WENDYMITCHELL, a fit, healthy NHS Manager, showed first signs of dementia at the age 56.
Divorcee and mother of two young daughters was forced to quit her job. She wrote a moving memoir about how she coped with the illness.
It was a bestseller because of her heartbreaking story.
Four years later, and with help from a ghost-writer she’s now writing an inspiring follow-up that shows how memories can be relived.
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. With a smile curled at her lips and rolling her eyes she signs the paper.
Every time I talked to someone about this crazy plan, they would pause and look in disbelief.
Why is there so much fear 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?
At 10,000ft I find myself shuffled towards the doors of the plane. The cold rush takes my breath away. We jump.
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
Our freefalling down into the Earth is causing me to smile wider than ever before. If this is not freedom, then I don’t know what is.
It is not possible to get dementia from up there. I don’t have that illness in my brain. All that holds me down to the ground is gone and I’m flying.
It was July seven years ago when I was first diagnosed. But, you could have thought it might be winter.
It was only the metaphorical leaves from my tree that I saw, and all that lay ahead of me were black nights, cold days, and monochrome.
I’m aware of people who refuse to wake up from the winter and see signs of spring, even after being diagnosed with progressive illnesses.
For animals, winter is a time for hibernation – perhaps that’s what those same devastated people are doing as they retreat into themselves. For a time, I was there.
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.
On the daily trundles around my village, I can see it each morning and evening. The seasons’ changing and waxing are natural. They remind me that nothing is more natural than changes, so it isn’t something that I need to be afraid of or avoid. Instead, it’s something we must face, embrace, and respect.
While I have this illness to keep me company, I can’t wait for the sunnier days. But then again, I wouldn’t be missing so many things.
It is the reminder that spring can be used to remind us of next week, next year, and so on.
Even though a cloudy day may be followed by one that is clearer, it doesn’t mean there are no hope. Hope still thrives in the face of life’s changes.
Dementia makes me realize that I only have 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.
‘You’re going to do a skydive?’ she says finally. With a smile curled at her lips and rolling her eyes she signs the paper
Our sense of smell, like many other things in our lives, is taken for granted. It is there all the time, capturing special moments and moments in our memories.
The same fragrances may be found again years later, popping open their envelopes and spilling out of our heads.
Even those with a rare disease, memories are still surprising.
Mum loved roses. We had many varieties of them in our home garden. I loved the red Ena Harkness, which was ruby-red and the Peace rose’s sunshine yellow petals. The edges were pinkish as if they had been tinted by the sunlight.
My nose kept that memory so vividly in my mind, I attempted to replicate it. My favourite roses name had long since vanished and I was unable to bend my knees in order to place my nose into the flowers.
Even though I was unable to plant red rosebushes along my pathway, I knew that every time I crossed them, the smell would come up and greet me.
The scent of lavender makes me happy and safe every summer.
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.
WENDYMITCHELL, a fit and healthy NHS Manager (pictured), showed signs of dementia at 56 years old.
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.
Now, the memory boxes have been stacked three higher. Although I had only one memory box, the fear of losing it makes me want to keep every little thing.
Here are a few photos of Sarah and Gemma when they were younger. I love the way their smiles reflect my happiness.
My history is only a step away from me when I am inside the room. 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.
Except for my children, I wasn’t very tactile. This changed with the diagnosis of dementia. I began to want to hug people, at least those I instinctively liked. It was hard for me to let go of my girls suddenly.
Could it have been my lost inhibitions? A new neediness I hadn’t been brave enough to admit to?
A hug could also be a sign of someone’s inner emotion reserve. Perhaps touch cut through difficult moments and communicates how much you care.
Perhaps the reserved, pre-dementia me, who’d been let down in life by men, didn’t want to feel touch again. The fear of getting hurt was suddenly non-existent when the dementia set in.
My fogs are so much better when I have my hand in mine. It is enough to just touch my hand.
You might be shocked to know that I believe I live better with dementia alone. I don’t have someone rushing me or questioning.
Divorcee and her two adult daughters were forced to quit their jobs. She wrote a moving memoir about how she lived with the illness.
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. Living alone allows me to move at my own pace. 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.
It is possible to come down in the morning to find the leftovers from the previous night still warm in my microwave. The bowl is simply thrown in the garbage and washed.
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 takes away many small moments that make us feel human. The last thing we want to do is lose them all.
As a single person, it is difficult to figure out how I can get around my daily challenges. It’s that determination to keep finding solutions that helps me outwit dementia every day. #
If people want to know how to best navigate relationships following a diagnosis of dementia, my answer is simple: Keep talking.
My daughters know I don’t want them to be my carers. As much as possible, I would like to be their mother.
While the progression of roles-reversal is accelerated by dementia, I try my best not to.
Wendy is pictured in this photo with Gemma, Sarah and her daughter Sarah. She was 56 when she started to experience the symptoms.
