See the person, not the dementia

It’s been a busy week and undoubtedly one of the highlights was attending an Alzheimer’s Society Leadership Tour event in Birmingham. The society’s chief executive and other senior members of the leadership team are touring the United Kingdom, meeting staff and volunteers like me. Though it’s always enlightening to meet the top team, I took a lot from meeting the people who look after the society locally. Finding them to be as passionate and driven as the volunteers who give their time freely is very encouraging.

So encouraged yes, even stimulated by conversations but I also left the event with my sense of anger renewed. It’s nothing to do with the people I met but the messages ¬†reinforced make my blood boil. Eight times as much money is spent on research into treating cancer as into dementia – how can that be right? The society is looking to significantly increase its spending on research but that takes time and the effort of staff and volunteers alike to raise the cash. The government could and should do more. What really makes me angry though is the so-called dementia tax. Most of us pay our taxes and as part of that deal with those who look after our welfare in Westminster, we receive free medical treatment if we’re ill. At least we do at the moment. People living with dementia pay their taxes as well. My Mum has paid every penny she owed throughout her life but because dementia is deemed to be a social rather than a medical condition when it comes to care, it is means-tested. My parents were careful with their money and now Mum has to pay for her care. Had she succumbed to heart disease, the taxes she’d paid would help to care for her. And there are thousands like Mum – not rich, but people who’ve heeded political advice about being financially prudent, and this is their reward. It is simply medical discrimination.

Rant over…for now. The other thought which left the event with me on Wednesday was how essential it is to see the person before dementia. It’s too easy for me to see Mum as she is today and not remember that special person who gave me such a wonderful start in life. I’ve included a picture of her and Dad in this post for that reason and as I bash away at my keyboard, I’m looking at a photo taken on my wedding day of Mum and my best woman. By the way, that isn’t my quaint way of referring to my wife – I chose a best woman rather than a best man for my nuptials. It’s a beautiful photograph which radiates unadulterated joy and is a constant reminder of the Mum I remember.

When I visited Mum on Tuesday, she smiled warmly when I arrived and seemed genuinely happy to see me but conversation – as ever – was impossible. She seems to have shut down, something my sister remarked when she saw her yesterday. So, in the spirit of seeing the person and not the dementia, a story about a very significant moment in Mum’s life. It comes from a time before I was born but thanks to her meticulously-kept diaries of the late 50s and early 60s, the details live on. Dad asked Mum to marry him 53 years ago, almost to the day but because it coincided with the wedding of close friends Lynne and David, they didn’t broadcast the news. It was typical of them, not wishing to deflect attention from the happy couple. I’m not sure who else knew, if anyone, and Mum certainly wasn’t taking any chances because her diary betrays nothing of the news. In fact, the day after the wedding, Mum headlines her diary entry with “Cleaned cars”. Those truly were racy times in the Hadley household.

The following day there is a mention of going to choose a ring but still no announcement. There’s a trip to the cinema to see “Don’t Panic Chaps” starring George Cole (no danger of wedding hysteria leading to panic at this stage), and life seems so mundane that Mum even comments on the route she took driving home one evening from Sutton Park. There’s a “rather boring” evening spent having supper with some people I’ve never heard of and details of a wool-buying expedition. Engagement fever wasn’t exactly the order of the day. Then on Saturday June 4th, “Roger and I got engaged (at 6.30pm)”. Precise and to the point. But then: “Glorious Day.” Who needs to say more?

Mum has always taken life in her stride and her attitude to a diagnosis of Alzheimer’s four years ago was just accepted in that way. She seems accepting of her life today and the sadness and frustration of how things have turned out live more with me, my sister and those who love her. Living in the past is probably not a good idea for anyone but in this instance, it’s imperative. You see, that’s my Mum and that’s how I choose to think of her.


Mum and Dad in 2007, 47 years on from the heady days of car cleaning and boring suppers.



About duncancajones

I am a coach and mentor, a charity trustee and a journalist. Thanks for taking the time to visit my blog.
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2 Responses to See the person, not the dementia

  1. dot barrie says:

    i had an aunt and to visit her was difficult dont think she knew me but i was her only visitor her son lived in tasmania so i was her only visitor she never spoke but i talked to her about the family and old times
    i think she enjoyed the chat even tho she never spoke except when i left she would say god bless you

    • Thank you Dot. It’s kind of you to respond. It is very hard to see a loved one in the grip of dementia but we have to hope that our visits mean something.

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