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: 


Monday, 8 May 2017

An Act of Remembrance

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Intimacy has gone; our shared history is erased.

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

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

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

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









Wednesday, 24 August 2016

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.


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 am grateful that she now has 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'm pleased to report that the original home has now received a good rating once more, but in her state of advanced age and frailty I didn't feel mum had time 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.

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...)

Part 1: a Good Home