Tracey wants to raise awareness of Alzheimer’s disease among younger people and to boost research by supporting fundraising campaigns like Alzheimer’s Society's Cupcake Day which takes place on Thursday. Here, she shares the experience of her husband's early onset dementia.
“Paul, my husband, had just celebrated his 50th birthday when I just knew something was wrong.
Paul had been quiet and slightly withdrawn for a year or so, and he'd forgotten quite a few things, but one particular episode stands out. That is the day he forgot the name of our granddaughter, Ruby. Paul did his best, he dug really deep to find her name but it just wasn’t there and that really upset him. Ruby lived nearby and was often round at our home. Our granddaughter asked ‘why’s pappy crying?’ and that’s when he said her name just wasn’t there.
Paul decided that he needed to see his doctor and asked if I would I go with him because he was frightened. At first, the doctor played things down, saying ‘I’m sure it’s nothing to worry about, but we’ll do some simple blood tests to make sure everything’s ok.’ The blood test results were fine. Then he did a small memory test, which he failed and was referred to the local memory clinic for more in-depth testing. While all this was going on I had an inkling we were going down the road of some sort of dementia, even though Paul was relatively young.
Living with him I saw first-hand all the things that he’d forget. Occasionally, if he was having an in-depth conversation, he’d get muddled up. Things would come out in the wrong order. Paul had two brain scans at different hospitals and Alzheimer’s disease officially entered our lives 10 months after the initial visit to the GP. The dementia diagnosis was a little bit of relief for me because now we knew what was wrong. The uncertainty beforehand was more of a worry. Once they said it was Alzheimer’s, it was a case of: ‘this is what we’ve got and now we've got to plan accordingly.’
People say ‘he's so young, so go and do all the things that you dreamed of doing when you were due to retire, and do them now.’ But that’s such a clichéd statement. It’s impossible. You have to carry on as normal as you can, which we’re trying to do.
Paul’s 57th birthday is this Friday (16 June), but he has to have the same routine - this is really important for someone who is living with Alzheimer’s, whether they are at the beginning, middle or end of their journey with the disease. Monday to Friday, Paul gets up and he goes to work, which is really good for him. Paul works as a builders’ labourer and there’s always somebody with him. The company, Flower and Hayes Developments, are very supportive. They could not do more for him.
Everyone at the firm knows Paul is living with Alzheimer’s and they even have a bit of a joke about it if he misplaces something. If they find something in an usual spot, they’ll say 'that will belong to Paul'. They aren’t being insensitive because they know that Paul has always had a good sense of humour. I’d say Paul is a jolly, happy-go-lucky person who can give as good as he gets and so he loves the building site banter.
We laugh and joke and say there are now three people in our marriage – Paul, me and Alzheimer’s disease. It is there every day. And it doesn’t go away. Something dementia-related will happen every couple of hours. For example, it might be Paul forgetting where he put things or not remembering we were supposed to be going out with friends. It’s constantly like that, but you learn to live with it. It helps that we are a very strong couple. In August we will have been married 35 years and we always give and take.
You just get on with it but, then again, you don’t have a choice. It’s sink or swim in this game and we’re definitely swimmers. I can’t change what’s happened to Paul. I have to live with it and I am learning all the time. Paul quite often tells me off. I might say something to him and he tells me off for talking to him like he’s a little child. So I have to constantly try to be understanding which can take a toll on me too.
Sometimes Paul gets frustrated if he can’t find an answer or he can’t think of somebody he has just met and he’ll just say something like: ‘her with the long blonde hair.’ I try to curb my frustration and not let it show. Frustration is my biggest challenge. When it's your loved one, you get frustrated and that shows straight away.
I hope the new government will continue to plough money into research and care because we have to find a cure for this dreadful disease. By 2025 there will be one million people in UK who are living dementia and that's why we all have to unite against dementia and get involved in Alzheimer’s Society fundraising initiatives like Cupcake Day which takes place on Thursday (June 15).
Alzheimer’s Society, which I support wholeheartedly, is encouraging families, friends and colleagues to bake or buy cupcakes to raise vital funds. Each cupcake sold will help the charity find a cure, improve care and offer help and understanding for people affected. I hope people across the country support Cupcake Day because we can’t stand back and let things continue.
Cupcake Day is for everyone - from baking pros to novices, everyone can join in the fun. Whether you choose to celebrate on June 15 or mark the occasion another time in the month, there are no excuses not to get involved in Cupcake Day and rise against dementia.
As for Paul and me, we’re living ‘in the moment’. I’m a young-at-heart 56-year-old now and neither of us tries to look too far forward. We concentrate on the next couple of months and what will hopefully be a long, hot summer."
Plan your Cupcake Day now with a free fundraising kit by visiting www.cupcakeday.org.uk.
Anyone worried about dementia should contact the Alzheimer’s Society’s helpline on 0300 222 1122.