Knowing Me, Knowing You

“Does she still recognise you?”  That’s what everyone asks.  Answer: for the moment, to some extent, yes.  My mum does still recognise me.  She knows me by sight.  But what does that phrase really mean?

Think of the many people you “know by sight”: members of your gym class, a cashier in your local supermarket, fellow commuters on your train, regulars at your favourite coffee shop or bar.  You might exchange the odd word, perhaps even know their name and ask after their family, their health, their plans for the weekend. 

But meet them out of context – fully-clothed in the street, instead of lycra-clad in the gym, or on the Tube, not at the till – and you may be thrown.  You know you “know” them, but are not sure where or how.  So you nod and smile, make small talk, or just keep quiet while they speak, in the hope they’ll give you some clue, and maybe it will come back. Maybe it won’t; but through this non-committal pantomime, you will have covered up your mental blank, met social expectations – and the other person need not know you don’t fully remember them.

This is now the level of my relationship with mum.  Yes, she responds to my face; I worry that her sight is declining and still value that.  I know I am lucky she can still speak and hear; we can engage to some degree.  She acts as if she knows me.  But all intimacy is gone.  An only child in my forties, I am no more significant to her than some tolerably pleasant woman she might have nodded to in a café, when she still went shopping in town.

That’s not to say she doesn’t care about her daughter.  Ask her, and she will say she loves her very much.  But that daughter, or that “Ming”, is an abstract notion, an amorphous idea of a young girl.  Mum can’t equate that with the actual middle-aged woman who sits at her bedside. On the table before her will be recent photographs of me that I’ve labelled with my name, in hope of reinforcing the connection.  She will often be fixated with these, remarking on them to me (not always in flattering terms!), and they will be more real and interesting to her than the flesh-and-blood Ming in the room.

Since I realised mum had dementia, I always knew there might come a time when she didn’t know me.  But I thought it would be at a stage where she didn’t know or respond to anything much. I had no idea it could co-exist with relative articulacy and sentience. I never imagined the slow and insidious way that “unknowing” could creep up, or the sophistication of mum’s facility to conceal it.

There have been times in recent years when it has been painfully explicit (as I have detailed in my earlier post, I Don't Know Who You Are); but with hindsight, I can see instances much further back, when the underlying clues were there. Mum loved to give presents, for example, and rarely ventured out without lighting upon something for me: purses, make-up bags, trinkets, jewellery. However, these gifts grew more inappropriate and sometimes downright bizarre. I was puzzled when she pressed on me a lurid silver, pink and mauve bangle of a kind I would never wear - more suited to a pre-teen Britney Spears fan than an adult. 

At the time, I was rather irritated at both the apparent lapse in taste and waste of money – affronted that, in choosing this, she didn’t seem to know me.  Little did I realise that was the literal truth.  She was buying that bracelet for the teenage me in her head, not the real woman I had become, or for a notional daughter whose taste she no longer recalled.

There were other more immediately troubling incidents, when she would suddenly say things like “are your parents alive?” or “when are you going back to Hong Kong?” (I’ve never been and live in London), which might be deemed obvious signs that she thought I was someone else; but if I looked askance or remarked on it, she would instantly cover up and the moment would be past. Sometimes I would catch her looking oddly at me, but she would say nothing. Now I think she was wondering who I was.

For all my life, until dementia took hold, mum and I had been close, with no other immediate family since dad died in 1988.  It is infinitely sad that not only has our current relationship lost its roots, but I find myself questioning the last decade or more, when those roots, it seems, had already begun to wither unseen underground. How much of our intimacy then was a sham, mum just going through the motions, humouring a vaguely familiar woman whom she “must know” because she happens to be in the house?  Could it be that we were living as strangers for pretty much all of that time?

Now that we are entering the last phase of mum’s journey, I have learned that “recognition” is not the same as “knowing”.  You might recognise the cashier at your supermarket till, but do you really know her? Not unless she’s a friend. “Knowing” comes from accumulated memory, the incremental sum of facts and thoughts and feelings about another person that go beyond superficial contact.  My mum still recognises my face; she sometimes knows my name, sometimes knows I’m her daughter and sometimes knows that she loves me, but rarely all those things at once.  I am lucky to have that much.

