I haven’t been able to visit Mum this week. My sister and I were due to have lunch with her on Wednesday at her care home’s version of the parents’ evening – the annual review of Mum’s life at the home. Unfortunately, an outbreak of sickness meant the home has been closed to visitors. It’s always a pleasure to see Mum but the prospect of one of Sharon’s lunches adds to the occasion. Until the next time….
It feels odd not have seen Mum for more than a week. I think I’m getting “Some Enchanted Evening” withdrawal symptoms. Stop press – I’ve added some songs from The Sound of Music to our repertoire for next time. Let’s see if Mum really can start at the very beginning… .
But not seeing Mum doesn’t mean not thinking about her and “it”. I recently spent a few hours with some of the Warwickshire Alzheimer’s Society team and one of the topics of conversation was removing the stigma surrounding dementia. For so long, it was simply never talked about but growing awareness means that people are prepared to “go public”. Sally Magnusson’s heartbreakingly-moving “Where Memories Go: Why Dementia Changes Everything” is the latest example of an honest exploration of what dementia means to those whose lives are touched by it. John Suchet’s “My Bonnie” was my first experience of a dementia-memoir if I might use such a term and four years on, its impact is still with me. It gave me the courage to start this blog, to confront dementia and more importantly, the stigma which has surrounded it for so long.
A line from an interview with John Suchet some years ago has stayed with me:
“The only valid theory about dementia is that it is a lottery, a roll of the dice.”
As I’ve said before, Mum has had no stake in her condition. There are no years of excess on which to park an explanation for why she can’t remember my name, why she has no recollection of the man whom she loved so dearly and to whom she was married for 45 years, why she can’t perform even the most basic of personal functions.
In 2012, Alzheimer’s Disease International or ADI produced a report* on removing the stigma surrounding dementia. It concluded with ten recommendations which are inter-dependent and remain as urgent today as they were two years ago. None is more important than another but one nags away at me:
Recognise the rights of people with dementia and their carers.
That demands respect and an acknowledgement from governments around the world of the huge costs, financial and emotional, which accompany dementia.
Achieving that would be a major step along the road to rejecting the stigma which still exists.