Friday 8 January 2021

Snapshot of a Life

My mum, Glenys, died a year ago today. It was not unexpected. She’d lived with dementia for more than twenty years, survived several near-death episodes, and had remarkable strength of spirit that kept her going, but this time she was irredeemably frail and had finally stopped eating before Christmas. For more than two weeks I kept vigil at her bedside; it was clear she would not see much, if any, of 2020. Given the subsequent traumas of the pandemic, I’m thankful she did not and we were able to have those precious last days together.

So I’d had many years to prepare, practically and emotionally. I’d already done so much of my grieving. But when the time came to write her eulogy, it was a challenge. Not the writing itself - as a professional scriptwriter, it’s been my job to condense vast swathes of narrative into a pithy broadcast slot, to weave multiple story strands and themes with a broad canvas of characters. But this was my mum. How could I do justice to her 93 years of life – nearly half before I was born – and honour the person she was, beneath the dementia that had eroded her own memory of herself?  


Student days in Bangor: mum, right
Mum had lived for nearly a decade in care, and although I’d tried to keep up with friends on her behalf, she’d lost the ability to engage with them directly and maintain an ongoing relationship.  As an only child and the only remaining close family, I had long since become the custodian of her identity: writing up the bare bones of her life story as background for care staff at her nursing homes, creating a photo album to archive memories that no longer lived inside her head, advocating for her to services and in legal terms, to determine her “best interests”.  But I was painfully aware that this could never capture all that my mum was – and all that Glenys had been, before she took on that role. 


A person’s life in action is a kaleidoscope of experience, feeling, and collective memory, drawn together from fragments of many sources.  It evolves over time, with the addition of new colours and textures, the view constantly shifting.  Now there was only one source – me - and that kaleidoscope had crystallised somewhere in the early 2000s, when mum was last “herself” and properly knew me as her daughter.  


Of course dementia professionals will tell you a person is still themself throughout their lifetime; it depends what we mean by “herself” - we have to learn to accept that in the moment, whatever it may be. And this is the difficulty for family. How do you reconcile the spirit of the person you knew, before dementia took its hold, with the physical person who remains present for maybe decades after, as my mum did? 
A few years earlier, when struggling with the most turbulent stage of mum’s forgetting our shared life and my very existence, I wrote a play that aimed to explore this emotional and philosophical challenge. Once she had died, however, it became a question of drawing all that together in a valediction of no more than ten to fifteen minutes. Fifteen minutes to sum up a life. I realised that it would have to be a snapshot, not a feature film, and started with the tangible…

An only child, like me, Glenys was born in Chorley, Lancashire, to Welsh parents, Margaret and David, whom she adored; her first language at home was Welsh. Chorley was still a mill town in the 1930s, and she remembered the “knocker-up” going along the street, tapping on the windows to wake the mill-workers.

Mum showed an early promise for singing, and began to train from childhood, when a neighbour, who happened to be a music teacher, heard her singing in the hallway. She quickly began to win prizes, including an engagement to sing on the BBC radio programme, Children’s Hour. The song she sang was ‘The Trout’ ('Die Forelle') by Schubert, which stayed in her repertoire when she became a professional; I used it in my radio play, The Things We Never Said


After Chorley Grammar School, she was all set to go the Royal Manchester College of Music, where she’d already been a part-time student, but it was during WW2, and her parents were worried she’d be called up into the services.  Her father was a teacher (a reserved occupation), so she was encouraged to follow in his footsteps, training at St Mary’s College, Bangor, in North Wales, with relatives nearby.  


She had some regrets that she had allowed herself to be persuaded into this, later thinking that she might have had more exciting opportunities to further her singing career in ENSA, the Forces’ entertainment service; but she enjoyed her time in Bangor, making good friends there, and turned out to have a gift with children. 

