THE moment my father died, I felt only relief. I was only 10 years old but remember the feeling with remarkable clarity. In truth, I had lost him weeks beforehand and the body who occupied my parents’ bedroom had not been living, merely existing. I would grieve later but, in that moment, I was immediately comforted by the fact I no longer had to pretend to recognise the man who bore no resemblance to my dad.
This month saw the death of right to die campaigner Alison Napier. In her final weeks, she voiced concern that her illness – a vicious returning cancer, which had spread to her lungs and brain – would make her unrecognisable to the people she loved. “I do not want people that I care about seeing someone that I am not,” she said. “If that could be prevented, that would be such a relief, both for the person who is dying and the people who are left behind.”
Her words resonated with me because, like many of us, I live with the weight of having witnessed the death of loved ones. Those experiences never leave you, how could they? You’re told to remember people at their best but, when you have spent months or weeks keeping vigil at the bedside of a loved one overcome by the disease that will kill them, it is hard to separate relished photo album memories from the trauma that accompanies the rapid deterioration of someone you love.
Last year, in the wake of a terminal diagnosis, my grandmother moved into a hospice. Every week I travelled eight hours on the train to visit her and, when I arrived, she rolled her eyes at me as if I was making a fuss over nothing. We spent hours talking and, though each encounter was underpinned by a quiet sadness knowing those moments were numbered, that time was cherished by us both.
But, as the weeks went on, despite an incredible palliative care team, it became harder to conceal her symptoms. The bad days outnumbered the good and she began resisting sleep, afraid that she would not wake up. Her impending death hung over us every time we spoke, wondering if we were uttering our last words to each other. She was scared, not of death, but of not being able to control her final moments.
The importance of giving agency to the terminally ill does not need explained to anyone who has experienced death in this way. My experience will be familiar to many who have been forced to watch a loved one’s suffering unnecessarily dragged out.
Death, though never easy to process, is inevitable – not being able to choose how and when to say goodbye does not have to be. Relief should not be interlaced with grief.
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