A lady has told of what it’s like to live with dementia at the NACC North Summer Seminar, reports Amanda Woodvine, chief executive of Vegetarian for Life.
“Billy pads into the kitchen, performing a tiny dance in front of my feet before he finds the patch of sunshine on the kitchen tiles,” began guest speaker Wendy Mitchell to a captivated audience. “He flops down on to it while I scratch the back of his ears and he purrs his approval. I shake some biscuits into his bowl and he gets up and crunches on them noisily. He’s only allowed a few, as Gemma has put him on a diet. She’s not sure why he’s put on so much weight recently; even the vet commented on it.
“I make myself a cup of tea, and as the kettle boils I feel Billy’s tail curling around my legs. I glance at his empty bowl.
“Oh Billy, have I forgotten to feed you?”
The setting was the NACC (National Association of Care Catering) North Region Summer Seminar in Doncaster this June, where around 100 delegates had gathered to learn more about advances in dementia care and mealtimes.
Wendy was aged 58, working full-time in the NHS, when diagnosed with young-onset dementia.
The diagnosis came in 2014, when Wendy was living alone in York, and was bizarrely a relief -¬ the end to uncertainties. Wendy had previously thought that she had a brain tumour.
Since her diagnosis, the mother of two describes herself as having “been taken over by a gregarious alien” – ¬ one that is on a mission to get people talking about dementia and reduce the stigma surrounding it.
An articulate speaker, Wendy is clearly carrying out this calling well.
“Every day is a different day,” she told the audience. On a bad day with dementia, a fog descends on her brain and she can make little sense of the world around her. On those days, she wonders, “What day is it?” and “What am I supposed to be doing?”
Wendy gives the analogy of learning to drive:¬ dementia means that she must consider the activities of daily living step-by-step. She therefore describes living with the condition as “exhausting”.
While people with dementia have many things in common, their experiences are different. Wendy describes dementia as a string of fairy lights in the brain, each with a distinct function. These lights flicker on and off in a particular way for each individual. When a light fails completely, that function of the brain just stops and is lost. Different fairy lights fail for each of us. Therefore some people with dementia can cook, but some can’t. Some can type, and some can’t. Wendy’s loss is the ability to cook and feel hunger ¬ – saddening because we show our love through food. She can no longer coordinate things when cooking, and therefore ends up burning everything.
But Wendy finds eating out stressful, too, and hates options: “I will remember either the first or last option that the server said, and will pick that.” And she has totally gone off meat -¬ eating it “requires serious concentration”.
Like many with the condition, Wendy’s sense of taste has been affected. She no longer enjoys her beloved Yorkshire tea, which now tastes like…swede. Wendy has experimented with different milks and tea bags, but to no avail.
Sharing her experiences on her blog, aptly called ‘Which me am I today?’, revealed that this might be common. One blog reader agreed, poignantly commenting: “I’ve never found anything to replace the comfort of tea.”
Adapting to a new life with dementia
Ever resourceful, Wendy has made adaptations to help her to live positively with dementia. The use of no-tie shoelaces, for example, means that she can don her walking boots without confusion.
At home, Wendy had been confused where each door led, which she solved simply ¬by taking the doors off. Her wardrobe doors posed a similar problem. Wendy had been frowned upon by her daughter for wearing the same clothes, day after day. But Wendy simply couldn’t distinguish her wardrobes in order to open them. Wendy’s novel remedy was to photograph cupboard contents and stick them on their doors. The photo, she explains, is enough to attract her attention to open the door. Contrast is the key to vision. If there is no contrast, objects cannot easily be seen and differentiated.
Wendy advises: “Take a black and white photo of things to see what the contrast looks like.”
Large televisions mounted on walls can be a source of visual confusion, according to Wendy. “When switched off, they can look like a wall to some people.”
Wendy regularly frequents a bed and breakfast in the Lakes. During a recent stay, she was heartened to find a red pillowcase covering the TV in her room. It had been installed by the B&B¹s owners after reading Wendy’s book.‘Somebody I Used to Know’ was written alongside author and journalist Anna Wharton, and released at the beginning of 2018.
Wendy began writing a blog soon after her diagnosis, to diarise her “new life” with dementia; the blog was invaluable when it came to writing the memoir.
If today is a bad day, tomorrow might be better
Wendy rarely dwells on losses that dementia has brought her. The positives? It has led to amazing friendships, and the release of her book.
Even living alone is a comfort, because moving things around leaves her confused.
Dementia research keeps Wendy’s brain active. And she advocates encouraging people living with dementia to “do”, rather than have things done for them.
“Every day of our lives, we make a decision. I enjoy today, and speaking at events like this. If today is a bad day, tomorrow might be better.”
Said Wendy, after her talk: “The organisers of this amazing seminar tried everything they could to make it easy and good practice, and they succeeded. I had the most wonderful day, and me and Lola the therapy dog were exhausted by the end of it ¬- even though she slept and snored through my talk. Don’t mention Lola to Billy [my daughter’s cat].”
Wendy Mitchell’s bestselling memoir, ‘Somebody I Used to Know’, is out now (Bloomsbury, £8.99). You can also visit Wendy’s blog, Which me am I today? at https://whichmeamitoday.wordpress.com/
Presentations and other information about the NACC North Region Seminar are available at www.thenacc.co.uk
The NACC North Region Winter Seminar will be held at Wrightington Hospital in Lancashire on 26 November 2019, with the themes Innovative Menu Planning, and Smiling Matters: ¬Oral health care & nutrition.