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 hairdressing. It’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 90^thbirthday 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 91^stbirthday, 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 92^ndbirthday, but the atmosphere of calm order, with relaxed staff and another beautifully decorated cake, was a relief.

And mum’s 93^rd, 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 93^rd: 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.

My Biggest Lie: Part 1

I have put off writing this for a long time – an episode I’d rather forget. But as August has come around again, the city familiarly desolate, friends posting happy family snaps from far-flung beaches and villas, I find myself back in the bleak summer of 2011: the year I put my mum into care.

Ever since I was a little girl, mum had said to me, “never put me in a home”.  It became a mythic dread, a calamitous fate I would do everything in my power to avoid; but even then, at the age of seven, eight, or ten, I was reluctant to commit myself to a promise. Another little girl would perhaps have said “promise”, knowing this was what a beloved mother wanted to hear and hoping the word would be enough; but as a serious and scrupulously honest only child, even then I sensed it might be too big a guarantee – and if I didn’t know for sure that I could keep my promise, I could not say the word.

What I do know is that mum had never imagined the situation we would face in that summer of 2011, when she was almost eighty-five. Her own parents had both died of acute illness in their early seventies, her mother of cancer, her father of a heart attack six weeks later. My father too died of cancer, at the age of only fifty-two, when I was a student. Shocking, yes; traumatic, certainly.  But not protracted, nor degrading. Morphine for pain relief brought hallucinations, but, though distressing, these were temporary – they did not fundamentally change the personality of those we loved or our relationship with them; both my grandparents and my father were still themselves when they died, cognisant of us and of our love for them.

(Tellingly, when my grandmother was diagnosed with inoperable stomach cancer back in 1978, mum begged the doctors not to tell her, arguing that she would “give up”.  So both medics and family were forced into a deception that she merely had “kidney stones” and “a fissure of the bowel”, from which she could in time recover - rather than an untreatable terminal illness, that in fact killed her eight months later. 

Even as a twelve-year-old, I thought mum was wrong: my grandmother, a highly emotional person, would undoubtedly have been devastated by the news, but she was not cognitively impaired – she could have understood, if not come to terms with it.  And as a family we would not have had the added burden of secrecy; we would have been able to plan for her care and that of my grandfather, whom the rest of us knew would soon be widowed.

Mum, in my view, deluded herself that “not giving up” could cure her mother of an organic disease that had already spread unstoppably through her body.  This starkly illustrates the difference in personality between us: she was an escapist, who thought that if you ignored problems, they would somehow go away; whereas I have always been a realist – equally upset by bad news, but believing that you have to face it, in order to deal with the practical consequences.  All this came into play in the dilemma I faced in 2011.)

Mum remembered her grandmother who, with hindsight, had dementia.  But “Nain”* Thomas had lived in a mountain village in the early years of the 20^th century, where doors were left open, everyone knew everyone and could guide a confused elderly lady gently home - and, crucially, families were large and women stayed at home. There was always a daughter or a sister, a niece or daughter-in-law at hand; and living into very old age with multiple health problems was comparatively rare. 

So mum’s impression of her grandmother’s condition was benign -  affectionate anecdotes of mildly “dotty” behaviour, remembered from her distant childhood.  She had never herself witnessed the more extreme symptoms of late-stage dementia, much less had to cope with them as sole carer; and all those years ago, when she had said “never put me in a home”, she had not known anyone to whom that had actually happened, nor understood why it might.  She had no template for decades of chronic degenerative disease or of bed-bound dependency, believing that “one day I’ll just pop my clogs”. She could not know what she asked of me.

I have written elsewhere about the long progression of her own dementia – twenty years or more from the earliest symptoms to present date – and the blunt reality of end stage needs.  By 2011, mum was almost completely unable to take care of herself, yet equally unaware of that incapacity.  There is a name for this: anosognosia – commonly known as “lack of insight” or “lack of awareness”.  It is a clinical condition, resulting from brain damage (caused by trauma, stroke, or disease), which renders a person unable to acknowledge that they are experiencing disability. 

I didn’t know this. So for many years l had struggled to support mum on my own (often against fierce antagonism from her), desperately hoping and believing that surely one day, when things got bad enough, she would have to admit there was something wrong and accept professional help. But that day never came. It never could, because she was not “in denial”, as I thought – the brain damage that caused her symptoms of dementia also prevented her from recognising them. As far as she was concerned, she was absolutely fine; I was the one behaving strangely. 

So it was not until the previous autumn of 2010 – after another dreadful August that brought her into the general hospital – that she had finally been referred to social services at my request. I had been finding it increasingly hard to cope, and hoped the hospital admission would pave the way for regular home support. But anosognosia struck once again. Mum discharged herself early and refused the hospital’s follow-up services.

Already at breaking point, I persisted behind the scenes, and mum was later assigned a social worker, occupational therapist, and consultant psychiatrist from the community mental health team; but because she did not accept that she had any problems, all these professionals had to tread softly, in order for her to accept them. 

