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.

An Act of Remembrance

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

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

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

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

Mum, as I best remember her... (Me, behind in the mirror)

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

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

Looking back, I realise that around this time she stopped driving conversation.  Always a prodigious and entertaining talker, she became, not mute, but unusually tight-lipped.  As if there were some passive-aggressive sulk going on beneath the surface – a silent antagonism that said I had done her some inexplicable wrong. 

When I served her meals, she would thank me courteously, somehow too polite, ingratiating almost; and as she ate, she might look up now and again and comment, “this is very nice, thank you”, with a gracious nod of the head.  I couldn’t put my finger on it at the time, but now I see: she was addressing me as a waitress.

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

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

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

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

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

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

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

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

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

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

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

But by the spring she had.

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

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

We don't talk much; I have to accept it must be on her terms, her life before I was born.  Now even those memories of her youth, the stories she told me about herself, are remembered only by me.  What she yearns for most are her parents – and I can’t give her that.

So I put on a CD; TV is too much stress.  A former singer, she still enjoys music, though not necessarily as before.  I bring flowers and cake, make her a cup of coffee; she used to drink tea like me, but so many tastes have changed…

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

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

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

Another garden afternoon: mum is oblivious to me

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

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

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

A couple of months ago, I had a review with the Court of Protection Visitor, who supervises appointed Deputies like me, who manage the financial affairs of a person lacking capacity.  As we went through the bank accounts, he asked me why I visited my mother so often (it’s a two-hundred-mile round trip).  I was taken aback.  Surely it’s obvious?  She’s my mum.  She’s ninety, in end stage dementia; I’m her only family. 

Yes, but what is the purpose of these visits, he persisted? 

I have to see how she is, I replied; to make sure she’s all right, that she has everything she needs.  You could do that by phone, he said.  Some deputies visit only once a year.  (If you are in care with no immediate family, your deputy may be a distant relative or legal professional.)  I was perplexed at this approach.  She’s forgetting me, I said; I come as often as I can to keep up the connection…

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

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

Every week, I drive down past the country pub where mum and I used to go for Sunday lunch; the spa hotel where she once booked us a swanky post-Christmas meal that proved to be a wash-out; the garden centre where we spent many a happy afternoon, choosing bedding plants and hanging baskets.  It’s as if I’m driving past our old life and it won’t let me in. 

Intimacy has gone; our shared history is erased.

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

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

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

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

Five-Star Hotel, Five-Star Care? Part 4: Conclusion

New Year 2016: with mum thankfully recovering from an emergency admission from her care home to hospital just before Christmas (and another acute episode at the beginning of January), I made a formal complaint to the General Manager about a number of issues that had led up to this crisis.  I was shocked to find myself in this situation, as prior to summer 2015 I had had nothing but praise for the home.

I did not blame the staff, who were clearly doing their best as before, but with ever-greater demands on their time since a new wing had opened in mum’s unit, doubling capacity.  As the complaints process progressed through the subsequent months and indeed years, it also became evident that most of the problems could not be solved unilaterally by the manager, but had their roots in corporate culture and finance.

The company, which still trades on the person-centred ethos of its founder, had changed its structure and aims: it was now run by a corporate board with City objectives. These structural and strategic changes occurred back in 2013, but were never communicated to the residents and families dependent on its extensive network of homes.  It took a couple of years for their effect to filter down.

In the last decade, a number of new operators have entered the market – many from a background of “hospitality”, rather than nursing or social-care. In short, hotels.  They have looked at the demographics and seen that there is a burgeoning demand for retirement apartments and care homes, but may not appreciate the difference between them.  We know about accommodation, they think; we can do that.  And if we make it glossy and build in richer parts of the country, we can charge premium rates.

And yes, active and affluent retirees in their sixties and seventies may well enjoy a cinema, swimming pool, café bar, and the kind of cool minimalist décor they have grown used to at home or in upmarket hotels and restaurants.  These are lovely facilities, if money is no object and you are fit and well.  Even so, I would argue that the qualities you seek for a short break in a luxury hotel or time-share complex are not the same as your own home comforts. 

And if you are over eighty, frail, confused, living with dementia or other degenerative disease, and looking for a home with intensive practical support, they are not the most important factors.  What you need is people.  This cannot be said enough.  People can give care.  Fancy curtains can’t hold your hand when you’re dying.

The much-vaunted “person-centred care”, touted on every website and brochure, needs two essential ingredients: staff and time.  Enough well-trained, well-paid, kind, empathetic staff; and enough time for those staff to spend with their residents outside practical care tasks, to engage with them as people, not room numbers.

