“225,000 will develop dementia this year, that’s one every three minutes.” Alzheimer’s society, UK.
When I was a freelancer, I got to deliver many projects of many different kinds. One such was working on J2 ward. My memory tells me this project came through the early days of LIME but this may be a fake memory. It was a long time ago and I can’t find it on their website. In any case, along with a film maker I was commissioned to make a documentary/tell the story of the patients on the ward. I believe there was some kind of publication too.
J2 ward was in Bolton Hospital and it split into two sections – men who were in the early stages of dementia on the one hand, and on the other those whose disease had progressed more significantly. I had done a lot of work by that stage with older people so the chats with those who were at the forgetful stage were largely anecdotal chats and reminiscence. I haven’t met a person yet who doesn’t have an interesting story to tell (although some people don’t believe this of themselves. Even ordinary lives are unique, even ordinary lives are nuanced, experience love and pain, gain and loss, ups and downs: that is how life works. And if you tell stories back sometimes people say, “that sounds good” – as if you’re telling them someone else’s life instead of their own.)
Karen, the ward sister, was a very energetic, passionate woman who wanted to change the public perception of this most crippling of diseases. After the first meeting, Karen gave considerable thought to what was possible. In the meantime, I tried to find a film maker. Often – in those days anyway – these things went like this: I knew someone who knew someone and they were recruited. In this case, I knew someone – the poet Liz Kirby – who told me about her sister, Jane Kirby and how she had recently started to work as a film maker. I met Jane, and we got on straight away.
Jane had also recently been diagnosed with breast cancer. For some reason, and I was never really close to Jane so couldn’t give her thought processes, she made three decisions about this that were very costly. Firstly, she had ignored a lump for much longer than made good sense, secondly when she did finally go into the hospital system she had such an horrific experience with a consultant she did not go back or follow his advice for months and months, and thirdly, she took the view that there must be a natural cure out there that was kinder than what was on offer to her.
The first meeting with the hospital was really full of energy and fun though, and both Jane and I were really excited about the practical possibilities of the project. Karen had a list of patients that she felt could really tell the story of who these men were as well as who they’d been, and she was pretty certain that all the wives of these patients would be willing to talk to us too.
So, in our film, Great Lives we explored the lives of four men closely, all in the later stages of their dementia. These were the Territorial Army Captain, the Footballer, the Fisherman and the Boxer.
We set up the camera for the families to bring in whatever photographs or memorabilia from their man’s life, and then we chatted to them. Jane’s great skill was in inter-cutting poignant moments of them as they were and then shots of how they had been in the past with voice-overs and poetry. Other stories also appeared but these were less developed.
The Territorial Army Captain has been a giant of a man. When I met him he was reduced to a thin, head-dipping patient and then, later, only able to sit in a sling suspended from the ceiling. His wife shared photographs of them camping in the south of France, he was throwing his head back laughing. Then in his uniform and an extraordinary overhead shot of a military maneuver that he was commanding. In each case, and his in particular, it was hard to credit that this was the same man. By the time I met him, he did not speak at all though he occasionally made a noise not dissimilar to a baby. One time, his wife visited with his grandson who was, perhaps, 4 years old. “It is important that he meets his grandfather,” she said, “I wouldn’t have chosen for him to meet like this, but it is what it is.” She had such dignity. He’d worked in insurance very successfully, and having just retired, things started to go wrong. They made a joke of it: he left his bike at a shop, put things back in the wrong place. She knew it wasn’t a joke when, one day, he went into the kitchen and he couldn’t remember where the cups were. They’d been in the same cupboard for 25 years.
The footballer had played for Bolton and England. He was a defender. When he was sold to Tottenham Hotspur, he’d been the most expensive defender ever to that date. His wife said, “We were like the Beckhams – our pictures were always in the paper!” And you could see that they must have cut a very handsome couple, because they were still attractive then in their 80s. He said a few things, but nothing about what he’d achieved more just asking for cake and a cup of tea. “He can’t remember it,” she said, sadly. “They think it might have something to do with heading the big heavy leather ball,” she smiled, but not in a happy way, “and that’s what he did: day after day. It was like a cannon ball when wet. Imagine that – hitting your head against a solid object dozens of times a day for years. No wonder he’s like this. But he provided us with a good life, he did and we enjoyed it.”
The wife of the fisherman was initially embarrassed by her husband who, somewhat younger than the others, in his early 60s, swore like a trooper. “It’s all the language he’s got left. They say that cursing is the last thing that goes – so whilst it’s not the filth you’d want to come out of his mouth, at least I get to hear him, because one day he’ll be silent and there will be nothing. Nothing at all.” She shared with us a video of him fishing – this wasn’t run of the mill stuff. It was competition level and he was very good. He may even have been a national champion. In the videos he is laughing and waving as he hauls in another amazing catch. She’s there too, with a headscarf on and looking for all the world like Marilyn Monroe. “We lived our lives,” she said, “We really did. We went off here, there and everywhere and whilst it’s sad – this catastrophic stroke – I often lie in bed at night and wonder if we should have done something differently? Yes, we could have lost weight. Yes, we could have ate and drank a bit less. But we loved it and we were in love – I didn’t want this of course, what’s happened to him now – but I couldn’t ask for more.”
The final man who featured in the video was a boxer. His partner unrolled posters of his bouts: he and his brothers were street fighters who’d taken up the more disciplined version of the sport. “They definitely fought too much; they needed to make a living. You’d think that you earn a lot on the under card of some of these fights, but you don’t. You earn a tiny percentage of the purse. And so he fought and fought and fought. And he shouldn’t have done.” I looked at him – a man with dark curly hair and sparkling eyes. I could see his charm. “He lived hard,” she said, “He lived a hard life: a jobbing professional boxer at night and a labourer by day. But he survived. Just about. I don’t doubt his lifestyle didn’t help him in the end – but he was so poor, and he did what he had to do.”
Jane spent weeks on the video, finishing it. She worked way harder on it then I did and for many more hours than she was paid for. I’d ring up and say that we really needed to get finished soon and she’d say, “yes, yes we do.” She was finding it hard to find a studio to do the final cut. And then she did, and the finished product arrived. And, thanks to Jane, it was brilliant, moving without being soppy and powerful too. The commissioner and the families were delighted. We launched it, and an audience came, and the families took home a version.
It’s gone now and I don’t have a copy. Disappeared. It was on Vimeo for a while but the link doesn’t work any more. It’s a metaphor that I don’t want to over do – because each of those men are dead too, gone – the way of all things I suppose.
About six months later I heard that Jane had died. I believe she was 32. She took her chance with nature’s cures and they didn’t work. Perhaps sometimes they do?
So I am the sole-survivor I suppose and the memory of those amazing men on that ward, and the brilliant Jane lies within me and it remains vivid in me as if they lived just yesterday.