The most intimate thing I’ve done in my life: Kylie’s story
Kylie’s husband Bernard was diagnosed with testicular cancer at 19 and given the all clear after treatment. After the cancer reappeared Kylie cared for Bernard, supporting his wish to die at home. Kylie told her story to Pippa Wischer.
Bernard and I were married for 20 years. We were still going to oncology checkups when we adopted our first child Harry. At that stage we were given the all clear, but in 2011 it came as a huge shock to find that Bernard had an enormous mass in his abdomen. The cancer had transformed into a very rare, horrible thing. We had many major surgeries in Melbourne.
I couldn’t tell you how many new diagnoses we had. It was awful.
I hated seeing Bernard so sick; flying to Melbourne by air ambulance, zooming down the highway in ambulances, very traumatic. He was, “It will be right. Get it out, and if I’m paralysed, I’m paralysed.” He was a hard worker, but his family was his passion. Big spirit. Big heart.
Thank god for palliative care. They were amazing. We had everything in place well before Bern was actively dying and we made sure his symptoms were well managed. He had syringe drivers and I was trained to give him his meds. We had a perfect relationship with everyone from palliative care. They took care of everything, not to mention the emotional support. I’ll never forget the genuine compassion they held for our family. They were locals too, so it felt like they were our medical family, and they had our best interests at heart. It was a team effort and we couldn’t have done it without them.
“I know it’s hard. If you need to go, you go. Don’t wait.”
It was really important to Bernard and me, and to our children, to have a home death. We were open to plan B if he became stressed, or if it upset the children; Harry (15), Ruby (13), and Charlie (7), who’ve grown up with this. They were part of it and I couldn’t lie to my kids. So they were involved from day one and when it was time, we brought the bed into the lounge room because I said I want people to continue to be around him; school work, homework, visitors, TV… that’s how it’s going to be. He’s going to be part of this. This is a part of life. It’s just a natural process for us.
We talked about everything. He wrote his own eulogy. We were comfortable talking about every aspect of his end of life, even though it broke our hearts. The week before he died, I said, “I know it’s hard. If you need to go, you go. Don’t wait.” As hard as it might have been, we’ve got no regrets. Any other way wouldn’t have been right for our family.
He was in my arms when he died, on a sunny day, in his house that we built. He was waiting for the children to go to school before he started. He was looking into my eyes and we lay down. He took his two last breaths and he died in my arms. It was very quick. He’d said his goodbyes, said “I love you”. It was an intense connection. It was a very powerful moment. When the kids came home, all of us sat around the bed, cried, and said what we needed to say. We wouldn’t have been able to achieve that without palliative care and that would have broken Bern’s heart.
Harry thanked me for being honest throughout Bern’s illness. He told me he didn’t know how he’d have trusted anybody if I hadn’t have been honest with him about it. And Bern was honest with them too. He’d call them down and ask them if there was anything they wanted to talk about. “I am going to die. You’ll be right. I’m proud of you, and will love you always.”
I feel like there’s lots of information about giving birth, but where’s the community information about giving Bernard his best death? This is the most intimate think I’ve done in my life. To be there in the arms of my soul mate, my everything, and to be able to hold each other and say “Go with it sweetheart. I’m here.” Nothing will ever be as intimate as that.
We were very lucky to achieve a peaceful end of life experience at home, but I wouldn’t wish it on my worst enemy. The hardest thing is living without him. I miss every single thing. Just everything. Not being able to talk to him, ask for advice, or look after him anymore. I loved looking after him. What I really need to do is talk about it. The kids and I talk about him every day, and that keeps him alive for us.
Kylie’s story was originally published in Carers in the Grampians.
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