Three Dementia Fighters

Many people regard dementia as the end of life’s story. But some have shown us that it can be just the beginning of a new journey, tough but fulfilling. They’re an example to us all.

travelling with dementia
Travelling a hard road. Sometimes exhausted. Never giving up.
Photo by Eddi Aguirre on Unsplash

I read blog-posts from three remarkable people this morning. All of them have dementia. All of them, in their different ways, are travellers – it’s their way of fighting the illness. And today all three of them sounded exhausted.

 

Wendy Mitchell is a lady in demand. Her book about her life and adventures with dementia, Somebody I Used To Know, is a 2018 best-seller. The story continues day by day on her blog. She’s an engaging and amusing speaker. That’s why people invite her to speak and advise all over the country. In the last couple of weeks there have been conferences in Birmingham, North Devon, Milton Keynes for Wendy. But the schedule takes its toll:

"I was flagging and very tired and found it difficult to keep up and hear, but I did my best and contributed where I could, but stopped typing…."

 

Howard Gordon is a dementia and human rights activist. I read his blog because he keeps me in touch with what’s in the news on dementia issues – and what should be in the news, but isn’t. (I’m looking forward to Howard’s take on the ongoing Conservative Party Conference if the long-promised Green Paper on Social Care again fails to make an appearance.) 

Like Wendy, Howard’s a busy traveller. Last week, after spending Monday in an online conference, he was giving a presentation in Sheffield on Tuesday, on a dementia steering group in Manchester on Wednesday. And then:

"The next couple of days I was left to recover. We can speak and be involved in campaigning and improving the healthcare systems around Dementia but we have a price to pay after."

Minna Packer is on a different kind of journey – a spiritual journey. Her post today had the headline An Alzheimer’s Pilgrimage – and that suddenly brought home to me what Minna’s blog reminds me of. It’s a 21st century, New York-based version of John Bunyan’s classic, The Pilgrim’s Progress.

I was glad to hear from Minna today. Her last post was over a fortnight ago – when, with my new interpretation, she was in the Slough of Despond. Today though, she seems to be finding her way to a better place. As she meets with a dementia group at the Rubin Museum, she finds art which speaks to her of her condition and her ‘yearning for spiritual peace’. (Bunyan called it the House of the Interpreter.)

Minna’s mental journey is physically exhausting too:

"My genetic and physical imperative is to keep going, keep pushing. This is my Alzheimer’s pilgrimage. My body is becoming weaker ... There is more spirit left than brain cells. I’ve been trying to write this post for many many days now. One sentence at a time."

I know a bit about exhaustion. As a runner, I’ve sometimes pushed myself to the limit. Once, beyond it. Two years ago, I was in good shape and I determined to set a new personal best for the half marathon. Not many people at my age manage to beat 90 minutes, and I knew I could. And I did, comfortably – but my body was in distress as I came to the finishing line – and I had to be supported across it those last 5 yards and then carried straight into the first aid tent.

You could say it was dangerous. Perhaps it was, but it was good exhaustion. I set out to achieve something that was important to me and saw it through.

There’s another kind of exhaustion I know – bad exhaustion. It’s the weariness I felt in the early days of Lena’s dementia. Minna describes the situation well:

"One day we’re flying high, doing great, the next we come crashing down and the damage is irreparable. Life throws curveballs."

When that happens, it’s the easiest thing in the world to give up. You can’t change the circumstances, so why should you try? You know you can’t win. That’s what happens to a lot of us when dementia strikes – the person diagnosed and the carer. Life passes, you do nothing, it wears you out.

But that’s not how it is for Wendy, Howard and Minna. Their positivity in the face of adversity, their determination to keep fighting, sets an example to all of us, whether we have dementia or not. OK, so I ran myself to exhaustion. But that was something I chose to do: I had options. They don’t. Yet still they battle on, heroically, in my view.

Even though they’re exhausted they’re not giving up, and I find their message incredibly uplifting. Minna says: ‘I’m convinced that I am still learning. Spirit will show the way.’ Howard promises a new feature on his blog – ‘Rant Wednesday’. (I can’t wait!) And Wendy finished her post with my Quote of the Day:

" I’d rather die of exhaustion than dementia…."

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2 thoughts on “Three Dementia Fighters”

  1. I have been corresponding with Minna for some months now. Her writing is beautiful but her talents also extend to things visual. I share the links below to some of her other work.

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We have an army of dementia carers all fighting their battles alone. That's no way to win a war.

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2 thoughts on “Three Dementia Fighters”

  1. I have been corresponding with Minna for some months now. Her writing is beautiful but her talents also extend to things visual. I share the links below to some of her other work.

Leave a Comment

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