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CarerHelp Insights: Providing care at the end of life

  • 12 December 2019
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CarerHelp Insights: Providing care at the end of life

Khang Chiem cared for his husband Benjamin who died of brain cancer. In this article, we asked Khang why it was important for him to provide care at the end of life.

Why was it important for you to be able to provide care at the end of life?

In my experience, caring is one of the purest forms of love expressed physically, emotionally and psychologically. In caring for my husband, Ben, we were able to spend more quality time together and to do things together. In the midst of the uncertainty of living with a cancer diagnosis, being a carer gave me a sense of purpose that was fulfilling and grounding.

By virtue of being his husband, I knew Ben’s values, aspirations and sense of self, which meant that I, as a carer, was able to support him to exercise his agency and to live the life that he valued; which in turn, enabled me to live the life that I valued. Now that he is not here with me physically, the memories that sustain me the most are the times during which I cared for him.

Aside from the fact that I loved him, it was important for me to continue caring for him through the illness because it gave me some degree of control over some aspects of our uncertain situation.

At that stage in my life, being a carer was my purpose. Caring for him at the end of life was a sacred and beautiful experience albeit a heartbreaking one. It was important for me to be there towards the end so that I was able to process the experience fully, which has helped me to walk towards radical acceptance of his death and absence.

What were the top things you wish you knew when you began caring?

Caring is hard and because of this, I wished I knew then how important it was to look after myself mentally, physically, psychologically, and emotionally.

It would have been helpful for me to know from the outset how to regularly practice self-compassion and mindfulness, and that socialising with caring people with whom I feel safe is so important for my mental health.

"It was important for me to be there towards the end so that I was able to process the experience fully, which has helped me to walk towards radical acceptance of his death and absence."

What practical advice can you give carers who have just started caring for a person at the end of life?

I would say to be present with your loved one and at every moment in those last few days or weeks. It is also important to trust the doctors and nurses with the medical and palliative care so that you can focus on creating memories with your loved one.

Lastly, make sure that you share with your loved one all you need to say and to forgive.

Have some questions you want answered? Send it to us at carerhelp@flinders.edu.au

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