Alzheimer’s is not a condition that you would associate with great life lessons in ageing. But living with Alzheimer’s and writing a book about the experience makes Wendy Mitchell a role model whose inspiration score is way beyond those of most of us. Her memoir, ‘Somebody I Used to Know‘, is both a tough book to read and inspiring.
Wendy captures the fears from which we all suffer: those fears that creep into your head about not feeling right. Is it a brain tumour? Am I so tired because I have heart problems or maybe thyroid? What is it that makes me fall over? Do I have a neurological disease like MS? For Wendy, it was a sudden black hole in her memory when she fell over. She felt as though she had lost herself. And in the end, the diagnosis was Alzheimer’s. Wendy was only 58.
How would you feel? What would you do if that was your diagnosis?
I started this article as a review of a book. But it turned into a full-blown reflection about how older people of whatever age cope with ageing problems. What shines from this book is how Wendy manages her Alzheimer’s condition. But the lessons she conveys are not just for people with Alzheimer’s. They are lessons about life and the experience of ageing for every single one of us.
There is Always a Way
Wendy’s motto is ‘there is always a way’. And when, at the age of 58, she heard the Alzheimer’s diagnosis, Wendy had to draw on her strength and apply that motto to a new way of life. She is still doing it, making her life as normal as possible. As she puts it, ‘the only way I cope is by being creative with my recovery’.
One way that Wendy learned early on from a psychologist is not to panic. If you wait, the fog clears, and you carry on. It kept her safe when she didn’t remember how to turn right when she was driving her car. She turned left, stopped and waited – and it cleared. That’s a good lesson for us all. Don’t panic. Pause and allow yourself time to think. There is always a way to make the most of a situation, to cope with it.
Wendy found solace in the story of an acquaintance also living with Alzheimer’s. His advice is to live life to the full and focus on the things he enjoys each day. That is another way for all of us to make the most of ageing, whether we have medical problems or not. Life is much more meaningful and happier when we concentrate on the positive things we can do today.
Outwitting the Memory Thief
After coping valiantly, Wendy eventually gave up driving and then it was her job. She had to retire. She missed work so much; the challenge, the camaraderie, the human contact. She felt purposeless – a common problem for all retirees!
She set about trying to outwit the diagnosis. She redecorated her house, but she had lost her clever skills of matching wallpaper patterns, and it ended up a mess. So instead, she made a memory room from her many photos, from the precious items she had kept down the years, such as her daughters’ first shoes.
Writing on the back of photos gave her protection against the Alzheimer’s thief in the night who was stealing her memories. The memory room became a place of sanctuary.
What a great idea! It’s inspired me to take the photos and stories from all the emails that I’ve saved and turn them into a legacy album. Wendy’s life lesson for me to make my legacy book is a great source of joy.
Do you have a way of remembering?
Volunteering for Life and Purpose
Wendy says: ‘I know I have to keep pushing myself forward, to keep volunteering, to say yes to everything, to meet new people’. She manages to do all these things by preparing for each new journey really thoroughly. It’s hard work. She does practice runs, takes photos to remind herself of what places look like, traces out routes on maps and plans what she has to do meticulously.
And look at all the things she’s done.
She loved making cakes and carved a new identity as the cake lady at a shelter. But she ended up not being able to follow the recipes she’d used for years. She found solace in the companionship and lack of judgement from the homeless.
She became a (UK) Dementia Friends Champion – the only one in her intake who has dementia.
She started a blog, ‘Which me am I today’. Read it. It’s full of life and hope.
She became involved in research through the Alzheimer’s society, working with universities and doctors. She developed a sense of purpose, a feeling of value and hope, all while coping with a lack of control. She wrote this book, gives lectures and appears on television.
She is a shining example to us all to make our lives matter, whatever our age. Making the most of our assets and using them to make the world a better place, makes our own life better right now, today. Having a purpose is vital to keeping you lively and active as you age.
What do you do that gives your life purpose? What else could you do?
Practical Life Lessons from Living with Alzheimer’s
I learned so much from Wendy about what people with Alzheimer’s or dementia need from those around them. The stages of dementia develop differently in each individual. The book is full of solutions to the very practical problems for someone living alone with Alzheimer’s.
For example, Wendy was able to keep driving for quite a while. When she could no longer drive, she found solutions. She took up riding a bike and eventually moved to a place with good bus services!
Do you worry about forgetting things? Wendy solved her memory problems by devising routines and systems to keep her on track. She meticulously writes everything down, prints out emails and puts up reminder notes to herself.
