Women's Identity: Who Cares?

Two thirds of people living with dementia in the UK are women, as are the majority of dementia carers, both family and professional.  It's an issue that affects women disproportionately.

In summer 2014 I took part as an interviewee in Dementia: Through the Eyes of Women (a 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 examined 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 aimed to spark debate and raise awareness of these often hidden stories.  

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.

In 2013, there was an outcry on social media when the New York Times published an obituary with the opener:

Mum (right) with her friend,
Jean

“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…”

The following year, 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. 

Around that time, Mike Leigh's film, Mr Turner, opened, 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. 

Mum, backstage at
Manchester Belle Vue

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.


Postscript: since publishing this post, I have written a play, The Things We Never Said, which explores these issues further, through the prism of a mother/daughter relationship. Starring Lia Williams and Siân Phillips, it was first broadcast on BBC Radio 4 on 11 May 2017, won Best Radio Drama at the Writers' Guild Awards 2018, and is available to read at BBCWritersroom Drama Archive.

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 she didn’t know who I was, yet 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.

This is 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.

A Stranger In My Home Town

My mum used to love Easter. More than Christmas, which was about drawing the curtains and holing up indoors against the dark nights; Easter meant the beginning of lighter evenings and longer days, daffodils in the garden, birds nesting in the eaves - everything fresh and green and full of new life.  

I was always home for Easter weekend, bearing the “Rolls Royce” of hot cross buns and simnel cake from the special bakery down the road from me. We’d sally forth in the car to one of our favourite haunts for a pub lunch or cream tea and potter about at craft fairs and farmers’ markets.  When she got older and more physically frail, we could still enjoy the beautiful scenery on our doorstep: gentle rolling hills, sheep in the fields, and golden stone that seems to smile in the sun.

This year, I could still bring mum cake and hot cross buns.  But they’re surplus to requirements.  She doesn’t register festive days any more, and there are freshly-made cakes* aplenty in the care home where she lives.  I’m grateful for that.  She likes their meringues, cream puffs, and sherry trifle; they keep up her interest in food.  But we’ll never again eat a meal together cooked by one of us in our own home.  And it’s over a year since we’ve been out.

If it were just a question of physical capacity, there would be aids to help. I look enviously at families visiting the residents in the ground floor unit, who might be in wheelchairs, but don’t have dementia. They can go out.  More importantly, they can speak to their loved ones on the phone between visits and anticipate such trips.  

Some people in mum’s unit can still do those things too. But not my mum. Formerly a prodigious talker, she now struggles with the technology and concept of phone conversation. (We take for granted the understanding that a voice on the other end of the line can be the same person we know in real life, just not in the same place, or that a recorded message can’t answer back; a person with dementia may become confused about such things).

With no short-term memory, she can’t look forward to future plans or recall pleasurable incident just past. She can’t remember having been in one room, once she has passed into another. Going in and out of the unit – even downstairs to function rooms or to the gardens in summer – is too disorientating for her.  

It seems unbearably sad for her life to be confined to just two or three rooms and a corridor. So for the first few months of her residence, I persisted with attempts to take her out, naively thinking it would be no different than our regular pre-care home jaunts to country pubs, our favourite restaurants in town, the theatre, or cinema. 

I finally came to accept that it caused more harm than good. In truth, the wider world had already become a threatening blank to my mum, long before she went into care. For some months, I had been shocked to find that she had no recall in conversation of the most familiar places – the main street she’d browsed in daily for 40 years, the restaurants where we ate each week, shops where staff knew her well and always welcomed her for a chat.   

At times, I became frustrated; I simply couldn’t believe that she didn’t know what I was talking about.  How can you forget so completely the everyday local knowledge that binds you to the place where you live?  The network of usage that makes you part of that community?

