‘We are finding joy in each day with dementia’
Four years ago, Sarah Mitchell’s mum, Wendy, was diagnosed with Alzheimer’s disease at just 58. Despite her mental decline, Wendy has written a memoir challenging stereotypes about the disease. Here, she and Sarah, 35, talk about their experiences
A mother and daughter share their journey
Sarah: ‘I learned to step back and let my mum live her life the way she wants’
When you’re told that a loved one has dementia, the first thing you want to do is help. Shortly after Mum’s diagnosis, we were going out one day and I went to help her with her coat. But she stopped me, saying:
‘If you keep doing it for me, I’ll forget.’
She was right. When it comes to dementia, people do things for the kindest of reasons, but it’s not always for the best. For me, finding that balance was a steep learning curve. Now, I know that the best way to help Mum is simply to let her live her life the way she wants.
As a palliative care nurse in a hospice, I regularly look after patients with dementia, and have first-hand experience of how it can affect different people in different ways. In my job, I’ve always treated people in the same way I’d look after my own parent. I never imagined it would actually happen to my mum.
Mum brought me and my younger sister up on her own. She enjoyed running, baking and used her razorsharp brain in a demanding NHS career. As children, we moved house a few times, and Mum always did the bulk of the manual work – packing and labelling boxes, decorating and DIY. She was – and is – a fiercely independent woman, who never wanted to rely on anyone. She’s also warm, kind and funny; my childhood was filled with love.
EARLY SIGNS
For a long time, I had no idea that anything was wrong. Mum’s organised nature meant she was capable of covering up her deterioration. I’d see a few more Post-it notes around the house than usual, but we tended to make light of it when names or events slipped her mind. After all, it was usually me who was the forgetful one.
Around a year before her diagnosis, Mum told me that her head felt fuzzy. She couldn’t quite describe the sensation, saying life was simply a little less sharp than usual. One morning, she tripped over suddenly while out jogging – but had no idea why. It happened several more times, like her brain and her legs weren’t talking to each other. In 2014, she was diagnosed with early- onset Alzheimer’s disease. Although we suspected it was coming, seeing the words on paper was still a huge shock. We knew all our lives would change.
INGENIOUS IDEAS
Almost four years on from the diagnosis, my sister and I have supported Mum by allowing her to retain her independence. I live nearby, so I’ll give her lifts or go with her to the doctor’s or the bank, but she still lives alone and has found ingenious ways of living with dementia. She’s painted around the light switches to make them easier to see, and has
stuck pictures of the contents of her cupboards on to each of the doors. She sets reminders on her ipad for everything, and writes a blog called Which Me Am I
Today? She can type more quickly than she can find the words to talk, but she knows she needs to keep doing it every day – otherwise the skill might slip.
Mum can’t talk on the phone any more, but we Facetime several times every day. I’ve also set up the Find My Friends app on her phone, so I always know where she is. She no longer drives, but takes buses and trains and lives an active, fulfilled life. People sometimes say we’re taking a risk letting someone with dementia travel around on their own, but I always think back to that coat situation – like all life skills, if Mum doesn’t use it, she’s likely to lose it.
When people think about dementia, they tend to imagine the end. But it’s important to remember that every journey also has a beginning. I’m aware that there may come a day when Mum no longer recognises me, but there’s little point dwelling on what will or might happen. For now, we’re determined to live in the present, finding joy in each and every day.