The twelfth Annual Mayor’s Dinner, April 10, 1999, honours Lucille Mitchell, founder and past president of Hospice of Waterloo Region. Hospice offers individualized care to dying persons and stresses living fully until the very end of life, with dignity and in comfort. It recognizes that patients with terminal illnesses can have some control over their lives until the end and that the grief suffered by their surviving relatives and friends can be eased by trained caregivers. Hospice of Waterloo Region joins the growing number of hospices that are developing around the world. There are currently more than six hundred and fifty programs and services across Canada alone and they can be accessed by patients who are in hospital, seniors’ homes or in their own homes. Trained hospice volunteers provide emotional and spiritual support to families and patients as well as practical help to caregivers who need a break from responsibilities. They support and augment the palliative or tern care given by a multi-discipline team of professional caregivers. As Lucille Mitchell says, 'We won’t be doing nursing care. We will be those extra hands that other services in the community like homecare or VON, don’t fill. We will fill the void when they can’t be there. And our services will be free, staffed by volunteers. We envision being able to reach out to a lot of people who would otherwise be left in the lurch.'
Filling a Community Need
There are many reasons to believe that a great and growing need for hospice care exists in our community and elsewhere. The population is aging at the same time as the healthcare system is becoming even more community based. These factors place more responsibility on family members for the care of those who are dying and in crease the need for support services.
A national survey conducted by the Angus Reid Group in 1997 concluded that hospice care is the kind of care close to 90% of Canadians say they want at the end of life. However, only 6% of Canadians feel that they could adequately care for a loved one facing a life-threatening illness without outside assistance.
The Failure of a Community
I am reminded of a patient many years ago who died very alone in a room in a hospital where I had my first job as a nurse. This is a prime example of where all caregivers failed miserably because of a lack of training and experience and I have deeply regretted ever since my own inadequacy at the time. The patient was a middle-aged, single woman who was stricken with terrible cancer of the face. It ate away at her eyes, nose, one ear and her mouth, left her with grossly distorted features and a foul discharge that had to he cleaned and dressed regularly. This, it seems to me, is the only care that she received. Her private room door was closed at night and when it was reopened in the morning, the stench made all members of the staff loath to enter the room. Unfortunately, no one did unless it was necessary to do dressings, make the bed or serve meals. She had no visitors and seemed to have no family. She was very patient, never complained, never asked for anything and always seemed grateful for the smallest amount of care that was given to her. I remember well her calmness, her enduring patience, and a mysterious sense of wisdom and peace that she exuded. She never made me feel inadequate. I believe now that she had accepted death and that she finally died with great dignity and grace. I don’t know what physical or emotional agonies she may have suffered for I regret that I never got to know her. But she remains a gift in my life. She lives on in my memory as a truly glorious human being. Hospice care might have made so much difference to this woman in the final stage of her life. Nobody even thought of it!
The Success of a Community
Margaret Frazer, on the other hand, also a single woman with no family close by, was the beneficiary of one of the best possible and best-known examples of hospice care available. Sixty acquaintances and friends took turns being with her around the clock during the final three months of her life. The inspiring story of Margaret and her team became a book, Twelve Weeks in Spring, written by well-known author and team member; June Callwood. Callwood describes this experiment in palliative care as “the human tribe functioning at its best.” Margaret’s life ended “in a defiant blossoming of vitality and love” while her friends “discovered their own unexpected strength and humanity.” As Lucille Mitchell says,” There isn’t a volunteer who wouldn’t say that we get so much more than we give — I think we are both richer for the experience.”
Local Response
Hospice of Waterloo Region is a community-based and volunteer driven response to the needs of local people. As such, it has its own unique character be cause it is locally designed, complements existing local programs and sets its own goals. During the period from March 1997 to April 1998 local hospice volunteers provided approximately 11,978 hours of their time to individuals and families in need. In the background, supporting this work, are the dreamers, fundraisers, coordinators and directors whose work assures the vitality and the stability of the program.
In a similar way, The Working Centre got its humble start more than seventeen years ago in this community with a general goal of extending hospitality and of responding in a personal way to employment-related needs of local people. St. John’s Kitchen, which opened in 1985, is a visible expansion of that enduring goal. It offers a safe hospitable drop in place and daily nutritious meals to all those in need. The Working Centre itself has grown and evolved to the extent that it offers, without cost, all job search resources, strong personalized support and wonderful tools for simple daily living and personal fulfillment to as many as 150 people per day.
