Wednesday, 12 November 2014

Women's Identity: Who Cares?

Two thirds of people living with dementia in the UK are women, as are the majority of carers, both family and professional.  It's an issue that affects women disproportionately in various ways - financial, practical, political - as I have previously discussed.

This summer I was interested to take part as an interviewee in Dementia Women, an ongoing project funded by the Joseph Rowntree Foundation and run by Innovations in Dementia and the Social Policy Research Unit at the University of York, which examines women's experiences of dementia in the wider social, cultural, and emotional sense.

I was invited to speak at the launch of the booklet (written by Helen Cadbury with photography by Eloise Ross), which aims to spark discussion and raise awareness of these often hidden stories.

What I had to say was a provocation to debate: I make no apology for stating it as personal opinion - there are more than enough stats out there (see my links above!).  

For me the greatest tragedy of dementia is its effect on identity and relationships. 

And I would suggest that society more readily grasps the loss of identity experienced by men – living with dementia or in a caring role - because it equates the man’s self with his public role: doctor, engineer, lawyer, sportsman, driver, head teacher, famous author.  Something active and respected, the loss of which is visible to the outside world.

Of course there are women in these same public roles today, and maybe by the time they and their children have aged, expectations will be more equal; but older women already living with dementia now (and their female carers) are less likely to be identified by public status than their husbands, brothers, or fathers. 

Read any news headline and a woman is still more likely to be described as “wife and mother, 32” or “grandmother of four”, regardless of profession and interests. Unless, of course, she’s a sex worker – which will be deemed worthy of mention, if she’s a victim of violent crime.

Last year, there was an outcry on social media when the New York Times published an obituary with the opener:

“She made a mean beef stroganoff, followed her husband from job to job, and took eight years off from work to raise three children. ‘The world’s best mom’, her son Matthew said.  But Yvonne Brill, who died on Wednesday at 88 in Princeton New Jersey, was also [my italics] a brilliant rocket scientist…”

More recently, Amal Alamuddin was feted in the media, not for her achievements as a top international human rights lawyer, but for marrying George Clooney – and, of course, for losing weight. 

Last weekend, I went to see the new Mike Leigh film, Mr Turner, in which Timothy Spall gives a bravura performance as the celebrated painter.  Like The Invisible Woman, Abi Morgan’s adaptation of Claire Tomalin’s book about the relationship between Charles Dickens and the young actress Nelly Ternan, 'Mr Turner' shows that male genius is often achieved at the expense of female sacrifice.  It’s a familiar image: the driven artist or pioneering scientist, feverishly toiling in his studio, laboratory, or office, while his wife or lover brings him a drink, tidies the house, and keeps the children and creditors at bay.

Now intellectually, we know this is an outmoded stereotype; we know women can do these things too and some most certainly do.  But on an emotional level, we still largely expect women to be the nurturers, the “supporting cast”.  Their identity, in the public consciousness is not autonomous - even if they are high-achievers - but bound up with those they care for. 

So when a woman begins to lose her faculties or starts to withdraw from professional life to care for someone else, it may pass without much notice.

Coverage of dementia in news stories and government edicts usually focuses on financial constraints: working hours lost to the economy, the cost to the NHS.  These are tangible things that affect the “male” world of politics and finance.  But what of the cost to the individual?

Women’s identities, the greater bulk of their lives, are often hidden in the domestic realm, like the body of a whale, showing no more than a dorsal fin above water.  So when they begin to lose grip of who they are, who notices?  Who cares?

And if we are so much the product of our relationships with others, what happens when shared memory erodes, and those bonds too are gone?

My mum was a singer, a teacher, chatterbox, comedienne; a lover of pretty things - perfume, jewellery, music, animals – and most of all, of me.  Who mourns the loss of all that?  Only me.  And who am I now, after more than a decade of watching dementia take her?  Single, childless, back to square one in my career; unknown even to the person who gave birth to me, to whom I have devoted those years.

Dementia is about much more than economics.  Yes, we need policy-makers to address the many financial and professional disadvantages it forces on women; but I hope this project – and all our collective efforts – will shine a light on the deeper losses of self that are felt by so many women behind closed doors.

Wednesday, 29 October 2014

"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”?

This summer I was invited by the Mental Health Foundation to give testimony at their ongoing inquiry, Dementia and Truth-Telling. This is 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.

Such 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 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 other 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 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. 


