convention will be the wildflower meadow filled with drought-resistant plants. No lawnmowers, no whipper snippers will assault the peace. The growth will be bushwhacked once a season only. An arboretum around the meadow will house trees planted in honour of deceased loved ones.”
The tour finished, we drive to the old Inglewood general store for tea and a discussion about the practical matters of running Bethell House. For instance, what staff will be on the premises from day to day? Nancy answers, “We will have a full-time staff of thirty made up of registered nurses, registered practical nurses and personal support workers. During waking hours there will be three full-time staff at all times. And overnight, one RN and an RPN. In addition we anticipate that we will need about 200 volunteers.”
As my jaw drops in amazement, Nancy smiles, reaches forward, lifts my chin and assures me the numbers are feasible: “We have 150 volunteers now and another two dozen doing the required thirty-hour palliative care course. The average volunteer commitment will be one four-hour shift per week. Volunteers are also welcomed who can commit to an average of one shift twice per month on evenings and weekends.”
Volunteer duties will range from companionship for residents, household duties or meal preparation, to gardening, reception and clerical work, or the provision of complementary therapies. Says Nancy, “It’s amazing how many people want to help in some way.”
Hospice Caledon is in the process of recruiting a medical director, a position for which “there has been a healthy degree of interest,” says Gabrielle Coe. The ideal candidate will be a family practitioner with a special interest in palliative care along with a knowledge of pain and symptom management.
What about the cost? Since residents will live here free, where on earth will the money come from to sustain the operation? Replies Nancy, “About 50 per cent will come from the Ministry of Health and the remainder will come from fundraising initiatives and private donations. People can contact us and we’ll let them know what our needs are and how they can contribute.”
As I listen to Nancy, Donna and Sheilagh, I find myself hoping that I’m still in the area when my time comes for hospice care. The question follows: How do you choose who gets in? Again Nancy explains: “Doctors, other health-care providers, or family members can contact the local Community Care Access Centre for consideration. Chances are, if there’s a vacancy, there will be a room waiting for you.”
As we say our goodbyes, I can’t help but appreciate the dedication and generosity it has taken to bring Bethell House to our area. It will not only offer a tranquil setting for those at the end of life and their families, but it is a remarkable cross-community effort that truly proves the adage that it takes a village.
When I asked Gabrielle Coe what she would like to say to the community now that Bethell House has become a reality, she took a quiet breath and offered a heartfelt “Thank you.”
Learning more about living than dying
From 1990 to 2oo7, I volunteered for Hospice Dufferin, a community program devoted to serving the needs of people living with life-threatening illness.
I began, not without trepidation, with a series of weekly visits to the home of my first companion. (The term “client” never quite captured the essence of such relationships for me.) My duties were simple: to offer an ear and companion-ship to a man confined to his house because of his illness.
As I remember, there was surprisingly little awkwardness as we launched our new association. That first day, over tea and cookies, he began to tell me his life story. With each visit from then on I was privy to chapter after chapter of his personal narrative, until he succumbed to his illness a couple of months later.
During that first relationship and in several others over the next decade or so, what I noticed again and again was the complete lack of artifice in my companions. It probably helped that we came to each other as mature adults without prior acquaintanceship. I know now that I learned a great deal more about living from these men than I did about dying.
Many people have asked me over the years if my hospice work was sad or depressing. On the contrary, some of my most joyful memories of recent years occurred during my time as a hospice volunteer.
In 1991 Hospice Dufferin inaugurated “Circles,” a program that brought together eight to a dozen clients every Thursday to meet with four or five volunteers for a morning of games, crafts and sharing. The dominant sound in the room each day we gathered was laughter. It erupted easily during raucous domino games or simply from animated conversa-tions. On a few occasions folks elsewhere in the building felt obliged to ask us to “keep it down!”
I remember having a snowball fight with Suzanne a couple of months before she died. Of course, sometimes there were tears when one of us reached the end. But as George Bernard Shaw noted: “Life does not cease to be funny when people die, any more than it ceases to be serious when people laugh.”
My last one-on-one companion became, over five years, a very close and admired friend. Jim and I met at Circles and soon I was a regular guest at his farm. Lorna would bring in the tea with cake or cookies as he and I babbled on and on about politics, business, farming, and much more. He was a remarkable man I would not have otherwise met.
Without doubt the benefits of hospice volunteering are multiple. First, you are contributing to the larger community, at the same time as becoming a member of another. Then, there are the connections and friendships that cannot help but enrich your life.
Personally, the experience led me to reflect more openly on my own mortality. Not such a bad thing, given the undeniable fact it is a destiny we all share in common. Oh, and don’t forget the tea and cookies.
Bethell House, a residential hospice, is located at 15835 McLaughlin Rd, at the north end of Inglewood village in Caledon. For information about the services of Bethell House and Hospice Caledon, or to donate or volunteer, call 905-951-3534, 1-800-305-7905, or go to www.bethellhospice.org.