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Maria and her mother Angelina’s story is unique to them. It is also a story that many of us with aging parents or those of us caring for a loved one through end of life, can relate to.

Angelina was already living with dementia when she received a diagnoses of pancreatic cancer at The Canberra Hospital in 2019. This was quite a shock to Maria, her daughter.

“I was convinced that I was going down the road of caring for mum with dementia, so to hear that mum had a terminal illness, that was just a new road for me”, said Maria.

A referral was then made to the Queanbeyan Palliative Care team. This was not smooth sailing, as Maria relayed, “We had to transfer over to the NSW system and that was hard, as the two systems don’t connect.” Once the transfer was complete, they felt cared for by the Queanbeyan palliative care team.

“We were so blessed. They are four of the most beautiful women, with their knowledge and what they give out. Every one of them, in their way, were just so helpful. They were gentle with Mum, they were gentle with me.”

The Queanbeyan Palliative Care team and the newly established Queanbeyan Region Palliative Care Volunteer Service are both free services supporting people, carers and families, when a life is limited due to an incurable illness regardless of the illness. The services operates in the Queanbeyan region covering Queanbeyan, Googong, Jerrabomberra, Carwoola, Wamboin, Bywong, Bungendore, Captains Flat, and Burra areas.

Being a carer of someone with a life limiting illness can be daunting. Maria was unsure if she could fully support her mother at home through end of life saying,

“I didn’t know where to start. I hadn’t done any nursing. The easy part was looking after Mum but the nursing part scared me no end.”

Maria and Angelina were provided palliative care assistance from the Queanbeyan Palliative Care team and from their long-time GP.

“The nurses guided me and were just at the end of the phone or they would come out. They were a wealth of information. They taught [and] gave me confidence in myself. They would tell me, ‘You’re the best judge of what’s going on’ and they trusted me. I was empowered with their trust in me. They really made me feel like I could help Mum.”

The confidence instilled in Maria by the palliative care team and their GP gave Maria the self-assurance that she knew what was best for her mum and could advocate on behalf of Angelina and her needs. Like many in our region, Maria’s parents immigrated to Australia from overseas.

“Dad came to Australia in 1952 from central Italy and then mum came three years later from the same village. [They have] been in Queanbeyan ever since.”

The household was multilingual with Italian, English, and the dialect of the village all spoken at home. Although Maria explained,

“We’re not the typical Italian Family! My brother Antonio and I were born here and we’ve lived in Queanbeyan all our lives, but we have no other family in Australia. We were our own little unit”.

So friends have always been important to her family. Maria’s father had died in 2001, so it was just Maria and Antonio who provided the intimate care for Angelina during her illness and until her death in 2020.

“Both my parents were just beautiful, gentle people so we were blessed with a lot of friends and ‘Courtesy aunts and uncles’ who drop in all the time”.

Angelina wanted to be cared for in her community, in her home. As Maria explained, Queanbeyan is their home and the family all lived close to each other, having the same neighbours for over 60 years. Maria describes Queanbeyan as a beautiful city, a friendly place with a lot of special people.

“It’s like the country but you’re close enough to the city. Going down town to the main street there is always someone you know. Community and family is alive in the town.”

Being connected to their community meant that it was important Angelina and her family were supported at home. Providing patient-centred palliative care in the home requires equitable and affordable access to a range of service for patients and family and provision of this type of care, where ever it is requested, is a core principle of all palliative care services.

Caring for someone in the home through end-of-life although is not a one person job and often families need support from health care professionals and their community. Maria commented that,

“Caring is a tough job! There is going to be a lot of tough days. It’s a long haul and as they get sicker, it becomes more demanding.”

Maria was supported endlessly by her brother who provided ongoing respite and care when Maria needed a break, but like most families they required additional assistance by a team of people. Volunteers are often part of that end of life care team, providing client and carer social, emotional and practical support and making a difference to people’s lives. Maria suggested that having support was invaluable as it helped her to be able to do her job as a carer.

“Sometimes just to talk with someone. That’s all that’s needed. Just a little bit of support.”

Palliative Care Volunteers can provide respite which allows family some time out for a few hours each week. Carers and family know their loved one is with someone trained, confidential and who they can trust to be caring and supportive. Volunteer respite in the Queanbeyan region can be provided by the same volunteer who visits the home or residential aged care facility each time. Having the same person visit means relationships can develop. Maria commented,

“It’s a comfort for both the carers and the patient, particularly for people who have dementia. Mum was shy and the dementia made her loose her confidence as she lost her English and was embarrassed that she would forget the words. It’s a great idea just to have that continuity.”

Maria described how they also had some paid respite in the home and how helpful it was for them all.

“They would come in and they would chat to Mum and she would get to know them. It was the interaction they would have with Mum, and I would look forward to their visits too. I would think ‘they are going to have a cuppa and I could get some other things done’, it was nice”.

It can be hard for many people to accept strangers into their home. Maria explained it took her Mum a lot to be convinced, but there were terrific practical, social and emotional support benefits for both of them.

“Some days Mum just didn’t want to get out of bed, but I knew when she was interacting with someone, you forget about the pain, you forget about what is happening, for that short period”.

Maria also felt that Angelina sometimes needed someone to talk to and it wasn’t always her.

“Mum didn’t always want to talk to me, she knew, she was worried about leaving me, so she doesn’t want to talk to me about leaving me.”

It can be important sometimes for the person who is dying to have the opportunity to discuss their hopes and concerns with an impartial person such as a volunteer, nurse, or social worker, so they don’t feel like they are burdening their family.

Maria had some recommendations for those who were thinking of using the new Queanbeyan Region Palliative Care Volunteer Service.

“Think of them [palliative care volunteers] as a friend who has traveled your road before you. A friend who knows what you are going through and someone who can help guide you. So if you’re having one of these wonderful palliative care volunteer people come into your home they would become part of your support network”.

Many of us will face the death of a loved one at some stage in our lives. For carers, it can be a time of uncertainty, exhaustion and a time of increased isolation. There are also the challenges of dealing with a complex medical system and your own grief. Having access to trained, impartial, volunteer support from caring people in the community, who may have traveled a similar road to the one you are now on, can be of immeasurable assistance to carers and families.

During their time, Maria, Antonio, and Angelina were not able to access palliative care volunteer support, but with the launch of the new Queanbeyan Region Palliative Care Volunteer Service, Maria is pleased that others in her position, throughout the Region, will have the opportunity to do so in the future.

Credits:

“A story of care at end of life from the Queanbeyan Region: palliative care volunteer services”
As told to Fiona Sivyer, Project Administrator SNSWLHD Palliative Care Volunteer Services, a collaboration between Palliative Care NSW and Southern NSW Local Health District – Palliative Care Program.
All names have been changed to protect the privacy of the family. Image is AI generated.