Wendy Mitchell was 58 when she was diagnosed with early-onset Alzheimers. She began to write about the experience of losing herself, and the result is her remarkable memoir, Somebody I Used to Know, which shares the heart-wrenching story of her cognitive decline and how she fought to stave it off. Here’s an extract from her book.
Words are often lost now. Images are my way of remembering. If I have a conversation, or meet someone new, I probably won’t remember the detail of what we discussed, just the feeling I had when I left them. When we meet again, I’ll have that same feeling. It’s almost like intuition has taken over from the working, practical brain I once had. Those basic instincts have returned.
Do I feel happy and safe here? I sense people’s moods too; it’s almost like I sense an aura of emotion around them, my brain plugging into the bits it can remember, rather than the overwhelming detail that it won’t.
I have to work harder now at being a good friend or a mother. I don’t want to give up thinking about others – it just takes a little more organisation. Where before I would have juggled what was going on in their lives alongside my own, remembering in the back of my mind if a friend was going through a hard time, or if Gemma or Sarah had a problem at work, now I have to write it down on a Post-it, or set an alarm on my iPad to ask how they’re feeling days later.
I scan the last email or WhatsApp conversations for things we discussed the day before, so I can ask Gemma how her night out with friends went, or if Sarah managed to fix her car, or if Billy’s paw is better.
Today I got a text from my friend, Julie. Still waiting for news on my new grandchild, she wrote.
Wonderful! I typed back quickly. I was so excited. I’m so happy for you.
Yes, the baby was due last week, but hoping it will arrive in the next few days. I stared at my phone. The baby was due now. I knew Julie well enough to know she would have mentioned it before – several times – and yet it had felt like hearing it for the first time for me.
It’s not just bad news we forget – it’s good news too.
Too often people think about those of us with dementia forgetting that a loved one has died, of grieving over and over. But the flip side is we can celebrate good news again and again too.
Of course, Julie enjoyed another chat about the baby. Perhaps it’s not so bad sometimes to live in our moment, whatever that moment brings.
People say to me, ‘You haven’t changed.’ It’s probably more to do with what they were expecting, what they had prepared themselves for.
When friends come to visit, in those first few moments after I open the door I see the way they look at me. They think I don’t know, but their faces show that uncertainty, quickly working out how to gauge the situation and how different I might be from last time.
Likewise, I see their shoulders relax, the lightness in their voice return, when they realise they haven’t anything to worry about, it’s still me inside.
Some friends said recently: ‘You haven’t changed at all since last year – you look the same.’
Perhaps that’s what they think I want to hear. Afterwards I thought that I should have asked: ‘Just a few more grey hairs and wrinkles, eh? What should I look like? What did you expect to see?’ What is my response meant to be to this comment?
There is so much I could say. I could talk about what I do every single day to stave off the symptoms of my dementia, to outwit a disease I know ultimately will win, buying myself some time. That I tire myself out in a world that is not made for me nowadays, that is confusing unless I’m well prepared each time I step outside my front door.
Are they expecting the rapid deterioration that you see in some?
I am convinced this is often due to ‘writing people off’ post-diagnosis. I have to work so hard for people not to notice these differences, because if they do, I don’t want the pity that they hand out alongside those realisations.
Friends don’t see what I see: that I can’t walk like I used to because dementia has changed my gait, that I’m more prone to falls, that I need a stick. That even on a walk around the village I have to stop to let people coming towards me pass, otherwise I get confused about which direction to walk in.
A walk in the Lake District that would have taken two to three hours a few years ago, now takes five. I find it frustrating that I can’t zip up and down fells and over rocks like I used to. It’s not age that has slowed me down, but dementia that has slowed my brain. I’m slower, I’m wobblier, and I have the bruises all over my arms to prove it, but I roll down my sleeves and I get on with it.
They don’t see that the condition of my teeth is deteriorating because I forget to brush them twice a day, that the dentist has come up with tips and tricks to help me, suggesting a laminated brushing chart by the sink to tick off morning and night, an alarm in my iPad to remind me to brush, playing my favourite song so I don’t get distracted and wander off before I’ve brushed them for long enough.
They’re good ideas, but I feel like a child.
