‘Hope and lightness can be found in the bleakest of circumstances’
She nursed her sick daughter right until the end – then had to watch as her husband chose to end his life in a Swiss clinic. Debbie Binner examines how the way someone dies affects those left behind
Death has been an intimate part of my life for the past six years. First my youngest daughter Chloe succumbed to a highly aggressive bone cancer. Diagnosed at 15, she died a few weeks after her 18th birthday. Then last year, and less than two years after my daughter’s death, I held my husband Simon’s hand for the last time as he chose an assisted death in a Swiss clinic. He preferred that to the ravages of a very fast-moving motor neurone disease. On bad days, I feel punch drunk with grief. The gnawing pain of losing two of the people I loved most in the world leaves me, literally, unable to get up off the floor. Good days, and there are some, mean a faint but growing belief that the only way to honour two such beautiful souls is to live the best life I can.
My daughter and husband had very different deaths, and the circumstances have affected deeply how I have been able to grieve my losses. I am convinced that a good death is important for allowing loved ones who are left behind to have a good life.
People instinctively know there is nothing worse than losing a child. It is out of sequence and there are so many lost years. But out of all of the misery, I was so grateful that Chloe had a good death – if there is such a thing for an 18-year-old.
I was furious with the cancer and with the lack of treatment, but hugely grateful for the NHS, which picked our family up and wrapped us in love, compassion and round-the-clock care. Chloe died peacefully at home, surrounded by family – including her golden retriever, Ralph – and, most importantly, there was no pain.
My husband’s death, which was the subject of an award-winning BBC documentary Simon’s Choice, couldn’t have been more different. Having been in robust health – Simon was proud that at the age of 56 he had only had two sick days in his life – we’d assumed we had many years ahead to rebuild our life after losing Chloe.
But it wasn’t to be, and our plans ended for ever in January 2015. Complaints from friends that Simon sounded drunk led to a visit to the GP. A diagnosis of motor neurone disease was the worst news.
They estimated he had two years left. They were wrong. It took him down fast. Within three months he couldn’t speak. Regular choking episodes followed. He lost the use of his hands and then legs. In six months he couldn’t walk without a frame. He cried often. Such a big, brave, dignified man, Simon was ripped apart.
He was adamant from the start that the ‘end story of motor neurone
[continued from previous page] disease is not for me’. He warned that he wouldn’t hang around and would take matters into his own hands. He was clear he wanted an assisted death.
I hated the idea. I loved my husband dearly and wanted him around for as long as possible. I argued, pleaded and begged him to let his family and huge circle of friends take care of him. I even threatened to refuse to go with him to Switzerland. It was an empty threat; I think he knew that.
So, in October 2015, Simon got his wish. With three friends and his sister, Liz, we flew to the Eternal Spirit Clinic in Basel for Simon’s final journey to end his life.
The clinic was fine. Not luxurious, but fine. We gathered around the bed. I could feel my body shaking from head to foot. Simon released the infusion and that was it. He had gone.
We went home stunned, traumatised and confused by the events. There was no warm NHS to pick us up and look after us. We had, after all, left the system. I am lucky I have wonderful family and friends, but the lack of aftercare makes this type of death even more difficult.
It just feels like a giant full stop. I can now sit with the memory of my daughter’s gentle, yet terribly untimely, death. But Simon’s death feels way more disturbing. I’m still unsure what to do with the memories. It’s just so outside most people’s experience. The medical profession is legally prevented from speaking about a death like this, which seems an incredibly unhelpful, old-fashioned and unkind way to treat those left behind. I hope one day that will change.
And, for me, life goes on in a different and stranger form. Simon has been gone a year; Chloe more than three and a half years. Yet they remain so much a part of my life. I am so grateful to have had them and loved them so much. A friend sent me a note, which I have pinned above my bed: ‘Be strong and don’t give up. You will make it through this time and find joy in life again.’ As I look at the faces of my other daughter, and my two little grandchildren, I can finally see that might be true. Maybe not now, but sometime soon. I hope it helps other people to know that hope and lightness can be found in the bleakest of circumstances.
‘I am convinced that a good death is important for allowing loved ones to live a good life’