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.)

"Truth" or "Lies"?

In my previous post I discussed confabulation, a lesser-known variant of delusion or hallucination, which can be experienced by some people with dementia. The challenge these symptoms pose to carers is how best to respond, in order to minimise distress?

Broadly speaking, there are three approaches:

Reorientation: attempting to reassert the factual truth, to override the delusion.

Distraction: changing the subject or focus of attention, to make the person forget the delusion.

Collusion: accepting the delusion and going along with it.

Any one of these approaches may be applied at different times and in different situations with the same person; you may find that one or other is more effective with their personality, or in the context of a particular relationship; and there may be no consistency – what works on one occasion may not on another, even moments later.

In my experience, reorientation is ineffective beyond the earlier stages of dementia; distraction too can be of limited use, if the person with dementia is inclined toward obsessiveness and cannot easily be diverted.

There are also ethical questions involved in each decision, either to disabuse someone of a (perhaps comforting) delusion or to collude with their misconception; and we may consider the significance of whether the respondent is a family member or a professional – in whom do we place greater trust for “truthfulness”?

In summer 2014 I was invited by the Mental Health Foundation to give testimony at their inquiry, Dementia and Truth-Telling. This was a major study into the ethics and practicalities of responding to altered states of perception in those with dementia. I was asked to consider a literature review commissioned by the Foundation, to discuss the contents and make observations from my experience.  

These are my headline points:

“Truth” or “lies”? 

There is of course a wider philosophical question, “what is truth?”, for “truth” as a concept is largely subjective. But for our purposes here, I use the term to mean fact: when responding to a person with altered perception, should we assert fact or not? 

I would say context is key. Acceptance of benign misconceptions can sometimes be justified, if this acceptance allows the person with dementia to feel more content or helps them to be compliant with necessary actions for their material good (e.g. eating/drinking, personal hygiene, medical treatment, accepting admittance to a place of safety, allowing responsible management of their financial affairs) – and if such delusions are not themselves harmful or do not create material difficulties.

For instance, it would not be helpful to collude with a delusion that a friend, family member, or tradesman has stolen from the person with dementia or otherwise done them harm, if there is no evidential basis for this.

Constructive collusion or “white lies” may however be easier and more effective for professionals than for family, because they have no shared personal history to create a knock-on effect. 

Where the carer has an emotional investment in the veracity of what is said - a shared history and ongoing emotional relationship with the person - the issue is much more complex. See my post, It's (Not) So Funny How We Don't Talk Any More.

I cannot see a justified role for proactive lying in daily care – i.e. deliberately creating an untrue version of events for reasons other than the contentment and well-being of the person with dementia. If someone is already experiencing paranoid symptoms and is generally mistrustful, it seems doubly important to me not to give them any cause for justified mistrust, if this can possibly be avoided. 

For that reason, my own approach is largely to be reactive to my mum’s beliefs and expressed thoughts, rather than proactive. If she asks me a direct question, I try to be as truthful as possible, while perhaps omitting or steering her away from the more distressing details of that truth. 

For instance, if she asks where “Daddy” is (either my father or hers), I will say “he’s not with us any more” and hope she will leave it at that. If she goes on to say, “He’s not dead, is he?”, I will say yes, but in as low-key a way as possible. I will not proactively “remind” her, nor make a big deal of her having forgotten, nor go into any details unless asked, as that is likely to distress.

I generally try to accept whatever she believes in the moment, unless it has a negative result for someone else – e.g. an accusation of wrong-doing against an innocent party (myself included).

Emotion is more memorable than fact.

Dementia erodes a person’s capacity for reason, logic, and factual memory. Emotion is what remains. Therefore, a person with dementia will be more likely to register an emotional impression than the factual content of what is said or done. 

Negative emotions, such as fear, anger, hurt are unfortunately more powerful than positive emotions in my experience. My mum will remember being upset far more readily (and for longer) than any pleasurable incident. 

So it’s more important to me to support her in feeling content, than to reinforce any factual message. Whether this involves “truth” or “lies” will vary according to context; the content is relatively unimportant, as it will be instantly forgotten – it is the emotional impression (if anything) that will be retained. 

Powerlessness.

It’s noted in the Literature Review (pgs 22-23) that less time is spent by carers on social interaction than on task-based care. While I would agree that time and resources are the main determinants here, particularly for professionals, I would suggest that a feeling of being powerless to ameliorate mental distress is also a factor.

Beyond a certain stage of dementia, it seems that nothing can truly answer the fear, hurt, and loneliness in a person’s head, because it is impossible to reason away fears, and efforts at emotional comfort are limited by the difficulty of being unable to acknowledge the truth of distressing life circumstances. 

Therefore the family carer may tend to focus on practical things, as these are elements where some positive difference can be made.

Contented Dementia/Compassionate Communication: effect on family carer.

The principles of contented dementia and compassionate communication are now routinely espoused in public (in media, specialist literature/websites, and by some professionals), to the extent that dissent can be perceived as unacceptable.

These principles can roughly be summarised in layman’s terms as: don’t ever argue with or contradict the person with dementia; enter into their reality and accept that they can’t enter yours.

While I would agree that this approach can be helpful in promoting contentment in the person with dementia, I think the potential negative effect on the family carer is largely unacknowledged. 

If, as the primary carer, you feel constantly told by everyone that your reality does not matter, it can seem tantamount to being told that you don’t matter; and any distress, frustration, grief, or resentment you may feel is selfish, ignoble, and to be stifled, because it is “bad for” the person with dementia.

This can be hugely destructive to the carer’s mental (and indeed physical) health. It can lead to the carer effectively living under similar conditions to those of domestic abuse: e.g. always subservient, walking on eggshells for fear of upsetting the other person, constantly censoring or modifying their own words or behaviour, denying their own needs, isolated from wider family and friends (of whom the other person may be jealous or mistrustful), and trapped in the house (by the other person’s separation anxiety or paranoid fears). 

A constant negation of the primary carer’s factual reality can lead to their feeling that they have been “erased” from the outside world. This can be mitigated to some extent by other family and friends supporting the carer’s “real” life; but for a sole carer in a domestic setting, the long-term effect can be catastrophic.

I would like professionals (and lay commentators) to acknowledge these issues and consider the holistic good of both parties, when advocating the principles of “Contented Dementia” in the home. 

See my posts, Paranoia - and the Other Fear That Dare Not Speak Its Name and A Stranger in My Home Town.

Environmental "Lies"*.

In recent years, artificial retro environments have become fashionable in some care homes and developments. I can see that it's a positive approach to try to accommodate and support the perceptions of the resident; and artefacts from the time of a person's youth may create a familiar ambience and trigger memory for some people some of the time.  

But I'd beware of investing too much (effort, faith, and finance) in such things, as they can become management gimmicks, not truly responsive person-centred care - which primarily requires human interaction.  A "one-size"  time-zone (e.g. 1950s street) is unlikely to chime with the mindset of all the residents all of the time - there may be a range of ages within a residential group, and even for the individual, different eras may be important (or conversely meaningless or disturbing) at differing stages of their condition.  And how often can a home afford to update decorative features in response to changing social needs, when most now struggle to meet daily running costs?  

Given how hard it is to second-guess a person's internal reality in the moment, it's really not possible to create a consistent (and future-proofed) "alternative reality" that will answer all the confusions and insecurities attendant on dementia; and a fake environment, however well meant, is fundamentally dishonest.

My Biggest Lie.

I have said that I don’t proactively lie, only “collude” or lie by omission when necessary for mum’s peace of mind. But there was one very big exception, which posed a terrible dilemma for me.  I’ll return to that in another post…

* This point added in March 2017.