I haven’t mentioned to my friends that my brain is no longer able to make a simple decision like it once did, that the other day it took me over a week to work out how to book a train ticket on my iPad, taking in three changes and organising seat reservations. That if I don’t book a train ticket in a while, I completely forget the process and wonder how people buy a ticket when they want to travel.
I want to give up then, when my brain rings inside with frustration. It would be easier, too. But not if I want to win one day after the next, not if I want to stay one step ahead of this disease.
But it claims minor victories every day.
I can’t use the telephone any more: the person on the other end – especially if they don’t know me – wonders why silences fill the spaces between us, and I find myself giving a random response, just to give them something.
I agree to things, knowing that saying yes will bring the conversation to an end. Callers speak too quickly, ask too many questions, and so now, if the phone rings, I just stare at it, too weary for the confusion that will follow if I lift the receiver. I allow the answerphone to speak for me, asking the caller to email me.
The other day Sarah and I went to the garden centre and decided to have a bite to eat while we were there. The choice of sandwiches was dazzling, all sorts of fillings, and yet I looked down at my tray as I went to pay and realised I had the same as always: tuna. Why is it always tuna? Every single time. Because anything else is too stressful, I know I like tuna and so I choose that, and I tell myself that I am in control, that I am choosing tuna to avoid the stress of having to make another decision.
But who am I trying to kid? That’s not me in control – it’s dementia. It’s just seduced me into working with it, not against it.
People have looked at my blog and questioned how I can possibly have dementia. They wonder how someone with a diseased brain can possibly write so fluently. I’m thankful that part of my brain isn’t broken, that while words lose themselves on their way out of my mouth, the written ones make it on to the page before it’s too late.
It’s sad when the things you continue to do make people question whether you have dementia. They’re not inside my brain to hear or see the hallucinations. Would it make them feel better to see me on a foggy day, the type where I curl up under my duvet and hide away from the world?
Would that make the disease fit better into the pigeonhole they’ve allocated it? I’m pleased that I have broken the mould by challenging myself while I still have the chance, but how much more difficult does that make my life because those around me don’t see this invisible disease?
‘You haven’t changed,’ they say. But I used to run and cook and bake and work and drive. I survive now by adapting, by focusing on what I can do. But I don’t recognise me, the person who was so fiercely independent and yet now has to accept help. I do what I can.
I potter in my daughters’ gardens because it makes me feel useful; I watch seeds flourish and thrive and it makes me feel happy. I enjoy eating the food that they make for me because I can no longer cook for myself. I limit my time with my friends to two hours because anything else will leave me foggy and unable to concentrate, but this way, at least, I can still see them.
But there are other times when the difference between the old me and the new me hits me so hard it leaves me without breath.
I’m using WhatsApp with a friend, and our conversation has bounced back and forth for most of the afternoon. We’ve been chatting and joking, not a second’s hesitation, my dementia brain hidden by technology. Ten years ago instant chats wouldn’t have been possible.
We haven’t finished our chat when the iPad rings: Sarah is trying to FaceTime with me. The red and green words – decline or accept – appear on the screen. I panic inside. If I answer now, I’ll forget to say goodbye to my friend on WhatsApp, and so I wait for the ringtone to stop, and end the other conversation. I call Sarah back, her face appearing as always, bright and sunny.
‘Hi Mum, how are you?’ I go to speak, expecting the fluent me who has been zipping instant messages back and forth. Instead, something else happens. A stammer, a hesitation, that search for the right word.
When I do say hello, it’s with uncertainty. I sound almost childlike. ‘H-hello. Good … th-thanks.’
Who is this? Who am I?
Sarah’s tone changes, an unmistakeable difference only a mother would pick up on, and our conversation lasts only a few short minutes. We hang up and the screen goes blank. I see my reflection in the screen, the stranger who now inhabits me. I look back at the WhatsApp conversations, the old Wendy, the one I knew for fifty-eight years.
But this one, she is an intruder. I am not used to the two versions of myself crossing paths, but it had felt that, for a split second, they had met one another.
There is a fleeting thought. Can I go on? I extinguish it before it ignites. I know this control I have over my disease is an illusion, a trick I use to get through each day. My friends’ kind words are ringing in my ears – you haven’t changed at all – and yet some days it feels there is little of me left.
Somebody I Used to Know by Wendy Mitchell is published by Bloomsbury ($24.99) Out now!