My dear Alastair,
Being diagnosed with early onset vascular dementia is devastating, isn’t it? Believe me, I know. Nine years ago, I was in the same position as you are now, aged 71.
I was 58 when I saw in a consultant’s room and heard those words. Gut punch doesn’t even come close.
I also know what you will have been thinking in those first few hours after you were given the news. Your mind will have switched to fast-forward, imagining your future self, confused, disorientated and unable to recognise those around you. Everyone who gets diagnosed imagines something like that.
But I wanted to write to you because I have a different story to tell about living with this disease — and it might not necessarily be what you were expecting.
I want to tell you about how a diagnosis of dementia made my life better in so many ways. Yes, better.
It doesn’t seem possible, does it? I wouldn’t have believed anyone if they’d told me that nine years ago either. I wouldn’t have believed that I would write three best-selling books on the topic, be given two honorary doctorates and receive a British Empire Medal from the King, nor that I would have jumped out of a plane to raise money for charity.
So just promise me you’ll read my words and see how you feel by the end of this letter, because dementia has a beginning and a middle, as well as an end, and you’ve got so much life to live yet.
When I first went to the doctor in 2012, my symptoms were dismissed as related to the menopause, but I had a hunch something serious was wrong. I was always fit and healthy, a keen runner, but I fell over when jogging one day and had this feeling my brain was no longer talking to my legs.
It sounds similar to your experience of noticing you suddenly had trouble doing up your shoelaces or straightening your tie.
I had a busy job back then, as a rota manager for the NHS. I was known for my brilliant memory, but I’d been struggling to keep up. I’d been getting into work earlier and earlier, trying to cover for the things I’d forgotten to do, or found more difficult.
You might have done the same at first, covering up your symptoms so your colleagues in TV studios and your family wouldn’t guess. I know how stressful that in itself can be.
Is it a relief then when you finally receive the diagnosis? No, it’s devastating. When I found out, two years after the first symptoms, I fell into a deep depression.
I felt my life was over after those words from the consultant, and especially the ones that followed: ‘There is nothing we can do.’
But there is plenty you can do.
The first misconception people have is that dementia is all about memory. But there are so many other ways this disease affects us — our sense of taste, for example.
My brain tricks my stomach into thinking I’m not hungry, so I have to set alarms to remember to eat. It affects the way we see things, too — if someone’s wearing all black it just looks like their head is floating, suspended in the air. A black mat on the floor, meanwhile, or a flatscreen TV on the wall, looks like a gaping hole.
Your hearing might suddenly become super-sensitive; that’s called hyperacusis and it’s easily fixed with hearing aids, though no one tells you that at the hospital.
You might have hallucinations, too. I once thought someone had stolen my garden shed and so, early on, I adopted a 30-minute rule to see if what I was seeing was real or not, or I would simply take a photo of it. You might hear something, or smell something that others can’t.
But don’t worry, these things don’t last, and the good thing is there are ways of coping. For example, if your mind hallucinates a horrible smell, you can instead sniff something nice like some lavender oil.
I once forgot where my clothes were, or what was in my kitchen cupboards because when the doors were shut, the colours all blended into the wall, making it look like they were not there — but that’s OK, you can stick photos or a note on the front to remind yourself what’s in there.
These day-to-day challenges will come, but none of them will be insurmountable. I love walking, but there came a day when, like you, I forgot how to tie the laces of my walking boots — so my daughter, Sarah, found me no-tie shoelaces.
What is vital is that you don’t stop doing things, because if you do, you will forget.
Sometimes people, for the very kindest of reasons, do things for us, but they’ve got to let us keep doing them for ourselves. I remember just after I was diagnosed my daughters doing my coat up for me and I asked them gently to let me do it.
‘Otherwise you’ll have to come round and put my coat on for me every time I want to go out,’ I joked.
I say ‘joked’, but it was true.
I know you’ve got your lovely wife, Sally, to help you, but my advice is not to let her help too much.