After the war, her parents, who had always been homesick for Wales, moved back to the Llandudno area, where most of their family lived. Glenys moved down to London with a number of fellow students from Bangor, and worked as a supply teacher, while resuming her training as a singer. She pursued a professional singing career in the 1950s and early 60s, performing oratorio and Lieder, mostly in Wales and the north of England. Janet Baker (now Dame) was one of her contemporaries on the Northern choral circuit.

It was while she was appearing in a concert in Oxford that she met my father, Wai Kwong Ho. Born in Shanghai, he had come to the UK to study nuclear engineering at Imperial College, London University, and was at that time working at Harwell atomic research centre, near Oxford. He and mum found themselves staying in the same boarding house, and the rest is history! 


They were married in Oxford and began their life together on the remote Romney Marsh in Kent, where dad had been appointed to the newly opened Dungeness Power Station. I was born a year later – on their first anniversary, in fact! – and mum became a full-time primary school teacher.  

Just before my eighth birthday (a time of power cuts and three-day weeks), we moved to Cheltenham in Gloucestershire, where the Central Electricity Generating Board, for whom dad worked, was opening a new headquarters. From that time to her retirement in 1990, mum taught at a local primary school and I accompanied her there for the first three years.  


Anyone who knew her in those days would recall her warmth, generosity, kindness, and sense of fun. If she saw the ice cream van stopping outside the school, she would go out and buy ice creams for her whole class. The Christmas stockings she made with the kids, and filled with treats, became a much-loved tradition. One year she sent me out to buy the stocking-fillers, including jumping beans that were a fad in those days.  I had a terrible time trying to count them out in the shop, because as soon as my hand was getting full, they would all jump out! (We couldn’t use them anyway, as it turned out, because they looked too much like antibiotics – a choking risk…) 

She loved music and theatre, animals (specially small dogs, like our little bichon frisé, Dill), perfume, sunbathing and the seaside, and was most particular about her hair, taking day trips up to a top salon in London after she retired, and enjoying the whole experience as a social occasion.  All the shop assistants in town knew her, because she loved to talk, particularly in the jewellers’; she loved to look at pretty things, and to buy presents for me. Not just expensive things, but endless small trinkets from practically every trip into town, that said I was always in her thoughts. Keepsakes I treasure to this day.

My beloved dad, Wai, died of cancer at the age of only fifty-two, nine months after diagnosis, when I was in my final year at university, leaving mum widowed just before retirement and in the year that I left home.  With hindsight, I believe that shock was the trigger for her earliest symptoms of dementia, heralding decades of escalating trauma that heartbreakingly took her memories, affected her personality, and ultimately made strangers of us.   


Sadly, she did lose some friends over the years, because of her condition; but others proved touchingly loyal and have kept in contact with me to the last.  In her latter years, I was immensely grateful for the kindness and dedication of staff who looked after her in two care homes; we could not have managed without them. Given mum’s great age when she died and her many years away from the outside world, I feared her funeral would be sparsely attended, but was moved to see many of her old friends and carers there – and to know that I was not the only person to remember her.


Of course, this snapshot is subjective. We editorialise all the time. If mum had continued to live for those last twenty years without dementia, the kaleidoscope would have turned. My memory of her would have evolved too, with imperfections as well as virtues, and all the secrets she took to the grave that even she had forgotten by the time she died. There’s much more to be said about mum and my relationship with her; I’m sure I’ll write about it again. But for now, today, I’ll just say this: nos dawch, cariad!  Goodnight, my lovely mum. xx

Wednesday 11 November 2020

Care Home Visiting & COVID-19

My mum, Glenys, died in January 2020; she had lived with dementia for over 20 years. As an only child, I was her sole family carer, shuttling back and forth at least weekly for most of that time to support her, at first in our family home 100 miles away from my own flat in London, and since 2011 in two care homes in that same town. (By 2011, she was already too frail to travel further than 20 minutes, and there was no suitable care near me.) 

Conceding her to residential care was a huge trauma in itself, but had become the only practical solution to her escalating needs, too extensive for me to manage on my own.  She settled better than I had expected, and over the years I was immensely grateful for the kindness and dedication of the staff, who enabled her to survive for nearly a decade beyond the crisis that had brought her into their care.

