Monday 8 May 2017

An Act of Remembrance

On Thursday, 11 May, my play, The Things We Never Said, will go out on BBC Radio 4, starring Lia Williams and Siân Phillips.  In years gone by, mum would have been thrilled to share such news, would have tuned in with excitement, and called me after to enthuse about the performance.  Even if it was not to her taste, I suspect, she would have praised it anyway – for I was her beloved daughter.

This time, there will be none of that.  Mum won’t listen, or even know it’s on; I won’t tell her, as it will mean nothing.  And yet it’s a play all about her, about “us” – the people we were, and the strangers we have become.

I have written here before about that journey of unknowing, the subtle, devastating difference between recognition and connection; mum and I have now drifted further apart in that bleak and lonely landscape… 

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, as I best remember her... (Me, behind in the mirror)
Mum has been in residential care for over five years now.  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) illness 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, 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; we’d gone out early to eat.  I had an episode of Casualty on and wanted to get back quickly to watch.  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? 

Now I visit her in the care home most weekends.  For the first two years, this encroaching “unknowingness” existed alongside our old relationship.  She would not remember the context of my life or our relationship outside those 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.”

So where are we now?  What am I to her?  It’s impossible to say.  Dementia is not a one-way street; it has countless meandering byways.

On a good day, mum will greet me with pleasure and say I’m “a lovely girl”, regardless of who I am.  Sometimes she’ll call me by name, as if I’d just stepped out for a moment and we can pick up where we left off.  But there’s no root to that knowledge.  It’s no more than a reflex.

We don't talk much; I have to accept it must be on her terms, 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 is too much stress.  A former singer, she still enjoys music, though not necessarily as before.  I bring flowers and cake, make her a cup of coffee; she used to drink tea like me, but so many tastes have changed…

There are things for which to be thankful.  As dementia shrinks down your world, small pleasures become more precious.  If the weather’s fine, I might wheel mum down to the garden and we’ll sit out there for a while.  We’ve only been able to do this a few times since last spring; she was bed-bound for eighteen months before.  So I treasure those rare occasions when mum can still enjoy the breeze, the birds, the warmth of sun on her face.  I enjoy that too.  But I can’t say we do it together.  Side by side we are separate now. 

This picture was one of those “good days”.  Dressed in her favourite bright pink jumper, hair newly washed, mum looks animated here, caught in mid-conversation.  Except she isn’t talking to me.  Her incessant stream of whispered monologue is directed at a person on the other side of her, whom only she can see.  Her hair looks nice; the staff have blow-dried it with care.  But it’s not her style, the mum I used to know; and if she looks at me, it’s with a stranger’s eyes…

The other week, I told a friend how hard I find this now - to see mum looking so changed.  “She’s ninety”, said my friend, “no-one looks the same”.  But it’s not just the physical change.  I look at other friends’ mothers of a similar age: white-haired, yes, and frailer, but still emphatically themselves.  Hairstyle, clothes, and make-up are only part of the equation.  I miss the light of connection in her eyes.

Another garden afternoon: mum is oblivious to me
We don’t share lunch any more.  Mum eats little and early.  I bring a sandwich to eat in her room; and in the awkward intimacy of that act, each bite audible in the silence, she watches me with something approaching distaste.  The mechanics of eating are not pretty, I admit.  Yet such clumsy-grotesque bodily function can be endearingly familiar in those we love.  Her distaste tells me I am no longer of her flesh.

On a bad day, she won’t engage with me at all.  Sometimes barely awake, others alert with antagonistic spark.  Last week, for something to say, I showed her a photo of us together that I’d glued to an Easter card (the written word mere hieroglyphics to her now). “I’m not interested!”, she said and batted it away.  On days like these, anything I say, everything I try, will be met with a blank, a dismissal – at best a humouring nod. 

That day, I slipped out early.  Across the fields at the back of the home, lambs bleated in the distance.  I walked down to take in the view; sat for a few minutes, breathing in the peace and cool air before my long journey back to the city.  How strange, I thought, to be sitting here on my own, while behind me there’s mum’s window, and behind that she will be sitting alone there too, oblivious to my presence a few short metres away. 

A couple of months ago, I had a review with the Court of Protection Visitor, who supervises appointed 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 ninety, in end stage 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 replied; 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.  (If you are in care with no immediate family, your deputy may be a distant relative or legal professional.)  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. 

