When should you consider palliative care preparation?
No one wants to face a final goodbye, but being prepared is important and knowing how you wish to live in those last few years can put your mind at ease and lift your spirits through a sense of familiarity and comfort.
If you’ve lived a life that’s full, travelled each and every highway — say “goodbye” your own way. (Source: Supplied)
Elaine Demelo, a care facilitator for BaptistCare with over 25 years of experience in palliative care at home, says that providing comfort to families and managing pain during life-limiting circumstances is critical for BaptistCare.
“With the right supports in place, many people prefer to stay in familiar surroundings with their family nearby,” says Ms De melo, “[…] our role as palliative home care workers is about providing family-centred care — listening to the client, their family, and understanding their particular needs.”
“We care and support the family during the period between diagnosis and death, however long this may be. It might be weeks or years. Palliative care can have a big impact on a person’s physical, emotional, and spiritual well-being as they come to acceptance. It helps them, and their family, to cope throughout this period.”
In her experience, Ms De melo says that one of her clients, Barbara and her daughter Clair who had become a full-time carer to deal with progressive Lewy Body Dementia, which had worsened in 2019.
“Barbara had a Level 4 Home Care Package. That meant that she and her family were able to access our support services, subsidised by the Government. We partnered with her daughter, Clair, to create a personalised Advance Care Plan for Barbara, based on her preferences and choices.”
Alongside visiting hospital staff, Elaine and other BaptistCare at-home care workers were part of a close-knit team, providing care and support to Barbara and her family during the last few years of her life. Barbara passed away peacefully at home in December 2022.
“Caring full-time for a loved one who is dying can be both beautiful and exhausting,” says Elaine. “It’s important to take regular time out to rest and recover so that you can continue to provide the best possible care for your loved one.”
As the primary caregiver for her mum, Clair needed to ensure she also took care of herself to provide the level of care her mum needed. When Barbara was well enough, she enjoyed a day of stimulating, fun activities at her local BaptistCare Social Club allowing Clair the much-needed time to recuperate.
Palliative care can be accessed any time after the diagnosis of a life limiting or terminal illness, although according to Elaine, it’s often better to arrange earlier rather than try to manage later.
Just like birth, everyone’s end of life experience is unique. Although there are recognisable signs of progression, the palliative process and the time it takes can differ from person-to-person.
“It was our privilege to care for Barbara in the final chapter of her story,” says Elaine. “She lived a full life and had great joy in seeing her children grow up, with them caring for her so beautifully at the end of her life. It was an honour to get to know Barbara and her family and provide dignity, compassion, and care for her in those final days.”
If you’re thinking about palliative care preparation:
- Connect with your network of people, letting them know that you need some help
- Get in touch with a care team, such as BaptistCare, to let them know what your needs are
- Consider appointing an Enduring Guardian
- Create an Advance Care Plan (ACP)
- Learn about the stages of the palliative care process
