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.]

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, 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, has changed its structure and aims: it is 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 two years ago), 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 (and still counting).  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, you concentrate on point of sale, rather than providing an ongoing standard of service, because your “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 four months of extensive correspondence, meetings, and stress that escalated the case to Divisional Manager level (three stages up; a saga in itself), it appeared to be resolved to relative satisfaction, but after another change of senior management, some of the main issues persist*.  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 summer 2016, there was a staff/resident ratio of 1:4/5 in daytime – although at times this slipped back down to 1:6, and there were no plans to restore the original ratio of 1:3 or the proportion of nursing cover within this, which remains 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 has been patchy.  Residents do now have names and “memory boxes” (showcasing key memorabilia) on their doors. 

The atmosphere on the new wing became more homely; but although decorations on the old wing were finally completed, that lounge remains 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. It remains to be seen if this protocol continues to be implemented in 2017 and beyond, 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.  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 assured me that they offer structured training, promotion, and bonuses to provide opportunities for career progression.  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.

NB: During 2017 and 2018, this situation escalated further to crisis for the home as a whole (not just my complaint).  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 seems to be settling 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 optimistic that she will now have that once more.  I'll post further on this saga in due course.

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

Five-Star Hotel, Five-Star Care? Part 3: Crisis

Mum had been in care for four years, and for the vast majority of that time I had been more than happy with the home.  I knew how fortunate we were to be able to afford good care in pleasant surroundings.

In summer 2015, however, a number of changes began that altered the character of the place and made me uneasy.  Chiefly, a new wing had opened in mum’s dementia nursing unit, which doubled capacity, without double the staff.  Resources overall appeared to be stretched more thinly, while an extensive programme of cosmetic refurbishments continued.

Throughout the autumn I was increasingly concerned that mum and other bed-bound residents in the old wing were being left unattended for long periods of the day, while staff were fully occupied in care tasks or supervising the new lounge at the other end of the unit.  The old lounge outside mum’s room and the nursing station next door were now empty.

I usually visit each Saturday, but one Friday in December, with bad weather forecast the next day, I decided to postpone my weekly visit until the following Wednesday, to attend the Christmas party on the unit.  I phoned to check that all was well meanwhile - and was taken aback to learn that mum had been moved into a new room a couple of days earlier.  I had been there the previous Saturday and am always available by phone and email, but no-one had spoken to me about any plans to move her or otherwise consulted me.

Given mum’s extreme frailty, I had misgivings about such a hasty and inexplicably furtive move, but reasoned that perhaps it was the manager’s way of addressing my concerns about her spending too much time alone; the new room, I was told, was next door to the nursing station in the new wing.  Having been assured that she was OK and “beginning to settle”, I decided to give benefit of the doubt until I had seen the room on Wednesday. 

With hindsight, I should have heeded my instinct.  Because at 7.00am on that Wednesday, I received a call from night staff – paramedics were in attendance, and were about to take mum to hospital.

This was a complete shock, as there had been no prior suggestion of acute illness.  She is mildly asthmatic and prone to low-level chest infections, but medication was routinely in place to treat these, there had been nothing untoward when I had last seen her, and no concern had since been expressed to me by staff; furthermore, I had signed an advance care plan which stated that mum should not be taken out of the home, except in life-threatening circumstances that could not otherwise be managed – and never unaccompanied. 

(Her dementia symptoms were such that she had not been out of the home since 2012, or even out of her old room in the home for over a year; changes of environment caused her too much distress.)  Was there anyone to go with her?  No. It was the last hour of night shift and no staff could leave the premises. 

I spoke to a paramedic, who insisted that mum had “severe breathing difficulties” and unless they took her immediately, she could die. It was their job to keep her alive; the advance care plan was irrelevant.  (I have since learned that there is a difference between an advance care plan and advance decision.  The former is merely an expression of wishes agreed between a person - or their representative, if they have already lost mental capacity - and a private care provider; the latter has legal force, but can only be drawn up by the patient themselves while still having capacity, and pertains to NHS services.  The advance care plan can be overridden by doctors or paramedics in what they consider to be the patient's "best interest" in an emergency, and has no force outside the premises of the private care provider, ie. in an ambulance or hospital.)