Every week, I drive down past the country pub where mum and I used to go for Sunday lunch; the spa hotel where she once booked us a swanky post-Christmas meal that proved to be a wash-out; the garden centre where we spent many a happy afternoon, choosing bedding plants and hanging baskets.  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.  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.

[In January 2018, the play won Best Radio Drama in the Writers' Guild Awards 2018Listen to a discussion and extract from the play on BBC Radio 4 Fortunately (@ 10' 33") and read the script here via BBC WritersRoom.

There is also an updated version of this post as at April 2019.]


  1. What a moving post - I can totally understand the devastation you must feel. You've really captured the slow grieving process of losing a mother to dementia, the relentless feeling of bereavement and loss. It's unlike any other condition in that regard - you lose your mum, she loses her daughter and nothing can be done to formally mark that loss but your act of remembrance will help others to feel less alone.

  2. Thank you. Sometimes all you can do is be honest about it, but it's constantly shifting, hard to pin down...

  3. I have often wondered what my mum gets out of my visits. It used to be smiles, laughter and chat but she is more agitated now and can't express herself. In all this I find myself desperate to know how much she knows about her predicament. Since she is teary sometimes I reckon she is more knowing than we all expect her to be, and that is painful. I am fascinated to discover your blog now that I am exploring the experiences of others. There is so much more to this than us being an unfortunate family who make small talk and sit together for the sake of honouring our mum. I want to be with her as she experiences this frightening time. Thank you Ming. I will read on.

    1. Thank you. It is endlessly perplexing and disorientating, emotionally and psychologically, for both parties.

      As you say, we cannot know what the other person perceives, even if they sometimes express thoughts and feelings, because it's constantly shifting from moment to moment, as is the means of expression. (I'm lucky in that my mum still retains the facility of speech, although it's declining; it's the content and context that have receded first.)

      One aim of my play (BBC R4 14.15 11 May) was to imagine the situation from mum's point of view; my grief and frustration, I believe, is mirrored by hers - the tragedy is that we still have each other, but neither can comfort or reassure the other because our planes of reference no longer align.

      And there are so many different states along the way, it's not a linear process; you may think you've reconciled yourself to one loss, but a random flash of insight casts that into doubt.

      (I've written about one such instance in my earlier post, 'I Don't Know Who You Are', in the sidebar links under Emotional Impact, as well as linked in the body of text above.)

      There's much emphasis now in the media and among care professionals on the positives - the faculties, interests, personality, feelings still retained to "live well" with dementia. That's absolutely valid for many people much of the time and would have been so for my mum for 10-15 years of her earlier symptoms; some may never progress beyond those earlier stages. But for those who do (and those who love them), the darker shades of the later journey should not be denied.

      I also believe that it's easier for professionals to focus on positives in those latter stages, because they don't have that lifetime of emotional investment and history of loss.

      All the best to you and your mum. Thanks again for reading.

    2. I couldn't agree more. I am all for positive thinking (especially for professionals and carers), and my mum has been extremely stoic up to this point, but so often now, she seems to be saying 'I've put a brave face on this, but I'm not playing anymore.' She is only 69 years old (11th year of Alzheimer's) so goodness knows how long she will have to bear life in this way. They say dementia patients tend to have 10 years of life from diagnosis but we both know this isn't necessarily the case (my theory is, that idea is skewed by historic lack of diagnosis until later in life).

      Thanks for the heads up re. your radio play. It is very timely and I will be listening 100 percent.

    3. Agree about the 10 years thing; my mum was symptomatic for probably 15+ years before official "diagnosis" (which was only ever by observation from a consultant psychiatrist, because she would never agree to formal testing of any kind). That diagnosis was only finally recorded because by then I needed legal authority to manage her affairs to pay for care; no-one supported us before that crisis stage (and not much after! See post on importance of diagnosis in sidebar.)

      This is why I'm also frustrated at the media and campaign presentation, "a diagnosis of dementia is a life-changing event". Er, no; developing dementia is the life-changing event. Getting a diagnosis (or trying to get one) may be traumatic in itself, that's another story, but there's no clear-cut before and after point in practical terms and medically it's not an exact science either...

