When she was diagnosed with dementia at the age of 56, Dianne Wilkinson was very shocked. However she was determined to continue living her life as best she could. Two years later, Dianne, a mum of four and a grandmother of two, is still doing exactly that. Here she explains how it feels to live with dementia – and what other people can do to help
Something was wrong. I kept making silly mistakes, like wearing my blouse inside out and repeating myself over and over again. As a primary school teacher and mum of four, I’d always taken pride in being super organised but now people were calling me “Dizzy Di”.
When a good friend suggested I saw a doctor, I decided to take her advice because I was feeling a bit low which was unlike me – I’d always been such a positive, energetic person. I wasn’t unduly worried though because I was convinced that whatever was happening was stress-related.
The GP sent me for a scan and referred me for lots of tests. When the results came back, I went to get them on my own and was told I had dementia. That was it. I remember walking out of the doctor’s surgery, thinking, ‘well he’s got that wrong. There’s no way I’ve got dementia – it’s more likely he has it.’
I was too shocked and embarrassed to tell anyone at first, worried they’d think I was going mad. So when I eventually confided in a good friend her reaction surprised me. ‘I’m very pleased you’ve told me,’ she said. ‘It explains quite a lot.’ She described how I’d gone to see her one day, sat in a chair and told her a story. I’d returned a few days later sat in the same chair and told the same story! I’d obviously been saying and doing things that were out of character for quite a while.
My children were fantastic though they, like me, struggled to accept it at first. My youngest daughter Amanda Jane still lives at home, and we’re a very close-knit family so I knew that my other children Julie, Angela and John would always be there if I needed them.
But I was still determined to carry on as normal. After all, I used to be able to make a roast dinner, bake a cake and lay the table at the same time. Sometimes I’d think, ‘I can still do this, I’ll show them,’ But I couldn’t, I kept burning the dinner or forgetting to turn the oven on…and getting very annoyed with myself.
Luckily for me I live in an area which has a Dementia Home Treatment Service and had help from a brilliant team of people who came to visit me at home and showed me how to break down tasks into simple steps so I could still manage them. So I can still bake a cake, but I have to do it one step at a time and it takes me a bit longer than it used to – and I don’t try to do the ironing at the same time!
They also gave me reminder signs to put up at home. I was always forgetting my keys and locking myself out. Now I have a sign on the door saying ‘have you got your handbag, keys, glasses and phone?’ I was a bit embarrassed at first, worried about what people might think. But when the postman saw it (who doesn’t know I have dementia) he was very impressed, ‘I could do with one of those,’ he said. ‘What a good idea.’ I have another sign in the kitchen saying, ‘have you turned off the gas?’ and other ones reminding me to switch off lights.
Gradually I started telling other people I had dementia. Most were kind but very surprised and said, ‘but you look fine’ which became quite irritating after a while. What is someone with dementia supposed to look like?
Once I was in a café with my daughter and overheard two women talking about someone they knew who had dementia. ‘If I ever get that, just shoot me,’ one of them quipped. I was horrified – how can anyone talk like that? I felt so angry but it also made me realise that an awful lot of people just don’t understand dementia – and I really wanted to do something about it.
I decided that I may not be able to work as a teacher anymore (I had to give up and I do miss the children) but can still make a difference. So I’ve joined a group called DEEP (The Dementia Engagement and Empowerment Project). Our aim is to raise awareness of dementia and make the community we live in more dementia-friendly. I’ve been asked to give talks at seminars in front of experts, which was quite scary, but also gives me satisfaction and I’m told it will get easier the more I do it!
I suppose I just want everyone to know that people with dementia are still normal people. We might make more mistakes than your average person – and I do get more tired now than I used to which is annoying – but apart from that we just want to get on with our lives.
Diane with her grandsons
What helps you make the most of life?
1. A big memo board and a diary. My daughter and I update the memo board every Sunday for the following week, and I couldn’t live without my diary. It’s often one of the last things I look at before bed and one of the first things I reach for in the morning because I don’t always remember what I’m doing from one day to the next. It takes me longer to get up in the morning than it used to.
2. Keeping busy, doing something to take your mind off how you’re feeling, and getting outside for some fresh air always helps me, as does having someone to talk to. The worst thing you can do is sit in the house all day. Last week I was getting upset about something and my daughter said, ‘Let’s go out for some tea and cake,’ and that did the trick! Sometimes you have to spoil yourself a bit.
3. Laughing. One day my grandson was eating his breakfast cereal and asked me to pour the milk on. There was a bottle of coke beside the milk…and yes, I poured the coke on instead! We both laughed so much – it’s probably one of the funniest breakfasts he’s ever had. If you don’t use humour you could make yourself ill and miserable.
4. Hobbies. I love walking, I go for long walks along the beach and I enjoy reading too. I have a reading planner that I write in every time I finish where I summarise what’s just happened and what page I was on so I don’t forget it all. I can’t read long books anymore, but I can still continue reading. I want to start swimming again.
Left: Daughter Amanda Jane & boyfriend Andrew. Right: Daughter Julie & husband Andy and son Harry
What doesn’t help?
When people are rude or impatient. A bus driver was once really horrible to me when I couldn’t find my bus pass and I’ve had people in supermarkets sigh and tut at me when I’m getting flustered trying to pay. If I went shopping with a broken arm and was struggling to get my money out, nobody would be rude, they’d probably offer to help. But you can’t see dementia the way you can see a broken arm, so the stigma remains. I’ve reached a point now where I could probably say, ‘I’m sorry but I have dementia.’ But that’s taken time and not everyone can do it. I’ve always been very stubborn and hate asking for help, but I know sometimes I may have to and I’m getting better at it.
What have you learnt?
Be sensible about the future but don’t dwell on it. It’s wise not to think too far ahead. Sometimes you have to make plans of course but my attitude is to live more or less one day at a time. Two years on I’m still living a good life. To tell you the truth, I think it might even be better now. Of course this might not always be the case, but I want everyone to know that there is life after a diagnosis of dementia – and I’m proof of it.