Now I am also eternally grateful that she died before the advent of COVID – because I know only too well the anguish of those who are cruelly separated by visiting restrictions. For some, this means never seeing their loved ones again. For all those years, when my weekly routine was that 200-mile round trip, anxious of what I might find, conflicted about having to leave, primed every moment of every day in between for the phone call that meant emergency or the ultimate bad news, those visits were my lifeline to my mum – the sole thread of our relationship. 

Mum's last birthday, 2019

Every time I left, I feared I might never see her alive again; latterly, my bag was always packed for the emergency dash. I was always afraid I wouldn’t get there in time. But, crucially, I didn’t have to fear being denied access to her in her last days or hours.  

When the time finally came, I was able to spend nearly two weeks at her bedside, day and night, playing her favourite music, holding her hand, telling her I was there and I loved her. 

By that time, indeed for at least six years before, she didn’t know who I was or even that she had a daughter. But I knew her, better than anyone. I was there to watch over her, to speak up for her, to fight for her, to ensure that she had everything she needed – including palliative drugs - and as much comfort, security, and peace as possible, to ease her passage from a life of 93 years. I was there to show her she was loved. 


So yes, there are supposedly exemptions for care home residents in end of life to have visits from family members. But how do you define “end of life”? My mum had medically been on “end of life care” since 2014, when she first became bed-bound in a nursing unit, and had an acute episode of decline that she wasn’t expected to survive. Back then, I also spent two weeks at her bedside, but on that occasion she rallied to have another six years of life ahead. 


During those six years, there were numerous other “near death” incidents, when I got in the car with my emergency bag, heart in my mouth, crying as I drove and trying not to kill myself on the road, but again and again, she pulled through; and each time, because I wasn’t local, I had to check into hotels to stay nearby overnight. I was lucky I could afford that.  Very lucky. 

Imagine having neither a car to take flight at any time of day or night, nor the funds to pay for travel and accommodation in those desperate situations, having to rely on patchy public transport or lifts from friends for maybe one last round trip goodbye. And then imagine being told you can’t go there at all; you just won’t be allowed in, unless management deems your relative to be imminently at point of death – when you might not be able to reach them.


How many times can you go through that?


Even for professionals, the signs of imminent death can be minutely subtle in a person who is already bed-bound and barely conscious, with severe cognitive impairment – a small change in breathing pattern, an almost imperceptible change of skin colour or temperature. In mum’s case, the supposedly tell-tale cold hands and feet never occurred – her dead hand in mine remained warm, even after her breathing had stopped.  


With the best will in the world, care staff don’t have time to sit with a resident 24/7 and observe these fatal subtleties. Without me there, it’s likely mum would simply have been found dead in her bed at suppertime, and that’s the call I would have received, a hundred miles away. 


Pre-COVID, families with relatives in care would know and accept that there are occasions when public health dictates temporary visiting bans. Outbreaks of norovirus or chest infections are common, and you might be asked to stay away for a week or two; this is hard enough, when every week might be your loved one’s last, but you can endure it, knowing there is an end in sight. 


Even so, many local relatives are accustomed to visiting once or twice a day, primarily to help with meals. Care homes are often short-staffed and meal times are labour-intensive, particularly in dementia care, where a person in end stage may need spoon-feeding or have swallowing problems, dictating special diets and close supervision. In these instances, strict quarantine for those common pre-COVID viruses may sometimes have been waived for a relative or friend whose assistance is essential. In homes that are chronically under-staffed or subject to temporary management, relatives may feel they have to go in, ban or not, to ensure that their loved one has a meal at all. Imagine then being told you can’t do this for nine months or more.

