My iPad and phone ping throughout the day: eat food, take tablets. I have to barricade myself in my kitchen with chairs when I’m making a sandwich or a salad so I won’t wander off and forget to eat altogether. I came downstairs the other day and there was no washing-up on my draining board. I realised I must have forgotten to have dinner the night before. I looked in the fridge and found the lonely ready meal for one.
So now I embrace those opportunities to stop, to give myself a break from a world that is becoming increasingly hard work to live in. The fountain in York is always a peaceful place to stop among the hustle and the bustle of shoppers rushing this way and that. I don’t know how long I’ve been sitting here enjoying the sound of the water, the relentless whoosh from the jets, a rhythm that isn’t too taxing for my brain. The smell of freshly cut lilies floats towards me from a nearby flower stall; smiles from children trying to convince their busy mothers to stop awhile to look at the display in the Disney Store; tables and chairs outside a café, and a violinist filling the air between them with his music, a hat at his feet pleading to be filled with coins in return. And then two smiling faces approach me.
‘Hello,’ one of the young women says. ‘Do you mind if we sit with you?’
I shuffle up, happy to make space.
‘You won’t remember us, but we’re student nurses,’ the other says. ‘You came to speak to us with your daughter and we loved your talk. We follow you on Twitter.’
‘Oh, that’s nice of you to say,’ I reply.
They sit for a while and we chat. They tell me about their Christmas holidays and the assignments they’re writing, and for a second the memory from a few weeks before comes back of the nursing students who’d shuffled in their seats and told me they hadn’t expected someone with dementia to be able to speak as I had.
‘Even dementia has to start somewhere,’ I had told them as they’d sat up and listened that much harder.
We finish our chat and the girls get on with their day, and I decide to spend a little longer in my quiet moment, back to the whoosh of the jets and the chatter of passers-by, just watching, and waiting. For what, I might have forgotten.
***
Do you remember the teenage years, or is that a period you’d gladly let dementia steal from you? With two girls in the house, you’d be forgiven for that. Your career was taking off by then. You were being handed more and more responsibility, confidently running the diaries for the physios, keeping a tally of whom to tell what in your head, never needing to write it down. You realised then just how special your memory was. The switch from running an office to the house was seamless, using the drive home to picture whether the girls had enough clean school uniforms to see them through the next day or whether you’d need to get home and start washing, or think whether you needed to ferry the girls from here to there. Your brain didn’t get tired like mine does; it was active and alert deep into the night. It had to be.
You’d go upstairs, collecting newly laundered clothes on the way, depositing a small pile outside the girls’ bedrooms. A door would open and the music would grow louder.
‘Hey Mum,’ Sarah would say.
You’d follow her into her room, sit on the bed, ask her about her day, remembering all she’d told you the day before about dramas with friends and marks due back on assignments.
‘I’m starving, what’s for tea?’
You’d head back downstairs to start making it. As you did, you’d hear cupboard doors opening around you, a face staring into the fridge.
‘How was your day, Gemma?’ you’d ask over your shoulder, taking in the details she told you, always interested.
It amazes me now how you did it, because you didn’t have anyone to help you. You were Mum, Dad, taxi, chef, counsellor, gardener and housekeeper, all rolled into one. Not that you minded. You batted away the guilt known by every working single mum for not being there at home time. You told yourself you’d find the time to pay them back when they were older. You had no idea that time was finite then, that there would come a day when your roles would switch so dramatically. Back then you were happy to be everything and Mum. Now, in my shoes, the latter would be the only role you wanted to get right.
Dementia can be a lonely world to live in. It brings uncertainty, so that sometimes I don’t quite know what the world might be today. I miss feeling needed and necessary, and so I work hard to carve myself out a place. At first I found friends in website forums, people to talk to who knew what I meant, a safe space where I didn’t need to explain. Back when I was working, I would spend most of my evenings scrolling down lists of forum topics, trying to find the one that best described what I was feeling. Sometimes I was left shocked at the negativity of what I read, at how little it resembled the reality of my experience. I remember a daughter asking users why her mother refused to go into the room she’d newly decorated for her. The obvious answer – that it was difficult because it was different from what she knew as her own room – didn’t appear among any of the replies. Instead other carers had written about how dreadful it was, and that this daughter just had to accept it. Nothing you do will be right, someone had unhelpfully told her.
They just didn’t get it.
But neither did the medical professionals. Our first port of call was the GP, who told me not to bother taking donepezil, because it didn’t help.
‘So put yourself in my shoes,’ I’d said. ‘You’ve been diagnosed with dementia and donepezil is the only medication on the market. Would you discontinue using it?’
He didn’t answer. I changed GPs.
During one of the first conferences I’d been asked to speak at, the person before me spoke of the ‘challenging behaviour’ of people with dementia. It made me so sad that I quickly took a pen from my bag and rewrote a section of my speech to talk about the challenging behaviour of healthcare professionals, whose ignorant responses distresses us. I did it for the many people with dementia who can’t communicate this.