  4. I have just finished listening to your play and the tears are streaming down my face by the perfect way in which you've captured every emotion and feeling I myself felt from the time before the diagnosis as well as that ever relentless sense of loss , and the crippling longing to be properly remembered however fleetingly. My mum finally left me 3 years ago now and although I've grieved during that time the mum I now believe watches over is that very one who was and still is my heartbeat - the one who's hair and clothes and lipsticks are as they always were, the one who I would call every day and share the mundane with - this is the forever love she promised me . Thank you for putting into words what I've never been able to

    1. Thank you. It is so hard to pin these feelings down; it can only ever be a snapshot. But the more we talk about it, the more we realise we are not alone; so many fellow travellers. All the best to you.

  5. Just heartbreaking - I'm so sorry. I can identify with so much of this. I do think that somehow they know. My Dad met my eyes on the last time I ever saw him and I'm sure he knew just for a second that I was there and that it was me. You're a beautiful writer and your play really moved me and no doubt helped a lot of people.

    I wonder if our paths ever crossed at the BBC - I was there in the 90s in Drama and Arts.

    Sending love to you x

    1. Thanks, Alison. Yes, I think mum does know something of me and/or our life some of the time (& sometimes with a surprising & heartbreaking flash of apparent insight), but it's fleeting and inconsistent, so constantly disorientating - as I tried to capture in the play.

      Your name is familiar to me, but I was never in-house at the BBC; I don't think we've met? In the 90s I was a script exec at Zenith (script edited Hamish Macbeth among other things), sometimes developing things with BBC or visiting for meetings; then in 2000s, freelance as a scriptwriter on e.g. EastEnders & Casualty.

      Thanks again for your kind thoughts; all the best to you too, fellow traveller. x

  6. I missed your astonishing play the first time round, but caught it by chance this afternoon. My own mother died on Millennium Eve after almost ten years of dementia, and the slow loss of her still hurts. It was so good to hear acknowledged, through your work, the sense of abandonment and infantile rage we feel as the adult children of these parents. I was in floods of tears by the end of it, for you and her as much as for me and my mother. You have written something so truly compassionate and brave; thank you so much for joining hands with the rest of us.

    1. Thank you very much for listening and your kind thoughts. There are so many of us in this situation. I hope it helps to know we are not alone. All the best.

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  8. I just came across a link to your play on the Guild website and have listened with tears in my eyes. Thank you so much for writing it.

    I have also just been reading selected bits of your blog and feel both heart-broken for you and sick to my stomach at what you have gone through with the home. It is particularly poignant at the moment because I have shared POA for a dear friend with vascular dementia who still lives at home, now aged over 100, and we are going through a similar, though less harrowing, experience after her very person-focused homecare agency was swallowed up by a comparative giant. We are now getting task-based care, rather than person-based, and a worrying number of the carers who were TUPEd across from the small agency have now left. Complaining seems to get us nowhere - we have seen more new carers in the past six weeks than in three years with the previous agency. And most of them only turn up once, the last thing one wants for a person with dementia. We are scared of shifting to a smaller agency because what is to stop the same thing happening again a few months down the line? At least at the moment there are still a couple of the former regular carers around....

    1. Thanks very much, Cestina, for listening to the play; glad it touched a chord with you.

      My sympathies with your situation. Sadly, it does seem that however much we try to advocate (with constructive comment, as well as complaint, and hoping to work with providers to solve issues), the corporate agenda moves on regardless. That said, we can but try; one day, somewhere, it may make a difference, and we would never forgive ourselves for not speaking up for those for whom we care.

      I agree that continuity is so important, and believe that providers could do more to support and nurture staff; but the financial background is so dire that money is seen as the primary issue, with impact on the individual (both client and careworker) under-prioritised.

      I wish you all the best with your own situation. Thanks again for listening, reading, and commenting.

  9. this article is very interesting, very happy to read it, there is time and opportunity to be willing to play in our place too, thank you very much

  10. Your story is very moving and helpful for me as I am going through this with my mother. We had to put her in s care home , 5 years ago. It is hard not knowing what she is experiencing with Dementia. I an there with her on my 2 days just to be with her. Thank you again, your story is gelphel and encouraging. God bless you.🙏❤️

    1. Thank you. All the best to you and your mum.