Everyone has their own special way of grieving. Mine has turned my life upside down.
On November 26, 2014, two days after my father’s funeral, I sent a somewhat unhinged email to the Oobserver saying there was a piece “I want (need) to write… My very dear and beloved father died two weeks ago, after a long and painful time suffering from dementia. He had been in gradual decline for over a decade but was taken to hospital in February, and although things seemed to be going off a cliff: his decline was catastrophic and when he came out a few weeks later he was emaciated to to the point of starvation. motionless, bedridden, unable to string words together, barely able to recognize anyone.
During the five weeks my father was in the hospital, we were barely allowed to see him due to an outbreak of norovirus in his ward. No one to care for him, to feed him, to hold his hand, to stroke his silver hair, to say his name, to smile, to tell him they loved him, to keep him tethered to the world he had lived in so long and so well. He must have felt bewildered, sad and abandoned. He came home a ghost and his last nine months were a period of dying in slow motion.
All these years later, it still hurts my heart to think about it. I was planning, I wrote in the email, to start a campaign that would simply insist that caregivers of people with dementia have the same rights as parents of sick children to accompany them to the hospital. Of course I see now that I wanted to save my father, who was beyond saving; I wanted him to forgive me (because I couldn’t find the way to forgive myself).
The Observer has a long and honorable campaigning tradition, including the abolition of the death penalty and – following psychologist John Bowlby’s research into ‘separation anxiety’ – the campaign for unlimited visits of children by their parents in hospital. Under his humane agenda, words can become actions. Many thousands of readers responded generously to the piece in the newspaper to behave, saying: this happened to my wife, husband, parent, loved one too. My father’s name was John. The campaign I created with my friend, the irrepressible Julia Jones, is Jan’s Campaign.
We thought it would be a short affair; After all, who could, with an ounce of compassion, disagree with our simple demand that those who are frail and cognitively impaired have the right to be accompanied by the people who know them best and love them most during the time when they need it most?
But ten years later, Julia and I are still here, now both parentless and on the front line ourselves; and so does John’s Campaign, to our occasional bewilderment and anger that it remains necessary.
It is not a charity or organization; there is no money involved, no bureaucracy, no staff (although people sometimes ask to speak to our non-existent PA). It is a movement and we are only accountable to the people whose rights we advocate. I look back on that decade and think about it in stages.
We started with the hospitals. In the first intense months we learned what we should have known anyway: there is no magic key, no door that swings open to a kinder world. Instead, there are hundreds and thousands of smaller doors, all needing a push. Gradually, as we traveled around the country pleading our case, carers, nurses, doctors, organisers, charity workers and policy makers joined us. Nurses became our ambassadors. The Observer remained our platform, hub and safe place, without which we could never have succeeded. We progressed ward by ward until every acute hospital in England had committed to the principles of the campaign.
But then there were the nursing homes, some of which regulated visits and sent family members away at will, making the word “home” bleakly ironic. Now John’s Campaign was no longer simply about the limited right of someone with dementia to be accompanied while in hospital, but about the broad and unequivocal right of everyone with a special need for guidance each setting. It’s about keeping people connected; about our belief that the state should not have the power to tear apart those who are closely united; about individuality; about the healing power of love.
Julia and I always joked about reaching the “sunny highlands” – by which we meant the successful end of the campaign. We thought we could see it in front of us, just like the Emerald City. Then came the pandemic, and everything we had laboriously and incrementally achieved was swept away like topsoil by a flood, and we witnessed separation, suffering and the violation of human rights on a massive scale.
How could we as a country allow the agency and rights of an entire group of people to be so trampled upon, while the rest of us were allowed to return to some kind of normality? Vulnerable people in care homes who could not see their loved ones for months, even up to a year; or seeing them through a window or on a screen, often a special kind of torture. Not understanding why they had been abandoned. Turning their faces to the wall (The number of deaths unrelated to Covid increased during this period; it seems like it can really break your heart). People who die alone, or family members who are only called when they are unconscious. The normalization of a bureaucratic cruelty. A gross and careless blindness to those who should be treated with the utmost care, respect and sensitivity. The guilt and helplessness of families; their fear and their unresolved trauma. Hot anger, pure sadness.
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During this period John’s Campaign was involved in what appeared to be an ongoing legal dispute with the government over its guidelines for care homes and hospitals. Our success was meager, like small shuffles forward in a vast landscape of wreckage. And even now, when that damage is so obvious, it could happen again. That’s why John’s Campaign (the indefatigable Julia Jones, to be precise) is a key participant in the Covid inquiry, and why, alongside campaign groups Rights for Residents and Care Rights UK, we’re working to get the right to a care support worker into law anchor.
The bill has been drafted, and it could be simple and quick – a clause would be inserted into the bill National Healthcare Act 2006immediately after section 242A. It would be a win-win situation, the thin end of a moral wedge, a triumph for common sense and compassion, a way to give power back to individuals who have been robbed of their power and dignity in the past, a recognition in dry and legal language. of the transforming power of love, and a way to say Never Again.
So why isn’t it happening yet? It’s the same reason, I think, that John’s Campaign is still around after ten long years. Because change is difficult and painfully slow. But time is running out. The clock is ticking for each of us, even though we may try not to hear it. We are all for the dark. If we are lucky, we will grow old and probably in turn weak and helpless, dependent on others as others have depended on us. We are at each other’s mercy – and that is essentially what John’s Campaign is about: being mortal, being human, being there.