In an exert from her moving memoir, Somebody I Used To Know, Wendy Mitchell describes what it’s really like living with the diagnosis of early on-set dementia.
I lost yesterday. I don’t know what happened to it. People often ask me what it’s like to have dementia on a bad day, but it’s hard to remember; it’s like I’m not there. Perhaps I don’t want to acknowledge the days when Alzheimer’s wins, when I go to bed and pull the duvet up over my ears because nothing about the world outside of me makes sense.
It’s like floating in and out of consciousness: one moment the world is in focus and I know exactly what I’m doing, the next it means nothing at all and I can’t even say what I’ve just done. On those days I can feel the disease in my head, like it’s eating away at all that is good in there, claiming more brain cells for its monstrous mission, stealing memory upon memory.
On those days my head feels fuzzy and inflamed, as if it doesn’t belong to me – and it doesn’t, it’s given over to the disease. I heard an analogy in a Dementia Friends session once, that the disease is like taking your Christmas tree lights out of the box each year; you unwind and untangle them, plugging them in to check for loose connections, and along the wire some tiny bulbs flash on and off, some don’t come on at all, but you can’t predict which ones are missing, the fault on the line, when or where it will occur.
On bad days, there is a fuzziness, similar to the way the picture on the telly looks when it starts to break up, making it harder to decipher. A fog descends, confusion reigns and there is no clarity from the moment I open my eyes. Where am I? My own handwriting on the notepad beside my bed is a mystery, the words written by a stranger who slipped away while I slept.
On those days there is little in my brain to help me through; it’s as if it’s been emptied overnight in my dreams, rebooted and restored to factory settings.
Every day the alarms set on my iPad and in my phone remind me to take my medication. A simple task, something I do every single day, twice a day, and yet on bad days the alarm rings and it’s as if I’m seeing it for the first time. Every single time. If there’s no alarm, the task doesn’t exist.
On those days, there’s a feeling I can liken to a fine necklace being all tangled up. I sit there for hours, trying to untangle the knots. To make my brain work hard to tell me the simplest of things. What day is it? Have I set any reminders on my phone? Laid out any clothes that will give me clues?
If I’m feeling calm, I can sit there patiently and untangle the necklace, working out the reality of the day, or simply waiting for the fog to lift. but if panic rises in my throat, if it gets a hold of my heart, making it beat stronger and faster and louder, if I give in to it, then I become impatient with this metaphorical necklace and it takes all my strength not to throw it all over the floor, scattering thoughts like beads.
The key is always calm thoughts, waiting, looking at anything that distracts me from the fog; photographs in my memory room, a smiley face, a hill, a lake, a daughter.
It’s not just what I can’t see or fathom, it’s what I can see, too. What I think is real, but is just an illusion designed to trick me by a brain gone awol on days like that. One morning I came downstairs and looked out at my back garden. My shed had gone; there was a blank where it once was, just a concrete base.
Instead, a carpet tile lay on the fence. Perhaps it was the way the assailants hauled it out of my garden, my logical brain tried to reason. but then something cut through, more logically: a shed can’t disappear. Can it? I could have panicked then. I could have called the police and registered the crime. But instead I looked harder, wondering whether my mind was playing tricks on me. Instead I told myself I’d go back in 30 minutes; if it still wasn’t there, I would know it was real.
Later, the shed was there, of course it was. But this kind of thing happens a lot. There are sounds too. I have sat in my living room, relaxing in my chair, and the sound of gunshot has gone straight through me.
I sit up in an instant, an ice-cold tingle shooting down my spine, my heart racing hard. But when I’ve looked outside and searched the streets for people fleeing, a road scattered with bodies, there has been nothing there, just folk going about their business. the gunshot nothing but a temporary short-circuit in my head. Just like the knocks on the door when no one is there.
I’ve learned to sit quietly on those bad days. I’ll sit and watch the birds come and help themselves to breakfast in my garden. their reliability brings normality to these confusing times. I can’t always rely on what I can see or hear. Whatever I’ve seen is not always there; whatever I’ve heard doesn’t always sound like that. don’t panic, just wait; it’ll be ok. logic has to win the day.
The one thing I remember about bad days is that I tell myself tomorrow will be better. It’s not me: it’s this cruel disease invading my head. At least I can still decipher the good days from the bad. I do wake up and wonder, Which me am I today? but at least I can still tell the difference, that’s something to be thankful for.
I’m back on Tanner Row to return to the support group, and this time I find the café easily; the me who was last here helpfully circled the place on the map in biro. There is no fear or hesitancy as I walk in this morning, I might not remember the faces around the table, but I remember that I felt very relaxed around them. This time, as we sit around the table, we decide we want to come up with a catchy name for our group in the hope it will attract others.
Many of us around the table make suggestions – all the usual culprits, those of us who are always first to speak up and now I include myself in that. I’ve found that saying ‘yes’ suits this new me, that being part of something, of decisions, of offering opinions, feels good inside.
We’ve had one other meeting in between this and the first one, and I spoke up more then, but the lady I’d noticed before, the one who sits quietly, watching her hands in her lap, didn’t say a word. She’s here again today, though; perhaps she just likes the sense of being included. I can understand that.
We offer suggestions from each side of the table, brainstorming and going backwards and forwards, and then a tiny voice speaks. we all look up.
‘How about Minds and Voices?’ the usually silent lady says.
‘I like that,’ I say, and pride fills her face. I recognise in her a sense of achievement, of her heart filling with that feeling of being relevant in the room again; she grows in her chair in front of me. Unanimously deciding to name the group York Minds and Voices, we come up with the strapline then: ‘opening minds and moving forward’. That sums us up perfectly.
Somebody I Used to Know, published by Bloomsbury, is out now priced £16.99.