I Don't Know Who You Are

The day had started well. A jewel-bright morning of azure sky and fields fluorescent with yellow oilseed rape, as I made the two-and-a-half hour journey down to see mum. I stopped off as usual at the M&S garage shop, to stock up on flowers, a newspaper, and wine for her meals in the care home. Worried that she’d been eating less in recent weeks, I tried to think of something with which I could tempt her, but the sweet goods that had once been her favourites seemed pointless now that she was even turning down freshly-baked cakes and desserts in the home. At Easter, I’d taken hot cross buns, but she had waved them away with never a look.

So when I spied a strawberry stall by the roadside, I pulled over, pleased to have found a treat vibrant with life from the outdoors – the lush, green countryside of our home county that she never ventures into now. I thought of the many spring weekends like this, when we’d have been setting off out for lunch together at some village inn or wine bar in the town centre, where we’d sit under big umbrellas on the pavement and watch the world go by, eating fish and chips or a Sunday roast with a glass or two of wine… 

Those days are gone. Only I remember them now. 

But I was in light-hearted mood. This week I’d managed to set off a bit earlier and didn’t have to rush to make the early lunchtime at the home. Traffic was quieter too. I would have more time to arrange the flowers in mum’s room, check her supply of toiletries, and tidy myself up before lunch.

Mum was pleased to see me. “I didn’t know you were coming”, she said, “that’s a lovely surprise!”  It’s always a surprise, despite the fact that I’m there, regular as clockwork, every other weekend. Mum has long since stopped having any concept of time, so I don’t correct her or tell her when I’ll be coming again next – only “soon”. 

When I used to visit her at our family home, I would call ahead to tell her I was setting off in the car. At some point, perhaps four or five years ago, I realised that despite this accustomed call, which had been our routine since I moved to London in my twenties, mum would always be surprised when I arrived. In the time it took me to drive there, she had completely forgotten I was coming. Likewise, when I returned, I would call her as usual to say I’d arrived back safely; that had been essential since I’d left home. But latterly it meant nothing. “Back?”, she would ask blankly. “From where?”  “Your house”, I would say - to be met with bewildered silence.

This week, I noted that staff had dressed her in the bright pink jumper I’d bought a few weeks ago, but had not yet seen her wearing. It suited her and lit her up. Like me, mum chose steak and mushroom pie for lunch (in her eyes, we must always have the same), and managed a few mouthfuls. I was ravenous after the long drive, but tried not to wolf mine down too fast, to encourage her to eat more. She drank her glass of wine and seemed to be doing quite well. 

But suddenly she looked at me – a sharp, searching, mistrustful look, as if some black cloud or demon had passed behind her eyes - and I knew something in her head had changed. And then she said it: “I don’t know who you are. Why are you here?”

I choked back the shock, tried to keep calm, show no reaction.  “I’ve come to see you”, I said. “I’m Ming. Your daughter.”

“Pfft!”, she said, with a dismissive gesture. “You look like. But you’re not.”

It was my late father’s birthday that day. He’s been dead for 26 years. Normally, I would never ask mum “do you remember?” this or that; I know you’re not supposed to do that to someone with dementia, because the answer is usually no – leading to confusion and sense of failure. But on this occasion I needed to know – what did she recall now of our past life?  So I asked her, “Do you remember Wai?  My dad?”  “Of course I do!”, she said, outraged.  “Stupid!”

I focused on my meal. She had stopped eating hers and would not be persuaded to try any more; she started to mess it all up.

“Dreadful!”, she exclaimed in disgust.  “Dreadful!!” 

“What’s dreadful?” 

“Me!  This!  Here!  What I’ve become.”

And I couldn’t hold it together. How could it be that she didn’t know who I was, yet was lucid enough for once to know that she was somewhere she didn’t want to be, because something “dreadful” had happened to her? She’s had no context for where she lives for years. Not since she’s been in residential care – nor for some considerable time before that, when she had stopped recognising her own home and was desperately frightened by it. Yet now, in this moment, she somehow knew what she’d “become”. And grieved for it, just as I do.

I fled to her room, as discreetly as I could; and only when the door was shut, a corridor away, did I allow the tears to come. Kind staff followed to comfort me. 

I asked them to carry on serving mum dessert, as she’d be more likely to eat that, I thought. And when I’d gathered myself, I went back into the lounge. Mum was oblivious that anything had happened, although her mood was hardly better. She stubbornly and silently refused her favourite meringue, so I tried her with the strawberries. Miraculously, she accepted one or two. 

