An Economically Viable Unit

I woke this morning to news of an Alzheimer's Society report that states that over 50% of GPs think that patients with dementia don't get enough support from the NHS, and 67% think those patients don't get enough support from Social Services. (The NHS budget being ring-fenced, while the social care budget - encompassing most of those living with dementia - is not.) 

This is not news at all to anyone living with dementia or their family carers.  But still.  It has made headlines and people are talking - indeed arguing - about it on social media.  And of course money is at the root of it.

In response to a long exchange with someone on Twitter, who argued (in somewhat extreme terms) that the "greater good" of economics is always more important than personal need, here is my dramatic riposte:

INT. NON-DENOMINATIONAL APOLITICAL CELEBRATORY BUILDING - DAY

A function room with podium.  Ambient music.  Taking the podium, the CELEBRANT motions for the music to be lowered, opens a large register, and addresses the audience.  In the front row, a young couple, MAL and TRIX, sits with a baby in arms, an empty reserved seat beside them.

CELEBRANT


Welcome, friends, to this happiest of days!  An occasion of both joy and solemnity. A rite of passage that confirms our place in the community.  Ladies, gentlemen, and those of any other identification, we are gathered here, in the sight of secular state -

A young man, ANDY, bursts in from the back of the auditorium.

ANDY


- Sorry, sorry!  Not too late, am I? Signal failure on the Circle Line -

CELEBRANT


- If you please? Quick as you can.

ANDY hurries to join MAL; takes the seat beside him, out of breath.

CELEBRANT

We are gathered here, in the sight of secular state, to celebrate with (glances at register) Mal and Trix the arrival of a brand new Economically Viable Unit.

A flustered ANDY leads the audience in applause.

CELEBRANT

Would the Genetic Donors of the Unit step forward, please?


MAL and TRIX step up with the swaddled baby.

CELEBRANT

You are the registered Genetic Donors?

MAL/TRIX

We are.

CELEBRANT

Congratulations. You are to be commended for your contribution to society. Do you have your certificates of Economic Viability?

MAL/TRIX

We do.

They proffer two certificates.

CELEBRANT

Thank you.

MAL


It’s all in order -

TRIX


- Verified and sealed.

CELEBRANT 

(to MAL) I see you have a period of two months out of employment in the last ten years?

MAL


It was before the new rules came in... (indicates) 2015: I was made redundant, in the cuts...

CELEBRANT


Redundancy is no excuse; you were evidently deemed unviable at that place of work -

MAL


- Only because my job was phased out. It wasn’t me per se, they didn’t replace me. Efficiency savings, that’s what they said -

CELEBRANT


- Which means you were inefficient.

MAL


Not me personally, no; that role.

TRIX


“Inefficient”’s not “unviable”, is it? Just a little bit surplus to requirements...

CELEBRANT


That is a semantic distinction.

MAL


Yeah, thanks, Trix, I can handle this.

TRIX


Just trying to help...

MAL


(to CELEBRANT) It was 2015! Before the rules came in. You’ve got to take that, by law!

CELEBRANT 

Quite right, sir. Rules are rules. (refers to documents; to TRIX)
 You, however, have reduced Viability Points?

TRIX 

Because of the baby - sorry, "Unit". I took the minimum time off, just the afternoon, but I physically had to be in the hospital because there were complications -

CELEBRANT


- The Unit is not healthy?

TRIX/MAL


No! Yes! She’s healthy! Nothing wrong with her now!


Silence. Tension. Worried looks all round.

TRIX


She is Viable, trust me. At least as a future Genetic Donor and Incubator -

MAL


- Supporting the economy with future tax-payers, increased GDP.

TRIX


I know I’ve got to take a hit on Viability myself, but that’s my choice, don’t take it out on her.

CELEBRANT


Very well. Let us proceed. You have a name?

MAL

Prudence.

TRIX


We’ve always been supporters of government economic policy.

The CELEBRANT raises an eyebrow.

ANDY


(rises in testimony) They have, they have! Praise be!

He jollies the audience along to agree.

