Somebody I Used to Know Read online

  The following morning, I arrive at the BBC and find Katie from the Alzheimer’s Society press office waiting with a smile in reception. There, too, is Keith and his wife Rosemary. I hug them both, already feeling that they are friends. There are a couple of other people with dementia there, and we’re all shown to the green room, where I notice that their partners or children fuss around them, making sure they’re comfortable, their coats are off and tidied, they’ve got a cup of tea. I notice that each of them has someone, but before I have time to dwell on that, or what it means to me, Katie presses a cup of hot tea in my hand, and my thoughts evaporate like steam.

  We’re taken down to the studio in turn, microphones are slipped under our clothes, and then Keith and I take our places on the sofa next to Jeremy Hughes, chief executive of the Alzheimer’s Society. The floor manager counts down and we’re on air.

  ‘Over the next thirteen minutes you’ll see an amazing film about living with dementia …’ Victoria says to the camera, and then I sit and watch alongside everyone else. I recorded hours of footage for Jim – not that I can remember any of it – but I knew what I had done would need to squeeze into just a few minutes. The film starts and I’m there again, back in the hospital corridor at work as I recreate that sense of disorientation; it takes me straight back to that moment, and I know if it makes me feel like that, audiences will understand better too. We watch Keith’s video, see how he counts each of the items for his bathroom routine out of a basket and back in again, to be sure he’s had a shave that morning. We see, too, how Christopher is at a stage in his disease where he can’t remember the word for moon, but it doesn’t matter, he knows it’s something beautiful in the sky, isn’t that enough? Do we really need to remember every single word as we go about our daily lives?

  The interviews are over in seconds and while Keith and I agree live TV isn’t exactly enjoyable, we know we’re making a difference with everything we agree to do or be part of.

  As we leave, Jim hands me two DVDs, one of the final recording and one of all of the hours of recordings I made. I know on there is a chat between myself, Gemma and Sarah around the kitchen table, and at some time in the future – who knows when – they will watch it and it will give them some comfort, a memory that has long escaped me.

  I leave and head back home to Yorkshire, putting the experiences of the day down to another wonderful opportunity that has come my way thanks to my dementia diagnosis. There seems nothing wrong in making a list of the advantages of having Alzheimer’s. Perhaps it might even help.

  8

  Do you remember your first day of work? I can still see you in that grey pinstripe suit, the smart white blouse underneath. You were thirty-nine then and that day felt like the first of the rest of your life. It was your best year yet. You weren’t nervous walking through those automatic doors into the physiotherapy department, just excited. Inside was a packed waiting room, and there sat your new chair behind the reception desk. For the first morning you just watched what to do, and by the afternoon you were picking up phones. It made you feel so proud being able to answer and say: ‘Physiotherapy, Wendy speaking, how can I help you?’ I can’t even use a phone now – it’s too disorientating, people talk too fast – but you would chatter back, multitasking all the time, the phone crooked under your neck while you made an appointment on the computer, smiling at the next patient waiting at your desk. These things would be impossible for me, but they were nothing to you. The phone never stopped ringing, but it didn’t faze you. You’d pride yourself on your memory, how you remembered the names of patients even months between appointments. Your colleagues were amazed, but you knew it added that personal touch, that it made patients feel special. Your memory was your thing, so you made it your mission to never forget.

  The end, when it comes, is swift and sharp. I have never been one for long goodbyes, which is ironic, considering the disease that I have means I’m losing a little bit of me every day.

  It is March 2015 and my last day at work. My team know I wouldn’t want a fuss, so one of them hands over the cards and presents to me early in the morning, before anyone else arrives. I only stay in the office for two hours; anything more would be just too painful. I leave with a clipped goodbye, just as I did every evening, only this time I am not going to return. I don’t leave that way because I don’t care, but because perhaps I care too much.

  I’m out in the corridor now, the cool air filling my lungs, and yet they still feel tight. I’m through one set of double doors and then the next, each step taking me further away from the twenty-year career I’ve loved. I’m numb inside, let down by a system that isn’t willing to support people with dementia to stay at work, that can’t adapt and change like those of us living with it do. I know that life will carry on without me, and I’m proud that my staff will manage, but I resent a management system that no longer needs me. My career had made me feel valued, but now I feel worthless.

  I don’t even try and remember this day. I don’t want to. Perhaps that’s why I have little to write here.

  I’m not ready to say goodbye.

  It was never a pleasant journey to the hospice in Halfpenny Lane, was it? You always felt sad driving into the car park, never knowing if this visit would be the last. How cruel the cancer was that had eaten away at your mother’s body. It was different once you walked through the doors though, a daughter clinging to each hand. You noticed their grip was tighter than usual, unsure, uncertain. They took their cue from you and so you had to be strong. Inside, the hospice wasn’t a depressing place, carrying an unspoken whisper that the patients inside deserved to die well, just as they had lived.

