Sarah’s Health Notes: Thoughts on my brother’s last illness
When the father of a dear friend died some years back, we talked about the words we use – ‘death’, ‘dying’, ‘passing on’ and so on - and how they made us feel. Which was at best passive, but more a sense of being disconnected – totally cut off from people who had been with us all our lives.
I talked to others including the father of a small boy killed in a coach crash far from home. To help his mourning sister, they designated a particular star as his so she could look up on clear nights and see her brother’s star sparkling. The notion that the people we love go star travelling still comforts me – fanciful perhaps but a way of keeping some connection with the person who’s died and their place in the universe.
My younger brother Simon (above aged 16 months, with me nearly three) died very recently after months of pain and suffering from cancer and Parkinson’s disease with other complications. He was at home and we watched as this intensely strong vibrant person declined. It was very distressing, and increasingly took over our minds every hour of the day and often night. Now his children – they’re grown ups in their thirties but he always called them ‘the kids’ – and I are in that strange state swinging between relief that his suffering has ended and unruly emotions of all kinds, laced with deep tiredness both in our bodies and minds.
Realising that these chaotic feelings are frequent with everyone in our situation is helping me come to terms with them and accept them as a natural part of the process of bereavement and grief.
The charity Cruse Bereavement Care (cruse.org.uk, free helpline 0808-808 1677) has a section called Feelings when someone dies, which I identified with; they include shock, numbness and disbelief (very common but it seems counter-intuitive when you’ve known the inevitable outcome for over two years), guilt that I couldn't do more to salve the pain or his fear of dying, anger at things that weren’t done well (in my view) over the immediate past and before that, and dwelling on the negative things in the weeks leading up to his death.
Little things have helped such as going through old photos, like the one above, and seeing pictures throughout his life where he was well and doing what he loved – invariably outdoors and with his family and horses. Also fixing in my mind an image of him last autumn when he had a period of being in good shape. I see him in his plaid shirt and pink cord trousers (he had five pairs) making me coffee and laying out cakes from the village shop.
I also remember moments of great sweetness sitting by Simon’s bed, which was positioned by the garden door. One time I told him I was watching a blackbird on the lawn and he said it sometimes came in the door. The day he died a close friend told me to ‘keep hold of the blackbird’. Which I do.
Our family’s experience made me realise how bitterly sad the process must be for people who can’t visit family members dying in hospital, talk to them and hold their hands. Psychologist Sarah Lewis wrote to me recently offering suggestions for people in this situation. ‘The most important thing,’ she writes, ‘is to keep switching your attention away from what you can’t do to what you can do to help [the person and those around them].’
• Offer emotional care. Send cards expressing how much the person has meant to you, what you are grateful to them for and say you have let go of any grudges or resentments you were holding. [I would add to tell them you love them.] If you can, phone them and follow their lead about whether they want to laugh or cry that particular day. If they can get online, hold precious photos up to the screen and reminisce about good times.
• Be grateful to the people who are caring for them, whether it’s professionals or other family members. Resist the urge to correct them on how they should be doing it and instead tell them how much you appreciate them.
• You can’t make them better but you may be able to help them live better until the end. Send their favourite foodie treat (or drink – some hospices are renowned for their cocktail hour), a pretty nightie or fab PJs, a picture or photo that means something to them. If there is time, you could make a memory book. [My nephew stuck photos and children’s coloured drawings up on pin boards his father could see from his bed and it cheered everyone).
• Look after yourself and other family members. You may not be able to offer a physical shoulder to cry on or hand to hold but you can ‘keep in touch’ by phone or screen. Don't forget you may need to cry too. [I howled at close friends a few times – it wasn't so much the Big Thing of my brother dying but the smaller pains and ills he endured that affected me most.]
• Make the funeral as beautiful as possible. We are all limited on numbers at the moment but you can make it digitally available worldwide. [My niece and nephew used Obitus.com, which worked pretty well. Also, we are planning a huge thanksgiving celebration of his life when lockdown is over.]
• Lastly, know that you did everything you could, as well as you could. It may not feel enough but it was the best you could do in the circumstances. ‘So go easy on yourself, forgive yourself and others,’ concludes Sarah Lewis.
Two more things: Marie Curie, who organised nurses at night for my brother, run a bereavement counselling service; find details here.
Secondly, I bulk buy the book Grief Works: Stories of Life, Death and Surviving by psychotherapist Julia Samuel, who specialises in bereavement. In this infinitely compassionate guide, Julia takes readers by the hand through sections about our different relationships to the person who’s died: partner, parent, sibling, child as well as facing your own death. As she says, ‘we must find a way of living with a reality that we don’t want to be true’. I believe that will come in time from acknowledging and absorbing what’s happened and finding peace with it.
