Saturday 22 August 2015

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 20th 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.)


  1. my mum no longer remembers visiting the home I have in mind for her, she too has anosognosia – your experience is very similar to mine now and I am grateful that you have written about it so lucidly, i will, when it comes to it have to 'go behind her back' to get her there and it's heartbreaking as you know.

  2. Thanks, Penny. It is such a tortuous situation, for both parties. I found some comfort in other first hand experiences of this on the Alzheimer's Society Talking Point Forum (link on right). No-one has the ideal solution, but it helps to know that you can get through it somehow.

    At the time, it seemed utterly overwhelming to me in its impossibility, but mum did settle and has now been in her home for nearly four years. There's no way we could have gone on as we were.

    I wish you (and anyone else going through this) all the best as fellow travellers.