  Your mother’s room was at the end of a very dark corridor. Is that right or did it only feel that way? But once inside, her room looked out on to a beautiful garden filled with magnolia and cherry trees that, once bathed in the spring sunshine, would bud again with pretty pink blossom. Not that you knew if your mother would be there to see another season make its round. How differently we measure time when it is held inside the hands of a terminal illness. The cancer had spread quickly and her eye was the first to go. She missed little things, like being able to read a newspaper, and you coped as you always did, with practicality and resilience, taking her old spectacles to the opticians and convincing them to adapt them just for one eye. There was always a way – that’s what you said. One day you arrived, the girls gave Nanna a quick hug, said hello, then ran off to the TV room, the dimmed sound of cartoons filtering back into the bedroom where you sat beside Mum. She was weak that day, the moments of lucidity coming and going.

  ‘Tell me about school, Sarah,’ she said, patting the bed beside her and trying a smile. ‘What do you like doing best?’

  You glanced over your shoulder, in case Sarah had appeared at the door, but no one was there and Mum stared expectantly at you. You could have corrected her, but her hazel eyes were alive for a second, in that glistening way that happens to grown-ups when they speak to children. You couldn’t bear to dim the light from them and so you played along.

  ‘It’s good, Nanna,’ you said, tentatively at first. But when she nodded, and reached for your hand, the smile reaching her eyes, you continued. ‘I like painting and doing sums.’

  ‘Have you played with your friends in the playground?’ she asked.

  ‘Yes,’ you lied.

  Then she looked straight past you and her face lit up in delight.

  ‘Can you see that, Sarah?’

  You followed her gaze but the room was still, nothing had come or gone, the only sign of life being the net curtains billowing at the windows.

  ‘What can you see?’ you asked.

  ‘The soldiers,’ she said, her face alive with nothing more than the thought. ‘Coming over that hill, marching home from the war. Can you hear them singing?’

  You couldn’t bring yourself to break her heart. Why should you? What purpose would it have served? And so instead you played along, aiding and abetting the morph
ine. There was nothing else to do. Why confuse her further? you thought. And so you sat there together, watching the soldiers coming home, as Mum drifted back to sleep.

  I wake quickly, wondering if I have missed my alarm, and then I remember, there’s nothing to get up for. The clock beside my bedside stays silent these days. If I have a bad night’s sleep and worry there are only a few short hours until the sun bleaches the black night blue, it doesn’t matter. This is the life of the newly retired, and it takes some getting used to. I sink back into my pillow, but I’m distracted by the clock: 4.30 a.m. My body still used to the old schedule, dementia not yet overriding that internal alarm. Which day is it? I work it out slowly on my hands. Wednesday.

  It had seemed when I first retired that there would be so many empty Wednesdays ahead; all the other days of the week, too. But that hasn’t been the case. Today I’m grateful not to be heading far: a research event in Leeds, where I will be talking about the valuable work that Join Dementia Research is doing. It makes a change to travel somewhere relatively close by when all the other days since my last at work have been filled with trips far and wide: to Bradford University to help Ph.D. students, up to the West of Scotland University, speaking at an event and taking part in a social research study on employment after a diagnosis of dementia, back and forth to London for meetings with the Alzheimer’s Society Research Network, or to speak at various events about my own diagnosis. Life is busier now, more varied and challenging than it ever was when I was at work, just in different ways.

  It definitely hasn’t been the emptiness of my weeks that has been difficult to get used to, but a certain loss inside. I couldn’t put my finger on it at first, but then it came to me: all that information I kept ticking over inside my brain about work, all those rotas and staff, all those things-to-do lists, were now obsolete. It has been strange getting used to the space that has been left in this absence. But it has slowly been filled with the endless talks I’ve been invited to attend, the number of things that I learned about my disease, all helping me to understand it – and this new me – a little better. Research seems to be the way forward; every day I learn more and more about just how much people are trying to understand the disease. That’s why I became a Join Dementia Research Champion, encouraging others to sign up to a new database that will match researchers with volunteers, or why I’ve offered to road test a new app for people with dementia, which has a variety of things to help with memory, including face recognition in case you forget who someone is. There’s something else that motivates me, something a little more selfish: being involved in research means I’m contributing to changing the future for my daughters and generations beyond theirs, so that one day a diagnosis might not be filled with emptiness, but with hope of a cure and better understanding and conditions in care homes.

  There are other little adjustments I’ve had to make in my retirement too, silly things like that great British pastime of checking the weather forecast. Before, I’d only ever checked whether it would be sunny on the weekend, but now if it’s nice midweek I can sit outside in my garden, watching the birds as they flit between feeders.

  I feel my stomach rumble, a sensation I was never used to before in the mornings when I had little time to get myself showered and dressed and on the bus by 5.30 a.m. Now there is time to eat a slice of toast or some porridge with a cup of tea in the morning, and so my body sets an internal alarm, and it’s already thinking about lunch before I’ve finished wiping the crumbs away.

  Colleagues had said: ‘You’ll have so much time when you retire,’ but that hasn’t been the case yet. Instead I wonder how I ever had the time to work. I settle back into my pillow, pulling the duvet up to my chin. There are a few more hours to doze before I need to get up and get on.