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…


Friday, 24 October 2014

Confabulations, No Celebrations

Confabulation. Sounds like a hybrid word, doesn’t it, like “fantabulous” or “ginormous”? And indeed it is a hybrid – of fact and fiction. If you haven’t heard of it as a term, you’re not alone; but if you care for someone with dementia, you may recognise it in action.

I’m not a medic or scientist, so I’ll describe as a layman how I understand the difference between three related symptoms of some types of dementia: hallucination, delusion, and confabulation. 

We may be more familiar with the first two:

Hallucination – seeing or hearing things that are not there.

Delusion – believing things that are not true or misinterpreting information.

While these two states can be very disturbing for both the person with dementia and those around them, they are reasonably straightforward to grasp. You can tell at once if there is, or is not, “a man in clerical robes” or “a big fat bottom!” at the end of the bed, or a woman whispering in the wall. 

Delusions, such as a belief that a dead relative is still alive, can be harder to handle, but the factual truth can be determined. 

Confabulation, however, is a complex amalgam of fact and fantasy, in which a false narrative may involuntarily be created by a person’s belief that an imagined scenario is memory. 

This imagined scenario will usually be woven around a kernel of truth: an event that actually happened, transposed to a different time and place, or involving a different set of characters; or an emotional trauma that was real, but misremembered in a different context.

And because there is an element of veracity at the heart of it and it may contain mundane, inconsequential detail as well as major incident, such a hybrid narrative may be very hard for the carer or other friends and relatives to unravel. 

For instance, my mum was a professional singer in her youth. I know that on several occasions she studied at the famous International Summer School of Music at Dartington Hall in Devon. This is her treasured photograph of the composer Stravinsky (right), taken on one of those visits in the 1950s.


At around that time, she also attended the International Eisteddfod at Llangollen in North Wales. That’s a fact. 

But in latter years, she began to tell me that she had been present to see the tenor Pavarotti “make his name” there. Now Pavarotti did perform at Llangollen in 1955 – in a choir with his father. The choir won first prize in competition. Pavarotti later gave many interviews in which he credited this as a formative experience that inspired him to pursue a singing career. 

But he was only 19 at that time and had yet to make his professional operatic debut; he would not have been noted individually. Yet my mum was adamant that she had not only been aware of him as a soloist, but that the performance had made him a star; and she had seen it happen.

Then in 2007 a cousin of mine, whom neither of us had previously met, came from abroad to stay with me for a few days on the way to a friend’s wedding. I had planned to take her to visit mum too and see the countryside around my hometown; but in the event there were terrible floods, and the water supply at mum’s was cut off for nearly two weeks. I couldn’t take my cousin there after all. Mum, however, would later talk about this visit as if she had not only met my cousin herself, but had hosted the entire stay. Her “memory” of this was based solely on what I had told her of things I had done with my relative.

Another time, I went into hospital for major surgery and was anxious about mum in my absence; the surgeon kindly called her from the recovery room to let her know I was all right. Mum was subsequently convinced that she had actually met the surgeon, describing in great detail what she had looked like and where they had met (“on the stairs”), despite this being a complete fantasy. 

She also told a friend that she had “been up to Ming’s; I didn’t go in, I just stood outside and looked up at her flat” – an account which greatly alarmed the friend, as mum was by then too frail to make such a long journey on her own and I was in any case not at home. Yet mum’s tale had sounded so plausible that her worried friend had called me to check whether it might indeed have been true. It was not; but another friend had brought mum to visit me at the hospital a few days after the operation. The surgeon had been in to check on me earlier that morning (long before mum had arrived) and I had mentioned this. So you can see where the seeds of mum’s hybrid story were sown...

Now you may say, what’s the problem? These are all fairly innocuous confusions; it doesn’t matter if they’re not true. 

And with examples like this, I agree that there’s no gain in trying to point out anomalies or assert the factual version; contradiction will only provoke distress. 

But other confabulations may not be so benign. I have detailed in an earlier post a particularly traumatic incident where mum believed that a tradesman had broken into her house and was holding me hostage. It was of course a terrible delusion, but those to whom she told this story had no way of knowing at first that it was wholly imagined. 

Similarly, she once told me, when she herself was in hospital after a fall, that she had been down the stairs (the ward was on the 11th or 12th floor and mum is lift phobic) and had sat in the foyer, where an orchestra had been playing; and that she had been taken from “the bus station” (which I later recognised from her description as the ambulance bay) to a nurse’s house, where she had been abused. 

Logically, I knew these things were all highly unlikely, if not impossible; but she believed them so completely and vehemently that I did wonder if there might be some grain of very confused truth.

Such threads of confabulation can be impossible to disentangle. The question then for carers is how should we respond? 

