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, Dementia Carers Count offers a special ‘Home to Home’ course tailored to this stage of the journey and end of life issues, among its range of core support courses 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 BBCiPlayer, 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.]