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The most intimate thing I’ve done in my life: Kylie’s story

It was important to Kylie, her husband Bernard, and their children that he have a home death. Photo: Pippa Wischer.

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.


Comments

  • You did very well. It's not easy doing what you and your children have done, I know because I went through the same thing with my parents. Palliative care people are angels, they give you support, understanding and compassion. I looked after my mother for just under two years from diagnosis to death. After her death I decided to do a PCA course and got a job in an aged care facility now looking after other people's loved ones. Death is a scary thing unless you are part of it like you and your children were. I'm sure your husband appreciated everything you did for him. Keep talking about it and it will help you. My father has been gone 16 years and mum 5 years and I talk to them everyday and say good night every night. Sending you and your family love and hugs.

    - Robyn
  • This is my best friend Kylie.. A beautiful person who is kind and compassionate. A lovely soul who has a warming smile and kind heart. Kylie is doing a great job alone with her family and I know how hard it is for her being alone without Bernie, we all miss him, he too had a beautiful heart.. Thank you my friend for sharing your story.

    - Bridget
  • Well said!! You are an amazing family to have given such a gift to a great husband and dad! From a retired palliative care nurse...

    - Lindy Anderson
  • A very beautiful story. Thank you

    - Faye
  • Wow! What a fantastic attitude. My son has just had a testicle removed from cancer and given the all clear.....he's 19. Very moving!

    - Margaret
  • Beautiful, Kylie.

    - Chris
  • You are a strong and courageous woman, Kylie. Such a beautiful family xx

    - Liesa
  • Beautiful, how enormously proud he would be of you for allowing him to die the way he wanted to❤️

    - Mary
  • Truly inspirational

    - Kathy whitehead
  • My very loyal and brave daughter, inspiration to her family

    - Wendy Skinner
  • So proud of you Kyles sharing your's and Berns story. I'm sure it will give courage to many other families making the same decision. Xx

    - Tina
  • Thank you for telling your story Kylie. Our mum (Shirley) died at home, with awesome palliative care to support dad through her time with cancer. So intimate and the emotions so raw. We are so glad she died in her home while all of her family where there. Perhaps we are lucky to have had this opportunity at the end of her life. You are so right - we need more information and support around how to give our loved ones "best death".

    - Susan Daly
  • Beautiful Man, and beautiful family. Inspiration to all, Kylie. Thank you for sharing your story. Xx

    - Andrea
  • Kylie Bern would be very proud of you as we at PFM are of you you are a beautiful lady your story bought tears to my eyes I still think of Bern when I see Peter he was a true gentleman well done Kylie Nina

    - Nina Smith
  • We will never forget the love, care and comfort you provided Bernard throughout his life and death. You continue to be a strong and amazing mother that i admire and respect. You have my support and love forever.

    - Pete
  • Amazing Kylie. So brave. A tribute to you & Bern. Love to you & your kids

    - Edwina
  • What a courageous loving wife you are. As parents we try to protect our children from all the bad things in life, but unfortunately life isn't always like that. I applaude you for your honesty. Stay strong and just love your 3 gorgeous children, your angle is protecting you from above.

    - Alison Smith
  • Kylie you are an inspiration. Not only to people who are dealing with palliative care, but to Mums in general. Honesty and integrity. Thankyou so very much for sharing your story in public.

    - Nicole
  • Much love Kylie and thanks for sharing your beautiful heart wrenching story.

    - Sue Manton
  • Thank you for sharing your powerful and inspiring story. We need more conversations and openness about death and what would be a best death, just like we have for births as you say.

    - Jan
  • I think you are both of great Inspiration, you both have an amazing way to see and deal with things in a much more positive way. To also still carry on the best way you could with your children, friends and family. Day to day activities etc. I too did this with and for my father It was the most gratifying experience. That transformed me into a different person. Plus finding my true self plus passion that I want to chase and become. I am studying to become a Pallative Care worker or Pastrol Care Worker. From my journey I found what I am truly good at.

    - Christina
  • Thank you for sharing your beautiful story.

    - Corinna
  • Caroline, thank you for sharing this story of Kylie. My darling husband recently went to heaven after the return of a cancer of a rare and aggressive type. Having just fulfilled my husband's wish to be in our own home, with our six adult children and me caring for him, I can say how important it was for us all. He had his family around him all the time, wonderfully supported by the Palliative care doctor and community nurses. A bed with a pressure mattress was an essential provision from Hospice@homeamong other equipment provided. That was a boon for Nick to be able to have mattress adjust to his movement. By being home, the whole effort of going to and fro from hospital was eliminated and Nick could be with family at all times or rest as he wanted. It is the care by the family that is unique and enabled conversations or just being with him. Such a privilege.

    - Robyn Nandan

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