Palliative care at home can be an excellent support for many families, enhancing quality of life and enabling a person to pass away within the familiarity and comfort of their own home.
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18 May 2023
| Home Care
In our modern world, few topics are still considered “taboo”. Yet death and palliative care appear to be among the handful remaining.
Palliative care may not be the subject of everyday chit chat, and often, it can be a sensitive, painful topic to discuss.
But in bringing this important topic to light, we gain a deeper understanding of something which could greatly benefit us all as we experience or support someone through the end-of-life stages.
To learn more, we spoke to BaptistCare at home’s Elaine Demelo, a Care Facilitator with more than 25 years of experience in palliative care at home. Drawing from real clients’ experiences, she walks us through the process of palliative care at home – what it’s like, the benefits it can bring (including respite opportunities for caregivers), and how families can prepare for palliative care at home.
“With the right supports in place, many people prefer to stay in familiar surroundings with their family nearby,” says Elaine.
One of Elaine’s recent clients, Barbara, and her daughter Clair, chose to do just this.
Barbara had been living with Lewy Body Dementia since she was 65 years old but reached out to BaptistCare in 2019 when the disease significantly worsened. Clair had given up work to become a full-time carer for her mum at home and was also seeking additional support.
“Barbara had a Level 4 Home Care Package,” says Elaine. “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.”
“Our role as palliative home care workers is about providing family-centred care - listening to the client, their family, and understanding their particular needs” – Elaine Demelo, BaptistCare Palliative Care Facilitator.
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.
The features of palliative care include:
“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 time to recuperate.
Throughout her illness, Barbara also enjoyed regular stays at the beautiful Wilmette Cottage, one of several BaptistCare overnight respite centres located across NSW.
“Our team’s regular home visits provided respite for Clair, too,” reflects Elaine. “She could do the gocery shopping or attend her own appointments. Sometimes, we’d just have a cup of tea together and a chat.”
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.
“Someone can be palliative for a long period, but signs that they may be approaching the end of their life, such as drowsiness or changes in their appetite or breathing, often become more prevalent.
When it comes to preparing for palliative home care, Elaine says education and planning are key.
“Having a basic understanding of the end-of-life process, the challenges and how to address them, as well as a carefully thought-out plan, will make for a smoother and more peaceful experience for everyone,” says Elaine.
There are several practical steps you can take to help prepare yourself and your loved one:
At BaptistCare, our trained palliative care teams work with a people-first approach. They take time to connect with each person’s story and understand who they were before they became ill.
“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 are at the beginning of your or your loved one’s palliative care journey, our team are here to help you.
Our friendly, expert team can guide you through the care and support services we have available. They will listen to your story and provide advice based on your situation.
Please call 1300 275 227 (Monday to Friday, from 8:00am to 6:00pm) or email us at email@example.com. Alternatively, complete the enquiry form below, and one of our helpful team members will be in touch.