How I told dementia to take a running jump
A thrilling skydive. A garden of memory-provoking f lowers. The scent of her daughters’ first school shoes. And a dogged determination to live alone. In an inspirational new book, a best-selling author reveals...
A FIT and healthy NHS manager,
WENDY MITCHELL showed the first symptoms of dementia aged 56. After being forced to give up her job, the divorcee with two grown-up daughters wrote a deeply moving book about living with the disease. Her heart-breaking testimony made it a best-seller. Now, four years after that book and with the help of a ghost-writer, she has written an inspirational follow-up which shows that not all is lost when people lose their memories.
I’M SITTING in front of my GP with a piece of paper in my hand. ‘I’ve got a little favour to ask,’ I say. ‘I need your permission for something.’ I push the paper across her desk, and watch as her forehead creases with confusion. ‘You’re going to do a skydive?’ she says finally. She rolls her eyes, shakes her head, and with a smile curling at her lips, signs the paper. Whenever I spoke to people about this madcap plan, there was always a pause as disbelief collected in their eyes. I wonder why there is so much risk aversion. Dementia or not, my quality of life is as important as the next person’s and I want mine to be filled with experience and adventure. Why wouldn’t I?
Shuffling towards the open door of the plane, at 10,000ft, the rush of cold air hits me, stealing my breath away. And then we jump. We are freefalling down to earth and I am smiling wider than I have ever smiled before. If this is not freedom, then I don’t know what is. Up here, there is no dementia. Up here, that disease does not inhabit my brain. I am flying, free from all that binds me to the earth.
WHEN I was diagnosed seven years ago, it was July but it may as well have been winter. I could only see the metaphorical leaves of my own tree stripped bare, that all that awaited me was black nights and cold, monochrome days.
I know some people stay there, in the darkness of their winter, resigned not to see the signs of spring after a diagnosis of a progressive illness.
For animals, winter is a time for hibernation – perhaps that’s what those same devastated people are doing as they retreat into themselves. I know I did for a while.
But in times of struggle, there are always lessons to be found in the world around us – even if that is only in my own back garden in East Yorkshire.
I see it every morning and afternoon on the trundles I take around my village. I see that the waxing and waning of the seasons are necessary, that they stand as a reminder that there is nothing more natural than change, that it is not something to fear or avoid. Instead it is something to face head-on, to respect, to embrace.
I could stay inside with only this disease for company while I wait for sunnier days, but then I would be missing out on so much.
Spring is a reminder that there is always tomorrow, or next week, or next year.
That a foggy day might be followed by a clearer one, that hope still flourishes after life changes, even if it looks a little different from the way it did before.
Dementia reminds me I have nothing but this moment. My daily trundles are my moments of mindfulness; with a camera round my neck, I search my surroundings for something to capture on film – a moment that might be lost seconds later, if it were not for this digital memory.
LIKE so many things in life, our sense of smell is something we take for granted. And yet it is always there, cataloguing special moments in our minds. Years later the same perfumes will come to us at random, steaming open the envelopes in our minds and spilling the contents.
Like tiny bubbles rising to the surface in a pan of boiling water, memories can still surprise even those of us who have a disease that steals them.
My mum loved roses and our garden at home was filled with all kinds of varieties. My favourites were the ruby-red Ena Harkness and the sunshine-yellow petals of the Peace rose, the edges pink as if tinted by the sun.
That memory, preserved by my nose, remained so strong that I tried to recreate it. By then the name of my favoured roses had escaped me and I knew my wobbly gait would mean I could no longer bend to bury my nose in the petals.
Even so, I planted bushes of deep red flowers along my pathway, knowing that each time I brushed past them the scent would rise to greet me.
Each summer as the scent drifts up, something about it makes me feel safe and happy, reminding me of a different time. It’s not just flowers that have that effect. It’s the smell of leather, the scent of my daughters’ first T-bar shoes, which I keep in a box.
These treasures are kept in the spare bedroom of my home in East Riding (where I still live alone without carers) – the place I call my memory room.
It is filled with so many photographs and says as much about me as the blood running through my veins – especially on the bad days when I lose my grasp of who I really am. It’s where I go when I need to sit and feel calm, surrounded by the people and places that have made me so happy. I’ve only to open the lid of that box and I’m there again, encouraging tiny feet into scuffed red shoes, out of the door and on the way to school.
Those memory boxes are stacked three high now. I started with only one, but the panic of forgetting makes me more inclined to save even the smallest thing. A string of photos of my daughters, Sarah and Gemma, when they were young smile at me, the happiness written bright across their faces.
