The Night is Dark and I am Far from Home by Julia Jones
My friend Nicci Gerrard wrote a characteristically clear and compassionate article about care homes in last Sunday’s Observer newspaper. Here’s the sub-editor’s heading “Care homes can be lonely and cruel places. But they can also be inspiring and show us how best to give hope and pleasure.” Having failed to go gracefully into retirement at the end of 2016 the scope of John's Campaign has extended. Now we’re asking residential homes as well as hospitals to join this movement: to write a pledge, to put up a certificate, to be determinedly up-front in their welcome to families. We’re also offering them space on our website and facebook page to tell us about all the good things they do. The barrage of bad publicity and horror stories has been so intense recently, the crises in both social care and health so much on the public mind, that it’s easy to forget the impact this may be having on the morale of the many kind and decent people who work in these settings – and thus perhaps the effect on those they look after.
I have witnessed so often the miraculous effect of a smile when my mother is sunk deep in gloom. You have to smile first at a person with dementia and there are -- blessedly -- nurses and care-workers whose smiles shine out with a warmth that can blast away the brain fog, even momentarily. They have the strength and certainty to keep on smiling through those long extra seconds it takes a person with dementia to process and respond. If we dowse their confidence with constant public denigration, it’s obvious whose existence will be dimmed.
I’ll never forget sitting next to the great campaigner Tommy Dunne at our conference last October. Tommy lives with dementia and is proud to have been awarded the BEM for his untiring efforts to speak out for his “peers”. “I have no fear of dying,” Tommy said, at the end of that very long day “but I have a fear of going into a home or a hospital.” It seemed to me beyond terrible that the prospect of entering one of our social institutions should inspire fear in a brave, intelligent man living with a terminal illness.This is surely something we must set ourselves to change -- both in fact and in perception.
Life is also a condition that is terminal and it’s likely that there are many people growing older and more frail – without dementia – who share Tommy’s fear. It may not be statistically rational – let’s never forget the potential for loneliness, abuse and neglect in the domestic home – but it’s complex and profound. We are instinctively wary of institutions – we fear their power and size. Remember going to school, however small it was? School is a means to an end, a pathway to success perhaps (well, we can hope) but where is the optimism when someone discovers that they can no longer cope with living in their own home? Where is it when their family realises that all the help they can offer is no longer enough? There is guilt and despondency, a sense of failure, a loss of self.
People with dementia are already struggling with its assault on their autonomy and identity. Possibly 80% of people with dementia will finally live (and die) in residential care. Solutions that work for people with dementia therefore may help everyone. Here’s Joy Watson, another campaigner living with dementia. “I’ve learnt that it’s best not to think too far ahead because there isn’t much point and it can be a bit depressing. But I do have a dream, a very big dream. My dream is that people with dementia could one day find themselves living in developments that are more like villages than care homes.”
So, Joy wants small, human-scale settings - "havens" she calls them. Can we help her achieve her dream? I listened recently to Eloy Van Hal of De Hogewerk in the Netherlands, the nursing home that looks like a village. His constant stress was on replicating the “normal”. It isn’t normal to be living with sixty strangers and all of you eating the same things from the same plates and spending your days in the same routine. He’s right – it’s closer to boarding school or prison – so we must (as Nicci does) give all credit to the best residential homes today for doing all they can to recognise and respond to individual difference. One way of doing this is to help people maintain their own network of relationships.
The best hospitals try to do this as well – it’s called “person centred care” and is increasingly recognised as the only way to treat people with dementia whose identity is threatened as their brain loses its functioning. That’s why good hospitals welcome family carers who bring “normality” trailing in with them. But eventually it is a losing battle – the nature of the illness itself deprives people of their homes, whether or not they physically continue living in them. I don’t think I will ever forget the grainy grey-scale video footage of Chris Roberts, yet another of today’s gallant dementia campaigners, allowing the Panorama cameras into his and his wife’s home to film him as he fumbled about, lost in the kitchen.
A care home manager talks to Nicci about the desperate homesickness experienced by people in her care and the “existential” element of this – the longing “for their childhood, their parents, their old sense of safety and hope, of life unfolding in front of them.” In the memoir Where Memories Go Sally Magnusson describes her mother, still living in the house where she had lived all her married life, cared for not only by her three daughters but also her twin sister, yet begging desperately to be allowed “home”.
On Friday I have an invitation to go and talk about Margery Allingham's and my book Beloved Old Age, in a hospice – a place where people go to die or from where they are supported in their dying. It is also a place from which the bereaved may be comforted. Anne, the nurse in charge of the dementia care suite where Mum now lives, once talked quietly of her feeling that when people die they go on … somewhere. A door opens for them. I didn’t interrogate her on this, though she has supported many people though their passing. I simply wondered whether, after the end of this dark path of disorientation and loss, there is some return home. At least in the perception of those of us left behind. Meanwhile all we can do is whatever is humanely possible to listen to those beacons of lived experience -- Tommy and Joy and Chris – and support safe havens for them and also for ourselves, very soon.