At the beginning of December I had an email from the Spectator magazine, asking if I would comment on a review one of their journalists had written about the TV screening of the fictional book Elizabeth is Missing, where the wonderful Glenda Jackson played the lead part of Maud, who was living with dementia.
Here’s the link to the article for you to read.
Sadly my response came out in the Christmas issue but was behind a paywall so I can’t provide the link. They did cut my response down to fit the space, as often happens but here it is in its entirety…
I’m writing in response the review of Elizabeth is Missing, ‘Return to Glenda’ by James Walton.
I totally agreed with Waltons comments on the absent years of Glenda Jackson from the theatre but also admire her for fulfilling her passion and belief she could make a change in the political world.
It didn’t surprise me that Jackson chose this role as her comeback after more than 20 years away as Dementia is one of the biggest social challenges this country and indeed the world faces. The social care crisis is one that politicians have avoided for too long and the one that will not magically disappear as the population ages.
However, now may be the time to announce my vested interest in the piece. Sadly I’m now unable to read the book or follow the TV programme as I too have dementia, so can’t comment on Waltons view of the programme itself. I’m just happy whenever dementia get’s an airing on national TV simply to get people talking about dementia.
Dementia is certainly a bummer of a diagnosis and it can strip away your self esteem, your memories, your abilities. But we never forget how people make us feel. We forget the detail in the blink of an eye, but emotions remain strongly embedded as it’s a different part of our brain that’s often left in tact. I’ve already apologised to my daughters if and when I forget who they are, but tell them to remember that I’ll always love them.
You may be wondering how I can possibly type so eloquently; type these very words when I have dementia?
We have a complex brain disease, our experiences are individual. Image the brain as a string of fairy lights. Each fairy light representing a different function of the brain. Some lights flicker on and off – dementia affecting our ability to do something one day and then we’re able to the next. But when the light fail altogether that’s when dementia has won and has taken that ability away for good. But different fairy lights flicker and fail for each of us. That’s why I can type and other can’t; that’s why they still cook and I can’t; that’s why they still feel hunger and I don’t. We’re all different in the cells it affects.
I can type words far quicker than I can think and speak them because that part of my brain hasn’t been affected others can’t type but can speak better than me. I could never in a millions years simply speak these words. Typing is my escape from dementia and I watch my fingers in awe sometimes.
However I never dwell on what I can’t do. I never dwell on my losses, we have no control over either. Personality has such a big part to play in how we cope with a diagnosis and I’m lucky as I’ve always been a glass half full person and turn negative experiences into positives because that’s what helps me cope. When the fog descends and dementia takes hold I tell myself ‘it’s not me, it’s this cruel disease’ and I’ll just sit quietly and wait for the world to make sense once more.
Clinicians focus on ‘There’s nothing we can do for you” instead of focusing on what we still CAN so. That makes it even more important for those around us to believe in what we can do and support us to continue living. I have two amazing daughters, Sarah and Gemma, who enable me rather than protect me. The biggest thing dementia has taught is is the power of talking so when dementia throws a challenge, we talk and try and find a solution. My mantra is ‘There’s always a way’, we just need the kindness and support of others to help find that way out of the situation.
Dementia may be terminal, but then so is life, so I enjoy each and every moment, the simple things in life are now more precious, time has taken on a whole new meaning and if today is a bad day…well tomorrow may be better.
Author of Somebody I Used to Know