Monday, 6 July 2015

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 suggested to me  (in apparent seriousness) that the answer is compulsory mass euthanasia for "childless gaga old people" (their words) to satisfy the "greater good" of economics, here is my dramatic response (and yes, it is satire, before you leap to arms!):


INT. NON-DENOMINATIONAL APOLITICAL CELEBRATORY BUILDING - DAY

The CELEBRANT addresses a gathering. At his/her side, a couple (FATHER and MOTHER, MOTHER and MOTHER, FATHER and FATHER, TRANSGENDER PERSON/S or any state-sanctioned combination of the above; we shall call them “MOTHER” and “FATHER”), with a BABY.

CELEBRANT

Welcome, friends, to this happiest of days! We are gathered here, in the sight of state sanction, to celebrate the arrival of a brand new Economically Viable Unit.

Smiles and a smattering of applause.

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

The COUPLE steps forward.

CELEBRANT
You are the registered Genetic Donors?

MOTHER/FATHER
We are.

CELEBRANT

Do you have your certificates of Economic Viability?

MOTHER/FATHER
We do.


They proffer two certificates. The CELEBRANT peruses them.

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

FATHER

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 -

MOTHER

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

CELEBRANT
(beat; concedes)
Quite right. Rules are rules.
(to MOTHER)
You, however, have reduced Viability Points -

MOTHER

- Because of the baby -
(corrects; hasty)

Sorry, Unit. I took the minimum time off, just the afternoon, but I had to physically be in the hospital because there were complications -

CELEBRANT

- The Unit is not healthy?

MOTHER/FATHER

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


Silence. Tension. Worried looks all round.

MOTHER

Please? She is Viable. At least as a future Genetic Donor and Incubator -

FATHER

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

MOTHER

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

A long beat. The CELEBRANT considers.

CELEBRANT

All right. Let us proceed. You have a name?

FATHER
Prudence.

MOTHER

We’ve always been supporters of government economic policy.

The CELEBRANT raises an eyebrow.

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

CELEBRANT
Very well. Surname?

FATHER
Goodheart.

A look from the CELEBRANT.

MOTHER

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

FATHER

- We paid the dispensation fee.

CELEBRANT
(nods, dismissive)
Sponsors?


Another COUPLE steps forward.

CELEBRANT
(to SPONSORS)
Do you both, jointly and severally, undertake Sponsorship of this Unit, Prudence Goodheart?

SPONSORS
We do.

CELEBRANT

Socially, morally, legally, and financially?

Discomfited looks between them.

SPONSORS
(bit less sure)
We do.

CELEBRANT

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

SPONSOR 1
... I guess so...

The CELEBRANT looks to SPONSOR 2, who hesitates.

CELEBRANT

The terms of the contract have been explained?


SPONSOR 2 shrugs, uncomfortable.

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

MOTHER and FATHER cast a desperate look. A beat.

SPONSOR 2

Yeah, I get it. It’s cool.

The CELEBRANT takes up a register.

CELEBRANT

You, the registered Sponsors, 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 -

SPONSOR 1

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

CELEBRANT

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

SPONSOR 1

I came to support my mate’s kid. She’s cute. I thought I’d pay for her Prom or something, maybe chip in for driving lessons or Uni fees, if I can afford it by then and I don’t have kids - sorry, Units - of my own; but a whole lifetime...?

CELEBRANT

The terms are quite clear. There’s been a multi-million cross-platform government campaign. If you have not familiarised yourself -

SPONSOR 2
- It’s cool.
(to SPONSOR 1; hisses)

Let’s just get on with it and get down the pub, OK?

SPONSOR 1
No, but -

MOTHER

- Please! We can’t do it without you. We need her to be on the Register.

SPONSOR 1
(beat)
OK.
(to FATHER)
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.

FATHER

Go on, please. We’ve only got this building for a one-hour slot; there’s penalties...

SPONSOR 1

Just cut to the chase. I could murder a pint.

CELEBRANT

You, the Registered Sponsors, or any Deputy Sponsor you assign 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, multiple loss of communicative senses, incurable brain injury, genetic mental defect, or any form of dementia.
(proffers register)
Sign here.

SPONSOR 2

My mum’s got dementia...

MOTHER
(mortified)
Ssshh!

CELEBRANT
(a look)
Have the authorities been informed?

SPONSOR 1
(hasty)
It’s a different case, not your remit -

MOTHER

- You didn’t hear that, OK?
(re SPONSOR 2)
She was confused -

SPONSOR 2
(alarmed)
- Not “confused”! There’s nothing wrong with my Viability!

SPONSOR 1

This notification thing? What actually happens? When you give notice?

CELEBRANT
Then we come.

SPONSOR 2
And do what?

CELEBRANT
Euthanise the Unit.
(beat)

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.
(beat)
Sign here?

BLACKOUT.




Tuesday, 3 March 2015

Knowing Me, Knowing You

“Does she still recognise you?”  That’s what everyone asks.  And for the moment, on most visits, the answer is thankfully 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 cafĂ©, 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.