End-of-life caring: an insider’s story

In a touching real-life read, Mycare’s Amy Stone, Platform Experience Lead, shares her family’s experience of supporting her father in the last weeks of his life.

Amy Stone’s career has seen her working in various guises in the healthcare sector for many years. She says “it’s been a privilege to walk beside people, both patients and medical professionals, during some of the most stressful and life-changing events a person can experience.”

Not long ago, Amy experienced her own life-changing event, when she lost her father to cancer. Here, she shares what they learned.

“My dad was well until he wasn’t. In late October 2016, he was admitted to Dargaville Hospital with a loss of sensation in his arms and legs. A CT scan showed a large mass in his brain, and he was transferred to Auckland City Hospital.

“Initially, his prognosis looked good. He was 61, fit and healthy. But it turned out that the tumour was a melanoma and a metastasis; in all likelihood, somewhere along the way, my father had had a skin cancer, and one of the cells had travelled to his brain.

“My dad spent four weeks in Auckland hospital; my mum spent four weeks in my spare bedroom. I’m the only one of my siblings who lives in Auckland and became the main support to Mum, who became the main caregiver for Dad. I probably spoke to my brother and sisters and extended family more in the four weeks my parents were in Auckland than in the past year or two.

“Dad went home to Dargaville in December, and life became about making memories as a family and putting support in place for him as he became more unwell. We were lucky in a way – we have a large family. This meant there was enough family support to give Mum breaks and keep Dad at home in his final weeks. Dad died in the early hours of a Monday morning in early February 2017, only three-and-half-months after I got the call to say they’d found a mass in his brain.

“Our experience wasn’t the first time we’d cared for a family member in the last stage of their life, so we were also lucky in that we knew what support was available, and how to access it. We knew to ask for a referral to Hospice and for the equipment that was needed to care for Dad at home, and where we could go for help for ourselves, both emotional and financial – namely Hospice, the Cancer Society, and WINZ for income and funeral-cost support.

 “It was this support that got us through – of family, friends, medical professionals and the various individuals involved in end-of-life care who found their way up my parents’ driveway. With that in mind, my advice for anyone caring for someone who is terminally ill is to ask for help. When my mum was tired, she struggled to be the best version of herself with Dad, so it’s as much about being kind to yourself and recognising that you can’t do it all, as it is about the person you’re caring for. If this means hiring home help, I can’t recommend it enough.

“We didn’t hire home help for Dad, but I’d previously used Mycare to hire overnight support for my daughter’s great-grandfather, who was being cared for at home by his wife. He had very high needs, and it became so important that the family members looking after him were able to get a good night’s sleep. It became a blessing for them to be able to hand over to someone else, sit down, unwind and have a cup of tea to before heading to bed.

“I remember that on the day we learned my father was terminally ill, I told him I loved him. In return, he told me to ‘be practical’. This is the same advice he gave me my whole life – and it has its merits! One of the most practical things you can do is appoint a family spokesperson to field all the questions and the offers of help, provide information on progress and be the bad guy when the family needs a day off from visitors. People will want to visit and have an opportunity to say their goodbyes, but you do not need to have a revolving door. You’re allowed to say that it’s not a good time and let people know the best times for you. 

“The most common thing I heard from people during this time was, ‘Let me know if there’s anything I can do’, and I appreciated every single one of them for offering. But it raises a conundrum: people want to help, but trying to think about the help you need when you’re in the middle of crisis is difficult. Appointing someone to coordinate and manage the ‘support crew’ reduces a lot of stress, and allows people who want to help to contribute in meaningful ways.”

Mycare’s Customer Engagement Team is here to help you find the support you need when times are tough. Simply call 09 887 9777 or email hello@mycare.co.nz.