My Biggest Lie: Part 1

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Continued in Part 2

* Welsh for grandmother (pronounced "nine").


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

Say the Unsayable

The world is rightly becoming more aware of the needs of people with dementia, and “living well with dementia” is a vital aspiration; but it seems to me that the drive to promote this undoubtedly worthwhile concept can sometimes deny the harsh reality for family carers. 

While it is possible to live well with dementia in the earlier stages and may remain so for some, for others the later stages are a monumental daily challenge, compounded by social and political pressure on family carers to maintain a brave face of positive thinking, “compassionate communication”, and willing self-sacrifice. 

We do them a disservice to pretend otherwise and thus to engender guilt for justifiably feeling overwhelmed, exhausted, angry, resentful, lonely, trapped, scared, and just plain heartbroken at the gradual loss of both the person they care for and the life they shared.  Professionals choose to enter the world of dementia and can likewise choose to leave.  Those whose families are struck by the disease have no such choice.  When dementia comes knocking, it won’t take no for an answer.

Lack of insight – the inability of a person with dementia to recognise their own needs and limitations – is the distinguishing feature that can make this type of caring particularly hard. Outsiders may think of “care” as a series of tasks.  Well, tasks are bearable; you can plan for them and factor them into your life.  I would be happy to undertake any number of tasks for my mum.

What I struggled with was the lack of co-operation or acknowledgement from her (often obstructiveness and fierce antagonism), which meant that I effectively had to go “undercover” to meet her care needs: fearfully rushing to change bed-linen when she had dozed off for five minutes downstairs; putting her clothes in the washing machine when she had gone to bed and getting them in and out of the tumble dryer before she was up the next morning; hastily clearing the fridge of rotting food and replacing it with fresh when she wasn’t looking; calling the doctor, hairdresser, and chiropodist secretly to arrange appointments for her and inveigling her into the car on some pretext; asking the GP for a referral to social services behind her back; hiring a carer to pose as a “health visitor” to check on her in my absence and ensure that she had a meal; and ultimately, when all else became inadequate, arranging a residential care place without her knowledge.  The worst thing I have ever had to do.

It was this suffocating, relentlessly stressful covertness  - not the tasks themselves - that wore me down over the years, together with distressing changes in mum's personality that distorted the previous dynamics of our close relationship.  It is our instinct to protect and nurture those we love.  I chose to look after my mum, in that I would always naturally do whatever I could to keep her safe and well and to make her life happy and fulfilled. But the gradual and mysterious progress of her dementia over the best part of 20 years meant that there was never a conscious point at which I chose to give up my own life in the process.  It just happened – and she has no idea.

In November 2013 I attended the annual meeting of the Dementia Action Alliance in London, at which the Carers' Call to Action* was launched.  One of the speakers was Ray Carver, who talked with admirable candour about the impact of her husband’s young onset dementia.  Like my mum, he remained in denial, and she had the responsibility of all decisions and organisation; like me, she found her whole life subsumed, while he remained oblivious, believing himself to be independent. Formerly a nurse, Ray confessed that her professional background still left her unprepared for the intense emotional trauma of living with dementia.  “I was a confident person”, she said. “Now I don’t know who I am.  I've lost myself.”  I’m sure many family carers will identify with that.

As a freelance scriptwriter in TV drama, I naively thought that my ability to work from anywhere on a laptop would be the solution to mum’s increasing needs.  But I discovered that high stress 24/7 soap writing is not compatible with high stress 24/7 dementia crises (not many jobs are!); and as sole carer with mum necessarily my first priority, I simply fell out of circulation. It wasn’t my decision, and now that mum is in residential care  - the thing I most sought to avoid - I have to pick up the pieces and start again, having lost the most productive years of my career (and personal life).

What seems incredible to me now is how long I soldiered on without knowing or being able to say that my mother had dementia. Although friends noticed that she repeated herself and sometimes mixed up appointments or got confused with money, she functioned reasonably well on a public level to those who would see her for maybe an hour or two at a time; only I was fully aware of the more disturbing symptoms of paranoia, obsessive behaviour, and cognitive malfunction, and had no-one with whom to discuss them and gain some perspective.