CELEBRANT

Surname?

MAL

Goodheart.

TRIX


It’s an old family name. We got a dispensation to keep it -

MAL


- We paid the dispensation fee.

CELEBRANT 

And your sponsor?

ANDY 

That’s me!

He bounds up.

ANDY

Andy Fairweather. At your service.

CELEBRANT


Do you, Andrew Fairweather, undertake sponsorship of this Unit, Prudence Goodheart?

ANDY

I do!

CELEBRANT


Socially, morally, legally, and financially?

ANDY 

(less sure) I do.

CELEBRANT


To be a guarantor, from this day forth, should the said Unit encounter difficulty in meeting approved behaviour or achievement, placing Viability at risk?

ANDY 

... I guess...

CELEBRANT


The terms of the contract have been explained?


ANDY shrugs, uncomfortable.

MAL 

They have, yes. (to ANDY; low) 
I did tell you, when I first asked -

ANDY


- In the pub, when we’d necked ten pints and JD chasers to wet the sprog’s head -

CELEBRANT


- It is all in the small print, Mr Fairweather. You cannot claim to have been mis-sold? Because you had the statutory fourteen days “no quibble” cancellation period.

ANDY


I signed the forms, yeah; but -

MAL


- You’re my best mate, Andy; my Best Man...

TRIX


We’re relying on you. You owe us.

MAL and TRIX eyeball ANDY. A beat.

CELEBRANT

May we proceed?

ANDY


Yeah, OK. It’s cool.

The CELEBRANT takes up the register.

CELEBRANT


You, the registered sponsor, Andrew Fairweather, agree to guarantee the continued Viability of this Unit, throughout its lifetime (or yours, whichever should end sooner); to maintain a healthy lifestyle commensurate with Economic Viability, to fund support of the Unit during any periods of Unviability or to arrange private funding for such at your discretion -

ANDY


- Now, wait a minute. Wait a minute! How long does this “funding” go on for?

TRIX


It’s just a formality -

MAL


- Like “renouncing all evil”. That’s what they said in the old days; no-one took it literally.

TRIX


A kind of insurance policy -

MAL


- An excess, if you like.

TRIX


All being well, she’ll never have to make any claim.

ANDY


All being well? But what if it’s not?  What if - ?

TRIX


- Well then we hope you’d step up to the plate.

MAL


As our best mate.

TRIX


Isn’t that the point?

CELEBRANT

It’s all in the T&Cs, Mr Fairweather. In coming here today, you have entered into the contract.

ANDY


No, hang on, I came to support my mate’s kid. She’s cute. He showed me the photos on his mobile, the night she popped out. All welled up, he was - like when Arsenal won the double; and we’d had a few bevvies. So I was up for it, you know? Thought I’d pay for her Prom or something, maybe chip in for driving lessons or Uni fees, if she gets in, if there’s still a Uni, if I can afford it by then and don’t have kids - sorry, Units - of my own; but a whole lifetime...?

TRIX

We’ll pledge the same for you, when the time comes.

MAL

Quid pro quo.

ANDY


It’s quids I’m worried about...

CELEBRANT


The terms are quite clear. There’s been a multi-million pound cross-platform government campaign.

ANDY


But who takes any notice of that? It’s for old codgers, isn’t it? Losers? Load of blah, blah, blah -

CELEBRANT


- Well maybe you should. You might need to avail yourself of it one day. If you have not paid due attention -

TRIX


- Sorry, do we have to go into all this now? I’m sure we can sort it out. Prudence is getting tired. And we’ve got guests; they’ve come over for the do...

MAL


Cut us some slack here, will you? It’s our first time as donors -

TRIX


- We do want to contribute to the greater good.

MAL 

(re ANDY) And he doesn’t mean to be disrespectful -

TRIX


- It’s just a blip -

MAL

- Nerves -

TRIX


- Immaturity. He’s never had a Unit himself.

ANDY


Who are you calling immature?

MAL


Let’s just get on with it, yeah; get stuck into the buffet? We’ve got handmade Scotch eggs.

