If you need emergency services, please contact 000
Are you feeling burnt out? Consider aged care respite.
Looking for a rewarding career in aged care and ready to start now?
View our current retirement living homes for sale.
Search
Contact Us
Close
Services to keep you independent
Government-funded support
One on one care and support
Support to help you stay at home
Allied health support services
Everyone deserves a break
Government or privately funded
Connect with others
Help to access support services
Personalised care and support
14 locations across Victoria
Principles of Montessori
Tailored to individual interests
Helping everyone adjust
If you care for someone, we’re here
Maintain your quality of life
Here for people of all ages
Take a break and have some fun
All your questions answered
Independent living for over 55s
Our latest properties available
Inner Melbourne communities
Camberwell
Deepdene
Kew
Hawthorn
Toorak
Suburban communities
Clayton
Kyneton
Trentham
Eltham
Bacchus Marsh
Pakenham
Balwyn
Brunswick West
Greensborough
Torquay
Everyone deserves a home
services for 18+
Great places to call home
Reach your developmental goals
Pathways to paid employment
Small group programs
Stay independent at home
Get the best out of your NDIS plan
support for 13-18 year olds
Reach developmental goals
Fun programs for your teenagers
NDIS planning
programs for 0-12 year olds
Support for developmental delays
Fun programs for your kids
A school where your child can shine
About St Paul’s College
Prepare your child for school
View our for school policies
Commited to the safety of your child
Menu
Back
Enter your search term below
Blog
→
Palliative Care: disability and dying well
Palliative Care is not a comfortable topic for most. Though it is fair to say it’s more accepted in an aged care setting where the person has “lived a good life” and death is the next natural step.
But what about children and young people with disabilities? This week is National Palliative Care Week, and an important opportunity to raise some questions in this area.
As an organisation that supports people with disabilities and their families, our VMCH community has experienced the heartbreak of losing students from our specialist school, and adults who access our services. Degenerative conditions, compromised health systems which turn into life threatening complications, and general illnesses such as leukaemia are often contributing factors.
So how do you explain to someone with an intellectual disability they will die? How do you support the parents of a child who lives with a disability that will result in the end of their life?
Maree Gilbert is one of 16 VMCH Pastoral Care Practitioners whose role involves supporting individuals, their families and the VMCH community through the end of life journey. Maree spends much of her time at St Paul’s College, our specialist school in Balwyn.
“The support I provide to a family will depend on their wishes: it could be emails and phone calls of support, visiting hospitals or hospice settings, visiting homes, prayer, grief and loss support,” Maree says.“I have sat with a student in hospital while their parent catches a few minutes of sleep or has a shower. I have read stories to students, arranged for priests to visit if that is what the family wanted. More widely, I provide emotional and spiritual support to staff, prayer opportunities for those who find comfort in that, rituals/stories that can be used with students. And when a student has died, I have helped with prayer services for staff and the community and arranged rituals such as a candle and picture of the student to help other students grieve and understand what has happened.”
“The support I provide to a family will depend on their wishes: it could be emails and phone calls of support, visiting hospitals or hospice settings, visiting homes, prayer, grief and loss support,” Maree says.
“I have sat with a student in hospital while their parent catches a few minutes of sleep or has a shower. I have read stories to students, arranged for priests to visit if that is what the family wanted. More widely, I provide emotional and spiritual support to staff, prayer opportunities for those who find comfort in that, rituals/stories that can be used with students. And when a student has died, I have helped with prayer services for staff and the community and arranged rituals such as a candle and picture of the student to help other students grieve and understand what has happened.”
Maree says the death of a young person is obviously something people find hard to understand or accept.
“We feel that a young person has missed out on more. In reality, they have loved and been loved just as much as an older person. All of us leave our mark on the world.”
One of the greatest challenges faced with palliative care in a disability setting is how we talk about death and dying.
“I believe it is important to be honest and open. I have experienced the sense of knowing a young person is aware they weren’t getting better and that their life was coming to an end. I have watched a peace come across a young person when a prayer is said or they are told it is okay to let go of the struggle. I have also seen students and people with disabilities come to terms with a death of a friend – to be sad that they will not see their friend again, that they are with God.”
Maree says it’s important we talk about death, grief and loss. And that perhaps a way of becoming more comfortable with the topic of palliative care is looking at it as a privilege not everyone gets.
“Sudden and unexpected death does not give us the opportunity to say our goodbyes. I hope that as a Pastoral Care Practitioner I can support the dying and their families to journey through this time with a sense of not being alone.”
If you would like some guidance about how to support someone with intellectual disabilities face confronting situations, pleaselick here.
For more information on palliative care support in Australia, visit this website.
Website Design & Development by ID Digital Agency
Locating the information you need has become far easier with our useful guide.
Answer a few simple questions and you will be on your way.