One foot inside this room grants me my history. In a second I can feel like a child again, or a new mother, a single mum, or a proud one when I glance at my girls’ graduation pictures.
I remember who I am, and I don’t need to close the door to keep dementia out.
Apart from with my daughters, I was never a very tactile person.
I don’t want my daughters to be my carers. I want to always be their mum
Dementia changed that: suddenly I found myself wanting to hug everyone I met, or at least the people who I knew by instinct that I liked. I suddenly found myself hanging on to my daughters for longer and harder.
Was it lost inhibitions that were to blame? A new neediness I hadn’t been brave enough to admit to? Or perhaps a hug represents an inner emotional reserve: maybe
touch cuts through moments when words grow complicated or hard to find, instantly communicating that someone cares.
Perhaps the reserved, pre-dementia me, who’d been let down in life by men, didn’t want to feel touch again. But when dementia came along, that fear of being hurt again vanished, suddenly insignificant.
During my fogs, a hand on mine is such a relief. There is no need for words.
IT MIGHT surprise people that I feel I am better living with dementia alone. I don’t have someone rushing me or questioning. My brain can’t work quickly, so the worst thing anyone can say to me is: ‘Hurry up.’ It prompts panic, confusion and a sense of failure. But living alone, I can go at my own speed. I don’t have someone questioning why I can’t remember.
‘Do you remember…?’ ‘You must remember.’ The constant twist of that knife.
I don’t have to give excuses for my actions. I can get things wrong and there’s no big drama. I can come downstairs in the morning and find the bowl of food I warmed the night before still in the microwave. I simply scrape it into the bin and wash the bowl.
If someone else were there, they might be concerned that I’d missed a meal, or about the waste, or the mess. No matter how long something takes me, it’s always better to keep trying to do it myself. Dementia strips away so many tiny moments of independence that keep us feeling human, the last thing we want is to lose them all.
Living alone, I have to find a way around the challenges of my dayto-day life. It’s that determination to keep finding solutions that helps me outwit dementia every day. When people ask me how best to navigate relationships after a dementia diagnosis, I have only one answer: keep talking.
My daughters know I don’t want them to be my carers. I want to always be their mum, in whatever way that is possible. While dementia accelerates the process of rolereversal, I do my best to avoid it.
One day I was pegging out my washing and thought of my daughter Sarah in her flat, who was working extra shifts as a nurse. I asked her if I could do her washing every week, so that’s what I do now.
By stepping back and not jumping in to help me, she allows me to live a more independent life and for that I am grateful. It gives me my life back. There is no greater gift than that.
THE way I speak now is not what it once was. My mind flashes forwards sometimes, mostly in nightmares, to a time when I might not be able to say what it is that I want.
I hope the bonds of love that have bound me and my daughters so tightly, since the days they sat up in their high chairs and told me stories that I tried so hard to understand, will serve me well in those later stages. That when the time comes, my daughters can read from my eyes what I want and need. I’ve found writing my blog was an escape from the roadblocks in my mind. For some reason, the frustration with words didn’t exist between my mind and the page.
At the keyboard, I didn’t stumble in my search for a phrase; the process of my fingers dancing across the keys meant the words came more fluently.
It makes me feel calm, and closer to my thoughts and feelings.
My iPad and iPhone are my door to the world now, my constant companions who never leave my side. Every week I have a girls-only Zoom meeting which provides much comfort and support. My phone is constantly pinging with reminders, like remembering to eat or to check on a friend. I have apps that make life calmer and easier to navigate. Thanks to my train app, my love of travel has remained unhindered because it sends me alerts if my train is delayed and lets me know which platform I need.
Alexa is another best friend. She reminds me to take my medication, switches the lights on and can boil the kettle for me.
Sometimes she doesn’t understand my stammering commands if I ask her to switch the kettle on and she gives me the weather forecast instead.
‘I’ll just do it myself, shall I?’ I say, rolling my eyes.
Technology can be a blessing, as well as a curse.
I am often asked to try new products that those keen to tap into the ‘dementia market’ think we might find helpful. On one occasion I was asked to try a tracker watch.
It arrived looking stylish but, sadly, was confusing to set up. Once I set off with it, things got worse. ‘What are you doing in Southampton, Mum?’ came the text from Sarah.
‘Eh? I’m in Birmingham,’ I texted back.
A 150-mile hiccup, we thought. I was then spotted in Yangzhou, China. I’ve always wanted to go, but never thought my bus pass would get me there (and in reality I was in Milton Keynes).
Sarah watched from home as my Asian tour continued to Japan. It was time to give up.