And slowly, over the next few hours, as I sat with her “watching” TV, we regained some equilibrium. By the time I left, she knew that I was “Ming”, that I was her daughter, and that she loved me – although how far she can put those three ideas together I’m not sure any more.

It’s been several years since she’s really known who I am in context: that I’m her daughter, I’m in my forties; I’m not married and have no children; I live in London; I’ve been a writer of TV drama, and I’ve been looking after her. Sometimes she thinks I have a “sister” (I don’t). I believe this is her memory of me as a sweet, pretty, vivacious young woman, the “Ming” she really loves, from the life we’ve both had to leave behind; whereas the person who visits her now is a tired, dowdy, middle-aged woman called Ming, but someone else. 

It is generally known that there may come a time when a person with dementia does not recognise his or her own closest family. This is sometimes perceived as a sad but benign stage of “blissful ignorance” before the end, like a gentle drift into sleep. Maybe that’s how it is for some. But not for my mum. 

I understood that she hadn’t “known” me, as the real person I am now, for a long time. But this was the first time she’d said so baldly to my face that she didn’t know me at all; and what upset me more was that it wasn’t just non-recognition, but hostile, dismissive, full of active contempt. There was hatred in her eyes.

This is my lovely mum, as I best remember her, in the 1990s, before dementia took its hold. It was taken on one of our many happy pub lunch outings.

It is inconceivable that the mum in this photo would ever look at me with hate or contempt; that she would ever deny me. But as she is now, she does. Not always, thankfully, or permanently as yet. There is still enough of her real self flickering within; but I know that will diminish. Each time I visit, I dread the moment when she looks at me as a stranger and that recall doesn’t come back.

I’m not a religious person, but I can see why the Biblical idea of being “thrice denied” is so powerful. It’s an act of rejection – betrayal – by the person who had previously been closest, most loyal. I’m not drawing comparison with Christ here; but on an emotional level, denial by a loved one with dementia is that ultimate hurt for family. Particularly when that loved one is the only family you have left, the one who loved you most – or perhaps the only one who loved you, to whom you have devoted your life.

Of course, they are not wilfully rejecting you, but are perhaps frightened themselves of not knowing who they are and scared to find "strangers" around them. But understanding that doesn’t make it hurt any less. 

There were times in recent years when I broke down in despair at the situation mum and I shared; although I tried not to let her see how upset I was, there was a part of me that wanted her to see, to be moved by it, to show me she still cared. Yet she would watch me cry in a detached, almost anthropological way – like a scientist examining a subject. 

The last night we spent together in our family home, the night before I took her into care, she found me curled up, sobbing on my bed. She stood and looked on from the doorway for a few moments, not exactly upset, but vaguely disturbed. 

“Why are you crying?”, she asked.  I couldn’t reply: it was too huge.  “Come on!”, she said, “stop that now.”  I couldn’t.  “I love you, as if you were my own daughter.” 

‘As if?’ ‘As if…?’  Then who did she think I was? That was in 2011.

The day before last week’s incident in the care home, when mum had said “I don’t know who you are”, I had been speaking at the Alzheimer's Show in London; I had also sat on a Question Time Panel alongside Jeremy Hughes, CEO of the UK Alzheimer’s Society and Baroness Greengross, Chair of the All-Party Parliamentary Group on Dementia, among other experts in the field.

Afterwards, I met two ladies, who expressed surprise to find me queuing with them for the loos. “We just saw you on that panel”, one of them said, “I’d have thought you’d have somewhere special to go.”  No, I explained, we all have to go in the same place. That strikes me as a good analogy: where dementia is concerned, there are no V.I.P. toilets. We are all in the same queue…

Anyone who saw me speak that day might have thought that I had come to terms with my mum’s dementia, that I’d “got it sorted”.  But the truth is none of us has. 

We learn to accommodate it on a practical level, to accept it intellectually. But emotion can never be wholly tamed; those moments, when the person you love most in the whole world says they don’t know who you are, can still floor you, however much control you think you’ve gained. 

I’m glad there’s far more dementia awareness now – initiatives such as Dementia Friends to teach the public the basics, and much good work being done in professional dementia care. 