So what about window visits, FaceTime, and plastic screens? Aren’t they the COVID solution? Well, as you can see, they don’t help in the situations I’ve described above, where practical support is vital and the reassurance of physical presence and touch may be the only communication left


Yes, they’re better than nothing, when the resident is able to participate, but a bed-bound person living in a secure unit on the upper floor of a home (like my mum) will never be able to go to a window or garden to be seen by their family, and cannot understand a person behind a screen; and yes, over-stretched care workers go to amazing lengths, often on their own time and using their own phones, to help families keep in touch via tech – but that tech is often meaningless to a person in end stage dementia and arguably distressing to relatives who can only witness, with no agency, their loved one’s decline through the screen.

Christmas 2019, a few days before mum's death

This is the reality of dementia care, not fully appreciated by government or the wider public. Tech solutions and outdoor visits that are merely a minor inconvenience to the fit and healthy (but still resented for that inconvenience) might as well be trips to the moon for those living in care with dementia. 

Care-workers come and go in and out of homes every day, passing through the community. The residents’ relatives need priority vaccination* on a par with those staff, to enable them to do the same.

A callous person (and there are sadly plenty of those) might say that if a person doesn’t know you, they don’t miss you, they lose nothing by your absence; you should simply resign yourself to a remote goodbye.  But to accept this is to abandon our humanity and consign ourselves to psychological damage for years to come. I was not just mum's only immediate family; she was mine.


The fact that I was there to the last for my mum, whether she knew it or not, gives me the comfort that there was nothing unknown, no gruesome imagined distress or suffering I could have ameliorated; I said everything I needed to say; I know, even if she did not, that she was not alone. That has helped me come to terms with her loss - I wish nothing less for thousands of others in this heart-breaking situation with COVID.


* Amended from "testing" on 1 February 2021, when vaccination had become available.

Thursday 16 January 2020

Nos Dawch, Cariad

My beloved mum, Glenys, died peacefully on 8 January 2020, with me by her side.  She was 93 and had lived with dementia for probably over 20 years.  At rest now: nos dawch, cariad.  xx

Thursday 3 October 2019

Ninety-Three Birthdays

Last week, my mum was 93.  She wouldn’t know that, but I do.  An only child, I’ve been alive for about half of those 93 birthdays, and I wish I’d paid more attention. I wish I’d taken more photos in the pre-digital days when she still looked like herself, recorded more of her voice, but we didn’t make much of a fuss back then.  Until my early twenties, there were three of us, mum, dad, and me, going out for a meal or to a show.  Then he died. So it was just mum and me, keeping up the rituals. 

There were cards, of course, and presents.  But I didn’t know I’d need to remember for both of us – not the special occasions, but the precious ordinary days whose passing they marked.  

This is 2006: the last holiday we took together for mum’s 80th.  We were lucky with the weather, a week of Indian summer on Anglesey.  I love this photo of us, full of warmth, the light still there in mum’s eyes.  She’d had her hair done to go away, something that had been important all my life – never an “old lady” shampoo and set, a modern choppy cut & blow dry that kept her looking more “with it” than her 80 years. I’m so glad we had that last hurrah.  

But it wasn’t an entirely happy trip.  She’d been in highly paranoid mood with me in the preceding days, almost refusing to come.  The morning we’d set off on the long drive up to Wales it had taken me hours to get her ready, with the minimum of clothes packed in her suitcase. I’d had to find socks and underwear for her at the last minute, because she hadn’t thought to put any in. 

A boat trip, in her favourite blue jacket
One night we had enjoyed a meal in a restaurant when she suddenly grew agitated, asking loudly, “Who’s that woman singing?”  It was Ella Fitzgerald on CD.  Mum, however, was convinced that she was there, singing live in the room - and she wasn’t much cop.  “She’s singing off key!”  Somewhat embarrassed, I asked for the bill, and mum insisted on paying, leaving a twenty-pound note for the tip (way too much), which I just about managed to retrieve, thinking she’d probably had one too many glasses of wine…

I didn’t fully understand it then, but dementia had already rooted itself deep inside her, like Japanese knotweed, rapaciously colonising its territory. Most of that week we spent quietly sitting on the breezy seafront, soaking up the spectacular Menai Straits view; nevertheless, it was exhausting, being constantly alert to her unspoken reliance on me.  When we finally headed home, I knew we couldn’t do this again – it was too much for me, on my own.