By 2007 and again in 2010, I was desperate enough to seek counselling for the utter despair I felt at the all-consuming and apparently manipulative drama our life had become. With no diagnosis of dementia, mum in denial, and no third party to mediate, I came to view these problems as “relationship issues” requiring “boundaries” to preserve my mental and physical health.

Indeed, with hindsight I can see that some of the more extreme paranoid symptoms of dementia can induce behaviours we might otherwise consider to be abusive: intense jealousy, possessiveness, and separation anxiety, leading to the carer’s effective imprisonment in the home and isolation from other family and friends; false accusations of wrong-doing that undermine confidence; round-the-clock harassment by phone, and sleep deprivation; denial of the carer’s own needs and objective reality, leading to a negation of identity.  Ray Carver told how frightened she had been by her husband's out-of-character aggression.

Of course now I understand that my mum couldn’t help these terrible behaviours – they were a product of her confusion and fear, caused by organic changes in her brain.  But for a long time, this was far from clear. 

If professionals ever came to the house, she would appear “normal” for their ten or twenty minute visit – articulate and sociable - and would insist that she was fine, did everything herself, had no carer. She totally believed this herself, and although much of what she said was untrue, they had no way of knowing and would go away satisfied that she was “coping”, when in fact I was on my knees.  Consequently, for a very long time, I did not identify as a carer even to myself, let alone to the authorities.

It took crisis situations to prove to me that this wasn’t a relationship problem – my mum had an irreversible, degenerative illness that no amount of love, effort, or accommodation on my part could solve.  I finally realised that what I needed was not therapy to learn how to modify my own (perfectly natural) distress response to her behaviour, but practical help to support us both with her debilitating disease.  That meant breaking silence.

So please, if any of this is familiar to you from our own experience, don’t try to weather it alone.  Don’t let the years slip by until both you and the person you care for have become invisible.  Take courage and ask for help now. 

And if you are a friend, neighbour, relative, or professional who suspects that someone you know may be living under these conditions, reach out and speak the first word.  They may not initially thank you for breaching that code of silence; but one day they will.  For the sake of those not “living well with dementia” – both those who have it and those who care for them - let’s be brave and say those “unsayable” things.

NB: For an important ruling on information sharing in health and social care, which may assist family carers in discussing concerns with professionals, see The Information Governance Review, March 2013, pg. 119, Principle 7: "The duty to share information can be as important as the duty to protect patient confidentiality.  Health and social care professionals should have the confidence to share information in the best interests of their patients, within the framework set out by the Principles." 

See also a document published by Carers Trust and the Royal College of Nursing on the Triangle of Care - the best practice partnership between people with dementia, their family carers, and health and social care professionals.

* The Carers' Call to Action was a time-limited campaign to raise awareness of dementia carer issues; it was wound down at the end of March 2015, but its work continues through a new organisation, Tide.

Update 2019: A new charity, Dementia Carers Count, has been set up specifically to support family dementia carers, offering 3-day residential and one-day sole topic courses for respite, education on dementia, coping strategies, practical, legal and financial information-sharing, resilience-building, and peer support.  These courses currently take place in a Birmingham hotel, prior to opening of a national resource centre in 2020-21. More details on link above.

Dementia UK Admiral Nurses and their helpline also offer support, as does UK Alzheimer's Society and its online Talking Point forum (peer support). 

Whose Low Expectations?

In February 2013, the UK Alzheimer’s Society launched a report into “attitudes on choice, care and community for people with dementia in care homes”.  What did they call it? ‘Low Expectations’. This report has been widely quoted in the UK media, with negatives firmly to the fore. 

“Less than a third of the public believe [sic] people with dementia are treated well in care homes”, screamed the headlines. “Only 41% of relatives reported that their loved ones enjoyed good quality of life”. 

Then, buried as a caveat, “Despite this, three quarters (74%) of relatives would recommend their family member’s care home”.  

Record numbers of people with dementia in care homes 

What are we to make of this apparent contradiction?  Are we to infer that 74% of relatives are so uncaring and feckless as to recommend a place that makes their loved one’s life a misery?  The Alzheimer’s Society chooses to extrapolate that those relatives have “low expectations” and therefore settle for substandard care. That’s the impression left by much of the news coverage and commentary. No wonder “dementia is the illness most feared by people in England over the age of 55” (Government NHS Mandate, updated 2014-15, pg 12, 2.12).