All I could do was get straight into the car and race the 100 miles in morning rush-hour traffic to join her. (What if that hadn’t been possible?)  I knew it would take me up to three hours to get there – in which time my beloved mum, a vulnerable 89-year-old with severe cognitive disability, could die alone and terrified in the back of an ambulance or in a strange Emergency Department, with no-one who knew her to comfort her.  This was not meant to happen.  Everything I had done in the preceding decade or more to care for her was aimed at avoiding such an undignified and desolate end.

En route, I spoke to the day nurse, who was trying to find someone to go ahead of me to the hospital, as I had begged, but reiterated that there was no-one available from shift.  They simply did not have any slack in the system. (Mum’s local friends are now also very elderly and could not attend such a distressing emergency.)  At my request, the nurse called a particular care-worker who knew mum well, and she agreed to go – on her day off, using her bus pass.  She was there when I arrived, a kindness for which I’m eternally grateful.

I’ll discuss the hospital experience in another post.  Suffice it to say, by the time I got there (and indeed before the care-worker had arrived), mum had been treated with IV fluids and antibiotics.  No medical records had been sent with her, so doctors had no drug history; they only obtained this by phone after I arrived. 

The diagnosis was aspiration pneumonia - a prime cause of death in people with dementia.  This occurs when a person inhales a piece of food or fluid and develops an infection on the lung.  Symptoms can look like choking (and choking may have caused the inhalation), but the mechanism is different; suction equipment, available at the home for choking emergencies, can only remove an obstruction in the throat, not the lung. 

People with dementia often develop problems with chewing, swallowing, and inhalation – three subtly different processes in the mouth – due to both diminished motor skills and cognitive malfunction.  Supervision with meals is therefore vitally important in the latter stages of the disease.

I had seen mum only 10 days earlier, but I was shocked at her changed appearance.  Her weight had already been very low (about 5 stone), but in the interim her face had become skull-like and one of her eyes was gummed shut with infection.  She had evidently lost weight in that week.

As far as medics were concerned, her treatment was over.  She was admitted overnight for observation, mainly in order to arrange transport back to the home, and to ensure that she was strong enough to withstand it.  A social worker from the Older Adult Liaison team intimated that I had to seize the right moment, as elderly people transferred in such circumstances often do not survive the trauma: where would I rather she died?  Here in hospital, or back in the home?  

While mum was being prepared for discharge the next day, I went to the home to fetch a clean nightie (she had not been sent with any personal effects or change of clothes).  This was my first opportunity to see the new room – and again I was shocked at what I found.  Yes, I was pleased that it was next to the manned nursing station and close to the new lounge; but it was a smaller room with less storage space than her old room – and it had been left in a terrible state of disarray. 

This was not a result of the paramedic attendance, but of the room move a week earlier.  Mum’s belongings had been dumped willy-nilly on any available surface, including the bathroom; a number of things had gone missing (some never to be recovered, with no explanation).  Everything was covered in dust.  The wardrobe was more than half full of other people’s clothes.  The toilet flush was broken; and in the bathroom there was no paper towel dispenser, but a mirror – a real no-no in a dementia unit.  It all spoke of haste and lack of time even to make good after the event.  What was so urgent that she had had to be moved in this insensitive way, without my knowledge? 

I had experienced possibly the worst 36 hours of my life, desperate to ensure that my dear mum, whom I had sought to protect for so many years, would not die alone in sordid conditions.  Now I stood in this room – for which we were paying over £1,200 per week – and struggled to understand how all this could have happened in a previously exemplary home, for which I had written glowing reviews and even editorial in praise of the wonderful staff. 

Over the next four months, as I pursued a complaint against the provider, I began to find some answers

Part 4: Conclusion

Part 1: a Good Home

Part 2: Problems

Five-Star Hotel, Five-Star Care? Part 2: Problems

2015: Mum had been in residential care since 2011, becoming mostly bed-bound in the last eighteen months. We had progressed further along the dementia journey, which brought new emotional challenges at every stage; but during those four years, I never had cause for concern about the home or its staff, in whom I had complete faith.