Always a sun-worshipper...
There are no photos of the next few birthdays.  Life became too tense.  There was always something more urgent than recording the occasion, though we undoubtedly went through the motions.  By that time, though I didn’t yet know it, mum had already begun to forget who I was, and our relationship became increasingly fractious.  I didn’t want to photograph her then, when she had begun to look frail, empty-eyed, dishevelled (quite unlike her formerly well-groomed self), and sometimes, frankly, malevolent.  

Her birthday in 2011 was a watershed: the first in care.  The preceding months had been some of the most traumatic of our lives, and I finally had to find a residential care place for her. I was heartbroken, but she settled better than I had expected, perhaps somewhere inside relieved to have the twenty-four hour security that I could not provide alone.  

She had only been there a couple of weeks by the time of her birthday, and I didn’t know what to expect.  There would be some kind of celebratory tea, I gathered, but I was not yet versed in the ways of the care home, and decided to take her out for a pub lunch first, as would have been our old routine.

It was not a success.  Mindful of the need to avoid driving anywhere near our family home, which I was having to pack up to sell, and anxious about getting mum back in time for tea, I found it impossible to relax or be upbeat.  The rich steak pie I’d chosen gave me indigestion; mum could barely make a dent in her vast plate of ham, egg, and chips (chosen because it seemed the lightest thing on the menu).  She spent most of the trip railing about a fellow resident.  Back at the home, there was a cake – a beautifully iced cake, first of many – but I took no photos.  It was all too rushed and stressful, too sad; not a day I wanted to remember.

2012: Mum was settled in the home and doing well.  A fleeting glimpse of her in a pale blue jumper, blowing out the candles on her cake. Her hair, once so pristinely styled and religiously tinted brown as long as I could remember, is now white and unkempt, because she could no longer tolerate hairdressingIt’s the most blurry of images, snatched in haste, but I treasure it now, because it was probably the last time she was able to stand up and blow those candles out herself, even if she was in a tetchy mood. 

2013: Another cake. I took a photo of that, but not of mum.  I can’t remember why; she may have been unwilling to pose.  At this stage, her moods could be very volatile; I’d have to catch her in the right moment of bonhomie. By Christmas of that year, she would be in a wheelchair; by spring she had forgotten who I was; and by her next birthday in 2014, she was bed-bound…

2014: the first birthday I really didn’t expect her to reach.  When she had taken to her bed in mid summer, she had more or less stopped eating, drank very little, and had started to hallucinate vividly, often talking to a person in the wall beside her and complaining of a “man with a big, fat bottom”, and another in “clerical robes”, whom she saw at the end of her bed.  

For two weeks I kept a vigil at the bedside, one day driving back to London when she had seemed to stabilise, and coming straight back (a 200-mile round trip) when she took a turn for the worse.  At times, I had to call in the nurse to check if she was still breathing and to monitor the colour of her skin, so comatose did she appear in sleep.  And yet, by her birthday, a couple of months later, she had rallied; still bed-bound, but eating and drinking again, articulate and capable of banter.  

She’s smiling or laughing here, but not really looking at what's going on. At the time, I focused only on mum in this photo; but now I see I look pretty awful myself – three stone overweight with undiagnosed Type 2 Diabetes, brought on by years of comfort eating and drinking while coping with mum’s condition.  Like many carers, I didn’t think to check out my own health; there was always something more important.

2015: another bed-bound celebration. I thought then that mum looked pitifully frail in bed, but compared to later years, she is relatively robust. It’s touching to see her looking tenderly at me, although it was only a fleeting moment and possibly deceptive in terms of her engagement with me. 

Little did I know that a turbulent time was to come at the home, with a change of management and cuts to service. December 2015 saw mum hospitalised with a potentially fatal aspiration pneumonia (after she had been moved into a new room without my knowledge), and I found myself embroiled in nearly three years of subsequent strife with the provider.  A terrible time.  