But let’s examine these statements. Firstly, the results of any survey can be hugely influenced by the phrasing and choice of questions.  This one appears to have focused largely on the respondents’ impressions and fears, rather than any objective assessment of their relatives’ situation: “less than a third of the public believe people with dementia are treated well in care homes” is a somewhat different qualitative statement than “less than a third of people are treated well in care homes” – yet the casual reader or listener could be forgiven for assuming the latter. 

And I would suggest that the conclusions drawn by the Alzheimer’s Society are not the only possible interpretations of this data.  If I had been one of the respondents, I would have said that my mum enjoys as good a quality of life in her care home as possible in her circumstances; but that her overall quality of life is not good.  That’s not the fault of the care home; she’s materially better off there than she was on her own at home in recent years. But for a long time her quality of life has been compromised by dementia. 

Thus I can well understand why far more people were willing to recommend their relative’s care home than could honestly say their relative has a good general quality of life.  The latter is not wholly dictated by the former.  The condition which brought them into care is at least as crucial a determinant. Q&A surveys are not equipped to record or communicate such nuances or ambiguities. Answers can also be manipulated to fit a pre-determined theory or agenda.

I know there’s a great drive to promote the idea that people can “live well with dementia”, and certainly we should fight for improvements and innovations in care across the board to enable this; but for many in the latter stages the reality is closer to “existing tolerably”. It’s misleading (and I think potentially harmful) to imply that this can always be transformed by good external agency – and to make relatives feel that if it’s not, that’s a failure of will, “expectation”, or resources.  Dementia is tough, whatever you do.  Let’s not beat about the bush.

So I was frustrated by the slant of this report commissioned by the Alzheimer’s Society and disappointed by the BBC TV season, ‘When I’m 65’, screened in autumn 2012.  

‘When I’m 65’ (and within it, the series When I Get Older) was a well-meaning initiative to raise awareness of issues faced by older people, including dementia and residential care. Celebrities such as Gloria Hunniford, John Simpson, Tony Robinson, and June Brown were sent for a few days to share the experience of care home residents and asked for their impressions.  The dominant theme was being “humbled” by what they learned; and while there was some attempt to find positive factors, their personal reaction was mostly shown to be one of dismay at the perceived loss of liberty, autonomy, and homely comforts - the restriction of lives. 

There was little corresponding sense of what those lives had actually been like before the residents entered care - the kind of long-term decline and repeated crises that often lead to such a decision, and the relative benefits of being in a safe place with 24-hour company, instead of being in many cases alone, hungry, dehydrated, perhaps confused or paranoid, and at constant risk of harm. 

The celebrities were invited to empathise for the course of the experiment, but in my view they projected their own expectations and background a little too much into their judgment of what they witnessed; and although some changed their viewpoint to a small degree, we were left in little doubt at the end that they simply considered themselves fortunate not to be faced with these issues for real and didn’t foresee they ever would be.  They tended to assume that their relative wealth, status, and loving families would protect them.  “I suppose I’ll rely on my children to make sure it never happens to me...” (The implication being that the families of the residents they had met had somehow cared less?)

This conclusion was not challenged by the producers – there was no onscreen presenter to put the argument that conditions such as dementia are no respecters of money, status, intelligence, talent, or belovedness; that residential care can be a relief and improvement on previous traumatic circumstances created by illness or disability; or that refusal to face the possibility of one's own decline, and share responsibility for it, can be selfishly short-sighted.

The BBC used familiar faces to front these programmes, in order to make the issues accessible.  Identifying with these figures, viewers were asked to consider how they might face care needs.  But in allowing the celebrities to revert to default setting – “Ooh, isn’t it terrible!  Poor things!  But it won’t happen to me” – the original fears and preconceptions the season set out to question were ultimately reinforced.

So long as media stories, surveys, and even charity and government initiatives continue to perpetuate a dread of care (and of diagnosis, which I'll address in my next post), thousands more will avoid discussing care needs with their families and professionals, fail to make plans, struggle unnecessarily without help - and still end up in crisis. 

Yes, we need more and better services; there’s plenty of room for improvement.  But we won’t get it by looking the other way, sticking our fingers in our ears, and choosing to believe that it’s “low expectations” that are responsible for poor quality of life.