That summer brought insidious change that would rock my former certainties. First came news in June that the long-standing manager would be leaving at the end of August.  A highly experienced nurse, she had established the home in the 1990s under the original person-centred ethos of the operating provider – pioneering at the time – and maintained those exemplary standards for the next twenty years of her tenure.  I had hoped she would remain at the helm throughout my mother’s time there, but knew that impending retirement might make that impossible; I was therefore disappointed, but not surprised, by her announced departure. 

What did surprise me, however, was that she was not retiring, but leaving to take up a post at a new home, rather than spend her final years in situ; and that she suddenly disappeared in mid July, more than a month before her notice period. There was no advance warning from the provider, only a somewhat perfunctory letter introducing her successor after the event.  I did not even receive this letter myself until I enquired some weeks later, mystified as to what had happened. The early departure was clearly unplanned, as it left the home without a manager for two weeks.

Around the same time, one of the two nurses in charge of mum’s unit also left, as did the housekeeper.  In the ensuing weeks and months, there followed a stream of other departures: the Deputy Manager (an award-winning nurse of long service); several other nurses from both day and night shifts; a number of care assistants; the chef; the long-standing receptionist and her replacement (who lasted only three months).  

Residents and families received no forewarning or explanation, which struck me as very odd, given that I knew these staff to be decent, caring, and considerate of the frail elderly people who depended on them and of whom they had been fond.  I later learned that the company had barred them from telling anyone (residents, families, or colleagues) more than twenty-four hours before their departure.

While such practices may be common in finance, law, retail, and the media, one might (perhaps naively) expect care to operate under different values – because residents are not “customers” who can exercise market choice on a daily basis, but extremely vulnerable people who have sold their own homes and given their life savings to fund a place in which to live out their final days, whose well-being hinges on trust and continuity, and for whom any upheaval poses a risk.  The contract between care provider and resident is more than financial, but this company evidently deemed its own commercial sensitivities more important than the security of its residents; and of course one may ask why so many good staff of long-standing and expert experience should suddenly wish to seek employment elsewhere…

The physical environment was also thrown into flux.  Refurbishments had indeed been due – but proved far more extensive than simply refreshing worn out furniture, curtains, carpet, and paintwork. Public areas downstairs (seldom used by residents or families) became palatial, with luxurious fabrics, expensive contemporary furniture and lighting. 

Upstairs, meanwhile, the dementia nursing unit was suddenly stripped of all familiar features and left in a state of bareness for several months thereafter, because there was no budget to hire outside contractors to complete the job – the two maintenance staff were expected to add these major refurbishments, including kitchen-fitting, to their routine duties (which also suffered as a result). 

I was dismayed to find that previously exemplary features of dementia-friendly design – brightly coloured doors, picture signage, contrast handrails, rummage materials and orientation aids – had been removed without consultation and replaced with cold, minimalist, all-white décor.  The whiteboard in the lounge, that signalled which staff were on duty (and how many) was taken down, as were residents' names from their room doors.  The effect was depersonalising for both parties. It seemed that the management was keen to erase anything that made this look like a care home.

Pets too were quietly phased out; the soft toys and live plants that had created a homely atmosphere in a small conservatory area (and initially sold the home to me) were disposed of with no explanation.  Even relatively new features, such as two charming seaside corners, were summarily ripped out to create a uniform look – that of a spa hotel.

Worst of all, mum’s unit was notably understaffed.  In 2014, when she had become frailer and mostly bed-bound, mum had been moved into a room next door to the nursing station and directly abutting the lounge, so that she could easily be monitored and have company close at hand.  But in the autumn of 2015 I was frequently disturbed to find both the lounge and the nursing station empty.  Mum, and several other bed-bound residents, was effectively alone in her bed.  Few staff were visible at all on the wing, and if I did glimpse them, they would be rushing down corridors en route to a task, with no time to talk. 

I had vaguely known that a formerly disused corridor at a right angle to mum’s unit had been refurbished to provide more accommodation, but I never had occasion to go there; it had previously been behind a key-pad door. Only belatedly did I learn that this was in fact a whole new wing, with a separate lounge, that doubled capacity of the nursing dementia unit – without a commensurate increase in staff. 

