We continue our series on non-government funded and primarily volunteer organisations that make a difference in our community. This week Rob Brennan looks at end-of-life care services.
“Initially I was reluctant; the word ‘hospice’ sounds like you’re on your deathbed but I’ve changed my perspective because they help you,” says long-term island resident Annie.
“They” are the volunteers from The Waiheke Homecare Hospice Trust, a home-care based group led by part-time manager Margaret (“Mags”) Macleod from an office in Moa Avenue, Oneroa.
Annie was first diagnosed with breast cancer in 2010. A mastectomy followed by chemotherapy and radiation seemed to have it in remission. Then early last year an asthma attack kept her in bed for three days. The Hau Ora Trust arranged for Annie to be airlifted to hospital where tests found not only that her lungs were full of fluid but that the cancer had returned and spread to her lymph nodes, bones and lungs.
Having a serious illness and little money is a cruel combination, made all the worse by the complications of living on an island and needing to get to and from hospital for treatment.
“I’m thankful to the hospice, for the taxi vouchers especially. I can’t afford a car. It makes it easy for me,” she says.
In the last financial year to 31 March the hospice provided taxi chits worth about $8000 to enable patients to get medical treatment in the city and on the island.
Help with travel costs is just one of the many ways the charity improves the lives of the terminally ill who use the charity’s services. The hospice does not provide live-in facilities on Waiheke. “We support people staying at home, which is ideal for most people,” says Mags, who has been with the hospice for 13 years.
Last financial year 18 hospital beds, 19 air-pressure relief mattresses and seven electric powered La-Z-Boy chairs that are invaluable for moving patients from a
sitting to a standing position were delivered to homes on the island.
But the homecare hospice is much more than just about supplying equipment to boost quality of life. Mags emphasises that care arrangements are personalised to suit the individual needs of patients. From the pool of up to 30 mostly female volunteers she tries to get a personality fit with the patient, knowing that the work involves “coming into personal space”.
Annie receives frequent visits from the hospice workers, sometimes by Mags or a reflexologist, but most often by her assigned volunteer, Loris Wysocki. The little things make a difference. “I am stuck in the house”, says Annie so being taken out for a drive from time to time by Loris is much appreciated, as was the banana cake she baked recently for Annie’s 47th birthday.
“When you know there are people helping you, it brings your spirits up.”
Annie remains positive about the future. “I’m strong with fighting this cancer. I think you’ve got to be positive with your illness and not make a fuss about it. The main thing is, do what you normally do every day”. The trained volunteers, who provided 300 hours in direct patient care last year in addition to Mags’ time, do what they can to bring that about for people in their care for as long as possible.
Mags’ dual perspective as a nurse and counsellor informs the charitable trust’s approach to care, which goes beyond easing just physical limitations and takes a holistic approach to the patients’ individual needs by applying good listening skills. “I can just ring Mags and talk,” says Annie.
Listening, in a non-judgmental way, takes many forms – from grief counselling, facilitating meetings of the breast cancer support group and a careers support group, or simply taking the time for a bedside chat where the topics can go wherever they need to and without time pressure.
“Sometimes it can just be companionship and sometimes it can just be a new set of ears to come in. Sometimes people can share things that they wouldn’t share with their families or don’t want to bother their family with”, says Mags.
“A terminal illness allows time to get things right with people. It can be a time of real healing within families and allows conversations to take place between loved ones. Suddenly patients become aware of the preciousness of their life.” She finds talking often leads to forgiveness and letting go of long held angst, sometimes in a patient’s very last few days.
The hospice workers also encourage patients to prepare a personalised advanced life care plan. “It took me months but once I’d done it, I felt happy,” says Annie. “It was simple. Once you do these things you know it’s clear and what you want. It makes it easy for the hospice.
“I’m not scared anymore of dying. The hospice gave me comfort, knowing I’m not alone.”
The charity provides palliative care by funding 7.5 hours a week of district nurses’ time. Because under 65-year-olds with a terminal illness do not get government funding, it also funds their housekeeping needs through the Auckland District Health Board’s Home Support service.
All of these services are provided free of charge to the patients but the charity does not receive any government funding. It is entirely reliant on grants, bequests, donations and fundraising to cover its annual operating costs which last year exceeded $80,000.
This year the homecare hospice is not having a formal fund raising event but donations to continue the charity’s work are always welcome, as are new volunteers. Donations and contact can be made through the website: hospicewaihekehomecare.co.nz. •