She’d been a teacher, and when I was a little girl I attended the same school. Before and after lessons, I’d wait in her classroom, sharpening pencils, helping to pin up children’s work on the walls, or playing the glockenspiel; and then we’d head home together. The journey took us through the town centre, where we’d have to change buses. Every day, we’d walk through the department store, sometimes looking speculatively at furniture (one of her perennial obsessions!), or more often lingering in the perfume department.

She would gossip with the assistants, while I was fascinated by the toiletries: not the expensive fragrances from Chanel and Christian Dior, but lemon-shaped soaps by Bronnley, in their waxed paper wrappers like Christmas tangerines; bracing 4711 Eau de Cologne in sprays and perfume sticks that I’d surreptitiously test on my wrist; hippy scent Aqua Manda, in its dark brown apothecary’s bottle, heady with orange and spice and patchouli - and, most exotic of all, Maja.

Maja came from Spain. There was eau de toilette, talcum powder, and soap in a dramatic red, black, and gold box, proud flamenco dancer in full flight. The soap came wrapped in black tissue: unusually khaki-coloured and very grown-up to a young girl, with a subtle, woody, spicy aroma. It wasn’t always in stock, which made it a treasure to find in any other store; and sometime in the 1980s or 90s it was discontinued in the UK.

A few years ago, I was then delighted to find it available online. It would make a lovely Mother’s Day gift, I thought, recalling memories of that time when mum and I were always mooching in town together. So I had it shipped all the way from the US and excitedly presented it to her. She opened it with only mild interest; sniffed and quite liked the perfume; then casually returned the soap to me. I was disappointed and not a little hurt by this reaction.

Looking back, her dementia was more advanced than I had realised at that time. She still functioned well in other respects.  But now I see: how could she recall the memories evoked by that scent, when she already struggled to recall the department store in town, the main street where it stood? These are landmarks known by all who live there, as familiar to us as our own house. And now she doesn’t remember that.

Of course it’s possible the soap meant less to mum in the first place, and that memory from thirty years ago was understandably hazy. But a person without dementia would have remembered something of it when prompted, or had the social grace to cover it up. Dementia just leaves a blank.

I had moved away to London when I graduated in the late 1980s, but continued to visit every other weekend and for longer spells. As mum’s dementia grew worse, I found myself spending more and more time back at the family home – to the extent that I often felt I was living her life more than my own.  That town was as much my home as hers, as much my home as my own district of London.

Suddenly it’s over. I still go to some of those places on my own, but it’s not the same. I can't talk to mum about them, in case it disturbs her fragile sense of where she is now. And with no personal connection, nothing to root me in that community by everyday engagement (stocking up with mum at the supermarket, browsing for clothes together in the town centre, paying her paper bill, taking rubbish to the dump), I’m an outsider.  

All the things we used to do that were bound up with that place – our shared rituals, the life we lived there with my late father – are only in my head now. No-one else remembers.

Dementia, we are told, attacks short-term memory: “they still remember the past”. Well, only selectively in my mum’s case, and only her own past - mostly her childhood or youth, long before my time. My past - and much of my present, the memories we shared of my lifetime - has gone.

A few weeks ago, she asked me out of the blue if I had a husband. I don’t and never have. I laughed it off at the time. But if she has no idea of something so fundamental about me, how much of me does she now remember?

The bereavements of dementia are many, and some are better known. I have come to realise that this cruel disease has not only robbed mum of much of the life we shared - it has left me alone with my own memories and made me a stranger in my home town.

(*This post was written in 2013. Sad to say, by 2016/17 the excellent selection of freshly-made cakes had largely disappeared, due to budget cuts at that home - a common scenario in the current climate of the care "industry".  See my four-part post, Five-Star Hotel, Five-Star Care?  In May 2018, I moved mum out to another home. 

She no longer knows me at all. You can read about our more recent situation in this post, An Act of Remembrance - Update 2019.)

A Thankless Task?