Because people don’t get it.
And the more experiences I had like that, the more the sadness swelled inside me. So I put myself forward to take part in more and more research. I agree to help select doctoral candidates for Bradford University. I volunteer to be part of research committees, to speak to 200 student nurses and remind them that people with dementia might not remember the detail of their care, but they would remember how it made them feel: a touch of the hand or smile would mean so much. I take part in market research for banks that want to make their branches and online services more user-friendly for customers with dementia. I even take part in the Prime Minister’s Challenge on Dementia 2020, because while the aim of the Challenge is to be the best in the world for care and carer support, and to lead the way in research, not one person with dementia was actually on the original panel.
Even they didn’t get it.
The retirement that I’d once planned has been lost to a disease that I hadn’t asked for, but I am busier now than ever.
I call this my sudoku. Something that exercises my brain, exposing it to new conversations and people and surroundings, week in and week out. Even plotting a journey to London makes my brain throb with confusion. But I do it.
What’s the alternative? Sitting around all day waiting for the decline to come more quickly? To allow this disease to make its march even sooner? Isn’t it better to keep the cells in the brain that are working well, working for longer?
And there is another reason I say yes to every invitation to speak or judge or listen: because I don’t know when this might be my last chance or when people might stop asking me. Dementia has a way of throwing everything into such sharp focus that the weeks when I don’t have anything planned make me feel panicky around the edges. What if I forget?
Because I have. I do.
You stayed in the physio department for five years and you were always happy there, but you knew the place inside out, and couldn’t shake the feeling it was time for another challenge. You were neve
r one for an easy life. You read in a newspaper about a new initiative, a phone helpline, NHS Direct, and a call centre that was opening locally. After that you scoured the newspaper each week for job adverts, and there you found it one day: health advisor for the helpline. It was shift work, but the girls were getting older. They were more than capable of managing on their own, but still you felt the need to check with them before sitting down at the kitchen table to write your application letter – you were always a mum first. ‘Go for it,’ they both told you.
You got the job – of course you did – you were so capable, so different from me. You can probably remember the light flashing on the screen, one of the first calls coming in and your turn to answer.
‘NHS Direct, Wendy speaking, how can I help you?’
There was a nervous voice on the other end, a woman searching for words to explain how worried she was about her anorexic teenage daughter, how she needed the number of an eating disorders helpline she could ring for her. You found the number and heard the relief in her voice as you read it out. She was about to hang up, when you asked her another question.
‘What about you?’
There was a moment of silence on the other end of the phone. You glanced up at your screen, relieved that there were no other calls waiting; a small and rare chance to make a difference.
‘You need to make sure you take care of you as well, remember,’ you said, a little hesitancy in your voice, a desire not to offend. ‘If you become ill, then how will you help your daughter? There’s a support group for parents too – would you like that number?’
You were greeted by silence and it unnerved you for a second. You were new to the job, concerned you’d overstepped the mark, but desperate to help.
‘N-No one has ever asked how I am before,’ a tiny voice finally replied. You could sense the tears that accompanied it. You sighed inwardly.
‘Well, you’ve never rung us before,’ you replied, hoping she could hear your smile from wherever she was in the country.
You put the phone down and looked at the brick of a mobile phone beside you on your desk, something you could ill afford, but that gave you peace of mind that your own teenage girls had a hotline to you should they need anything.
In those early days there wasn’t a huge volume of enquiries, and so between the lights flashing on screen, one nurse even brought in a roll of bubble wrap so she could lie down for a nap between calls. You’d laugh with the other call handlers each time the nurse rolled over in her sleep and another dozen bubbles popped, and at the end of every shift you returned home to your girls, confident that as your head hit the pillow, others were also having a better night’s sleep for getting access to services or medical help. You realised then, as you drifted off, that knowledge wasn’t just power, it was a comfort.
I pick up my iPad, open its casing, slide the keyboard into position and then I just stare. It’s been a while. I’d been so busy a few weeks ago that I felt I had deserved a break, so for the last three weeks my iPad has been idle and this, today, is my first day back. A long-awaited blog entry to write, some research to do, emails to open. I know I’d sat down with a long list, but my thoughts suddenly feel paralysed. What do I do now?
I look from my desk to the window, the blue sky of the outside world for inspiration, and back to the iPad again. Nothing has come to mind. My hands sit in front of me, idle, ignorant of the task they used to perform. There’s a scratchy signal being sent from my brain. Go on, it whispers, open the email. But my fingers don’t obey. They don’t know how to. I feel it then, that disconnect. The blank that has become an all-too-familiar visitor to my mind. I feel it. In the end, I turn it on. There’s an envelope icon. Something tells me to push it. I do. There’s a red circle with 78 in the middle. Seventy-eight emails waiting for me. I see the name of a friend – Sue – among them. Safety. I push on her name. Her message appears on the right. But I feel lost in this screen, as if I’m trapped behind the glass, a ghostly reflection just visible back. Is that me? Is this me?
