Somebody I Used to Know Page 7

  How much time do you think you lost scouring the small ads in the local newspaper? Your finger ran down the page from job to job, week in, week out, searching for that perfect position until the tip of it was black with ink. You knew you could be more than a cleaner, that there could be more for you than scrubbing sinks and toilets while the girls were at school, but finding something to fit in with the family rhythm was the hardest. You did it for five years after their dad left, just to get by, but you knew there had to be more to life than that.

  And then one day you saw the perfect job: part-time receptionist in the physiotherapy department at Milton Keynes Hospital. The advert promised flexibility: you could work mornings or afternoons. That active mind of yours that I so envy now started to race with the possibilities, persuading yourself that the girls would appreciate a bit of responsibility and independence, either getting themselves to school or home. Sarah was old enough by then to look after them both if you were a little later than the school bell. You were full of hope as you called for an application form, smiling down the receiver, finding it impossible to keep the excitement from your voice.

  When the paperwork arrived a few days later, you sat at the kitchen table and stared at the blanks you were supposed to fill in. Current Employment gave you a bit of pause, but you did what you always did and tackled the issue head on. ‘Cleaner’ would hardly impress them you feared, but there was no hiding it: You may wonder why someone who is now a cleaner thinks she may be suitable for the advertised post of receptionist … you wrote, and then proceeded to give them all the reasons why you were an excellent candidate for the job: your memory and attention to detail, to name just two, and the fact that you were quick to learn. So different from now. But they wrote back and you got an interview, and years later, long after they’d given you the job and you’d moved up and through the ranks, one of the people who interviewed you explained how she’d persuaded the other manager to give you a chance, that being a single mum of two gave you more reason than many to work hard and hang on to your job. And that’s just what you did. You were thirty-nine and someone had thrown you a lifeline. That job was the start of a twenty-year career in the NHS, where you’d become so devoted to your job you were accused of being a workaholic, that when you had a stroke it was the stress of the job, the hours you put in, that were to blame. But for the first time in your life you had real independence, and you were so determined to hang on to it.

  The table is in a long narrow room and I sit at the end, waiting for the rest of the seats to fill up. I’m excited, a smile stuck fast to my face, and with a sense of something I haven’t felt in a while: the ability to contribute and change minds. I’d found out about the Dementia Friends initiative on the Alzheimer’s Society website, and I’d become a friend by watching the video explaining life with the disease – as if I needed telling – but at the end there was more: a chance to spread the word further than the internet by becoming what they called a Dementia Friends Champion. That is the training I’m here for now. I thought of my friends and colleagues at work, and enrolled on this local course. Silently others file into the room, and we start by introducing ourselves.

  ‘I work at St James’s Hospital in Leeds; I was diagnosed with dementia in July and I need a simple way to explain to my team and make others aware of dementia,’ I tell them. ‘I think if a person with dementia delivers a session it would have a bigger impact.’

  There is silence from every seat at the table, all eyes on me. It’s obvious in that long second that I am the only person in the room who actually has dementia, and, ironically, even though the others came to learn how to share more about the disease, they hadn’t expected to be sitting alongside someone who has it. It feels like an age before the next person speaks.

  ‘Thank you for sharing, Wendy,’ the facilitator says finally. ‘Right, who’s next?’

  She moves on. Each person has their own reason for being here today, and then we listen and learn as she presents different tools and ways that we can help people to understand dementia. During the break for lunch people come over one by one to tell me how much they admire my reason for being here, but I see that just my presence alone is breaking one myth about the disease for all of us – reminding us that it isn’t age-related.

  We learn lots of different techniques for sharing information, including a fun game of bingo where the facilitator reads out helpful sound bites about dementia and we have to find the missing words on our bingo cards. By the afternoon, I feel my own nerves starting to bite inside; it’s almost my turn to deliver part of the Dementia Friends session to the room. I’m shaking inside as I walk up to the front, despite the fact that I have written down a speech during my lunch hour, underlining key words that I mustn’t forget. I take a deep breath and start talking, I hold the attention of the room, growing in confidence as I do, thinking how all those years of training skills at work must be holding me in good stead, that they’re still in there somewhere.

  ‘Before we start, maybe I should dispel another myth. So many people, when they hear the word “dementia”, think of the end. Maybe some of you thought that too. Well, I’m here before you to show how dementia has a beginning before the end and so much life to live in between. Don’t give up on us, as no matter what stage we’re at, we still have so much to give. We just might give in different ways.’

  I see them relax in their seats, understanding more now than when they arrived this morning. I get through it, and the room applauds.

  At the end of the session, many of the others come up to me.

  ‘I just don’t feel so wary about dementia now,’ one says.

  ‘I’m no longer uncertain about how to talk to someone with the disease,’ another says.

  I leave the room, like all the others, a Dementia Champion. I’m still coming to terms with the disease myself, but at least I know how to tell people what it means to have Alzheimer’s. Just as soon as I’m ready.

