One year ago, this paper carried a piece by me that described the prolonged, sad death of my father after his calamitous stay in hospital and that launched a campaign named after him. His story is also the story of many thousands of men and women. John’s Campaign asks that the carers of those with dementia have the same right as parents of sick children to stay with them in hospital. To have the right – and never the duty; carers often need respite – to be welcomed and recognised as part of their team of support; to feed them, keep them mobile, talk to them, read to them, hold their hand, comb their hair, meet their gaze, tend to them, keep them safe, keep them connected to the world. To keep their spirit alive as well as their body.
The great Victorian poet Gerard Manley Hopkins writes in one of his Sonnets of Desolation: “O the mind, mind has mountains; cliffs of fall/ Frightful, sheer, no-man-fathomed”. The precariousness, the mysteriousness, of the human mind is made even more so with frailty and dementia. People in vulnerable old age can easily become lost. In hospital wards up and down the country you see them, the lost ones.
If we are lucky, we grow old. If we are unlucky, we enter this world of self-loss where words fail and meanings are dismantled. John’s Campaign, begun with my steadfast and unstoppable co-campaigner, Julia Jones, seeks to bring a commonsense compassion into the treatment of those who are acutely vulnerable. Doctors and nurses are hard-working, kind, often heroic, but the system can be grindingly bureaucratic and not designed to remember that patients are also people, human and precious.
Now it is our birthday. John’s Campaign is one year old. A year is very short and it is also long: an arduous journey that has taken Julia and me from the conversation we had in her kitchen, up and down the country by plane and car and train, into hospitals and offices and lecture theatres and TV and radio studios. On Twitter, on Facebook, by email and letter, by phone, face to face, we’ve heard other people’s stories of distress and of rescue, so many stories, so much grief and so much kindness, and have come to this moment, now, when I can look back and see how far we’ve come. And we’ve come a long way. We are no longer two ragged, middle-aged women crying in the kitchen; we are a tiny part of a great movement for change.
Today, 200 hospitals in the UK have signed up to the campaign and opened their doors to carers (on this paper’s website, there is a page dedicated to the campaign that carries that growing list). Of course, 200 is not enough: a few months ago, when we passed the 100 mark, I was interviewed for a radio station and the interviewer, rather than congratulating me as I’d been complacently expecting, asked incredulously: “Why on earth isn’t every hospital doing it?” To which I can only say: “Quite. Why?”
I suppose the answer is that change, even good and optimistic change, is always hard. It is difficult for hospitals, long used to fixed visiting hours, to open their doors and let life flood in. It is difficult for carers not to feel intimidated and often disempowered by a hierarchical world of experts.
One night two weeks ago, I found myself in a hospital near Calais, with a close elderly relative who had collapsed and was unconscious. They admitted her and told me, very firmly, that I had to leave. It is oddly hard to be disobedient. Here I was, the co-founder of a campaign that explicitly argues for the right of family and carers to stay with vulnerable loved ones, and it took all my courage to insist, in ungrammatical French, to a nurse who was looking at me as though I was unhinged, that I wasn’t going to leave whatever the rules. It felt like a battle and I was tired, scared and didn’t want to be in that battle.
No one wants to be in that battle. I cannot imagine what it is like to be the sole carer of someone, 24 hours of the day, and every day of the year. I know many carers feel trapped and isolated and that many good lives have sad ends, times of wreckage and loss. I know that the courage and sheer decency of hundreds of men and women – nurses, doctors, carers, politicians, campaigners – have bowled me over during this past year. I know that a sense of collective endeavour can create a feeling of kinship and community that might not make the burden less, but can make it more possible to bear. A journey is easier to walk when you don’t walk it alone.
One of the terms that I have learned to use is cost-free. (Our campaign is cost-free; its benefits are incalculable.) I’ve been thinking a great deal about cost – not the financial cost, though I understand money is important, but the psychological and emotional cost of dementia, which carries in its mighty wake so much loneliness and loss, so much grief, fear and humiliation. This is about all of us: our loved ones, ourselves perhaps.
In his book Being Mortal, Atul Gawande writes about the medicalisation of the end of life; people who should be allowed to leave are kept here, in a state of lingering, in limbo. Death is not a failure, it is the one sure thing. But to allow lives to draw to their close in loneliness and fear – that is a failure.
So we light a candle on our birthday and say thank you to all who have joined us, and whom we have joined, along the way. And we continue.
