Wendy Mitchell was diagnosed with young-onset Alzheimer’s disease aged 58. Here Wendy, who’s written a bestselling memoir Somebody I used to Know, talks about being a mother
When I got that devastating diagnosis of young-onset dementia in July 2014, it wasn’t just my life that changed. My daughters were affected too. A diagnosis never comes to just one person; those closest to them also receive it.
That’s why I believe that those around you need education, help and support to cope. But as we found out, there wasn’t support in place and we had to venture into this alien world by ourselves. Over the past five years we’ve learned so much – most of which has been of our own doing.
The biggest thing we learned, and very early on, is the importance of talking. This has to work both ways. Yes, my daughters want to know what I’m struggling with in order to help me, but I also want to know what they’re worrying about so I can help them. After all, I’m still a mum.
We’d obviously talked before, but dementia put us onto a new level. We began talking about our fears and the future – deeper thoughts that had never entered the conversation before. Of course they were difficult to talk about, but if we hadn’t done so, we would have been floundering alone rather than figuring things out together.
Soon after my diagnosis, we sat down together and wrote my lasting power of attorney. I’m so glad we did, as it turned out that my daughters thought I wanted completely different things. Imagine the distress I would have caused if we hadn’t talked – distress that I wouldn’t have been able to put right? I didn’t want them to be in a position in the future where they would have to make difficult emotional decisions, at a time when life might already be stressful.
If we hadn’t talked, I wouldn’t have known that Sarah was worried about me travelling alone. Once I did, we were able to look for a solution. That solution was a simple app on our phones that is able to track my whereabouts. That immediately made my daughters more relaxed, and if they’re relaxed, I’m happy.
‘There’s always a way,’ has become my mantra. Getting through life is all about adapting to the challenges thrown at you. If it’s a game, then dementia is a very skilled player – but then so are we. We constantly try to stay one step ahead, outmanoeuvring and outwitting the cruel tricks dementia plays.
One of my greatest fears is relinquishing my independence. As time passes, I may need more support from my daughters, but I don’t want dementia to impact greatly on their lives. They know I don’t want to go into residential care or for them to look after me. I’ve been on my own for most of my life so I imagine that to suddenly be surrounded by other people and noises would be quite disturbing. However, I also am aware that this option might come to be for their benefit, so I am happy for them to make whatever decision they feel they have to make in the future.
The other valuable lesson we’ve learned is the importance of time. Whereas once we may all have wished for the weekend, wished for next year, wished our lives away, we now take delight in enjoying time with each other in the moment. And if today is a bad day for us, we take consolation in thinking that tomorrow may be better.
After all, we’re now ‘Team Mitchell’. We’re all on this journey together.