Living lifes every moment: sharing stories of Illawarra palliative care

You could be waiting at the check-out next to someone getting close to death, as around 600 people are on the Illawarra palliative care register.

Over the past 30 years Australian palliative medicine has evolved to become a massive network of helping hands to support people on their final journey.

Health professionals find the biggest misconception around needing palliative care is it means youre stepping into a grave.

Desiree Savage spoke to these Illawarra locals who attest, dying doesnt have to be a sad and painful affair.

In February Jeanette Housler felt like a tonne of bricks came crashing down on her.

She was terrified after learning her husband of 43 years, Peter, would have limited time left on this earth.

The grandfather to 11 discovered he had pancreatic cancer and it came as a shock because the energetic 68-year-old had never had a day of sickness in his life.

The Albion Park couple did everything together since they married in 1974 and the thought of life without him was incomprehensible to Jeanette.

Doctors tried to fix the problem with mass surgery, removing Peters spleen, adrenal gland, several lymph nodes and two-thirds of his pancreas.

But the aggressive beast clenched to his body and moved to invade both of his lungs, not letting go.

The clock started ticking with six months to a year left for Peter to complete his bucket list and enjoy time with his family.

This time last year we were on a seven-and-a-half month trip around Australia in the caravan and then this year, its just, [he was] so fit, climbing up mountains, Jeanette recalled.

The couple were regulars at Lake Conjola where theyd often enjoy happy hour with friends theyd made over the years.

Peter, a former firefighter and railway worker, had also been a keen cyclist clocking up 50 kilometers a week as well as touring around on his road bike, a 900cc Yamaha.

But hes too weak for that now.

The surgery flattened Peter and left him in hospital for eight weeks and in an awful amount of pain.

Jeanette felt like she wasnt being told the truth about how long he had left.

Its extremely emotional, you just dont know what to think, she said. Youre in a void.

Both were scared to ask for help and terrified of mentioning the p word.

For me to have to go to palliative care, you start to think this is the end, Peter said.

I was so afraid. You feel very lonely and isolated you feel like youre sitting in a dark room by yourself.

Jeanette has her man back at home now, their lounge-room armchairs side by side so they can hold hands watching TV once again. He has good days and bad days.

Chemotherapy and methadone are key in helping Peter live well and achieve his bucket list.

Theyre also incredibly thankful for the on call medical staff who can reach out to help in the middle of the night if needed.

The couple has planned to return to Lake Conjola, any excuse for a happy hour according to Peter.

Hed also like to jump on his motorbike again.

But the event Jeanette is most looking forward to is getting her beloved through to next Valentines Day.

When youre in this situation you need to have some sort of goal in front of you, somewhere where you can see that youre going to go, Peter said.

For us going to be able to get to [Lake] Conjola, have another visit, maybe another once or twice, gives us something to look forward to.

Being a palliative care nurse is the best job Ally Barnaba has ever had. The 30-year-old has been in the role just nine months but the passion for her job clearly shows.

I dont think Ive ever felt so fulfilled as a nurse than I have been with palliative care, she said.

Its like every day you go home and you honestly can say Ive changed someones life. Its such a beautiful thing to be so proud of what you do.

Ally is one of the youngest in the Wollongong team but said its not all about sadness, and is full of great moments with extraordinary people.

To say that you love your job [people] think its quite a morbid discussion and people arent willing to talk about death, she said.

Ally is one of the community nurses who are like the eyes and ears for the specialists, there for patients when they need or just to check theyre doing okay.

The majority of her patients are elderly but she also meets children, young mums and fathers along with their families and carers.

No matter what age they are these people are so loved and people dont want them to go, so its difficult, she said.

One of the obstacles for her is remembering these people cant be spared from death but that feeling is quickly overtaken by pride in knowing she can ensure they have the best quality of life for their time left.

In western society we dont deal with death too well, I think it is a taboo subject and people dont really like to talk about it, Ally said.

We dont look at death and celebrate it like other cultures do.

While she says other nurses strive to work in areas like intensive care, for Ally working with people on their final life journey was something shed always wanted to do and feels blessed to be where she is.

Recently she was shopping and bumped into a mother whose late son she had given support to.

She gave us the biggest cuddle, she was crying and said you guys just helped us through that period so much and she was so grateful for the service and grateful for us, Ally said.

For her to say her son loved us coming in and we were like a ray of sunshine to someone that is looking down the barrel of dying, that in itself just makes this job so worth it.

One of the most uplifting moments of Kay Copes life was holding her Aunt Jennys hand as she slipped away.

Kay had spent two years helping her lifelong friend through the ups and downs of her illness, lung cancer.

She was a guardian angel to look out for her and fill in the blanks when Jenny was putting on a brave face for the doctors and nurses.

I was sitting by her bed knowing it was getting pretty close, Kay said.

When Jennys son arrived Kay got up to go for a walk but intuition told her not to go. She was grateful she stayed and so grateful to be at Jennys side.

I just held her hand and I talked to her and then she just slipped away. And I thought thank you I was able to be there and honour that, because she didnt want to be alone when she died, Kay said.

That beautiful moment inspired the allied health professional to change her own path and take a job in palliative care. She wanted to become an advocate for others travelling to their final destination.

Once upon a time people just got very ill and very sick, and eventually they died, Kay said.

She believes palliative care is not a death sentence but rather support for people reaching towards death, and certainly not the end of their story.

Kay described palliative care as a holistic service - incorporating a range of staff from social workers, to physiotherapists, GPs and nurses - who find out the needs of a patient and how to manage their symptoms.

Its talking to the person and finding out where their heads at and their soul is at, she said.

People think that palliative care is having one foot in the grave, that theyre about to die, and they dont want to accept palliative care because they think its an admission that people have given up on them.

Eventually Kay will need to walk beside her mother as she did with Jenny who is now living with breast cancer.

Kay admits sadness does come with the journey but she is grateful her mother understands its okay to ask for help rather than give up.

I know when my mum goes its going to be devastating, shes so much a part of my life, she said.

But we talk about death quite a lot and whats important to her.

When the time comes, it will be a matter of honouring what she wanted in her life ... knowing that weve given [her] the best of us.

Its been more than two years since Mikala Ramsays mother Barbara passed away from lung cancer and shes only now coming to terms with her grief.

I think because a lot of the grief does happen during when she was sick, and after she passed away it was kind of like an unreal feeling so I just kept going on with life, the 24-year-old said.

Denial was the first emotion she felt when Barbara told the family of her diagnosis, followed by every other emotion, and never at appropriate times did the right emotion come along.

Mikala isnt sure whether her mother kept her illness a secret, choosing only to tell her when the end was near.

I didnt see her for a week or two ... and then when I did see her she was all of a sudden in a chair and had the oxygen tank, she said.

That became the reailty for me and my sister to step in and look after her that was really confronting.

Mikala is incredibly thankful to the palliative care team who stepped in when Barbara finally accepted she needed help.

Even though it was difficult watching her mother slip away she said the pressure was lifted so they could enjoy being in each others company.

It made it less about the sickness and more about spending our time togehter properly, not having to focus on all the yukky ins and outs of the disease itself , Mikala said.

If anyone knows a palliative care nurse or ever gets to speak to them they should really thank them.

They do the most amazing job at making someones final days comfortable and not only that person but a whole family every day they know theyre going to lose someone but they keep on going.