This is quite a long article, but the people in it are well worth the read... There are two irresistibly likeable and special people I'd like to introduce to you, and here they are – Christine and Paul Bryden (being photographed by their granddaughter Saskia).
We had a fascinating, rich, warm – and quite long – meeting at the Kings Fund earlier this week. They're the kind of people I'd like to have as regular friends, although they live in Brisbane, so they won't be easy to pop in on.
I encountered Christine Bryden by chance. She has written two books: Dancing with Dementia: My Story of Living Positively with Dementia; and Who Will I Be When I Die?. I came across these a little while ago, when researching a new life communication product I am developing for people with early stage dementia. Those in the know seem to think it's a good idea and it is gathering momentum, so I was interested to know if she would be interested in joining the advisory panel to help with it.
It turns out that she would – and better still, she and Paul were due to come to the UK for the 27th Conference of Alzheimer's Disease International which has been running at ExCel in London this week. She will be speaking on Saturday. So we were able to meet up after they had visited Jessica Kingsley, her publishers, to discuss the idea and Christine's possible involvement. I nearly forgot to mention – partly because neither of them allows it to define her; Christine has late-stage frontal lobe dementia. And frankly, you would hardly know it from a casual encounter with her. As she agreed with me (and her doctor) she's a very determined person.
This short extract from an article she wrote for the Silver Institute last December displays her pragmatic record of and attitude towards the disease she lives with:
"Life is becoming much more difficult, and Paul needs to be even more patient. I cannot plan ahead, nor recall even this morning or yesterday, and I am so frustrated with my inability to think clearly, let alone speak properly. It is so hard to try to describe what this feels like – this endless struggle to think where I am in the flow of time, and what I am meant to be doing, let alone what I just did.
Words come out in a true jumble – just rubbish at times. I don’t know how Paul manages to know what I am trying to say. Handwriting is a scribble - just a muddle of letters. I can’t even count money any more, and make lots of mistakes with our finances on the computer. Paul is an amazing man, keeping me trying to cope by encouraging me, and letting me do as much as possible. It is really embarrassing to be honest about this, but sometimes my struggle to cope with daily living is so overwhelming that I scream and shout, use bad language, and behave like a spoiled toddler. I am amazed that Paul still puts up with me!"
Paul, a part-time prison Chaplain, is a sensitive and immensely evolved man. He described his role in Christine's life not as a carer but as an enabler. I LOVED that. All through our encounter, which also included a walk back to the tube station afterwards with her picking her way hesitantly across the paving cracks as anyone with a dementia might, he did just that – enabled her – with the very lightest of touches. And I saw her give herself up, without even the slightest hint of giving in. It was a privilege to be present with them.
I was telling them about my idea and talking generally about a favourite theme – the reminiscence bump – which I often talk and write about and which underpins so much of my work.
Initially, it was in the context of Many Happy Returns Chatterbox cards which help people explore their reminiscence bump years. "Oh but they'd be no good for me" said Christine; "I can't remember anything!"
Well of course, I wasn't having that. "It's true, you'd be unlikely to relate to the 1940s card themes – you weren't born! But the 1950s cards subjects would mean something to you I know, because that was your childhood. And anyway, there'll be lots you can remember from your 'bump' (from 5 – 25-ish years old)."
Christine wasn't at all convinced and assured me she really couldn't remember. Well, there's no point and little to be gained from arguing (a golden rule in communication for any of us, never mind people with dementia) but I was sure the reminiscence bump theory would work with her.
"Would it be OK to ask you a question about your youth in Rayners Lane..." I ventured tentatively, "for example, what was the colour of your front door?" "It was red!" she exclaimed immediately and excitedly, "My mother was very unconventional – she came from Belgium. No one else had a red door in the street!" (Hmmm, no problem remembering here, I thought.)
"And what was behind the door?" I continued. "It was a long corridor, with two rooms off, like most terraced London houses, with the kitchen at the far end." "And when you think about it, is anyone in the kitchen?" I asked, "My mother," she replied. "I see her in the kitchen, cooking."
I thought we might go out and explore the garden together... and using some "under-the-radar" techniques I've developed, she clearly found pleasure in the remembering and was able to give me detailed descriptions of the garden layout, with the patio with grass and the path down the side with its lilac tree and redcurrant bushes – and her own little patch of garden where she could tend her own plants. She delighted in realising that she could recall the garage her father had built at the bottom of the garden, out of heavy slats of 'heritage' concrete (remember them?!) aided by local neighbours. The more she remembered, the more she found she was able to remember and share.
And all the while, Paul was listening with rapt attention. "Have you heard any of these these stories before?" I asked. "Never – and we have been together for fourteen years!" he replied. And it was so lovely to witness the delight and surprise which Christine expressed at remembering so easily and with such obvious pleasure. In that moment she was brimming with wellbeing, just like people do when we take these quiet journeys together.
We discussed what happens when people have unhappy memories, which most of us have from some part of our lives, and the techniques I've developed to honour but also to circumvent and circumnavigate such experiences. My experience indicates that most people prefer to drive towards their happy memories (even if they might confabulate) and of course, research confirms older people's tendency to remembering their histories through rose-tinted specs... see my blog, 5 March 2010.
"You should write about what you do for everyone who has someone in their life with dementia," Paul said generously. "It would make a useful and interesting book and it could really support the enablers like me. I mean, if I could find these things out about Christine before she loses her capacity for speech, it would be so helpful."
And you know what, I just might. Perhaps we could do that together too...