But I have realised that she no longer knows me in the deeper sense.  As she will sometimes say herself, she “knows nothing about me”: how old I am, where I live, what I’ve done for a living, if I’m married or have children.  She doesn’t know what clothes or perfume I like, what food l enjoy, what matters most to me – even what kind of person I am. 

When I visit her now, she will usually accept my presence without question and speak to me in a way that assumes we are familiar, as if taking up where we left off.  So long as I keep the chat to a minimum or on neutral ground, we have the illusion of intimacy; but if ever I stray to something specific about our lives, it’s all too apparent that mum has no idea what I’m talking about.  I feel a distance between us – a knock on a door that cannot be answered. “Remind me again, who are you in relation to me?”, she said a couple of weeks ago, as I was leaving after a whole afternoon in her company.

The photographs here are just a tiny fraction of the images of our shared lifetime that I carry in my head. Mum would have no idea of the relationship between the first and the last or any in between; she would not be able to recognise them as herself and me.  And I’m afraid none of them is in her head. 

How do I know she doesn’t really know me, if she acts as if she does?  By her lack of interest in, or concern for, the person who visits.  I know she loves her daughter; so if she knew that person was her daughter, she would care.   

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.

A Stranger In My Home Town

My mum used to love Easter. More than Christmas, which was about drawing the curtains and holing up indoors against the dark nights; Easter meant the beginning of lighter evenings and longer days, daffodils in the garden, birds nesting in the eaves - everything fresh and green and full of new life.  

I was always home for Easter weekend, bearing the “Rolls Royce” of hot cross buns and simnel cake from the special bakery down the road from me. We’d sally forth in the car to one of our favourite haunts for a pub lunch or cream tea and potter about at craft fairs and farmers’ markets.  When she got older and more physically frail, we could still enjoy the beautiful scenery on our doorstep: gentle rolling hills, sheep in the fields, and golden stone that seems to smile in the sun.

This year, I could still bring mum cake and hot cross buns.  But they’re surplus to requirements.  She doesn’t register festive days any more, and there are freshly-made cakes* aplenty in the care home where she lives.  I’m grateful for that.  She likes their meringues, cream puffs, and sherry trifle; they keep up her interest in food.  But we’ll never again eat a meal together cooked by one of us in our own home.  And it’s over a year since we’ve been out.

If it were just a question of physical capacity, there would be aids to help. I look enviously at families visiting the residents in the ground floor unit, who might be in wheelchairs, but don’t have dementia. They can go out.  More importantly, they can speak to their loved ones on the phone between visits and anticipate such trips.  

Some people in mum’s unit can still do those things too. But not my mum. Formerly a prodigious talker, she now struggles with the technology and concept of phone conversation. (We take for granted the understanding that a voice on the other end of the line can be the same person we know in real life, just not in the same place, or that a recorded message can’t answer back; a person with dementia may become confused about such things).

With no short-term memory, she can’t look forward to future plans or recall pleasurable incident just past. She can’t remember having been in one room, once she has passed into another. Going in and out of the unit – even downstairs to function rooms or to the gardens in summer – is too disorientating for her.  

It seems unbearably sad for her life to be confined to just two or three rooms and a corridor. So for the first few months of her residence, I persisted with attempts to take her out, naively thinking it would be no different than our regular pre-care home jaunts to country pubs, our favourite restaurants in town, the theatre, or cinema. 

I finally came to accept that it caused more harm than good. In truth, the wider world had already become a threatening blank to my mum, long before she went into care. For some months, I had been shocked to find that she had no recall in conversation of the most familiar places – the main street she’d browsed in daily for 40 years, the restaurants where we ate each week, shops where staff knew her well and always welcomed her for a chat.   

