Two contrasting emotions in 24 hours. Yesterday, Mum had three visitors: her cousin, her brother and his wife. I spoke to Mum’s cousin last night to find out how the visit had gone and I could tell she’d found it quite distressing. Her own father had lived with dementia in his last days so it’s not as if the experience is new. And yet, nothing quite prepares you for seeing a close relative or friend in the advanced stages of dementia after a break of a month or two.
“There’s nothing left of the old Jan,” she said.
Her words hit me squarely in the chest. Of course, it’s true and I know it is. Until now, I haven’t been prepared to accept it though. In my recent witterings on these pages, I’ve possibly hinted that I now visit a stranger clothed in Mum’s body but hinting is one thing and admitting it out loud is quite another. It’s part of the letting go. It doesn’t mean I won’t visit Mum and I won’t try to engage her in any form of conversation but it might, and I stress might, release a little of the pressure we both feel when I call in.
But enough introspection and melancholy. Today, I met up with colleagues in my local Alzheimer’s Society Campaign Group. The purpose of the meeting was to discuss our next campaign. We’ve recently finished a project on Early Diagnosis and preliminary soundings suggest the project has borne some fruit. There followed a lively and robust discussion on where next to focus our energy. In line with meeting etiquette, we’ve arranged a follow-up to discuss further – we won’t be rushed – but I always leave our gatherings with renewed purpose. We might not beat this cruel disease but we can make a difference, however slight. A score-draw perhaps.
Today, I’ve also had an opportunity to spend some time in the company of someone living with dementia. He’s young to have received a diagnosis and to listen to him talking about his reaction to that diagnosis, and to hear him describe his approach to his new life was at once humbling and inspiring. He kept coming back to the importance of communication – of talking about dementia and of listening to others talk. A timely reminder.
Dementia isn’t a death sentence, nor is it, necessarily, the end of a meaningful life. And with that thought, on with the next campaign!