Perhaps one of the greatest fallacies about death in our culture is that we can’t be prepared for it.
For the past 32 years, a volunteer-driven community organization has been helping terminal patients and their families deal with the inevitable and the unknown, in as comforting a way a possible.
“We all have to die, but we don’t have to die in fear and in pain and in distress,” says Rosslyn Bentley, administrator of Hospice Wellington.
Since 1980, Hospice Wellington has provided compassionate care, emotional support and practical assistance to individuals and families facing a life-threatening illness.
“We provide compassionate support to people in the community and in our residence who are facing an end-of-life journey and their families and for those who are grieving and bereaved,” she explained.
Bentley notes that while 70 to 80 per cent of Canadians say they want to die at home, about the same percentage actually die in hospitals. A hospice facility provides an alternative with a comfortable home-like setting, and the advantage of professional and trained volunteer support staff.
“You have a private room with nice surroundings and people who are going to talk to you in a way that makes sense,” said Bentley.
Hospice Wellington is a registered charity that operates primarily through private donations and fundraising initiatives. Funding is also provided by the United Way, the Waterloo-Wellington Local Health Integration Network and the Waterloo Wellington Community Care Access Centre. The Rotary Clubs of Guelph and Fergus-Elora were also instrumental in supporting Hospice Wellington’s establishment and growth.
All Hospice Wellington services are non-denominational and are offered through donation support and public funding, so no charges are presented to the client. Fundraising events and memorial donations are also sources of hospice funding.
Until the opening of a 10-bed residential facility in Guelph in June 2010, Hospice Wellington’s role was to provide services to terminally ill patients and their families in community settings – hospitals, halls and wherever space could be found.
While the community programs continue, the residence provides a tranquil, welcoming home for up to 10 clients and their family and friends in the last few days or weeks of life.
Through volunteers and staff, the hospice offers a wide range of programs aimed at supporting patients and their families. Bereavement support includes one-on-one or group sessions and walking groups to provide companionship to those working their way through the bereavement process. Emotional support is provided through non-judgmental discussion sessions.
The facility also provides respite for caregivers, who can use the time a patient is with hospice volunteers to rest, take care of essential errands and find time for their own self care.
Hospice is not only about dying. It is also about “wellness.”
The Wellington Wellness Centre in Guelph offers daily self care activities, and a weekly wellness support group in Fergus provides a holistic approach to promoting self care of the client, those grieving or bereaved, or for caregivers of clients in these situations.
Diane Gagnon, of Elora, is a volunteer with the wellness program and is also involved in oncology therapy and one-on- one visiting with clients. She finds the work both rewarding and important. Wellness volunteers help clients through sessions involving tai chi and therapeutic touch.
“It’s a healing and relaxing way to do it. They love it,” says Gagnon, a retired teacher who originally got involved with hospice out of a desire to help people.
“I just wanted to meet people and do something productive,” she said.
Gagnon saw the benefits of hospice first hand when a friend came into the facility during the passage of a loved one. Because hospice, unlike a hospital, can focus entirely on life’s end, families become more comfortable, she said.
“They didn’t feel segregated, they felt like they were part of a family,” said Gagnon, adding, “It’s a very special place.”
Bentley said the experience of one recent client illustrates how hospice staff and volunteers connect deeply with the patients and their families because of the personal nature of the experience.
“They had their entire family here and eventually all the family and all the staff and the volunteers were able to say goodbye to that person,” she said. “We celebrated that person’s life in a very healthy way.”
Bentley notes that unlike hospitals, there are no visiting hours or limits on numbers of visitors at the hospice. Families can come and go as needed, stay overnight with the patient, and have access to a comfortable and spacious living area to relax in.
Because each client and family has individualized needs, Hospice Wellington offers a continually evolving slate of programs. Nicole Fantin, a General Art Therapy student interning at the Guelph facility offers clients an alternative way to communicate through their grief.
Art therapy, she explains, is “a combination of traditional psychotherapy and creative artistic expression.
“Some people find talk therapy very intimidating,” said Fantin. “They lose their voice.”
Fantin says creating a work of art can allow someone to tell their story, an important element of connecting with others, when they can’t find another way.
“Grief can sometimes take those stories away from you. If I can give someone the opportunity to continue that story, then that story can live on.”
Death comes in many forms and one of the most devastating is suicide. Bentley said despite the fact Canada is one of the world’s greatest places to live, it also has one of the highest rates of suicide.
The hospice offers a “Bereaved by Suicide” program for people over the age of 20. An upcoming session is planned by the East Wellington Family Health Team in Erin on Nov. 15 from 6:30 to 8:30pm. Anyone interested may join the group that evening or call 519-836-3921 for more information.
Bentley says one of the benefits provided by Hospice Wellington is an environment where those going through an end of life experience can be surrounded by people who understand what they are dealing with.
“In our western culture, we’re so death denying. We don’t want to talk about death. We don’t create rituals,” she said.
In addition to emotional support, the facility also provides assistance with practical matters.
“We see lots of people my age, middle age, and they’ve never been to a funeral before,” said Bentley. “They don’t even know how to make arrangements. So even practical things like that we help people go through that process.”
She says the hospice works to help the bereaved “create a new life after they have lost someone,” noting people often find themselves dealing with things like finances or maintaining a vehicle, which had formerly been handled by a family member who is now gone.
For the terminal patient, the hospice staff and volunteers help them work through the reality of their situation. Often people find themselves with about a week to make final arrangements and say goodbye to loved ones, who may have to be called in from far-flung locations.
“It’s a very, very challenging thing to do if you haven’t thought about it all,” Bentley says, adding that it’s generally very difficult for people to accept their life is coming to an end.
“Of course you’re going to fight this cancer, you’re going to win. So when you have a conversation with people about what happens if you don’t win, that’s terribly devastating for people,” she explained.
Since opening the residential facility, Hospice Wellington has assisted between 230 and 260 end-of-life clients a year.
While the majority come from Guelph, Bentley says the organization is working to expand its reach. About 30 per cent of hospice residents come from outside the city and, of that, about 15 per cent come from the northern portion of Wellington.
Bentley feels that’s partly due to a lack of awareness about the availability of existing services.
“The supports in Elora and Fergus have been there for a long time and we have had them in Mount Forest too and we’re looking to strengthen them across the whole county,” says adding,
“We’re Hospice Wellington, not Hospice Guelph.”
The organization has volunteers across the county and is prepared to put programs in place wherever needed, said Bentley. New volunteers are always welcome, she notes.
“Our volunteers are what powers our organization,” she said. “The professional staff has only been around for the last 12 years.
“It’s very humbling for staff because we see the passion that individuals, who don’t get paid a penny, bring in support of their fellow human beings and it’s incredible, beautiful.”
For more information on Hospice Wellington, call 519-836-3921 or go to www.hospicewellington.org.
