Thank you for coming – goodbye

It’s Dementia Awareness week and all over the country, people are being invited to join in the discussion about this merciless disease. There are 800,000 people living with dementia but, alarmingly, only 44% of those with dementia have received a diagnosis. We’ve recently done some work in Warwickshire to try to promote early diagnosis. There are no confirmed figures available yet but the indications are positive. 

I’m not going to bombard you with statistics today but here are a couple more – it’s estimated that the financial cost of dementia to the UK was £23billion in 2012 (the emotional cost is far, far greater) and experts believe that, by 2021, more than a million people will be living with dementia in the UK. I don’t know about you, but I find those figures chilling. This might be dementia awareness week but what we really need is a dementia awareness decade.

For me dementia awareness has two strands and forgive me if I’m stating the obvious. It’s important to make people aware of dementia, of what it means to those with the condition and those closest to them. But it’s more than that. Awareness to me is about how to be with someone living with dementia. That was brought home to me again this week when I visited Mum. She was asleep when I arrived but seemed happy to see me. I’m pretty sure she doesn’t know who I am these days but I think she knows she knows me. Having disturbed her from her slumbers, we made our way to the dining room where we can spend some quiet time together. I’d taken her a magazine – this week it was “Majesty” which I can honestly say I’d never bought before. I’m not sure I’ll bother again because Mum didn’t seem to recognise anyone inside its pages. I thought that being recognised by Mum was the one thing the Queen and I had in common but it seems I was wrong on both counts!

Having romped through the magazine in record time, I told Mum about my week. I’ve stopped asking her any questions beyond a “how are you” and “what have you been up to” which always elicit the same responses – “fine” and “oh, all kinds of things.” To ask her anything else, which I used to do, just highlights that she lives permanently in the present these days. 

A few minutes later, after I’d told her about how our elder cat Abu flirted with the nurses at the vets last week – their words not mine, or his for that matter – Mum got up and walked out, muttering that she wanted to check what was happening:

“Be sure to come back Mum – don’t you forget about me now.” 

Mum laughed and continued to walk away. I sat there, on my own, for a few minutes and then traced her steps. Sure enough, she’d joined the others and seemed to have forgotten entirely that I was there. I made a joke of it and we headed back to “Majesty” and a rapidly cooling cup of tea. By the way, the Mum I knew couldn’t stand tea and never drank it. 

I’d spent the morning at my old university, trying to charm them into employing me, and I related the story to Mum. She stared at me, completely uncomprehending. I could have been speaking a foreign language and thinking about it, I probably was. There was no light in her eyes. If I think back to Mum in her pomp, her eyes always shone, sparkled even, with life and love. Today, nothing. At that point, the doorbell sounded and Mum was off again. Again, I let her go, this time without comment.

A few minutes later, I found her listening to a story in the lounge. The story seemed to be about a black cat with white paws which was drunk – but I might have missed the point.

“Oh there you are. You’re hiding from me again Mum.” 

I’ve learnt not to challenge and certainly not to show any hurt or disappointment in my voice. That’s dementia awareness for me.

I kissed her, told her I love her and left. I can be abandoned twice but no-one leaves me a third time. 

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One Response to Thank you for coming – goodbye

  1. More moving experiences, Duncan…so similar to my own with Dad. I mentioned you in a recent blog about a visit to see him…saying I felt I was just a few steps behind you on this difficult journey. Tough times. Best wishes, Jane.

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