‘I am still a positive person’

He lives with his wife Rosemary in Canterbury and has three grown-up children. Keith is keen to share his experiences to help enlighten others and has spoken at The Alzheimer’s Show on several occasions. He talks to Christina Macdonald about what it’s like to live with Alzheimer’s…When did you first realise that something was wrong?

My diagnosis was almost by default. I went to the GP in February or March 2010 because I had a couple of falls that I couldn’t explain. My balance wasn’t very good. I felt like I was on a boat on a rough sea. I started to use a stick and my concentration was starting to go a bit.

You had a busy job as a headteacher at the time. Tell us about that.

I was head of a big school in Canterbury and had also been seconded by Kent to advise 23 schools in the Canterbury area, and was doing a Masters in Leadership, so I was pretty cognitively clued in at the time. I thought I had an ear infection and I’d had a series of urinary tract infections and a series of niggling infections, so I thought this was another one.

How did you get diagnosed?

I saw the GP and he gave me some antibiotics that were a week or ten-day course and I fell over again and it was no better. So he did some more tests and sent me for an MRI scan. The first thing I was told by the neurologist was that it wasn’t a brain tumour. I hadn’t expected them to be looking for that and the next bombshell after that was when he said: ‘I think we are dealing with the early signs of Alzheimer’s’. It was something I had never considered. My mother had Alzheimer’s but in her mid-70s and I’d never heard of anybody in their 50s with it. He said: ‘I am going to send you for some more tests and I’ll see you in a month’. I went for some more scans and some blood tests and he put me into the memory clinic for a more detailed assessment.

Did you think at that time it could have been Alzheimer’s?

I did agree that it could be but I’m quite a positive person and I was of the mindset: ‘I don’t think it is because I’m only 54’. I thought: ‘There’s something else going on’. I remember going through some quite in-depth assessments at a memory clinic and I was determined that I would score as high as I possibly could because I didn’t want the diagnosis. I really tried hard and in some areas I scored around average which was in a sense disappointing because I would consider myself more competent than average but in certain areas but I was appallingly bad.

How did you come to terms with the diagnosis?

I made the decision to tell three or four people because I thought: ‘What can one person do with that information, what an enormous pressure to place upon them’, so I told my two deputies and my secretary. It gave them the knowledge and they could watch my back and protect me from the situation going further within the school and allow me to carry on working for as long as I possibly could. They were totally shocked.

How long were you able to continue working?

I was determined to carry on working for as long as I could. The GP had spoken to me a couple of times about calling it a day and I went back in September 2010 after the summer holidays and I fell over again and I was really struggling. I went to see him after work one night and he said: ‘This is going to have an impact upon other people without you even realising it’ and he knew that was going to hit a chord. I was signed off for two months from September and never went back to work. I went back to tell the staff about four months later and I told them why I was going to have to call it a day. It was clear by the looks on their faces they didn’t know.

What was your family’s reaction?

I was very keen to get things in order with my family with Power of Attorney and wills and so I suggested that my wife do hers as well, so that it was a sharing experience and not just: ‘Keith needs this’. It was a good move and it brought the kids into the loop and we talked about it at the time and to be honest, we have seldom talked about it since.

Have you noticed many changes in yourself in the last five years?

Absolutely. Short-term memory is declining and the ability to take things in is declining and so is processing information. My sense of humour is not as good. My wife will say something to me in humour and I don’t see the joke and take it very literally. You see things in a very monochrome way. My ability to read and write is now difficult. To type takes me ages. What is in my brain doesn’t get to my fingers as readily as it used to and similarly with words… you think what you are saying is clear and it isn’t always.

Can you follow storylines in books and on TV?

No. If I watch television, it’s really quite frustratingly appalling because I can’t remember anything. My wife will ask me things about something because she’s trying to help by prompting my memory but in turn it can actually be quite disturbing and distressing, because it confirms the fact that none of it has gone in. I won’t remember 80 per cent of this conversation. But if I can get things into my brain then there are still strategies I have worked out to get some of that back again. I work bloody hard to do that.

What are those strategies?

By making notes – then trying to remember where I’ve put the notes. By keeping a book, a diary, by talking to myself and thinking about conversations by rehearsing them. Another strategy that I’ve increasingly used is to not beat myself up over things. As a head, I had to have a really good memory and a really good system of note-making and processing information in order to advise people. Now I can’t do that.

Does exercise help you to stay positive?

Yes I do exercise quite a lot and that helps. I try new things and take on challenges. I walk most days and haven’t used the stick for three or four years now. I’ve lost about a stone and a half in weight.

You said earlier you are a positive person. Are you still able to be positive some of the time?

Absolutely. I still am a positive person. It’s just that the positivity is tinged with realism as to the impact the dementia is having on me.

Are you able to live fairly independently at the moment?

Yes very independently. My wife does a lot to help me as well but I do a lot to help her. I’m uneasy with labels. I hate the word ‘sufferer’ with a vengeance because I’m not a sufferer. I suffer some days but as soon as you use words like ‘sufferer’ you define the person by the disease no matter what it is. Also the word ‘carer’ I think can be quite useful but it can also be slightly negative in the sense that it implies a greater dependence upon somebody than perhaps one wishes to see. My marriage is a two-way thing. I’ve been married for 35 years and for the bulk of it, I was the rock. I was the one that people leaned on and now I need a rock.

Do you worry about the future or do you choose to live in the present?

Yes and yes. I do worry about the future but I decide to live in the present. I park the worry.

Is there anything you’d like to say about Alzheimer’s to help people understand it more?

The first thing I’d like to say is please understand that dementia isn’t just about memory loss. It’s a much more complex disease than that. The second thing I’d say is that it’s not a consistently downward journey. You can take opportunities to live well with support. Support is the key. The third thing I would say is that everybody is unique and not to view everybody in the same way. And to have an understanding that it doesn’t just affect the very old. It does affect an increasingly large number of people in the age group below 65.