That’s something I’ll discuss in my next post, "Truth" or "Lies"?


Sunday, 25 May 2014

I Don't Know Who You Are


The day had started well. A jewel-bright morning of azure sky and fields fluorescent with yellow oilseed rape, as I made the two-and-a-half hour journey down to see mum. I stopped off as usual at the M&S garage shop, to stock up on flowers, a newspaper, and wine for her meals in the care home. Worried that she’d been eating less in recent weeks, I tried to think of something with which I could tempt her, but the sweet goods that had once been her favourites seemed pointless now that she was even turning down freshly-baked cakes and desserts in the home. At Easter, I’d taken hot cross buns, but she had waved them away with never a look.

So when I spied a strawberry stall by the roadside, I pulled over, pleased to have found a treat vibrant with life from the outdoors – the lush, green countryside of our home county that she never ventures into now. I thought of the many spring weekends like this, when we’d have been setting off out for lunch together at some village inn or wine bar in the town centre, where we’d sit under big umbrellas on the pavement and watch the world go by, eating fish and chips or a Sunday roast with a glass or two of wine… 

Those days are gone. Only I remember them now. 

But I was in light-hearted mood. This week I’d managed to set off a bit earlier and didn’t have to rush to make the early lunchtime at the home. Traffic was quieter too. I would have more time to arrange the flowers in mum’s room, check her supply of toiletries, and tidy myself up before lunch.

Mum was pleased to see me. “I didn’t know you were coming”, she said, “that’s a lovely surprise!”  It’s always a surprise, despite the fact that I’m there, regular as clockwork, every other weekend. Mum has long since stopped having any concept of time, so I don’t correct her or tell her when I’ll be coming again next – only “soon”. 

When I used to visit her at our family home, I would call ahead to tell her I was setting off in the car. At some point, perhaps four or five years ago, I realised that despite this accustomed call, which had been our routine since I moved to London in my twenties, mum would always be surprised when I arrived. In the time it took me to drive there, she had completely forgotten I was coming. Likewise, when I returned, I would call her as usual to say I’d arrived back safely; that had been essential since I’d left home. But latterly it meant nothing. “Back?”, she would ask blankly. “From where?”  “Your house”, I would say - to be met with bewildered silence.

This week, I noted that staff had dressed her in the bright pink jumper I’d bought a few weeks ago, but had not yet seen her wearing. It suited her and lit her up. Like me, mum chose steak and mushroom pie for lunch (in her eyes, we must always have the same), and managed a few mouthfuls. I was ravenous after the long drive, but tried not to wolf mine down too fast, to encourage her to eat more. She drank her glass of wine and seemed to be doing quite well. 

But suddenly she looked at me – a sharp, searching, mistrustful look, as if some black cloud or demon had passed behind her eyes - and I knew something in her head had changed. And then she said it: “I don’t know who you are. Why are you here?”

I choked back the shock, tried to keep calm, show no reaction.  “I’ve come to see you”, I said. “I’m Ming. Your daughter.”

“Pfft!”, she said, with a dismissive gesture. “You look like. But you’re not.”

It was my late father’s birthday that day. He’s been dead for 26 years. Normally, I would never ask mum “do you remember?” this or that; I know you’re not supposed to do that to someone with dementia, because the answer is usually no – leading to confusion and sense of failure. But on this occasion I needed to know – what did she recall now of our past life?  So I asked her, “Do you remember Wai?  My dad?”  “Of course I do!”, she said, outraged.  “Stupid!”

I focused on my meal. She had stopped eating hers and would not be persuaded to try any more; she started to mess it all up.

“Dreadful!”, she exclaimed in disgust.  “Dreadful!!” 

“What’s dreadful?” 

“Me!  This!  Here!  What I’ve become.”

And I couldn’t hold it together. How could it be that at the same time she didn’t know who I was, yet she was lucid enough for once to know that she was somewhere she didn’t want to be, because something “dreadful” had happened to her? She’s had no context for where she lives for years. Not since she’s been in residential care – nor for some considerable time before that, when she had stopped recognising her own home and was desperately frightened by it. Yet now, in this moment, she somehow knew what she’d “become”. And grieved for it, just as I do.

I fled to her room, as discreetly as I could; and only when the door was shut, a corridor away, did I allow the tears to come. Kind staff followed to comfort me. 

I asked them to carry on serving mum dessert, as she’d be more likely to eat that, I thought. And when I’d gathered myself, I went back into the lounge. Mum was oblivious that anything had happened, although her mood was hardly better. She stubbornly and silently refused her favourite meringue, so I tried her with the strawberries. Miraculously, she accepted one or two. 