While I was washing my clothes, I remembered Sarah, my daughter. Sarah was a registered nurse and was also working additional shifts. I asked her if I could do her washing every week, so that’s what I do now.
She allows me to be more in control of my life by allowing me to take a step back, and not jump in to assist me. I get my life back. This is the best gift I have ever received.
My speech is different from what it was before. Sometimes my mind is effected by nightmares and flashes backwards to times when it might be difficult to speak the words I need.
The bonds of love between me and my daughters, which have been so strong since those early days when they told me stories and sat in high chairs, I believe will help me in later life.
My daughters are able to see what I need and want from me when it comes time.
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.
Today Wendy is managing to live independently at her own home in Yorkshire
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 helps me to feel relaxed and more in touch with my emotions and thoughts.
My constant companions, who are always by my side: my iPhone and iPad.
Each week, I host a Zoom meeting for girls only. It provides comfort and support.
The reminders on my phone are constantly popping up, such as reminding me to eat or checking in with a friend. Apps that simplify my life and make it easier are available to me.
My train app has allowed me to continue my passion for travel. It sends me notifications if the train is late and also lets me know what platform I am on.
Alexa is my best friend. Alexa is another best friend. She reminds you to take your medication and switches on the lights so that I can boil the kettle.
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 is both a blessing and a curse.
I’m unable to get rid of the dark thoughts in my mind, so I lay awake later. Does it actually look like dementia? Are the doctors wrong?
I am often asked to try new products that those keen to tap into the ‘dementia market’ think we might find helpful. One time, I was asked to test a tracker watch.
The item arrived in a stylish package, but it was very difficult to set up. Things got much worse once I started using it. ‘What are you doing in Southampton, Mum?’ came the text from Sarah.
‘Eh? I’m in Birmingham,’ I texted back.
It was only a 150-mile problem, thought we.
Then, I was 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 was watching from her home while I traveled to Japan on my Asian tour. It was finally time to stop.
The opening of a shopping center in Leeds was a momentous occasion for me. John Lewis’ flagship store at Leeds was my first stop, as I felt transported back to the place I went to when I was a child with my mother.
There was a small restaurant in the back. The waitresses wore old-fashioned waitress uniforms with frilly white hats that matched their starched aprons. Tea was served in tea cups in silver china saucers. For me, as a little child, I could just as easily have had tea at the Ritz.
Gemma drove me there once a day. We arrived at the huge, shining building with automatic doors.
Then, I was brought to an abrupt stop. It was like a sea of waves, a black marble floor with grey swirls.
My head was already spinning and I felt nauseous before I’d even taken a step inside. Gemma glanced around to see me still standing by the door.
‘The floor looks like water,’ I said, and she took my arm as I managed my first tentative step inside.
We walked together and I found myself staring straight up at the ceiling as we went along. I’m sure it looks aesthetically pleasing to many, but for me – and others with dementia – it was a total nightmare to navigate.
While dementia is often cruel, sometimes it gives us the gift of unexpected health.
The sun was shining brightly across the lawn on a sunny day. I noticed something through the double glass doors. The unmistakable shape of a man standing in the middle of the lawn – my father.
He must had been deceased for 20 years by that point. The familiar green baggy sweater he was known for, as well as his casual, happy clothes that he used to wear when he pottered in his garden shed. His smile was relaxed and a similar color.
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.
I saw him standing there, with his long, slicked-back hair and his hands, even his yellow nicotine-stained fingers, looking straight at me.
I don’t know how long we stood there. It could have been minutes or hours – dementia has a funny relationship with time. It was real, but my brain’s logic part knew this.
This day I found that dementia was actually a blessing, rather than frightening me. He was gone when I glanced up at my cup of tea in my hands.
Professionals might be more focused on what they can do right from the beginning, which would make our lives more positive starting with diagnosis.
Lorraine featured Wendy Mitchell (author from Yorkshire) and Christine Lampard (stand-in). In 1956, her mother was diagnosed early-onset Alzheimer’s.
The image I had in my head when I learned I had dementia was of an elderly white-haired woman in a hospital room. 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.
There is a feeling that those with dementia are learning more than nurses and doctors.
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.
Substandard care is more likely when offensive and disrespectful language is used.
It is understandable that this would seem frightening, particularly in a home with so many dependents. 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.
This is a sign of an unmet desire, and not a difficult or challenging behavior.
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.
They learned that she was a nurse and allowed her to sit down and make 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.
They used to have to fight him when he tried to stop them, but they learned he was a milkman and allowed him to continue to deliver milk until the very early hours.
In the past 7 years, I’ve learned that my attitude has a lot to do with how others influence it.
It was actually less scary than I initially thought. That’s why I prefer to be surrounded by positive people now, those who have a similar ‘can-do’ attitude.
Only one certainty that I can be certain of is what others have, which in reality is 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.
© Wendy Mitchell and Anna Wharton, 2022
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.