My mum died at home, as she wished, almost exactly two years after her cancer diagnosis. She said her obituary should read ‘Died unwashed but in clean sheets’, and that people could wear any colour they liked to the funeral, so long as it was red.
My sister and I and my husband were with her when she died. Mum’s youngest sister, over from the US, was having a shower at our home which was next door but one; Lillian, a dear family friend and trained nurse who had come over from South Africa to be with us, was in the bath. I’d been with my grandfather when he died and recognised what was happening when mum’s breathing changed. Mum’s end was peaceful and gentle. And she had been unconscious for 24 hours, so there were no last words, no goodbye from her to us. My sister was devastated; I was so glad to have been there at the moment of mum’s going.
My sister and I had already chosen and contacted the undertakers, so we knew what we needed to do after the death. In keeping with Lillian’s Khosa tradition, we kept mum home for 12 hours after she died. We washed and dressed her ourselves (my sister hid in the closet during the dressing, afraid we were going to break mum’s arm putting her blouse on). Sun, rain, sun, hail, a rainbow, wind and more sun chased each other across the sky. We took turns spending time alone with mum, and gathering together in her room, singing, telling stories, being silent, crying, laughing…
For Lillian it was very important that mum not be left alone at any point, so she ate her lunch and dinner in mum’s room while we ate downstairs. As I was leaving mum’s room, having brought Lillian her lunch on a tray, I heard her address mum: ‘Annejet, Edie’s just brought me some lunch and I’m going to sit here with you and eat it.’ She was so respectful and loving, and grieving, too, with us. Two family friends came to see mum laid out and say their goodbyes. When the undertakers came at 10pm, it was pouring with rain. I’m not sure how we would have managed without Lillian those last ten days, although we would have found a way. Lillian was able to get mum to take fluids, which she wouldn’t for us, and mum let Lillian give her a bed bath, something else she hadn’t let us, her daughters, do for her.
The local GP and the district nurses were fantastic – caring, gentle, supportive – except for one pair of nurses who only came once, thankfully, on mum’s last night when she was unconscious; they were loud and insensitive.
Mum’s last night was the hardest, not just because of the brash nurses, but because we could hear mum’s laboured, harsh, loud breathing throughout the small house, because we knew we’d finally entered the beginning of the end. The next morning her breathing was gentler. Lillian said she thought mum would die during the day. My sister and my husband and I went into mum’s room and sat with her, and mum died about half an hour later.
While 70% of us want to die at home, currently 50% of us die in hospital, and fewer children than adults die at home. Factors to be taken into account include severity and manageability of symptoms, support from family and friends, and the availability of community services. 40% of those who die in hospital don’t need hospital care. According to the law, a person can refuse hospital care and discharge themselves to die at home. Government and national end-of- life strategies are trying to meet patient preference and increase the number of home deaths. In February 2015 a review of choice in end-of- life care proposed that by 2020 all patients would be offered the choice of where to die, and set out the actions needed to deliver this.
I know home deaths aren’t for everyone even when it they are possible, nor is keeping the body at home, washing and dressing it, but it worked for us. It was what mum wanted, what we wanted, and we did it – not that it was easy; in fact it’s the hardest thing I’ve ever done. It contributed in a positive way, I believe, to our grieving. And we were fortunate: we had fantastic support from Lillian, from the local care team, from our GP, all of whom made it possible for mum to die as she had wished, at home, ‘unwashed but in clean sheets’.