And slowly, over the next few hours, as I sat with her “watching” TV, we regained some equilibrium. By the time I left, she knew that I was “Ming”, that I was her daughter, and that she loved me – although how far she can put those three ideas together I’m not sure any more.

It’s been several years since she’s really known who I am in context: that I’m her daughter, I’m in my forties; I’m not married and have no children; I live in London; I’ve been a writer of TV drama, and I’ve been looking after her. Sometimes she thinks I have a “sister” (I don’t). I believe this is her memory of me as a sweet, pretty, vivacious young woman, the “Ming” she really loves, from the life we’ve both had to leave behind; whereas the person who visits her now is a tired, dowdy, middle-aged woman called Ming, but someone else. 

It is generally known that there may come a time when a person with dementia does not recognise his or her own closest family. This is sometimes perceived as a sad but benign stage of “blissful ignorance” before the end, like a gentle drift into sleep. Maybe that’s how it is for some. But not for my mum. 

I understood that she hadn’t “known” me, as the real person I am now, for a long time. But this was the first time she’d said so baldly to my face that she didn’t know me at all; and what upset me more was that it wasn’t just non-recognition, but hostile, dismissive, full of active contempt. There was hatred in her eyes.

Here is a picture of my lovely mum, as I best remember her, in the 1990s, before dementia took its hold. It was taken on one of our many happy pub lunch outings.

It is inconceivable that the mum in this photo would ever look at me with hate or contempt; that she would ever deny me. But as she is now, she does. Not always, thankfully, or permanently as yet. There is still enough of her real self flickering within; but I know that will diminish. Each time I visit, I dread the moment when she looks at me as a stranger and that recall doesn’t come back.

I’m not a religious person, but I can see why the Biblical idea of being “thrice denied” is so powerful. It’s an act of rejection – betrayal – by the person who had previously been closest, most loyal. I’m not drawing comparison with Christ here; but on an emotional level, denial by a loved one with dementia is that ultimate hurt for family. Particularly when that loved one is the only family you have left, the one who loved you most – or perhaps the only one who loved you, to whom you have devoted your life.

Of course, they are not wilfully rejecting you, but are perhaps frightened themselves of not knowing who they are and scared to find "strangers" around them. But understanding that doesn’t make it hurt any less. 

There were times in recent years when I broke down in despair at the situation mum and I shared; although I tried not to let her see how upset I was, there was a part of me that wanted her to see, to be moved by it, to show me she still cared. Yet she would watch me cry in a detached, almost anthropological way – like a scientist examining a subject. 

The last night we spent together in our family home, the night before I took her into care, she found me curled up, sobbing on my bed. She stood and looked on from the doorway for a few moments, not exactly upset, but vaguely disturbed. 

“Why are you crying?”, she asked.  I couldn’t reply: it was too huge.  “Come on!”, she said, “stop that now.”  I couldn’t.  “I love you, as if you were my own daughter.” 

‘As if?’ ‘As if…?’  Then who did she think I was? That was in 2011.

The day before last week’s incident in the care home, when mum had said “I don’t know who you are”, I had been speaking at the Alzheimer's Show in London; I had also sat on a Question Time Panel alongside Jeremy Hughes, CEO of the UK Alzheimer’s Society and Baroness Greengross, Chair of the All-Party Parliamentary Group on Dementia, among other experts in the field.

Afterwards, I met two ladies, who expressed surprise to find me queuing with them for the loos. “We just saw you on that panel”, one of them said, “I’d have thought you’d have somewhere special to go.”  No, I explained, we all have to go in the same place. That strikes me as a good analogy: where dementia is concerned, there are no V.I.P. toilets. We are all in the same queue…

Anyone who saw me speak that day might have thought that I had come to terms with my mum’s dementia, that I’d “got it sorted”.  But the truth is none of us has. 

We learn to accommodate it on a practical level, to accept it intellectually. But emotion can never be wholly tamed; those moments, when the person you love most in the whole world says they don’t know who you are, can still floor you, however much control you think you’ve gained. 

I’m glad there’s far more dementia awareness now – initiatives such as Dementia Friends to teach the public the basics, and much good work being done in professional dementia care. 

But my final thought to policy-makers, media, and professionals at the end of Dementia Awareness Week 2014 is please, never forget how it feels

For families, it never stops hurting. And sometimes the only honest response is to flee into another room and simply bawl your heart out.