  ***

  Do you remember visiting someone with dementia once, long before your own diagnosis? You often went to wards as part of your job. You were seeing staff mostly, but one day you lingered longer on a ward for the elderly. The nursing staff were moaning about one particular patient with dementia who was causing chaos and wouldn’t settle down. You spotted him, sitting in the corner with worry in his eyes. He was clearly agitated, asking anyone who would listen where his wife was. The conversation with the nurses melted into background noise, and you found yourself walking over to him, taking up a seat beside his. You started talking to him.

  ‘Where do you think your wife might be?’ you asked, gently.

  ‘I don’t know,’ he said, anxiety biting at his lips. It was all he could do not to break down.

  So you asked him about her, and as he talked, a light went on in his blue eyes. They started to twinkle again, and he smiled as – just for a second – she was brought back to life by his imagination. You asked to see a photo, but he didn’t have one to show. Perhaps that was why he gabbled on about her? He had no way of ‘seeing’ his wife, except in images conjured up in his heart. So you suggested to the nurses that the family bring in a photograph of her. It turned out she’d been dead a while, but he didn’t remember. Or at least not in that moment. Any talk of her passing, of people reminding him she was dead, just sent him into a spin, mourning her passing once again. So why not let him look at her? Why not let her keep him company once again in the evening of his life in amongst the trays of hospital food, the vases of wilting flowers and card games started and never finished?

  The next time you went back to the ward, he had a photograph on his bedside table. He didn’t remember you, and that was OK. When you asked who the lovely lady was in the photo, his face broke into the biggest smile, as he spoke so proudly of his wife, beginning her story again, bringing her back to life. He’d forget that she never visited, and whenever he did ask the nurses where she was, they distracted him, asking questions about her. And then he was content again. She was real.

  It would have been cruel to keep telling that man that his beloved wife was dead. If he didn’t remember, she wasn’t dead to him.

  I shoot up in bed. My skin is clammy. I blink and see it again: the nightmare that had crept into my dreams. It has been happening a lot recently, a frightening picture pulling me to consciousness, bizarre and terrible things – the other day it was bears running along with buckets of blood. I check the clock: 3 a.m. I know I won’t sleep for the rest of the night. This is my life now, no more than a few hours of snatched sleep. In the day I’m exhausted and plagued by headaches. I know I used to sleep solidly, waking only when the alarm went off, but now it can take me hours to get to sleep, staring at the outside world through a gap in the curtains. I close my eyelids, but my eyes are awake behind them, darting back and forth. If I sleep, it’s for an hour or so, and then so lightly it feels as if I wake in the middle of dreams.

  I open my laptop and search ‘sleep deprivation and dementia’: thousands of results come up but nothing that explains why. I decide instead to write a blog about it, hoping that the world outside my curtains might offer up an explanation.

  The following morning, I wake to dozens of replies, many asking whether I am currently taking donepezil, a drug introduced ten years ago and believed to slow the progression of Alzheimer’s. When I’d started taking it a year ago, I’d been so hopeful that it would give me extra time with my daughters. But at 3 a.m., longing for sleep when your time on earth ticks by in long seconds, the advantages of a so-called wonder drug pales in comparison to the side effects. Someone suggests taking it in the morning instead of the recommended night-time dose.

  The first night of taking it in the morning, I knew that my head felt calmer and that night was the first night in two years that I hadn’t had disturbing dreams, one lady had written. The first night I hadn’t woken and frantically had to work out what was real and what had been a dream.

  I decide to follow her advice, and that night I have my first sleep free of nightmares – still not the whole way through, but much better. I’m pleased for another reason: I don’t want to stop taking donepezil. It’s always been considered
a drug that is given to reduce or manage the symptoms of those of us with mild to moderate Alzheimer’s, but a recent study found that withdrawing the drug from people living with the disease doubled the chances of them being moved into a nursing home after a year. It seems that the drug keeps on working much longer than anyone originally thought, and with the annual cost of care homes being in the tens of thousands, and the annual cost of donepezil being just over £20, I know which one makes more sense. I want to be able to stay in my home for as long as possible and so the scales tip back the other way, and I can happily give up a perfect night’s sleep for another year at home.

  There is something special about wandering around York in the rain. I am walking along the famous Shambles in the drizzle, the cobbled streets shiny from the showers, the timber-framed shops, hundreds of years old, leaning over in that higgledy-piggledy fashion, so close that I’m surprised they don’t touch the sides of my red umbrella. This street has long since stopped selling the meat it was once famous for, but the butchers’ slabs remain outside shop windows, filled with tourists in the summer, who stop and lean on them while reaching into their bags for cold drinks. Not today though, everyone else is sheltering from the rain, so the streets are fairly empty as I shuffle through them. These are well-trodden steps and I’m used to navigating the cobbles, especially with fewer tourists to get in the way of my wobbling gait. At the end of the street I turn right into Kings Square, where a street entertainer plays to a bedraggled crowd, who are doing a good job of ignoring the downpour while wet hair sticks to their faces and water swells at their feet.