How would you feel if you had dementia?

Graphic by Ken Howard
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?

BadgeThis 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.

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About Gill Phillips - Whose Shoes?

Passionate about personalisation in health & social care. Creator of Whose Shoes? - an imaginative approach to helping people work together to improve lives. http://nutshellcomms.co.uk
This entry was posted in Blogs, dementia, education, in my shoes, mental health, personalisation, well-being and tagged , , , , , . Bookmark the permalink.

6 Responses to How would you feel if you had dementia?

  1. Wendy Brewin says:

    You are not alone! a few weeks back I’d spent quite some time in the garden collecting lots of lovely natural materials for an activity I was going to do for a memory cafe. I had a basket full of loveliness and left it deliberately by my door so I wouldn’t forget it on the way to work. Half way to work I suddenly thought “I can’t remember picking that basket up!” so I turned off and began the journey home to pick up the basket I’d left behind………or had I?! Half way home that idea also struck me so I pulled over and checked the back of the car……there was the basket full of flowers and textured leaves sitting in the footwell behind the driver’s seat! It took me twice as long to get to work that morning!

    How did it make me feel? stupid, flustered, frustrated with myself. I should have laughed it off but because it was for other people and not for me, I was anxious to get everything ready and prepped properly. I put it down to having too many things going on in my head that morning too.

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    • Thank you for your honesty, Wendy. It’s not just me then 😉
      Yes, I think many of us have too many things going on in our heads. I think my underlying key message is we all need to be kind to each other and ‘make allowances’. If we concentrate on ‘dementia friendly’ there is a danger we make it something for ‘them’ and not ‘us’. In some ways this reinforces stigma rather than bringing everyone into the mainstream of ‘humanity’ where there really is no concept of ‘us’ and ‘them’.

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      • Wendy Brewin says:

        I couldn’t agree more Gill; the whole underlying theme of our work at the Sensory Trust ( whether it is supporting people with dementia, learning disabilities or any other disability or impairment, any age or social/cultural background) is that our communities should be inclusive. If you design/provide services and places inclusively then everyone benefits and nobody is defined by a label associated with their age/ability/social/financial background. Yay to stamping out labels!! 🙂 xx

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  2. munt12@aol.com says:

    You write some really good blogs but this one hit a nerve!! May I use it for Dementia friends sessions? Carol Carol Munt (Chair South Reading Patient Voice / Lay Member NHS Thames Valley Patient Experience Strategy Group) 07881911429 / 01189756090 also on LinkedIn and twitter @muntma

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  3. Thank you Carol – and yes, please do. And let us know how you get on 🙂
    It would be great if, in due course, you would like to write an ‘in my shoes’ blog. We have not yet included any guest blogs specifically about the Dementia Friends scheme and I am always more interested in how things work in practice than the theory. I was very moved by ‘Gina’s film’ published recently – wonderful.

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  4. zoeharris13 says:

    I suspect you’ve made a lot of people feel relieved it’s not just them – I certainly felt that way when I read your blog! I remember asking my late husband Geoff, who was living with a dementia diagnosis and who had to ask someone to call me because he was lost one day, how he remembered my telephone number. “I don’t want to discuss it,” he said. “It’s just there, but if I have to think about it I’m not sure it’ll stay.” He was relying on that sub-conscious part of our brain that was letting him down in so many other ways but allowed him to recall a few bits of crucial information that allowed him to retain a semblance of normal life. Perhaps one day they’ll really understand what our brains are doing…
    And I totally endorse your comment about making allowances and being kind to everybody and not just to those with dementia… ‘dementia friendly communities’ is starting to sound like a rather strange concept…

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