ANDY

No, but -

TRIX


- Please, Andy! We can’t do it without you. We need her to be on the Register - or else she doesn’t exist.

ANDY

OK... (to MAL; pointed) 
But we’ll talk later, right? Do a deal?

CELEBRANT


You can make whatever arrangement you like between yourselves, so long as government requirements are met and you claim nothing from the state. You mind your own business, we mind ours.

TRIX

(appeals to ANDY) We’ve only got this room for a one-hour slot; there’s penalties...

ANDY

(to CELEBRANT)
 Just cut to the chase. I could murder a pint.

MAL


Thanks, mate. Appreciate it.

The CELEBRANT refers back to the register.

CELEBRANT


You, the Registered Sponsor, or any Deputy Sponsor you assign by deed of variation to take on your responsibilities in the event of your prior demise or incapacity, agree to notify the authorities at once and without delay of any ongoing and irreversible Unviability - including, but not confined to, persistent vegetative state, quadriplegia, loss of communicative senses, incurable brain injury, genetic or acquired mental defect, or any form of dementia. (proffers register) Sign here.

ANDY


My nan’s got dementia...

TRIX 

Ssshh!

CELEBRANT

Have the authorities been notified?

MAL

It’s a different case, not your remit -

TRIX


- You didn’t hear that, OK? (re ANDY) 
He was confused -

ANDY

- Not “confused”! There’s nothing wrong with my Viability!

MAL


What did you have to say that for?

TRIX


Your nan could be reported.

MAL 

We’ll be here for hours now!

ANDY

No-one touches my nan.

MAL

Forget your nan -

TRIX


- She’s forgotten you.

ANDY and MAL look at her.

TRIX

Sorry. I just mean, your nan’s got nothing to do with it. This is our Prudence’s day.

MAL


Yeah, it’s all about Prudence. We want to take care of our girl.

CELEBRANT

(to ANDY) I could overlook the remark about your relative, as it does not concern anyone here present today.

TRIX

Thank you. (to ANDY)
 That’s good, isn’t it? Understanding...?

MAL

Very civil.

A beat. ANDY nods, not quite sure.

ANDY

Just one more question…

CELEBRANT

(looks at watch) Of course.

ANDY

This notification thing?  When you have to contact the authorities?

CELEBRANT

Yes?

ANDY

Well what actually happens?  When you give notice?

CELEBRANT

Then we come.

ANDY

And do what?

CELEBRANT
Euthanise the Unit.  It’s all in the T&Cs – and the government campaign.  You must know?  That’s the basis of our existence: an Economically Viable Unit.  (proffers register)  Sign here?

BLACKOUT.

Knowing Me, Knowing You

“Does she still recognise you?”  That’s what everyone asks.  Answer: for the moment, to some extent, yes.  My mum does still recognise me.  She knows me by sight.  But what does that phrase really mean?

Think of the many people you “know by sight”: members of your gym class, a cashier in your local supermarket, fellow commuters on your train, regulars at your favourite coffee shop or bar.  You might exchange the odd word, perhaps even know their name and ask after their family, their health, their plans for the weekend. 

But meet them out of context – fully-clothed in the street, instead of lycra-clad in the gym, or on the Tube, not at the till – and you may be thrown.  You know you “know” them, but are not sure where or how.  So you nod and smile, make small talk, or just keep quiet while they speak, in the hope they’ll give you some clue, and maybe it will come back. Maybe it won’t; but through this non-committal pantomime, you will have covered up your mental blank, met social expectations – and the other person need not know you don’t fully remember them.

This is now the level of my relationship with mum.  Yes, she responds to my face; I worry that her sight is declining and still value that.  I know I am lucky she can still speak and hear; we can engage to some degree.  She acts as if she knows me.  But all intimacy is gone.  An only child in my forties, I am no more significant to her than some tolerably pleasant woman she might have nodded to in a café, when she still went shopping in town.

