Wendy: ‘I didn’t want my daughters to be my carers’
The day we wrote out my lasting power of attorney documents, I made the girls an afternoon tea. It’s something we did often when they were little, sitting in the garden on a sunny day. I hoped the treats would sweeten what was going to be a difficult conversation for us all.
We sat down to talk, and I told my daughters that if anything happened to me in future, I didn’t want to be resuscitated. I never wanted them to become my carers, and when the time came that I could no longer live independently, they would have the legal power to choose me a suitable residential home. Sarah and Gemma were quiet for a bit, but agreed to honour my wishes. The idea of them giving up their lives to care for me is simply too much to bear.
SENSE OF PURPOSE
Nobody needs to be alone with dementia, and talking is the best thing you can do. From the very beginning, I recognised how important it was to make my voice heard. That’s why I’m as open as possible with my daughters – because, one day, I may not be able to communicate my wishes for myself. It’s also the reason I give regular talks for the Alzheimer’s Society and why I’ve written a book. When I was first diagnosed and had to give up my job, I felt utterly worthless. My new role educating and helping others has given me back that crucial sense of purpose.
Living with this disease feels like standing on top of a cliff. Some days it’s sunny, and clear for miles. But without warning or reason, a thick fog will descend, and all you can do
is wait for it to clear. The terrifying thing is knowing that, one day, it won’t.
When I think about the progression of my dementia, I have three big fears. One is losing my independence, another is becoming someone I no longer recognise. The third – and worst – is not recognising the two people who mean most to me. I have no control over if or when any of these things will happen, which is an equally daunting thought. Yet, for that reason, I choose not to dwell on possibility. The fears are still there, but I bury them deep inside. I’m really lucky to have my girls with me every step of the way.
I am not ‘suffering’ with dementia – I am living with it. I take each day as it comes, and challenge myself to go out on my own, type my blog, write my book and push my brain to its limits.
Staying positive and living for today is crucial. I can’t drive, but I can take public transport. I can’t jog, but I can go for walks. I can’t read novels because I forget what’s happened, but I take great pleasure in short stories. And I can watch the same series of The Great British Bake Off
over and over because the winner is always a surprise!
I may not remember facts, but I always remember emotions, because that’s a different part of the brain. In a few hours or days, I’ll forget what I’ve said in this interview. But when I go to bed, I’ll know if I’ve had a good day. Sarah and Gemma will always be the people I love the most. Through honesty, humour and enjoying every moment, we will continue to make memories to treasure.’
Somebody I Used To Know by Wendy Mitchell (Bloomsbury) is out now
‘Staying positive and living for today is crucial’