Leo’s Place, a home of comfort and respite at life’s end
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The last full week in May each year is National Palliative Care Week, and this year a few of Canberra’s landmarks are being lit up in red and blue to promote it.
Why do we need to ‘promote’ palliative care? Most people understand palliative care to be the care received in the last few weeks or days of someone’s life – involving doctors, nurses, pain medication, equipment and often a hospice or hospital. However, palliative care is much, much more. While it does often involve these things, it is a multi-layered continuum of care that helps people live their life as fully and as comfortably as possible when living with a life-limiting, or terminal illness.
Palliative care should be discussed when someone is diagnosed with a life limiting illness, but often it isn’t. Understandably the focus turns to treatment and, often, being hopeful for a cure. Our mortality is a challenging concept, so naturally most of us choose not to face it. However, when someone tells you that you have a finite time to live – particularly if you had expectations of living much longer – while it may be confronting, if not terrifying, it should be discussed.
When a diagnosis is first received often the illness takes centre stage and the person takes a ‘back seat’ to the illness. Medical appointments, discussions about progression and possible symptoms and/or treatment side effects become the focal point. Time, and other precious resources, are often focused on dealing with medical issues, without due consideration given to starting other important discussions.
Palliative Care ACT, formed in 1985, is a representative voice for palliative care in our region. Its role is to promote, educate and advocate for quality palliative care, as well as provide non-clinical support services.
Caring for someone with a life-limiting illness can be both rewarding and demanding, for the carer and their loved one. For many it is a privilege, and it strengthens relationships, but it can also be incredibly challenging at a time when people are at their most vulnerable. Carer burnout is one of the most significant reasons that people are placed in institutionalised care.
So, to ease the burden on carers, Palliative Care ACT came up with the idea of establishing a non-clinical respite centre, a beautiful home away from home, where people can have day or overnight respite for themselves and for their carer if they so choose.
‘Turning the idea of a respite centre into reality was quite a challenge’, said Dr Louise Mayo AM, President of Palliative Care ACT. Dr Mayo, along with the Palliative Care Board and Tracy Gillard, the CEO, set about raising funds and finding a suitable home. After months of searching, an older style home in Braddon was identified and the project began to come together.
“We had amazing support” said Dr Mayo, “with many fantastic contributors from across business, government and our community. We could not have achieved this without their support – it enabled us to make the respite centre a reality at a time of great need”.
Leo’s Place provides all the comforts of home as well as respite palliative care.
Known as Leo’s Place, after Leo Sutton, late husband of Palliative Care ACT’s patron Shirley Sutton PSM AM and a founding member of the first palliative care service in Canberra, it opened its doors at the end of January 2021, during the pandemic. Leo’s Place is in a lovely suburban setting providing a peaceful and welcoming home-away-from-home where people can come for a day, or up to a week, for some ‘me’ time. All they need to say to friends and family is “I’m going to Leo’s Place”.
Leo’s Place provides a range of non-clinical respite to patients and their carers along with services such as counselling and emotional support, activities to promote well-being, for example yoga, massage, financial planning, and help to negotiate the various services that are available.
A young resident recently shared her reflections ever so movingly:
“Although I understood what was being recommended, I couldn’t understand why. To me, palliative care is restricted to the last few weeks of life, at a stage when classified as a high needs patient involving 24-hour medical care. I wasn’t at that point yet, so I asked the nurse why she was suggesting my GP refer me there. At the end of our conversation, I realised palliative care provided layers of services for people suffering from life-threatening or terminal illnesses and was not the same as hospice care. Shortly after my visit with the GP, I established a relationship with the Palliative Care team at Canberra Hospital.
Leo’s Place
“Knowing that the end of your life is fast approaching creates a kaleidoscope of emotions. Feelings of desperateness when you realise you can’t slow down the merry-go-round – deepening depression when thinking about missing loved ones and not being present for family milestones – the effect on those close to you as they face the reality of losing their loved one – a sense of urgency but already feeling defeated because of the limited time available – putting your affairs in order; and then there is fear of the unknown. These are just some thoughts that go through your head as you come to terms with life limiting illnesses. It was during one of my visits to Palliative Care, when voicing some of these concerns, that I was referred to Leo’s Place.
“The major advantage for having a respite care facility like Leo’s place is it can be accessed while you still have some control with self-management of life. Visiting Leo’s gives you the opportunity to take time out from the pressures that are faced daily, which are not just restricted to the patient. There is also a heavy burden placed on family members who are providing care daily and dealing with their own emotions and sense of pending loss. Sometimes they need a break too.
Leo’s Place
“Leo’s Place provides a safe and friendly environment for me to take some time out, clear my head and give my family providing my care some space to breathe, knowing that I am being taken care of to the highest of standards in a beautiful home.
“Leo’s Place affords those with life limiting illnesses a great deal of dignity because at Leo’s they understand what you and your family are facing and provide care that helps everyone cope better. Having the service available for Carers to use is also of value to all concerned.
“Leo’s Place provides a safe environment where you don’t have to mask your emotions for fear of upsetting your loved ones which often happens at home. You can relax and get on top of the particular issues that are confronting you, of which there are many. It creates the opportunity to control the stress and pressure around the patient and also gives family members some time to rest and come to terms with everything. Having Leo’s Place available as part of the Palliative care process has been a valuable resource that I am extremely grateful to Palliative Care ACT for creating Leo’s Place, it has made a major difference in my life. I can’t imagine the past year without the services the management and staff provided me with whilst in their care and I hope those facing life limiting illnesses will be given the opportunity to use Leo’s Place services well into the future.”
Leo’s Place
Since Leo’s Place opened over 13,000 hours of respite have been provided.
As it is with many things, if you understand a bit more about palliative care before you need it, it can make a big difference. Why don’t you start a conversation about it with your family this week – you might be surprised where the conversation leads.
National Palliative Care Week – 22-28 May 2022
For more information call 6255 5771 or visit https://www.pallcareact.org.au