So it frustrates and depresses me to see care home companies all hurtling sheep-like down the road of spa hotel one-upmanship, at the expense of investment in the basics.  And it breaks my heart that mum’s provider, that once led the field in genuine person-centred care, now feels the need to compete on these terms – offering a staff/resident ratio just a little bit better than its competitors (but significantly worse than its own prior to 2015), and achieving that “little bit better” by making stealthy cuts to service elsewhere (catering, housekeeping, maintenance) and by keeping staff on minimum wage.

It’s well-known that the National Living Wage has placed greater financial strain on both care providers and funding bodies.  Good care isn’t cheap, it never will be, and should not depend on the exploitation of workers.  But if there is a crisis in funding and priorities have to be chosen, that’s a conversation providers should be having with residents and families, not a unilateral decision to be deployed by sleight of hand to maintain profit.

In my view, there’s a moral imperative for transparency; but if commercial arguments are all that count, I would point out that at the time of mum’s crisis in December 2015, we had personally paid over £200,000 to that company.  That represents the sale of our family home, our collective lifetime assets.  Surely that buys us some rights of consultation? 

(The annual residents and families survey had quietly been dropped around the time of the corporate changes, and communications from the company were minimal; the one meeting with the new manager was held on a weekday afternoon when most relatives could not attend.)

While there was apparently scant budget for daily running costs, money was available in relative abundance for cosmetic improvements and gimmicks. Focusing on kerb appeal to attract new business in this way, to the detriment of basic daily care and humanity, is a pernicious economy.  I suspect a cynical calculation that, as the average stay in care is two-and-a-half years, some providers concentrate on point of sale, rather than providing an ongoing standard of service, because their “customers” have a natural shelf life and won’t be around to complain. Please prove me wrong.

So what happened to my complaint?  (For details, see previous posts, Problems, and Crisis.) After many months of extensive correspondence, meetings, and stress that escalated the case to Divisional Manager level (three stages up; a saga in itself), at one point it appeared to be resolved to relative satisfaction, but after another change of senior management, the main issues persisted*.  Early on, I had accepted that the hospital admission was necessary in the circumstances, and that night staff, faced with a life-threatening emergency, acted in good faith, to the best of their ability. I had no complaint against them.

My main concern was to address the issue of staffing levels on mum’s unit (which had fallen 40% between July and December 2015, from 1:3 to 1:5/6), a general fall in service provision throughout the home, and the circumstances that led to mum’s sudden deterioration in the latter half of 2015. 

With improved monitoring in 2016, she rallied from this crisis, and by summer had improved enough to be able to sit out in the garden on some days. By that summer of 2016, there was a staff/resident ratio of 1:4/5 in daytime – although at times this slipped back down to 1:6 - but there were no plans to restore the original ratio of 1:3 or the proportion of nursing cover within that, which remained half that of pre-2015.   

(Staffing ratios overall need to be higher in dementia nursing units than in purely residential care, because residents’ physical dependency becomes intense, with help needed for eating, drinking, continence, and two care-workers required to lift a person and sometimes to manage distressed behaviour.)

The squash dispenser was restored (but with cheap and very diluted squash, not fresh juice); whiteboards in both lounges and some of the dementia-friendly design features were reinstated, but application of these was patchy. The atmosphere on the new wing became more homely; but although decorations on the old wing were finally completed, that lounge remained less used and less welcoming in character.

The residents and families survey resumed in October 2016, with a new staff survey supposedly to follow.  One of the nursing stations was allocated a computer and a unit email address, but the latter still did not allow care staff and families to communicate directly, only via the deputy manager or receptionist as before – the company reneged on a short-lived commitment to provide direct access. 

I lobbied hard on all these issues, but of course it’s difficult to say if the few gains were a direct result of my complaint.  One thing I did count as a significant achievement was a new protocol for emergency transfers of residents to hospital, which the home introduced in April 2016.  

This aimed to ensure that no resident is ever sent to hospital unaccompanied in emergency (as mum was in December 2015), through a rota of off-duty staff to be summoned as cover, and sets out a checklist of personal effects, contacts, and documents to support any such transfer. I'd be surprised if this protocol has survived in the face of further cuts and staff shortages... 

(I canvassed other major care providers for their policy on emergency admissions to hospital; shockingly none was willing to guarantee that residents would always be escorted - because that requires a degree of slack in their staffing levels above bare minimum cover, the standard for their budgets.  Ask yourself, would it be acceptable for a terminally ill child to be sent alone to ED?  No?  Then why do providers - charging up to £2,000 per week - believe it to be so for a frail elderly person with severe cognitive impairment or for an adult with learning disability?  You won't find that in any glossy sales brochure.)