We are very grateful for the sup port given to us at the Annual Mayor’s Dinner and we are pleased to have this occasion to honour local citizens who have made a significant contribution to their community. And so we say, “Good for you, Lucille Mitchell! You have given a lasting gift to your community. We honour you,”
Hospice of Waterloo Region - By Lucille Mitchell
The Hospice of Waterloo Region is a success, thanks to both the generosity of spirit and capital of many individuals. Our organization joins the growing number of hospices that are developing around the world. Their emergence is fuelled by the growing desire of people to have a say in how and where they spend their final days.
It is never easy to ask for help. During 1998, our volunteers have given over 9,600 hours of service to 344 individuals, both in their homes and/or in hospital. These are families who have had the courage to invite a stranger into their homes at a very vulnerable time in their lives. Imagine how difficult it is when a loved one is dying and their last wishes are to spend time with their family, in their own bed enjoying the life and love that is still a big part of their day. You have done the best you could, but now you are tired and frightened and need outside help. We all know about living but not much about dying.
Our trained volunteers are matched to clients and very quickly become part of the caring team. Respite care becomes very important. The caregivers need a break— something as simple as getting out for a few hours for lunch or to go shopping. The helper becomes a confidante, holds hands, gives hugs. A person may voice fears that they can’t share with family, so confidentiality becomes very important.
Our services are available to people facing a life-threatening illness. We assess each case individually and if we can’t help, we guide you to an organization that can. Our volunteers are the most genuine people who give freely of their time so that the final journey of your loved one is as comfortable and dignified as possible. There is never a fee for those who seek our services.
Something magical happens when you become a hospice volunteer. It takes a special type of personality to do this work. One must enter into a family that has been turned upside down with grief. One of the most often asked questions is, 'What do you say or do?' We say, 'Take the cue from the family.' For example, some people like to be read to, some need the comfort of knowing that someone is there when they fall asleep. We often do night sitting— a small corps of wonderful people will stay the night and this allows the caregiver to get at least a few good nights of uninterrupted sleep — free from the worry that death will come when they aren’t on their guard.
It’s a relief too for the clients for they see their families getting tired of caring 24 hours a day. They know they are loved, they welcome the time for their family to have a break and sometimes they even have a new audience for their jokes. There isn’t a volunteer that wouldn’t say that we get so much more than we give — I think we are both richer for the experience.
Apart from our client volunteers, we have office and fundraising volunteers— all are needed to continue our services. Our speaker’s bureau is busy. If you would like members to speak to your organization, we would be happy to arrange a convenient day and time. One of our most challenging areas is that of fundraising. It is always a struggle to convince companies and organizations that the hospice volunteers need support with so many other worthwhile organizations making requests.
Speaking of miracles, you should meet our staff— Kristen Porritt (is our newly appointed Executive Director), Sandra Corbin and Miriam Dunbar. Sandra is our Resource Coordinator — she wears many hats — she is cheerful and resourceful — orchestrating all fundraising events while keeping the office running smooth. She has never been heard to say that she is too busy or that she can’t. Miriam is our Case Manager. Miriam places our specially trained volunteers with a client when the request is made. She recruits and trains volunteers, does protocols with area hospitals and local palliative care organizations. She has a great sense of humour to match her great insight. We are very fortunate to have such dedicated individuals on our staff.
Every month Miriam holds volunteer support meetings where new ways of help or expanding proven methods are discussed. It is amazing how many times solutions are found through the sharing of our experiences. We work closely with other health care professionals in order to try and present a seam less mode of care. We offer emotional sup port and simple comfort care in cooperation with the medical care they receive. Together we try to make a difference.
It is difficult to cover all of what we do in a short space. We could run a column every week in the newspaper and still not touch all the bases. We are always ready for more volunteers to meet the growing need for hospice care. If you have an interest, you can call Miriam at 743-4114.
Thank you to all volunteers, supporters and staff who have made the Hospice of Waterloo Region a first class organization. Those families whom you will never meet, but have been helped by hospice to turn the final days of one of their loved ones into Days of Living instead of dying, thank you.