An Act of Remembrance - Update 2019

This Mother’s Day – just like every other day of the year – I’ll be thinking of my lovely mum, Glenys, who has lived with dementia for over twenty years. She’s in residential care now in my home town, and I’ll visit her on the day, as I do most weekends and public holidays. For many years, until 2011, I was her sole carer in our family home and by distance during the week (my own flat being 100 miles away in London).  

I’m a drama scriptwriter by profession, and in May 2017 my play The Things We Never Said went out on BBC Radio 4, starring Lia Williams and Siân Phillips. It later won the Writers' Guild Best Radio Drama Award 2018. In the past, mum would have been thrilled to share such news, would have tuned in with excitement, and called me after to enthuse about the production. Even if it was not to her taste, I suspect she would have praised it anyway – for I was her beloved daughter.

Today there is none of that. Mum has never heard the play or even known it was on; I didn’t tell her, as I knew it would mean nothing. And yet it’s all about her, about “us” – the people we were, and the strangers we have become. I have written before about that journey of unknowing, the subtle, devastating difference between recognition and connection; mum and I have now drifted even further apart. 

Such fracture would have been unthinkable to either of us twenty years or more ago. Both only children (mum widowed, I single), we were each other’s only immediate family, each other’s best friend. But somehow, in those twenty years, the umbilical cord of all our life’s experience started to detach.

Mum has been in care for over seven years now, in two different homes. The rupture began long before that. I see it now, in odd, malevolent looks she would sometimes cast me, as we sat at home watching TV; in strangely inappropriate gifts, more suited to a child; in wild rages and accusations of uncharacteristic vitriol; in the bewilderment on her face, when I let myself in with my key. Now I see: already, she didn’t know who I was.

Back then, in our family home, she still had the social facility to cover it up, pretend to be “au fait” (one of her favourite phrases). She took her cues from the context: this woman is in the house; she knows me; I must know her. And (crucially) there’s no-one else here…  

Looking back, I realise that around this time she stopped driving conversation. Always a prodigious and entertaining talker, she became not mute, but unusually tight-lipped. As if there were some passive-aggressive sulk going on beneath the surface – a silent antagonism that said I had done her some inexplicable wrong. When I served her meals, she would thank me courteously, somehow too polite, ingratiating almost; and as she ate, she might look up now and again and comment, “this is very nice, thank you”, with a gracious nod of the head. I couldn’t put my finger on it at the time, but now I see: she was addressing me as a waitress.

Yet this unspoken estrangement didn’t make her less dependent on me. On the contrary.  She became unbearably clingy. Increasingly unsteady on her feet, she would refuse a stick on trips out, preferring to clutch limpet-like to my arm. At home, I could hardly leave the room by myself, let alone the house. On days when I had to drive back to my own flat in London, it would take until mid-afternoon to extricate myself from her maddening ploys to stall me. As I finally pulled away down the road, I would find myself screaming in the car.

My mother’s as-yet-undiagnosed condition trapped us both and locked us away from the world. Her intense, suffocating neediness convinced me that I was uniquely necessary to her and any attempt to regain my own independence would mean abandonment of her. It caused terrible guilt and trauma when those needs became too great for me to manage alone and I had to place her in care. I feared she would never settle, the distress would be too much. But in fact she has done well.  

She needed someone with her 24/7. She needed someone. She didn’t need me.  

In those latter years in our own home, mum relied on me not as myself, as “Ming”, or even her daughter; she relied on me as her carer (though she never saw it as that) - the person who shopped, and cooked, and cleaned, did the washing, managed the builders, handled the boring finance and admin; the person who always came when she called, who generally kept her alive. She relied on me, just as I had relied on her as an unknowing helpless baby. That most primeval impulse: to reach out to the one who nurtures, cry out in the darkness for “Mummy!”

Rewind a decade or so, to when I worked on the TV series EastEnders. Each new episode of mine would delight her, long after I’d become blasé. She’d call her friends, tell shop assistants, write proud notes in her diary: “Ming’s EastEnders today!  Very good!!” A few years on, things had changed, although I didn’t understand it then.

One Saturday night, I was visiting for the weekend and had an episode of Casualty on. Mum showed no interest in the programme. In fact, she paid no attention – just carried on with her crossword, talked all through the dialogue, dozed off for a while. And when it was over, nothing. I was hurt, I have to confess. (OK, so it’s not Shakespeare, but come on, you’re my mum!) I too said nothing, though. What could I say? I told myself she was getting on and could be forgiven for dozing off; and it was just another episode of soap. Not big news any more…

A few months later: another episode of something. This time, I was in London.  As the credits rolled, the phone rang. It was mum, as usual. But she didn’t mention the show. We chatted for some time, and finally I asked, “Did you see it then?”  “See what?” I named the programme. “Oh, yes”, she said flatly. “Well, what did you think?” A long, blank pause. “Not much”, she said at last.  “Stupid story, wasn’t it?” 

By then, I realised she had forgotten that any of these programmes were anything to do with me, if she was aware of them at all.  She didn’t mean to be unkind. But still it did hurt. Because I had to ask myself, are these her honest thoughts? Is this what she really thinks of my work, stripped of motherhood’s indulgence?  