A problem that perhaps you wouldn’t think of is remembering where you store items in daily use, such as cups and plates. Wendy’s solution: label your cupboards so that what’s in there is not a surprise.
I loved the thrill she describes of endlessly enjoying the same favourite TV programmes. She could watch ‘The Great British Bake Off’ over and over again and be surprised and happy for the person who wins. Because she doesn’t remember seeing it before, it’s a new pleasure to enjoy every time.
Could you develop such a positive attitude?
Living in the Right Place
Wendy took on the mammoth task of moving house when her sensitivity to noise from the town where she lived became overwhelming. Her move was part downsizing and part future-proofing for a more suitable place to live. Isn’t that something that so many of us need to do when we’re ageing?
It was very hard for Wendy learning to adjust to the new environment. Wendy’s solution to not knowing the geography of her new home – take the doors off so that you can see which room is which.
Have you looked at your current location for future proofing it? Have you considered downsizing?
Keeping and Making Friends
It was sad to hear about the friends who melted away after Wendy’s diagnosis, at a time when you need the people with whom you’re familiar. Plus, you don’t disappear into a retirement home, condemned to drooling and helplessness, which is the image so many people hold in their heads.
Wendy was surprised at how many people have enjoyed a good life with Alzheimer’s for many years. (Me too!) And Wendy has reinvented herself, writing books, her blog, speaking at conferences and appearing on television. What lessons for us as to what we can do as we age!
Even if the person with Alzheimer’s doesn’t need your support, their partner and carer certainly do. Be supportive. Listen. Don’t give up.
Wendy has made many new friends through her volunteering and her new career as an Alzheimer’s Champion. It’s good for us all to make new friends of all ages. You can never have too many of them. But, unfortunately, you might be the one needing support soon.
Your Family is Your First Concern
I love Wendy’s stories about her relationship with her daughters as they prepared to hear the full diagnosis.
‘It’s a strange conversation, the past, present and future versions of ourselves colliding’, said Wendy.
It’s Wendy, the mother, independent Wendy, colliding with the Wendy she fears she will become, needing care. Her daughter goes from feeling bad for her mother to a more objective view from her training as a nurse. It’s a hard lesson to contemplate that there will be a time when she will need to care for Wendy rather than Wendy caring for her. Another lesson we all may have to learn.
There are many things you can do to make it easier for your loved one. For example, Wendy signed an enduring power of attorney for when she’s incapable of managing her finances. She didn’t want to, but she gave her daughters the ability to put her in a home because she loves them too much to demand that they must care for her.
The Biggest Life Lessons to Learn from Wendy
One of the most challenging problems for Wendy is the way people talk about Alzheimer’s.
Doctors say that those living with dementia and Alzheimer’s exhibit challenging behaviour. From Wendy’s point of view, the way people speak to those with dementia conditions is challenging. They don’t listen. They don’t allow the person with that condition time to take things in or to express themselves. They don’t understand that when they move something from its usual place, you don’t know where it is, that being taken away from familiar environments is frightening. Those people, including carers, doctors and nurses, as well as the general public, speak and behave in cruel ways from ignorance.
People with dementia may have bad memories or be slower to understand, but that doesn’t make them universally stupid or intellectually totally incapable. And yet, that’s how they’re treated. As if they don’t understand anything that is said at all.
They don’t ask those with such conditions what they think about better ways to manage the condition. Even the UK’s 2020 Prime Minister’s Challenge on Dementia did not have a single person with dementia on its panel. So how could they find helpful answers?
Thank you, Wendy, for your lovely pictures.
Life Lessons in Ageing Wrestled from Adversity
Wendy, living with Alzheimer’s, has succeeded in writing a book that equally hurts and heartens the reader. From the fear and pain that accompanies the diagnosis springs ingenuity and courage in managing. Through her book and lectures, Wendy points out the life lessons that can be wrestled from the world of dementia and Alzheimer’s.
But the life lessons go far beyond the diseases. These are life lessons that everyone needs to know, about ageing and illness, courage and coping, and friends and family. Wendy shows you how to make the most of the life you still have every single day. You feel the effort and courage she puts into doing all these things.
It’s changed my attitude to those who have received a diagnosis of dementia or Alzheimer’s and their carers and to my own ageing. So many life lessons learned from one lady’s way of living with Alzheimer’s.
Read Wendy’s wonderful book.
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