Stay calm, a voice says inside. I take a breath, and another. I feel my shoulders sink against their instinctual fear.
I know I usually do this every day and I should know what to do. I tap the screen, but nothing happens. My eyes scan every inch of it, searching for a clue. All I see is my worst fear staring back at me, along with an image of me. I can type words quicker than I think or speak. I can type words quicker than I think and speak. But now I can think of nothing.
The thoughts are out of control then, as panic takes over and fear runs across my mind in so many different directions. Is it over? Is that the end of my typing days? If my blog is gone, how will I save my memory? How can I communicate?
Stay calm. That voice again. I slow down my breathing and the thoughts start to settle. Make a cup of tea, a voice says. Everything seems better with a cup of tea. I go into the kitchen and am thankful that the task comes to me automatically.
I start again, at the top right-hand corner of the screen. I press the first icon and a new blank email appears. I press the word cancel, then the next button, an arrow. The word reply pops up, I press it. The cursor blinks accusingly. What next? I look down at the keyboard but nothing makes sense. I press random keys, using all fingers: jsjfjksllkksmfjkfslk. My hand hovers over the screen, I press send. Sue will understand. I sit and wait. Nothing happens.
I close the screen and make another cup of tea. As I boil the kettle I have one agonising thought: what if I forget how to make a cuppa? A smile suddenly appears on my face as I remember all the events I attend where the first thing people do is make me a cup of tea, knowing that they’ll immediately receive one of my infamous brownie points. For a second I forget the screen waiting for me in the other room, distracted again.
I sit staring at the birds, the warm cup between both hands. Then I hear a ping. Enough cuts through the fog to tell me it’s the iPad. There’s Sue’s name again. I press it.
What you up to, Wendy? she’s written. What’s with the gobbledegook?
I want to shout at the screen. ‘HELP ME!’
The letters on the keypad look like hieroglyphics. They make no sense.
jjdhsufsh I press send.
I keep the keyboard open, knowing she’ll be waiting for a reply. A few moments later, the same sound again.
Is there something wrong?
I can read but I can’t write.
jknhafapod
Send.
Backwards and forwards like that we go, it feels like hours.
Copy my letters, look on the keyboard and find the same shapes.
I do as she says. I scan each squiggle on the keyboard, press each in turn. Minutes go by as I find each one.
copymyletterslook …
Send.
The same again, comes a reply.
thesameagain …
Send.
Another reply.
Do you see the long key at the bottom? That will give you a space.
Do you see …
Send.
We go on like this, over and over, until one by one the letters start to take shape in front of me. They make sense again. Of course they do.
Thank you, I type finally. I’m back.
I flop back in my chair, and slowly my breath starts to steady itself, my heart too. What if she hadn’t known what was happening? What if she hadn’t known how to talk me back round? Would it have been lost for ever? I squeeze my eyes shut, telling myself not to think like that, but then the thoughts come thicker, faster. It’s impossible to avoid them. I feel tired. I have a headache and want to lie down, but I’m afraid to close my eyes. Will it disappear again?
I know then I can’t take time off. If I don’t use it, I will lose it. I came so close today. I’m scared of losing the last bit of me, the one behind a screen who can type and think articulately. I’m not ready to let her go. I have become used to looking up in familiar surroundings and not knowing where I am, but this was something else. I was lo
st inside. Screaming to get out. It was terrifying.
13
I stare at the television as the credits roll. I’ve just watched a Panorama programme about dementia and so many thoughts race around my head. Camera crews had followed two friends of mine, Chris – who has dementia – and his wife Jayne. I know them from the speaking circuit, although Chris’s disease is a little more advanced than mine. He, like me, tries to stay as active as possible, even though it is often exhausting.
It wasn’t easy to watch the programme and my first thoughts are for Gemma and Sarah, who I know have watched it in their own homes. But one thing I’m left with as the programme ends is how different life is for someone living alone compared to someone living with their partner when they have dementia. Jayne tries to help Chris continue to be as independent as possible. She still sends him out to the garden to get wood for the fire, for example – even if he goes into the garden and instantly forgets what he went out there for. I’ve seen many people who have dementia whose partners do everything for them, and that only seems to help the disease progress, in my opinion, because they forget how to do things for themselves. Many people that I speak to describe their husband or wife as their ‘back-up brain’, someone to remind them of things that they’ve forgotten, to help them when they get lost in the house, to go and get them back if they wander out of the front door at night. But I don’t have that.
There are benefits to being alone with dementia. I don’t have to worry about someone moving things around in my house and disorientating me. I also have to implement my own coping strategies and these alone exercise my mind, keeping those circuits firing in my brain, the connections tried and tested; the sudoku I do every morning to kick-start my brain while I have my first cup of tea, solitaire on my iPad, and Scrabble with Sarah and my friend Anna.
Somebody I Used to Know Page 18