We have been given a 'brief' to find out about the service given to people with dementia (and their carers) where the service is working- where there are gaps, from point of diagnose to end of life. Its a big task, but an exciting one. Our instinct as ever is to tread lightly, let the participants lead the conversations direction. Some working with people diagnosed with dementia hold the view that its to difficult to talk about the subject directly. However we're finding that people will talk about dementia - and in fact these conversations can be a relief, a letting go. Because dementia can become such a taboo, shrouded in fears and shame, there's a sometimes block around the whole area. Different people have massively different feelings about all this, be they carers, people with a diagnosis of dementia, or simply people with no direct connection, other than being fellow humans.
A gentleman Phil spoke to in the morning, with the intention of starting reminiscence, cut across his preamble to discuss what he really wanted - his 'condition'. He'd had to make adjustments to his language because of the changes wrought in him by the dementia - and this gave his words their own specificity and power. The disease was his "fall". It didn't progress in a straight line: "There's no such thing as beginnings and endings." His descriptions too were tangential, but had their own lucidity - an extraordinary poetry, to Phils ears. We will feature his full interview in another blog.
In the afternoon, 'M' a carer made a link between her wartime childhood and her current situation. She was talking about the paradox of needing to toughen up in order to care for someone with dementia, otherwise the experience will run you ragged. "I think my childhood made me stronger. We used to play on bombsites - they wouldn't let you do that now. If you're too protected you don't strive. One of my friends, a carer, is two years older than me and we have the same mentality. Another friend who's younger says, 'I need a counsellor.' In fact the doctors wanted me to see a counsellor. I saw this girl and she sat open mouthed at what I told her. She couldn't believe it. I don't need to speak to someone younger than my daughters to get advice. She didn't have the life experience to help me. So I didn't go again. I think people generally today are too soft. They EXPECT - rather than fighting."