How would you feel if you had dementia?

Graphic by Ken Howard

Last week I gave a  talk at a dementia conference at Temple Balsall church with Ken Howard. And of course he was the star of the show… Ken talked about his diagnosis and how the experience could have been better. We showed the film we  made at our ‘Patient Stories’ weekend and used one or two Whose Shoes?® scenarios. We talked about our NHS Change Day pledge, Ken’s ideas around peer support and how we are working  to connect people with dementia across the world and help them to speak out.

Time was very short but we made time for a brief discussion – we got people to discuss how they would feel if they were diagnosed with dementia. As usual, there was a huge buzz in the room and, once started, it was difficult to stop people talking.

I didn’t get to take part in this discussion myself but on the way home I had a salutary  experience…

I had a lot on my mind. Our session was at the very end of the day and, as always, we were trying something a little bit different.  I hadn’t had much time to process it. I was on the way to see my mum, who sadly isn’t very well at the moment and was wondering how she would be. My petrol guage was on low so I stopped to fill up.

I forgot which side of the car my petrol tank was on and drove up to the petrol pump with the pumps on the wrong side, so had to move the car. I felt a bit stupid. I wondered if anyone had noticed.  I am not one to get particularly flustered about these things or to care too much what people think. But even so, I did.

I went into the shop to pay for my petrol, grabbing a packet of mints on the way. Something didn’t feel quite right but I couldn’t put my finger on what it was. I always note the number of the pump I am at but hadn’t done this. It is only a small garage, and not one I use very often. I pointed to my blue car at the first pump. The woman looked a bit confused. I was slightly irritated and wondered what her problem was. It was pretty clear that she should know the number of the pump, almost certainly pump number one (as it indeed turned out to be).

She asked me how much petrol I had put in the car. She was looking at the screen and seemed to want to check that the prices tallied. I can be pretty casual with these things and hadn’t noticed. But it was a bit more than that.

I realised with horror that I had put not put any petrol in the car. I do a lot of things on autopilot and the fact that I had had to move my car had clearly thrown things a bit. Also perhaps I had been thinking too much about whether to buy mints. 😉

As I say, it was only a small garage. If it had been bigger, perhaps I would have had the option to go to a different till. I returned to the same till announcing breezily that it was ‘Take 2’.  Needless to say my pin number didn’t work first time and I had to have a second attempt. Do you have days like that?

This is the type of scenario we are using in our new bespoke Whose Shoes?® material around ‘Dementia Friendly Communities’. The cashier was not particularly ‘friendly’ – efficient, but not friendly. There was no queue but, if there had been, I would have felt under pressure.  I realised the cashier was looking at my ‘dementia is my business’ badge, supplied by Lucy Marsters. I often wear it to dementia related events as it makes a good talking point and a way to raise awareness. I wondered what she was thinking – I would have liked to ask her but was not in the mood.

My school reports used to contain words like ‘scatter-brained’ – in the days when teachers wrote “real” comments. This was one of my scatter-brained days.

One of my school friends has recently been diagnosed with younger onset dementia, which shocked me more than I would have expected. After all, we know it can happen to anyone.

There are days when theory and practice blur and we perhaps have to confront things a little more directly than usual. But I think it is important to share these moments honestly and as opportunities to reflect a little.

I hope Dr Karim Saad is not reading this as he will probably call me in for some quick tests. And, if so, would I actually want them?… but that sounds like the subject of a different blog.