Nevertheless, mum rallied once more, and, supported by caring staff, by spring she was well enough to be got up out of bed to sit in a chair and eat her lunch in the dining room.  That summer and the next, we even had a few afternoons sitting out in the garden. 

This is her 90thbirthday tea in 2016 – not on the day itself, as I had to be in London, but the next day.  By this time, she had long forgotten the significance of the date, but was able to participate to some degree in the celebration - although she could not manage the creamy cake, needing to eat with her hands at that stage and unwilling to be fed. 

Despite her detached look here, she's physically surprisingly strong; it's moving to see the attention staff have given to her hair and dress for the occasion. I’ll never forget their kindness.

2017 was much less happy.  By then, the home was in crisis, having undergone several changes of management and a mass exodus of staff.  Earlier in mum’s birthday week, I had been down to attend a public meeting between management, residents and families, at which various commitments were made by the provider.  

I returned at the weekend for mum’s birthday, expecting at least a show of good intentions – to find mum still in bed at 1.40pm, the curtains drawn, having apparently been abandoned mid personal care by a new young staff member, who had never worked in care before and unsurprisingly could not cope unsupervised on her first day with the tough demands of a dementia nursing unit, under-staffed by 50% on that shift.  She had fled the building and the job without telling anyone.

I had to go down and remonstrate with the deputy manager (himself new in post and over-stretched), before an experienced care-worker could be found to get mum up and dressed and bring her birthday cake up from the kitchen (another cream gateau that she couldn't pick up with her hands).  

We are putting on a brave face here, but it was an upsetting episode for mum’s 91stbirthday, one that might well have been her last; you can see from my waxy complexion, puffy face, and skin lesions on my arms that I was actually quite unwell with the stress.  Two months later I collapsed in a public place and was diagnosed with diabetes.  It was the beginning of my recovery; I have since lost 3 stone on a low-carb diet and medication.

By the spring of 2018, almost all the familiar staff at the home had left.  With continuity of care gone, I took the decision to move mum into a different home, where some of the old staff had preceded her.  It was a risk, but once more I was heartened by her resilience. She’s looking a bit imperious here on her 92ndbirthday, but the atmosphere of calm order, with relaxed staff and another beautifully decorated cake, was a relief.

And mum’s 93rd, last week?  Well, another episode of near-fatal illness in November 2018 has left her more impaired.  It may have been some kind of stroke – it’s hard to tell, now that she is too frail for medical tests.  She was not expected to survive that day, but has so far pulled through, nearly a year later. There is remarkable strength inside her, though she is less able to communicate nowadays – another tragedy for a former singer, teacher, and lifelong chatterbox.  But I’m grateful she seems content.  She can no longer pick up food with her one good hand and swallowing is more difficult; she mostly accepts being fed, and still enjoys cake, custard, ice cream.  

So this was her 93rd: resting in bed, barely awake in truth – but still here.  Still loved. You might think these photographs somewhat grotesque, an intrusion of mum’s privacy, as I would have done in the past.  There is admittedly an air of desperation in my attempt to look upbeat alongside her obvious frailty (below).  When I started this blog, I didn’t post pictures of her with dementia, as a matter of principle – I didn’t think she’d want to be seen like that and I too preferred to remember her as she was before.  

But in the intervening years I have come to see that every day is still precious, potentially more positive than those to come, however hard it might be to discern those positives at the time.  

Anniversaries are generally important to us all; and when someone has a degenerative disease, it may be all the more meaningful to mark the passage of time.  Above all, I think it’s important to record the truth.  This is the story of my love for my mum and hers for me (when she knew me) – and of dementia’s impact on us both.  

So to anyone else on this journey I would say take photos, video, make voice recordings, at whatever stage of the road: mark the days, not just the special occasions - the everyday, the commonplace. One day, they will be your legacy.

Monday 15 April 2019

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 careI 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: 

[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.]