At times, I became frustrated; I simply couldn’t believe that she didn’t know what I was talking about.  How can you forget so completely the everyday local knowledge that binds you to the place where you live?  The network of usage that makes you part of that community?

She’d been a teacher, and when I was a little girl I attended the same school. Before and after lessons, I’d wait in her classroom, sharpening pencils, helping to pin up children’s work on the walls, or playing the glockenspiel; and then we’d head home together. The journey took us through the town centre, where we’d have to change buses. Every day, we’d walk through the department store, sometimes looking speculatively at furniture (one of her perennial obsessions!), or more often lingering in the perfume department.

She would gossip with the assistants, while I was fascinated by the toiletries: not the expensive fragrances from Chanel and Christian Dior, but lemon-shaped soaps by Bronnley, in their waxed paper wrappers like Christmas tangerines; bracing 4711 Eau de Cologne in sprays and perfume sticks that I’d surreptitiously test on my wrist; hippy scent Aqua Manda, in its dark brown apothecary’s bottle, heady with orange and spice and patchouli - and, most exotic of all, Maja.

Maja came from Spain. There was eau de toilette, talcum powder, and soap in a dramatic red, black, and gold box, proud flamenco dancer in full flight. The soap came wrapped in black tissue: unusually khaki-coloured and very grown-up to a young girl, with a subtle, woody, spicy aroma. It wasn’t always in stock, which made it a treasure to find in any other store; and sometime in the 1980s or 90s it was discontinued in the UK.

A few years ago, I was then delighted to find it available online. It would make a lovely Mother’s Day gift, I thought, recalling memories of that time when mum and I were always mooching in town together. So I had it shipped all the way from the US and excitedly presented it to her. She opened it with only mild interest; sniffed and quite liked the perfume; then casually returned the soap to me. I was disappointed and not a little hurt by this reaction.

Looking back, her dementia was more advanced than I had realised at that time. She still functioned well in other respects.  But now I see: how could she recall the memories evoked by that scent, when she already struggled to recall the department store in town, the main street where it stood? These are landmarks known by all who live there, as familiar to us as our own house. And now she doesn’t remember that.

Of course it’s possible the soap meant less to mum in the first place, and that memory from thirty years ago was understandably hazy. But a person without dementia would have remembered something of it when prompted, or had the social grace to cover it up. Dementia just leaves a blank.

I had moved away to London when I graduated in the late 1980s, but continued to visit every other weekend and for longer spells. As mum’s dementia grew worse, I found myself spending more and more time back at the family home – to the extent that I often felt I was living her life more than my own.  That town was as much my home as hers, as much my home as my own district of London.

Suddenly it’s over. I still go to some of those places on my own, but it’s not the same. I can't talk to mum about them, in case it disturbs her fragile sense of where she is now. And with no personal connection, nothing to root me in that community by everyday engagement (stocking up with mum at the supermarket, browsing for clothes together in the town centre, paying her paper bill, taking rubbish to the dump), I’m an outsider.  

All the things we used to do that were bound up with that place – our shared rituals, the life we lived there with my late father – are only in my head now. No-one else remembers.

Dementia, we are told, attacks short-term memory: “they still remember the past”. Well, only selectively in my mum’s case, and only her own past - mostly her childhood or youth, long before my time. My past - and much of my present, the memories we shared of my lifetime - has gone.

A few weeks ago, she asked me out of the blue if I had a husband. I don’t and never have. I laughed it off at the time. But if she has no idea of something so fundamental about me, how much of me does she now remember?

The bereavements of dementia are many, and some are better known. I have come to realise that this cruel disease has not only robbed mum of much of the life we shared - it has left me alone with my own memories and made me a stranger in my home town.

(*This post was written in 2013. Sad to say, by 2016/17 the excellent selection of freshly-made cakes had largely disappeared, due to budget cuts at that home - a common scenario in the current climate of the care "industry".  See my four-part post, Five-Star Hotel, Five-Star Care?  In May 2018, I moved mum out to another home. 

She no longer knows me at all. You can read about our more recent situation in this post, An Act of Remembrance - Update 2019.)