“When Australia opened its borders for the first time in almost two years post-Covid lockdowns, we joined the mass exodus to visit family and friends we had sorely missed."

“My brother-in-law Vernon hadn’t been 100 per cent since Christmas 2021.  We thought he had a stomach virus since Xmas and wasn’t looking too well, so we decided to visit him as soon as we could in March.

"We knew something was amiss when we first saw him, as his hulking 6’4” frame had withered away. It turns out that he had been diagnosed with Stage 4 esophageal cancer. Later that evening after a radiotherapy session, we noticed he could barely walk. It was then we realised how bad things were.”

Before returning to Australia, Alison and her husband put in place various care options for him at home, especially given he was on his own. It was then they started to feel guilty for living so far away and not being able to support him better.

“Vernon had to go into hospital for day surgery and we got a call from the hospital that something had gone wrong in the operation and were told he had 24 hours. This happened several times and further complicated the situation of being so far away. It was then I sought  the help of Violet.”

Reaching out for support

Violet Guide Tessa ended up providing support to both Alison and her husband Kieron as they struggled with guilt, frustration and anguish over the situation and with the speed at which the illness took place.

“Vernon refused to accept that he was dying. He didn’t have a will and he had no idea as to what his end of life wanted to look like."

“He knew he was very ill but was hoping that a miracle cure was coming his way. So he refused to make a will or share his wishes and would change the subject and talk about football. Initially, he even refused to sign the forms regarding hospice help."

Having someone impartial who has lived experience like Tessa can provide an excellent sounding board to help a carer gain clarity in a highly-charged and emotional situation. 

Acceptance is key

“A lot of carers are in the moment geographically and emotionally and Alison and Kieron were limited as to what they could do. Their previous experience with death had them wanting to be with someone when they die, so until they were able to return, it was about providing practical advice given the limitations,” said Violet Guide Tessa.

“They got to a point where they accepted that Vernon had chosen an almost reclusive lifestyle. They had been walking on eggshells not wanting to upset him, but were also realising that things were going to get even more difficult. So it was about ensuring that his privacy was respected as they assisted him as best they could.”

Alison and her husband had plans to go in August and spend a month with Vernon, just before they received a call towards the end of July that he wasn’t answering his phone. Their daughter, who was over in the UK, raised the alarm. He had been rushed into the local hospital and they hadn’t been informed.

“Vernon was in hospital for a week before a hospital bed was set up in his house, with nurses coming in twice a day and occasionally staying overnight. He wanted to die at home and thankfully we were with him when he passed peacefully. I hope he knew we were there.”

“Vernon was only 59 when he died. It makes you realise that you don’t know how much time you have left and how important it is to make the most of life.”

Ways to provide support

Tessa’s advice on caring for a loved one with a life-limiting illness.

• Communicate with the person who is ill and ensure that they are on the same page around needs and wishes. Learn what matters most to them.
• Remember to enjoy the person and not make the only topic their illness.
• Get high quality care in place. Get references so you get a good sense of who you are hiring. 
• There may be conflict management and you may need to sort it out in person. If you can’t be present, find a local advocate or someone you trust.
• People need to get as much medical information as possible. 
• Get a will in place. 
• As it gets closer to the end it is not your job to do things like laundry and vacuuming. It’s much more important to be with them. It could be getting photographs out, telling stories - not flurrying around. Sometimes we just need permission to not do anything. Here is your permission slip.

If you think the support of a Violet Guide might help you or someone you know, click here to fill out an enquiry form or call 1800 846 538. Violet is a national not-for-profit and all our services are free.