  The last Post-It note is crumpled inside my hand and I manage to get it into the bin under my desk in time to hear the first of my colleagues arriving at the office. I have been here an hour already, and my wastepaper basket is already filled with notes I’ve been working through in preparation for the day ahead.

  ‘Morning,’ I call to my colleague, my head under the desk, ensuring none of the paper is visible, that no one can see just what I need to do to keep my job. I come back up for air, my guilty secret of six months tucked away somewhere near my feet. More and more recently it has felt like I am leading a double life. There’s the person I project to those around me, trying to emulate the one they’re more used to, and the new me, the one who is so determined to hide mistakes or the extra time it takes to get through basic tasks.

  While the rest of the office has been embracing tutorials in a new roster system, the multicoloured squares it uses to organise and categorise have remained a mystery to me, despite all the extra hours I’ve put in at home after work, or before work when the office is quiet and I have nothing but the hum of the photocopier for company. It just hasn’t clicked for me; it remains mysterious. The implementation of the system is only weeks away, so I know I can’t hide my confusion with it much longer. The worst thing is that they are going to see it soon too, and then I will fall from office guru to the idiot who can’t keep up. Day by day, I am losing control, and the frustration is biting inside. Dementia hasn’t yet stolen all the knowledge I still have on the art of rostering, even if I can’t keep up with the new system. I’m not yet completely redundant. But I am keeping a secret, and sometimes the guilt of that stings.

  I have been hoping to carry on working for as long as possible, but hiding my diagnosis is becoming harder every day. In fact, it’s becoming more exhausting than the job itself. I am constantly looking out for clues that will jog my fading memory as to who is on the other end of the phone; finding it difficult to concentrate in the office with all the noise of phones and conversations; wasting time going over and over the
same task that previously would have taken me seconds to complete. I wonder if anyone notices how many times I leave my phone unanswered. Or maybe it’s just me who knows the art of multitasking has deserted me. But I’m afraid to tell people, that’s the truth of it.

  As the office fills up with smiling faces, I look around and realise I don’t want my staff to look at me with pity rather than respect or my managers to question my capability. But in truth, how much longer can I keep up this facade? I know I need to tell them before the dementia takes the decision out of my hands and makes itself known directly. Anyway, I reason – as I have reasoned a dozen times before when the same thought has occurred – I work in a hospital, surely that should give me the confidence to ask for advice and support to keep on working, especially if we’re striving all the time to provide a dementia-friendly place for patients.

  I turn back to my screen and open a new email. I write the names of my three managers at the top and start to type. It wasn’t going to be an easy conversation for any of us, so I decide to tell them about my diagnosis by email first; that way they have time to digest and discuss it between them before they speak to me. I write openly but practically, explaining clearly what I’m still capable of, what I find difficult and how I think I might find it easier, knowing they want solutions, not problems. And then I press send. I listen to the muted chatter of my own staff in adjacent offices, but of course none of them have noticed a thing. Next, I schedule appointments with each manager in turn over the next few days, and then I sit back in my chair, anxious and relieved to have shared the news, to have reached out for support, and just hoping it won’t change everything. I leave for the day, just in case any of them surprise me by ringing there and then or popping their heads around the door. Unlikely, but best not to leave it to chance.

  Two days later I knock on my immediate manager’s door for the first meeting. My heart is beating so hard I wonder if it can be seen through my shirt. I tell myself he doesn’t know how nervous I am; in fact, he seems more hesitant than me as I walk in and sit down in front of him.

  ‘I’ll admit I don’t have much knowledge of dementia …’ he begins.

  I try to explain the little that I know, what I first noticed, the difficulties I have at work.

  ‘How long have you got?’ he asks.

  This time it was the question, not the dementia that stole the words from me. I pause for a second, trying to put myself in his shoes, to take the sting out of the words. I know exactly what he wants me to tell him: how long before I’m useless at work. I’d gone in prepared, knowing questions a little like these might be raised, hoping they wouldn’t.

  ‘Maybe you should refer me to occupational health?’ I suggest calmly, taking the lead because I can see he is struggling. ‘I’m not ready to retire. I’ve been diagnosed with dementia, but that doesn’t mean that I’ve suddenly lost my ability to work, I just need to adapt a little so I can carry on working; they’ll know how to facilitate that.’

  I suggest working from home every other day. That way I’ll have the quiet I need to be able to concentrate. He agrees, but as I leave his office he seems unconvinced. Everything I feared has come true: the pity is unavoidable. I see it in his eyes as I close his door behind me.

  Another knock at another door. It is a month later and this is my first meeting with the occupational health consultant. I’m not nervous, as I was when meeting with my manager, as cases like mine are this doctor’s job. She will have considered things I haven’t, and make suggestions that will help me feel more empowered and more able to work for longer. I have been working every other day from home for the last four weeks and it has helped a little. I am still slower, but much more able to concentrate. My own staff have just assumed I need more time to recover after the stroke. I let them think that, not ready to reveal my new diagnosis to them. Certainly not until I’ve had the chance to speak to occupational health and know just what will be put into place to help me to continue working.