One key question remains unanswered: were the actions of mum’s care provider (in downgrading its service) motivated by need or greed?  Did they make cuts simply to survive, or rather to maximise profit?  The latter being negotiable, the former, not.

The spectre looming over all of this is that of care companies, such as Southern Cross, suddenly going bust.  The regulator, the Care Quality Commission, now has a scheme called Market Oversight that monitors the financial viability of key providers and aims to warn local authorities if services they purchase are vulnerable to collapse.  As far as I know, there is no equivalent protection for self-funders, who remain entirely reliant on providers themselves (and their own independent research) for information.

The financial background of providers is notoriously labyrinthine and hard to interpret for the layman. I would like to see residents and families entitled to receive the same annual reports as shareholders – we are indeed the principal stakeholders in that business.

Throughout the UK, there is a known shortage of nurses in general, let alone specialist dementia nurses (and Brexit threatens to exacerbate this situation).  The appointment and retention of suitably qualified staff is undoubtedly a challenge for providers in a competitive market, and the Divisional Manager of mum’s company argued that they offer structured training, promotion, and bonuses to provide opportunities for career progression; but while these may look attractive on paper, from my observations I would suggest that staff retention is less about long-term corporate incentives  (that take staff away from hands-on care) than decent daily working conditions: 

Listen to the staff, value their opinions and expertise, and act on it; give them proper meal breaks and meals; pay them a good basic rate for very hard work (13-hour shifts in some cases); subsidise child-care or at least try to accommodate staff with fixed rosters; treat them with as much kindness and respect as is due to residents and families.

Above all, value the bond between residents and care-workers who know them well; see it as an asset, not a threat.  (Don’t, for instance, deliberately roster staff away from their accustomed units to render them interchangeable for corporate efficiencies; “personal” care should be just that.)

Finally, whatever the financial challenges, never forget that residents are not inanimate “units of business”, but people - whose lives depend on you.   If a genuine desire to provide care is not your prime motivation, look elsewhere to make your profits.  A home is not a hotel.  This is what it's about: 

*Updated @November 2016, August 2017, May 2018, April 2019, April 2020 (see postscript below).

NB: During 2017 and 2018, this situation escalated further to crisis for the home as a whole (not just my complaint), with it being rated "Requires Improvement" in all categories by the CQC in 2018, where it had formerly been "Good" or above.  In May 2018, regretfully I felt I had to move mum out of this once excellent home; it was a huge decision, but thankfully she settled well into her new home in the same area, due in no small part to some familiar staff who had preceded her there. Continuity of care is paramount for those with dementia and I was grateful that she had that once more. However, I am also aware of our good fortune as self-funders in being able to make this move; others were not so lucky, and many of the issues described here persisted in the original home for some time after she left. 

Update: as per summer 2019, I was pleased to find that the original home had received a good rating once more, but in her state of advanced age and frailty I didn't feel mum had time in 2018 to wait for this improvement. Crucially, I now know no provider is immune from them; they are part of the overall landscape of the sector, due to funding models that remain contentious.

Update: In January 2020, my mum died.  I'm thankful it was peaceful, before the COVID19 outbreak, and I was able to spend the whole time with her in the weeks preceding her eventual demise, holding her hand until the last; eternally grateful for the wonderful care she received in her final home and to kind and dedicated staff in both homes who supported us throughout her more than eight years in care.  

Sadly, I hear that the original home, having received a good CQC report in 2019, "promoted" the new manager to an executive post overseeing a group of regional homes (a familiar pattern), leaving that home once more under temporary leadership - and once more spending lavish sums on cosmetic refurbishments, when extensive redecorations had been completed barely a year earlier, at a time when staffing across the whole sector continues to be the top operational issue.  Desperately disappointing, the more so when care homes are suffering so much from government funding neglect in the face of COVID19.

Meanwhile, a report into privatised adult social care by Professor Bob Hudson indicates that the detrimental changes I have witnessed in mum's home are common symptoms of the drive among providers to maximise profit by cutting down on their major expense and main budget variable: staff.  (See in particular points 12 & 13 on page 9 of the report...)

[NB: This post was written in 2016, pre-COVID-19. Coronavirus has placed further strains on the care sector, and restrictions on visiting care homes may now apply; please check with the provider.] 

Part 1: a Good Home

Part 2: Problems

Part 3: Crisis