While a few new care assistants had been engaged, others had left or been seconded to other units, and, crucially, no second nurse per shift had been hired for the extended wing that now catered for up to twenty-four residents with advanced dementia, instead of the previous twelve.  A daytime staff/resident ratio of 1:3 (including a nurse) had by stealth become 1:5 (with the nursing element diluted by half), and 1:7 at night, instead of 1:6.  Furthermore, fewer of those staff knew the residents in depth (or indeed at all); by Christmas 2015, only one day-shift nurse on that wing had worked at the home for more than three months, and there was a marked increase in casual agency cover.

When the wing previously had only 12 residents and four day-staff, it felt like a family unit; staff knew everyone’s personal foibles.  Residents had a key worker, who would have primary responsibility for their wardrobe and personal care.  Even I, as a regular visitor, could tell you what style of dress each person wore and match up any stray laundry items; but in the months leading up to Christmas, racks of unidentified clothes began to appear in corridors, inviting staff to try and pick them out.  The laundry itself went badly awry, with much of mum’s nightwear being shrunk to child-size.

The new manager had been in post since the beginning of August, but her introductory meeting with families was not held until mid October – on a weekday afternoon, when most working relatives would not have been able to attend.  By then, I already had serious concerns, so made a special effort to be there (involving a 200-mile round trip ahead of my usual weekend visit to mum).  I raised the issue of staffing levels on the dementia nursing unit and the desolate atmosphere on the original wing.  The new lounge at the other end of the unit was much more cheerful, and this is where all the mobile residents and most of the staff spent the day.   

Of course this made sense, given that the old lounge and kitchen were in a continued state of disarray, and one nurse could not be in two places at the same time (she was now based in the second nursing station by the new lounge). If you have few staff to monitor an increased number of residents, you need to corral the majority in one place, in order to keep them in sight together.

But what of the bed-bound people in the old wing?  Staff did their best to ensure their basic needs were met, making the required scheduled checks and bringing meals across from the kitchen at the other end of the unit.  This was, however, a long walk away; and in between such task-based attendances, there was no ongoing company or activity on the wing. 

The manager said this was temporary, due to the refurbishments, and both lounges and nursing stations would be manned in due course.  No action was taken and the situation persisted into the New Year. 

I later discovered that she had been powerless to address the staff shortage, as the budget for daily running costs did not allow for any more personnel, and funds could not be diverted from the ongoing programme of lavish redecorations - that money was ring-fenced at source.  Thus it seemed the company had prioritised kerb appeal to “brand new customers” over practical care for existing residents.

As autumn turned to winter, my sense of unease grew.  Mum’s right hand had become severely contracted, meaning that she couldn’t use it to grip; she had taken to eating tiny portions of food with only her left hand and struggled to manage cutlery and china (ideally she needed a light, plastic, bright-coloured beaker, but these were scarce, while heavy new white china double-handled mugs were in plentiful supply).  If she did not have supervision, food and drink were more liable to spillage than consumption. 

One November afternoon, I had come to meet the NHS Continuing Healthcare Assessor to go through mum’s funding review (she had been turned down for CHC the previous year and continued to be self-funding, but I thought her needs had increased).  While we were in the empty old nursing station, looking at paperwork, a cup of coffee had been brought to mum in bed next door.  When we went in to see her, we found that she had spilled it all down herself and the bedclothes, and had been sitting for about an hour in her wet nightie.  There were no staff about.  If we had not been there, it might have been another couple of hours before she was changed.

I also noticed that the cold drink dispensers in both kitchens on mum’s unit were frequently empty or disconnected.  These had previously offered a continuous supply of squash, day and night, which passing staff could routinely take to residents every time they were monitored.  Now drinks appeared to be prepared “on demand” from bottled mix – but people with dementia are often unable to ask for what they need. 

When I raised this, again I was told it was temporary, while the refurb was in progress; but as time went on with no change, I concluded that it was more likely a catering economy.  The delicious cream cakes, trifle, meringues, and gateaux that had regularly appeared at mealtimes to tempt fragile appetites were now replaced with a limited choice of cheaper plain cake and bulk-buy biscuits. 

In the weeks up to Christmas, I continued to flag my concerns to staff, but heard nothing more from the manager.  There was no follow-up from the meeting.  And in December, concern suddenly turned into crisis

Part 3: Crisis

Part 4: Conclusion

Part 1: a Good Home