I know you are already worried about her — it’s heartbreaking to see you say that the most difficult thing has been seeing your life partner and lover ‘reduced… almost to a carer’. So keep doing.
That’s how I’ve managed to outwit dementia. I see it as a game of cat and mouse each day, but as long as I keep that two per cent advantage — dementia 49 per cent, me 51 per cent — then I am winning.
And it’s not every day because there will be days where your head feels woolly, where you can’t quite connect with the outside world as if it’s behind a thin veil. But keep calm, tell yourself it will pass, that tomorrow will be a better day. While I can still think that, I know I have the upper hand.
Yes, dementia has come along and thrown a curve ball into your life — there’s not one of us with dementia who wishes that hadn’t been the case, no matter how positive we stay — but just because you’ve got a complex disease inside your brain, you are still you, you still have choices. Your biggest choice now is whether to stay positive, or let that disease win. I think you’ll choose the former.
Many people talk about their loved ones changing personality when they are diagnosed. I’m actually much more open and outgoing than I used to be, which is no bad thing. Yes, there are some types of dementia that can change people’s personalities for the worse but, sometimes, the ‘anger’ people witness is just frustration.
The way I see it, our loved ones need to learn to live in our world now, they need to see things through our eyes. They need to understand, for example, that if you put a pile of mashed potato and a piece of cod on a white plate we might not see it to eat it — it’s not that we don’t like what they cooked for us. Or it might be, eventually, that something as simple as using a knife and fork is now beyond us, so a spoon is better.
We still want to socialise but we might prefer to go out for dinner in a smaller group than we used to because large gatherings feel overwhelming. Above all, they need to remember to stop blinking moving things about in the house! For that reason, I’m lucky I live alone.
Talking is the most important thing you can do, so don’t be ashamed to tell your wife, your children and your friends what you see, what you feel, how you want the future to look — something I’ve written about in my latest book, One Last Thing.
You still have choice, you can still empower yourself in those choices, and if you tell people what they need to know now, while you remember, it’ll help them in the times when you forget.
I know that the one thing that will frighten you more than anything is forgetting the people you love. But let me tell you about two bookcases — I know it sounds strange but bear with me. One is a flimsy flatpack that stores all your life memories in the right order. Dementia messes with that one, moving things around to different shelves and it can all get jumbled up, but it doesn’t matter. People don’t always need to correct you if you get memories or words wrong.
But the other bookcase you have is solid oak. It is much more sturdy. That one is filled with the love you feel for your family and nothing, nothing, will ever shake that, so you will always feel their love and they will feel yours, even if there comes a time when you cannot name it. Though we’re a long, long way from that.
The biggest lesson that dementia has taught me has been about that most precious commodity that we all take for granted — time. We spend our lives worrying about the future and miss the one thing we have every day, the present. Don’t worry about the future now, that will take care of itself, there will be losses, yes, but there will be gains, too.
Instead, see each day as a special gift and enjoy it. You’ve still got so much life to live, you haven’t lost those skills that you had before dementia — though you might learn some new ones — and you are still you. We’re still the same people we were the day before the diagnosis, we don’t change overnight.
I’m not afraid of anything any more (I used to be terrified of animals and the dark) and so I’ve stuck two fingers up at dementia by doing a wacky challenge each year to raise money for charity. I’ve skydived, I’ve walked over hot coals, I’ve wingwalked and paraglided.
You see? You can choose whether to let dementia win. Maybe not right at the end — it is a progressive illness after all, there’s no getting away from that — but none of us knows what the future holds. You are no different from anyone else in that respect.
My advice is to do what you have always done, get hold of life by the scruff of the neck and live it. You can choose how you will live with dementia. I will be here, cheering you on from the sidelines.
I’ve met the most wonderful people with dementia. Some of those further down the line were the guiding light to show me the way. Now let me be the light that guides the way for you, Alastair.
You’ve got this.
- Wendy Mitchell is the author of three books, Somebody I Used to Know, What I Wish People Knew About Dementia and One Last Thing.