When a new shopping centre in Leeds opened, I was so excited to visit. The flagship store was John Lewis, and I was instantly transported to the one I used to go to with my mother when I was little. It had a restaurant inside, and all the staff dressed in old-fashioned black waitress uniforms, their frilly white hats matching their starched aprons, serving tea in china cups and saucers out of a shiny silver teapot. It may as well have been tea at the Ritz for me as a small child.
Gemma drove me there one day, and we arrived at the large,
My phone pings with reminders to eat or check on a friend
gleaming building with automatically opening doors.
But it was then that I came to an abrupt halt. The marble floor was a polished black ocean of grey swirls that looked like waves. My head was already spinning and I felt nauseous before I’d even taken a step inside. Gemma looked round and saw me static at the door.
‘The floor looks like water,’ I said, and she took my arm as I managed my first tentative step inside.
As we walked along, I had to stare straight up at the ceiling to avoid feeling sick. I’m sure it looks aesthetically pleasing to many, but for me – and others with dementia – it was a total nightmare to navigate.
DEMENTIA can be cruel in so many ways, yet every so often it hands us a gift in a most unexpected form.
It was a bright day in the garden, the sun streaking long shadows of the fence across the lawn, when through the glass of the double doors something caught my eye. The unmistakable shape of a man standing in the middle of the lawn – my father.
By then he must have been dead 20 years. He was wearing his familiar baggy green cardigan, his happy, casual clothes he wore to potter in his own garden shed, and on his face was the same relaxed smile.
A tip of mine for visual hallucinations is to take a photograph of what you think you can see, and if it’s in the picture, it’s there in real life. In that moment, I didn’t want to break the spell. He stood just looking at me, his hair styled with Brylcreem, his hands hanging by his side, even the yellow of his nicotine-stained fingers visible from this distance.
I don’t know how long we stood there. It could have been minutes or hours – dementia has a funny relationship with time. The logical part of my brain knew it was not real.
That day, instead of frightening me, dementia blessed me. I looked down at the cup of tea cooling in
my hand and when I looked up again, he was gone.
Perhaps if professionals concentrated more on what we can do from the start, our lives would be so much more hopeful from the point of diagnosis.
When I was told I had dementia, the image that appeared in my mind was a white-haired old lady in a hospital bed. I looked in the mirror; that wasn’t me.
We don’t notice the insidious effect of language and images we come across every day through society or the media. It affects not just public perception but that of professionals, too – perhaps that’s why they present dementia at diagnosis as something terminal that can’t be treated, rather than focusing on it simply as a new way of living.
BUT seven years on, not much has changed in terms of how I’m spoken to by professionals.
It feels as if those of us with dementia have learned a lot more than doctors and nurses have.
For this reason I don’t even attend my assessments any more: who wants to be told that they’ve deteriorated but there’s nothing that can be done?
It would be different if they voiced it in a different way, perhaps: ‘It seems you’re finding this area more challenging now but let’s see what we can put in place to help…’ but they don’t.
For so long, professionals used negative words to describe us, simply because I think they didn’t know how to react. If we’re continually referred to as challenging or disruptive, then it will affect us in the same way.
Disrespectful and offensive language more often than not leads to substandard care.
I can understand how that would be a frightening prospect, especially in a care home where you are so reliant on others. How we behave when communication is difficult often isn’t our fault.
If someone is giving you coffee when you only drink tea and the only way of showing that dislike is by throwing the cup on the floor, that’s the only way.
That is indicative of an unmet need, not difficult or challenging behaviour.
I heard of an ex-nurse who used to sit behind the nurses’ station in her care home. The care assistants didn’t know why she would get so cross if they tried to make her go to her room. Once they learned she used to be a nurse herself, they allowed her to sit there and shuffle papers and write pretend notes.
Or the man who used to be a milkman who was labelled as ‘disruptive’ because he got up at 4am every day and went in search of milk bottles to place outside residents’ rooms.
He used to get angry and violent when they tried to stop him, but once they found out he used to be a milkman, they allowed him to deliver milk in the early hours. WHAT I have learned most in these past seven years is not only the power of my own attitude but how that is influenced by those around me. I had less to be afraid of than I first thought. That’s why I prefer to be surrounded by positive people now, those who have a similar ‘can-do’ attitude.
The only certainty I have is the same as what everyone else has, which is actually just today.
The way we address these fogs, these short-circuits in our brains, can minimise or maximise what’s happening to us.
There is so much living to do if you – and those around you – can take a positive approach.
What I Wish People Knew About Dementia, by Wendy Mitchell, is published by Bloomsbury on January 20, priced £14.99. To pre-order a copy for £11.99 go to mailshop.co.uk/ books or call 020 3176 2937 before January 15. Free UK delivery on orders over £20.