  I push open the door and as I do, the doctor spins round to greet me, but my eyes fall not on her smile or the pitying tilt of her head, but on the computer behind her, a webpage I recognise, a regular now on my list of favourites at home. She has been looking at the website for the Alzheimer’s Society, and the heading on the page reads: Symptoms of Dementia. She glances behind her and sees what I’ve spotted.

  ‘Oh … I …’ She closes the screen quickly, turns her computer away slightly just to be doubly sure. ‘I’ve found a great website and there’s lots of information …’

  ‘Yes,’ I say. ‘I know that page well.’

  ‘Yes, of course.’

  She looks embarrassed as I sit down with my file of paperwork, and I’m trying hard to ignore the sinking feeling inside, the thought that says I’ve already equipped myself with more knowledge than any of these so-called professionals.

  Just like my manager, she tells me that she’s never been involved in advising someone on living well with dementia.

  ‘Never mind working well,’ she says with an awkward smile.

  She starts flicking through paperwork and I glance through it as she does from my side of the desk. There’s nothing about the adaptations required for work; it’s all about ill-health retirement, NHS pensions. I want to scream that I’m not ready, but instead I sit quietly and bite my tongue until I can’t resist any longer.

  ‘I am still managing my team efficiently. I just have some trouble getting to grips with the new—’

  ‘Have you considered ill-health retirement? I can help with all the forms you need,’ she says, looking through my file.

  The notes I’d made sit abandoned inside my folders. It is as if the decision had already been made for me before I even entered the room. I watch as she makes notes and fills in forms, her pen skipping along, ticking boxes. She doesn’t look up to include me. Perhaps she thinks she’s making it easier for me this way, making the decisions so I don’t have to. Others have also suggested I retire due to sickness, but I’ve shunned the idea. I’m not sick – I am well; I just need help and advice. But it’s sadness, not anger that wells inside me.

  She has a form in front of her where she needs to write her recommendations, and I sit watching, helpless as she begins to fill in one particular section: Incapable of meeting the demands of her NHS employment …

  My fate has been decided.

  I still have a mortgage to pay, so reducing my hours was never an option. I won’t be able to pay the bills, and so, just as she’s suggested, early retirement is the best way. At least then I’ll get a lump sum to pay off my mortgage. I’m trying so hard to look at the positives. But as I leave her office, clutching a copy of the form she filled in, any hope I had in the health system evaporates. The system itself, my manager, even occupational health – they’ve all abandoned me. I have been able to advise them far more than they have me. I am working within the NHS and I still can’t get the support I need. What chance do others with dementia have? I know I still have a valuable contribution to make and I’m not ready to write myself off. I have worked hard to get to where I am and I don’t feel ready to give it all up. It seems like I’m shouting and screaming into the wind. I am not sick. I want to be heard. I am angry, but more than anything, I am sad and deflated.

  I’m back at my desk, trying to shrug off the hopeless feeling I’ve had since the meetings with my managers and occupational health. The office starts to fill with the sounds of my team arriving; calls of ‘good morning’ fill my ears and that warmth returns, a trust deep inside replacing the unknowns.

  I know I’ve got to tell them. They’ll be shocked, but I know they’ll help me. For the last few weeks I’ve been mulling over just how to break it to them; an email doesn’t seem personal enough, but blurting it out in a meeting seems too direct. I know they’re worth more than that. My team is made up of lots of different characters, each with their own unique set of skills. There are those who offer a quiet, steady hand, not saying much, just getting
the job done, adapting as required, and there are the ones who will ask questions, determined to deepen their understanding and give more. Both sets of people are, and will be, much needed in the coming … weeks? Months? Who knows?

  I look up at my screen. It has gone to sleep, and two words run across it in bright colourful letters: Dementia Awareness. I stare and watch as they cross the screen, and again. There are often initiatives brought in at work, little messages sent to our screens by IT at the request of managers much higher up in the hospital who want us to focus on a particular corner of learning. This month, coincidentally, it’s dementia. It comes to me: the bingo cards and other fun techniques I learned a few weeks ago at the Dementia Friends session. I smile to myself. This is how I’ll do it.

  A week later I’m standing in a meeting room with eight faces staring back at me – half of my team, who I’ve carefully selected. The other half is back in the office, waiting for their training session later in the day. They’ve no idea why they’re here, although I’ve heard the whispers around the office; most just assume it’s part of the hospital drive to learn more about dealing with patients with dementia. The room is smaller than I’d hoped, the windows shut, and as I look out at my staff from the front of the room, it suddenly feels hot, claustrophobic, eight bodies squeezed into a room meant for four.