For her first two years in care, this encroaching “unknowingness” existed alongside our old relationship. She would not remember the context of my life or our relationship outside my visits, or the visits themselves once I’d gone. But in the bubble of those few hours over lunch and then tea, we were still mother and daughter – even if, in her eyes, I was the former and she the latter.  

Christmas 2013 marked another watershed. Each week, I would find mum in the lounge, already seated at the table by the staff for me to join her for our lunch.  Her mobility now greatly impaired, she had acceded to a wheelchair in recent weeks, so I was doubly surprised to meet her walking (stick-less!) toward me down the corridor from the lounge. I went to take her arm, and instinctively she recoiled, her face aghast with mistrust. “What’s the matter?”, I asked. But as I said it, I knew. “It’s me”, I said. “I’m Ming.”  “Ming?”, she said, bewildered. “Oh, Ming…”  It did come back, but I knew: out of the familiar context of the lounge, I could have been anyone.  

I hugged her to me; she hugged me back with skeleton arms. “Don’t forget me”, I pleaded - though I knew I shouldn’t, it wasn’t a promise she could give.  “Please, don’t forget me!”  “How could I forget you?”, she said. “You’re my Ming.  You’re my little girl.”

But by the spring of 2014 she had.

So where are we now? What am I to her? The harsh truth is probably nothing.  She has not just forgotten me as the person I am today - she has no memory of the young woman I was, the teenager, the little girl, the baby in her arms. She does not believe she ever had a daughter.

Yet dementia is not a one-way street; it has countless meandering byways. Up to a couple of years ago, mum might greet me with pleasure on a good day and say I was “a lovely girl”, regardless of who I was.  On a bad day, I’d be met by antagonism or just a blank. Sometimes she’d still call me by name, as if I’d just stepped out for a moment and we could pick up where we left off. But there was no longer any root to that knowledge; it was no more than a reflex – and now even that much has gone. Her eyesight declining, she barely registers my presence at all.  

Her speech too, once so animated, is now eroding, along with the context that had long preceded it. Over the years, I had grown to accept that attempts at conversation must be on her terms, referencing her life before I was born. Now even those memories of her youth, the stories she told me about herself, are remembered only by me. What she yearns for most are her parents – and I can’t give her that.

So I put on a CD; TV has long since become too confusing. She still enjoys music, though not necessarily the same kind as before. I bring flowers, feed her fruit and cake, make her a cup of coffee; she used to drink tea like me, but so many tastes have changed…

As dementia shrinks down your world, small pleasures become more precious.  Very occasionally in recent years, I have been able to wheel mum down to the garden in fine weather. I treasure those rare occasions when she can still enjoy the breeze, the birds, the warmth of sun on her face. I enjoy them too. But I can’t say we do it together. Side by side we are separate now. I miss the light of connection in her eyes.

Some time ago, I had a review with the Office of Public Guardian Visitor, who supervises Court of Protection Deputies like me, who manage the financial affairs of a person lacking capacity. As we went through the bank accounts, he asked me why I visited my mother so often (it’s a two-hundred-mile round trip).  I was taken aback. Surely it’s obvious? She’s my mum. She’s over ninety, with advanced dementia; I’m her only family. Yes, but what is the purpose of these visits, he persisted?  

I have to see how she is, I said; to make sure she’s all right, that she has everything she needs. You could do that by phone, he said.  Some deputies visit only once a year. I was perplexed at this approach. She’s forgetting me, I said; I come as often as I can to keep up the connection…

Is that for her though, he asked; or is it really for you?  

Afterwards, I realised that he wasn’t criticising me, merely pointing out the distinction between my legal obligations as deputy and the personal actions of a daughter. But it gave me pause for thought.  

Each week, I drive down past the country pub where we used to go for Sunday lunch; the garden centre where we spent many a happy afternoon, choosing bedding plants and hanging baskets; the park we used to pass every day on the way to school, where families walk their dogs. It’s as if I’m driving past our old life and it won’t let me in.  

Intimacy has gone; our shared history is erased.

My mother is not dead, but I mourn her every day. I mourn myself too, and that long-gone life we shared. But I will never abandon her. I will never give up. So long as she is still there, I will always continue to visit. Why?  

Because I love her; and I know that she loved me. I do this as an act of remembrance.

Cake: Dunn's Bakery, Crouch End, London

If you are caring for someone who has moved into residential care or is facing that transition, charity Dementia Carers Count offers support tailored to this stage of the journey and end of life issues, among its range of core resources for friends and family carers of people living with dementia. Contact them for details. 

My play, The Things We Never Said, is not currently on BBC Sounds, but can be downloaded to read from the BBC Writersroom Drama Script Archive.  You can also hear an extract from the radio production and discussion on BBC Radio 4’s Fortunately podcast with Jane Garvey and Fi Glover (@ 10’ 33”).

This updated post was published on the Dementia Carers Count website in three parts for Mother's Day 2019: 

Part 1

Part 2

Part 3

[Update 2020: Mum died in January 2020. We were fortunate that it was before the restrictions of COVID-19 and I was able to be at her side, day and night, for two weeks before she died. At peace, at last.]

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.)