That’s not to say she doesn’t care about her daughter.  Ask her, and she will say she loves her very much.  But that daughter, or that “Ming”, is an abstract notion, an amorphous idea of a young girl.  Mum can’t equate that with the actual middle-aged woman who sits at her bedside. On the table before her will be recent photographs of me that I’ve labelled with my name, in hope of reinforcing the connection.  She will often be fixated with these, remarking on them to me (not always in flattering terms!), and they will be more real and interesting to her than the flesh-and-blood Ming in the room.

Since I realised mum had dementia, I always knew there might come a time when she didn’t know me.  But I thought it would be at a stage where she didn’t know or respond to anything much. I had no idea it could co-exist with relative articulacy and sentience. I never imagined the slow and insidious way that “unknowing” could creep up, or the sophistication of mum’s facility to conceal it.

There have been times in recent years when it has been painfully explicit (as I have detailed in my earlier post, I Don't Know Who You Are); but with hindsight, I can see instances much further back, when the underlying clues were there. Mum loved to give presents, for example, and rarely ventured out without lighting upon something for me: purses, make-up bags, trinkets, jewellery. However, these gifts grew more inappropriate and sometimes downright bizarre. I was puzzled when she pressed on me a lurid silver, pink and mauve bangle of a kind I would never wear - more suited to a pre-teen Britney Spears fan than an adult. 

At the time, I was rather irritated at both the apparent lapse in taste and waste of money – affronted that, in choosing this, she didn’t seem to know me.  Little did I realise that was the literal truth.  She was buying that bracelet for the teenage me in her head, not the real woman I had become, or for a notional daughter whose taste she no longer recalled.

There were other more immediately troubling incidents, when she would suddenly say things like “are your parents alive?” or “when are you going back to Hong Kong?” (I’ve never been and live in London), which might be deemed obvious signs that she thought I was someone else; but if I looked askance or remarked on it, she would instantly cover up and the moment would be past. Sometimes I would catch her looking oddly at me, but she would say nothing. Now I think she was wondering who I was.

For all my life, until dementia took hold, mum and I had been close, with no other immediate family since dad died in 1988.  It is infinitely sad that not only has our current relationship lost its roots, but I find myself questioning the last decade or more, when those roots, it seems, had already begun to wither unseen underground. How much of our intimacy then was a sham, mum just going through the motions, humouring a vaguely familiar woman whom she “must know” because she happens to be in the house?  Could it be that we were living as strangers for pretty much all of that time?

Now that we are entering the last phase of mum’s journey, I have learned that “recognition” is not the same as “knowing”.  You might recognise the cashier at your supermarket till, but do you really know her? Not unless she’s a friend. “Knowing” comes from accumulated memory, the incremental sum of facts and thoughts and feelings about another person that go beyond superficial contact.  My mum still recognises my face; she sometimes knows my name, sometimes knows I’m her daughter and sometimes knows that she loves me, but rarely all those things at once.  I am lucky to have that much.

But I have realised that she no longer knows me in the deeper sense.  As she will sometimes say herself, she “knows nothing about me”: how old I am, where I live, what I’ve done for a living, if I’m married or have children.  She doesn’t know what clothes or perfume I like, what food l enjoy, what matters most to me – even what kind of person I am. 

When I visit her now, she will usually accept my presence without question and speak to me in a way that assumes we are familiar, as if taking up where we left off.  So long as I keep the chat to a minimum or on neutral ground, we have the illusion of intimacy; but if ever I stray to something specific about our lives, it’s all too apparent that mum has no idea what I’m talking about.  I feel a distance between us – a knock on a door that cannot be answered. “Remind me again, who are you in relation to me?”, she said a couple of weeks ago, as I was leaving after a whole afternoon in her company.

The photographs here are just a tiny fraction of the images of our shared lifetime that I carry in my head. Mum would have no idea of the relationship between the first and the last or any in between; she would not be able to recognise them as herself and me.  And I’m afraid none of them is in her head. 

How do I know she doesn’t really know me, if she acts as if she does?  By her lack of interest in, or concern for, the person who visits.  I know she loves her daughter; so if she knew that person was her daughter, she would care.   

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.