Author goes public with what is usually a private battle after diagnosis of early-onset Alzheimer’s disease at age 58
Wendy Mitchell has had her share of challenges.
As a child growing up in England she struggled academically. In college she found it difficult to make friends.
After her marriage ended, she struggled with loneliness as she worked two cleaning jobs to support two young daughters.
By nature a self-sufficient person, she put a smile on her face and dealt with those challenges on her own.
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In her 30s, she talked her way into a better paying job, first as a hospital receptionist and then as a non-clinical team leader with Britain’s National Health Service. She worked hard, learned fast and was a valued employee. Her children were thriving. Life was good.
When she was diagnosed in 2014 at age 58 with early-onset Alzheimer’s, she realized that she was in a unique position to show the world what dementia looks like. But if she was going to do that, some things would have to change.
“I have always been so private, so protective of sharing anything personal,” she writes in her 2018 bestseller, Somebody I used to know, “yet I know that by sharing, I can change opinions, I can shift the images instilled in people’s minds of what it’s like to have dementia, like the elderly person in a bed, the same pictures that flooded my own brain when the word had been first mentioned. I can show that dementia has a beginning and a middle, as well as an end.”
Many people, even people in the health-care system, were prepared to write her off. She received her diagnosis with no suggestion of ways of dealing with it, of making the best of the cards she had been dealt. With no hope.
Wendy’s message is that there still can be hope
In an e-mail interview, she said that she had had a stroke previous to her diagnosis with dementia.
“I was diagnosed on the 31st July, 2014. I may not have much of a short-term memory, but that’s one date I’ll never forget. Well that was the reason I was diagnosed with mixed dementia — Alzheimer’s and vascular, although no one told me that until I saw it on my notes some time later.”
As far as she knows, there is no family history of dementia but, “it’s very rare for dementia to be hereditary — far rarer than people think.”
Five years after her diagnosis, Wendy is taking part in dementia research. She’s travelling around Britain speaking at conferences, encouraging dementia patients to set up support groups and generally being as “out there” as she can.
She lives alone. It is easier in many ways, she says.
“I’ve always said it’s an advantage that I live alone. Sounds bizarre, probably, I know, but living on your own means that there’s no one there to move things around. Because if you move something, to me, it no longer exists or becomes confusing if I find it in a different place. So consistency and routine is very important for people with dementia.”
She plays solitaire and scrabble online daily. In her book, she talks about getting up in the morning feeling foggy but feeling better, clearer, after her morning routine of scrabble and solitaire.
“I’m a great believer in keeping my brain active through all the events, talks and research participation,” she says. “All of us who remain involved remain capable for longer. As soon as people stop doing those things and stretching themselves they decline far quicker. We’ve seen it happen to so many of our friends. They’ve thought they’ve been doing themselves a favour when the opposite has happened. With dementia, if you’re encouraged ‘to do,’ that ‘doing’ helps fight dementia for that day.
“I’m not saying it’s easy. There’s nothing more comforting with dementia than sitting with your eyes closed but that’s dementia lulling you into that false sense of comfort. It happens to me all the time. But when I just sit, and close my eyes, within no time at all, I can feel dementia seeping into my brain. That’s why I understand many (care givers) who say, ‘yes, but my husband just wants to sit.’ It really is wonderful, but I’ve still got enough intuition to know how bad it is for me.
“I always say I’d rather die of exhaustion than dementia and it always makes me sad to see people just sitting for any length of time because that becomes the norm and becomes wonderful.”
She also gets lots of exercise walking around the English village where she lives. She knows when her body needs to rest; when she speaks at conferences she chooses to speak in the morning rather than the afternoon. She sets up reminders for appointments, her medications and other things on her iPad.
Advice to others living with dementia?
“Don’t dwell on what you can no longer do, don’t dwell on the future (but talk and make your wishes known while you’re able) because you have no control over either. Instead, enjoy today and enjoy the moment. If today is a bad day, then tomorrow may be better. And finally, never give up on yourself — there will be many others around you who will be all too willing to do that for you.”
For people caring for people with dementia she says, “don’t disable them before they’ve lost the capacity to do something — for the kindest of reasons people often do something for the person, often simply because it’s quicker, but if we don’t do something day after day, no matter how long it takes, we simply forget and lose that ability altogether far quicker; then you have to do that one thing for us forever more.
“Sometimes it’s a matter of helping us to learn new ways. I find slip-on shoes easier now — so having slip-on shoes means I can still put on my shoes. Dementia strips away so much from us that any small bit of independence is important. My motto has always been, ‘there’s always a way.’
“I’m not downplaying the daily struggles we have, and some days are really rubbish, I’m just saying there’s usually a way to make it calmer and less stressful for both parties.”