She would not attend clinics, for instance, so they had to visit her at home, alongside familiar community nurses from the GP’s Older Adult Nursing Team, giving the impression that they were all routine “health visitors from the surgery”.  Even then, she would not always let them in and rejected all their suggestions; there was little they could do. 

(She would not agree to any kind of formal testing, so diagnosis could only be made by the psychiatrist’s informal observations, and was not registered until the following autumn of 2011, when I had to apply for legal authority to manage mum's affairs.)

The social worker, to whom I shall always be grateful, put me in touch with a wonderful independent care-worker, Jenny, whom I engaged to visit mum a couple of times a week – just to look in and make sure she was safe, help her to prepare a hot meal, and get to know her, with a view to introducing daily care in due course. 

First signs were encouraging; mum warmed to Jenny. But from spring 2011, her symptoms dramatically escalated, repeatedly putting her at risk, and it became clear that she needed 24-hour care that no one person could provide.  The social worker urged me to seek a residential place, but although I agreed this was now the only practical solution, I just could not see how to achieve it. 

Wasn’t this mum’s greatest fear? The very thing she had always warned me against?  Bad enough to go against her wishes; but, given that she believed there was nothing wrong with her at all, how could I even broach the idea of moving her out of her own house, to end her days in a “home” - let alone actually get her to go there?  It seemed insurmountable. 

By the summer, however, I was shocked to realise that she no longer recognised our family home, where she had lived for nearly forty years; she couldn’t remember which of the two main bedrooms was hers, or recall any room on the other side of a door.  Distressed by the apparent “strangeness” of the place, she obsessively packed shopping bags to flee, sometimes sallying forth at night to try and get her bearings.  I knew then that the home she had loved was no longer a cherished sanctuary, but a frightening jail to her; and if it was not a comfort, nor even familiar, would she not at least be physically safer in care? 

So in that terrible summer of 2011, I began my lonely and frantic search of care homes.  Lonely, because I could not consult mum about it or involve her in this, the biggest choice I would ever have to make; and frantic, because I had to contact and visit all these places in snatched moments, behind her back, en route between my flat and our family home, a hundred miles away. 

Novelist Penny Hancock has written about the heartbreak and guilt of choosing a care home with her mother, and writer Pippa Kelly has detailed a similarly harrowing experience alongside her father and siblings. Imagine the pain of having to do it alone in secret, bearing sole responsibility for that decision.

I soon discovered that residential care for those in the mid stages of dementia (as mum then was) is the hardest to find, as most homes cater either for early stage (where residents are still mobile and sociable, and don’t require secure, key-pad entry/exit or all-day supervision) or late stage, where they are mostly bed-bound, in receipt of nursing care. 

This narrowed down the options considerably (something I may discuss in a future post), but I was lucky to secure a provisional place in an excellent specialist unit ten minutes from our family home – by that time, mum could barely endure a twenty-minute journey in the car, so even if I had been able to find a suitable home near me in London, it would have been far too traumatic a move.  The problem remained of how to persuade her. 

With no other immediate family, I knew I would have to do this alone. I considered involving one or two of her close friends, but decided it was too big a request, as I wanted mum to maintain a positive relationship with them in future.  I canvassed the professionals for advice on how to open the discussion with her, but they admitted that, given both her lack of insight and lack of short-term memory (that meant any conversation would instantly be forgotten) there was no easy answer. 

The only practical suggestion, which totally shocked me, was this: as mum and I had been accustomed to going out for lunch and still managed this occasionally, if the worst came to the worst, I might have to take her out one day for our usual pleasant meal and then drive her straight to the home.  Unimaginably brutal!  How could I possibly do that to my mum? 

With any other illness or disability, you would of course expect to plan such a major life change openly and equally with the person needing care over a gradual time-scale, take them to look at potential homes, and help them to make the choice.  But dementia is not like other disabilities: anosognosia, paranoia, confabulation, delusion, and hallucination (all of which mum experienced) are mind-altering symptoms that trample the parameters of judgment and normal social exchange.  And sometimes they confront us with terrible decisions and actions that would otherwise be unconscionable, in order to safeguard our loved ones.

The social worker offered to come with me on the day if I couldn’t manage, and I was glad of this notional support, although wary that her unaccustomed appearance at our house might inflame an already volatile situation. I had reserved the only available room in the unit, and knew that if mum didn’t take it up on the due date, we might lose the chance of a place in the best home in the district, the only one I considered to be at all suitable. With this date fast approaching, I still had no idea how I was going to effect the move. 

Could I go through with it? Wracked with guilt at the impending betrayal of mum’s lifelong trust, I became physically sick with apprehension.  But one final, awful incident just after the August Bank Holiday convinced me I could not turn back: whatever it took, I had to get mum into the home…

Continued in Part 2

* Welsh for grandmother (pronounced "nine").


(This two-part post is a companion piece to an earlier post concerning the issue of "truth-telling" in dementia care.)

Knowing Me, Knowing You

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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