My mum is 86, has mid-stage dementia, and has been in residential care for just over a year*.  A former singer and teacher, she was for most of her life meticulous in her appearance, a smart hair-do being top priority.  In retirement, she regularly travelled 100 miles to a top London salon for the best cut and relished the social occasion.  As she got older and frailer, she became reluctant to make the effort for doctor, dentist, optician, or chiropodist - but remained hell bent on those crucial trips to the hairdresser!

Then suddenly, a couple of years ago, she developed paranoia about submitting to the experience.  I found it increasingly hard to persuade her, and finally she refused.  Her grooming declined, and with it her morale and sense of self; I became worried about her personal hygiene, but had to concede that raising the subject caused her greater trauma. 

So when she entered care, I was pleased to find there was an in-house salon, and signed mum up for a weekly blow-dry and bi-monthly cut; I hoped that staff, with expertise and back-up from colleagues, might be able to coax her. 

It was not an instant success.  Moving into care is a big step for anyone, and the cognitive difficulties experienced by those with dementia often mean that it’s not possible to prepare them in advance.  It was clear that mum would need a lengthy period of adjustment, during which it would be unwise to put her under pressure; she needed to feel she still had autonomy and respect.

Each week, staff would ask if she would like to have her hair done.  And each week she would say no.  Sometimes she’d agree, but say that she didn’t feel like it today; throughout the week, she would then tut to herself at “this hair!” and resolve to “get it seen to”.  But by the time the next appointment came up, she would have changed her mind.   

One year on, I had begun to despair that this block would ever be overcome.  But Sally, the unit manager, didn’t give up.  She and mum have a good rapport and Sally was prepared for the long game.  She noted that mum tended to be more amenable in the mornings, and primed the hairdresser to stand by to act on the spur of the moment.

Sally knows the foibles of all her residents and uses a different approach with each – formal or informal, jokey or serious, gentle or firm – to make them feel most comfortable and secure.  My mum, she noted, liked to pay compliments, often telling Sally that her hair looked nice. So Sally mirrored this, asking if she had always worn her hair as long as it had become?  No, admitted mum, it never used to be like this...  “Wouldn’t you like to get it washed and cut?  I’m sure you’d feel much better.”

But was the hairdresser any good, asked mum?  She would only go to the best. “Well, I wouldn’t recommend her if she was rubbish!”, said Sally, “She’s cut my hair.”  Through light banter, she skilfully planted the seed that having her hair cut was not only a good idea – but mum’s own good idea.

At last it all paid off.  One morning, Sally brought Kate, the hairdresser, to mum’s room.  “Look who’s here”, she said.  “You know you wanted your hair done?  Well, I’ve managed to get her to save a special slot for you; she could do it for you now.”  And, amazingly, mum got up and went without any protest! 

To people who don’t have dementia, this would be no more than a mundane, weekly event.  But for my mum – and for me – it was a major breakthrough. 

The loss of short term memory in dementia makes it extremely hard for carers to adhere to fixed appointments, which a person cannot anticipate or prepare for; it takes flexibility to respond to their needs, instead of trying to make them fit into a routine - while paranoid fears and delusions require special understanding and sensitive treatment. 

It is sad that any positive incident, such as this, is likely to be soon forgotten by the person with dementia and maybe not repeated.  It can seem a thankless task.  

But Sally got a huge sense of achievement from helping mum with this very personal progress; and it meant a great deal to me to know that my mum’s hair (once her crowning glory) was now clean and styled after more than a year of her own neglect – and that Sally had cared enough and taken the trouble to persevere.  These qualities of empathy, patience, and instinctive, practical psychology are what we all hope to find in care for our loved ones.

This feature was first published in the January/February 2013 issue of NAPA Living Life Magazine, under the title 'Haircare: A Daughter's Story'

*Update: mum died in January 2020 at the age of 93.  She had been in care for over eight years; I'll always be grateful to the many staff who looked after her during that time. Low pay and poor working conditions in the sector are a gross injustice to the varied skills and compassion shown by dedicated care workers. Government and society should hold them in far greater esteem.