But my final thought to policy-makers, media, and professionals at the end of Dementia Awareness Week 2014 is please, never forget how it feels. 

For families, it never stops hurting. And sometimes the only honest response is to flee into another room and simply bawl your heart out.

Everything Must Go

We moved in just before Christmas 1973.  It was a time of power-cuts, strikes, and three-day weeks - but that meant little to me as a child, beyond the novelty of candles when the lights went out.  Far greater was the excitement of our new house in a different part of the country.

And it really was “new”.  One of the first to be completed on an estate marketed as ‘Green Willows’, it had been the manager’s office – a fact still remembered and repeated by my mum more than thirty years later, when so much else was forgotten.

We’d lived in a bungalow before, so an upstairs and downstairs, fitted kitchen units, breakfast room, wood-block floor in the living room - and a separate downstairs loo! – were luxury indeed. There were double garages (even though most people then had only one small family car); and, unlike the street we used to live on, all the front gardens were open plan, with just a tiny strip of concrete to mark the boundary of each property.  The houses were staggered, so that none was immediately overlooked by its neighbour – informal, yet private. How aspirational it must have seemed to our parents, who had grown up in the shadow of war and rationing.

My father’s public sector employer had set up a new HQ in the area. Many of the neighbours worked there too and moved in at the same time; they had children of a similar age – a ready-made community of playmates.  In those days, primary school children didn’t have homework, exams, or too many structured activities.  On sunny evenings, we’d wander round to each other’s houses in the quiet cul-de-sacs, and ask if Angela or Julie, Debbie or Mandy could come out to play?

We’d ride our bikes along the paths that ran around the back of the estate by the stream, make bridges and dens with debris left behind by the builders, and lark about in the foundations of unfinished houses at the top of the road – no “health and safety” then!  We’d dress up in net curtains and “ballet dance” to records in each other’s bedrooms, or “show jump” on space-hoppers in the back garden...

Those days are long gone.  Angela, Julie, Mandy, and I grew up and moved away.  And in recent years, the house that was once such a happy home became a prison to my mum – and to me.

My father died in 1988. I had not yet graduated, but the companionable retirement my parents had anticipated was cruelly ripped away. I was at university, having to study for my finals. Mum couldn’t bear to be alone.

For the first few weeks, she spent nights with a variety of friends, but was reluctant to return to the empty house.  It was some time before she conquered that feeling, and on retirement got a bichon frisé puppy to keep her company; we both adored him.  Arguably, though, he kept her tied to the house, when she might otherwise have been able to travel and make new friends.

For a few years, things moved forward.  Perhaps keen to erase the sad memories of my father’s death in that house, mum threw her energies into redecorations.  She had always been a keen browser of soft furnishings, and I was from childhood her partner in crime on many a trawl of interior decor shops.  Now I visited at weekends, to find new curtains, wallpaper, double-glazed windows, and made-to-measure white bookshelves; but the house was still our home.

“Isn’t this a lovely room?”, mum would often say to me in the calm pale green living room with big windows, looking out onto a peaceful copse at the back.  She loved to feed the birds and squirrels. “It’s so quiet here!”

But gradually the mood changed with her dementia.  Those trees, once soothing, became dark and threatening to her.  “What is this place?”, she started to ask.  “Why have you dumped me in this empty hotel?”

And as she stopped recognising the home where she had lived for nearly 40 years, she grew frightened by the very things that were selling points to the young: double-glazing that kept the air in and noise out; privacy, bordering on isolation; people passing only in cars; no shops within walking distance, nor public transport for those too frail to drive.  “There’s nobody about...”

We were lucky that she could afford taxis into town; the regular drivers were kind and looked out for her, helped her with her shopping. But there were more and more incidents of confusion: mixed up appointments, lost bank cards, purses, and forgotten PIN numbers.  Taking mum’s booking became a liability for them.  She was no longer safe to go out on her own.

So during the week she was confined to the house; and increasingly when I was there, I found I couldn’t leave her alone for a minute – if I dropped her off in town to park the car or just got up to pay a restaurant bill at the bar, I’d have to hurry back to where I’d left her, before mum wandered off or got distressed.  Supermarket trips became a trial, as she couldn’t walk far but insisted on accompanying me every step of the way; I could never go out of sight.  It became easier just to stay in.  Even then, I could barely leave the room to put the kettle on or go to the loo.  Neither of us could go out.

The house became run down.  For years leading up to this point, mum had been reluctant to allow workmen in for maintenance; any jobs that needing doing, I would have to organise, often against her will.  Cleaning too became a battle.  Mum insisted that she did it herself, but this was a sad delusion.  In truth, she was neither willing nor able by then.  My visits were no longer relaxing social occasions, but frantic covert schedules of domestic chores and admin, done hastily - and fearfully - behind her back.

Eventually, mum’s symptoms were such that she had to go into residential care.  One day in the early autumn of 2011, I had to manoeuvre her out of that house - knowing, as she did not, that she would never be coming back.

I had to lock it all up and keep it safe in my absence from 100 miles away; gradually clear it of all our valuables, documents, and personal things, and the hundreds of hoarded and hidden items that mum had amassed in the throes of her illness, when she couldn’t remember what she’d already bought: mountains of bed-linen, crockery (especially mugs), make-up bags, purses, mirrors, novelty key-rings, gift sets of toiletries, rooms full of soft toys that had to be “put to bed” each night, scissors, umbrellas, costume jewellery, drawer after drawer of greetings cards and stationery, and scores of M&S canvas ‘bags for life’ (aren’t they just?).  Madness in 3-D.

Nowadays, my wallet is not full of credit cards, but Gift Aid cards for the many charity shops I’ve frequented.  If they gave Air Miles at the local recycling centre, I’d easily have earned a spa break in the Maldives.

I’ve washed and scrubbed and hoovered; made teas and coffees for numerous workmen.  Preparing the house for sale to pay the care fees, I’ve had to stand by and watch a parade of strangers troop through our home, assessing our belongings and by association our lives, and for the most part deeming them worth very little.

It’s taken me the best part of two years on my own.  In all, I’ve been shackled to that house longer than either of my parents.  I’ve sobbed my heart out there, screamed in frustration and despair, knowing that no-one would hear through the double-glazing, no-one passing by in the cocoon of their car would have any idea of the anguish behind those walls.

And as I’ve spent my weekends and Christmases in solitary confinement, disposing of our collective lifetime, I’ve paused to glimpse through the window the new generation of children setting out on their bikes (in crash helmets now) and parents unloading shopping from 4x4 vehicles that always stay on the drive, too big for those 1970s garages.  That’s how we must have looked: carefree and busy with the bright new present, blissfully unaware of what the future might hold.

I’ve looked at our treasured possessions and agonised over what to do with them now. Anything that mum can still use or appreciate, I’ve taken in to her.  But what of the rest?  The silver 1920s tea set belonging to her mother, discovered in the loft?  She fretted over its apparent loss for years.  “Here it is!”, I wanted to say.  “Not lost or stolen after all!”  But she wouldn’t recognise it.  The colourful Spanish dish, brought back by a dear late friend from her holiday?  It would be just a bowl. Even mum’s wedding dress, kept in pristine tissue paper for nearly fifty years?  Would it mean anything to her now, except perhaps a vague reminder of loss?

Things are no more than things when robbed of the memory that gives them meaning.  The silver tea set, once so precious, an auctioneer declared to be just electro-plate of a common design – not worth listing for sale.

So what did I salvage at the eleventh hour?  A sunflower door-stop that had been an everyday feature of our living room; and a musical box – three kilted musicians made of felt, playing the Skye Boat Song.  I can still see the little shop where mum bought it for me on a day out when I was six years old.  She coached children to sing this song in competition at music festivals, as she had done as a child.  I have no children to hand these memories on to; but for the moment, they remain precious to me.

Mum is unaware of all this.  She has no sense now of that house and we never speak of it.  “Home” to her is the place where she lived as a child in the 1930s and 40s with her parents.

So shall I, when I’m 80 and have dementia, be back in this house in my head?  Looking in vain for my mum and dad to a soundtrack of Bay City Rollers?  Perhaps memory itself is a prison.

I always thought I would shed a tear when I slipped the keys through the letterbox and left for the last time.  But when the day came, I was so tired – mentally, physically, and emotionally - I was simply glad to be finished at last.  As I drove away from that town where I don’t belong any more, past the restaurants filling up with evening trade – couples on dates, workmates out for a drink, families celebrating birthdays and exam results - I felt sad, yes; not to be leaving, but sad for all those lost years, when I should have been making a life in the present and the future, not trapped in someone else’s past.

That, for so many of us, is the dearest cost of dementia.