Untold Stories
Even had we been told that ECT would lead ultimately to a failure of memory in the long term I am not sure, given the circumstances, that we would have done anything differently. Unreachable in her despair Mam was unliveable with, her condition inspiring such strain in Dad that his health was as much a factor as hers.
In the end it was her disease that killed him long before it killed her, the strain of daily visiting over weeks and months and the fifty-mile drive they involved fetching on a heart attack. So, though licensing ECT may have been the wrong thing to do, I feel no remorse, and still think, as I did in that cinema in Oxford Street, when the controversy periodically surfaces that the opponents of ECT don’t really know the half of it.
There are comic moments. After one visit I tell Miss Shepherd that Mam’s memory is failing her and that I am not sure she knows who I am.
‘Well, it’s not surprising she doesn’t remember you,’ said Gloucester Crescent’s resident moralist, ‘she doesn’t see you very often.’
A more common attempt at consolation was to say that, though her memory for the recent past might be failing, it would be compensated for by a more detailed recall of the remoter past. This proves not to be the case. As Mam slowly forgets my father so she forgets her mother and her two sisters, and even eventually who she is herself; the present goes and the past with it.
‘Do you remember Dad?’ I ask her.
‘Oh yes. I remember your Dad.’
‘What was he like?’
‘Your Dad? Oh well,’ and she studies a bit, ‘well, he was a love.’
‘And do you know who I am?’
‘You’re a love too,’ and she laughs.
‘But who am I?’
‘Well, now then … you’re my son, aren’t you?’
‘Yes. And what’s my name?’
‘Oh, I don’t know that,’ and she laughs again, as if this isn’t a piece of information she could be reasonably expected to have, and moreover isn’t in the least distressed not to have. She isn’t seemingly distressed by anything much nowadays, even by the hip she broke sometime in 1986 and which has never healed properly. It’s painful when she moves and I see her wince, but her memory span is so short it mitigates the discomfort and I’m not sure if without memory there can be such a thing as continuous pain. Sitting with her in the large hot bedroom overlooking the bay at Weston-super-Mare, I occupy myself with such vaguely philosophical speculations, watching as she smoothes the sheet with her thin, blue-veined hands, smoothing and stretching, stretching and smoothing all the weary afternoon.
She has long since ceased to wear her own clothes, which probably wouldn’t fit her anyway since she’s now so much thinner. These days she’s kitted out from a pool of frocks and cardigans that the home must have accumulated and put into anything that’s more or less her size.
To begin with we, or rather my brother, protest about this and insist that one of her original frocks be found, so long as it isn’t actually adorning one of the other old ladies, which as often as not it is. In which case it’s promised for ‘next time’ or ‘when we change her’. Still, as Gordon argues, in a world where so much must seem strange, to be wearing a familiar frock may be a comfort.
As time goes on, though, this argument carries less weight. When she can’t recognise her own children and doesn’t even know what children are, how can she recall ‘the little coatee I got at Richard Shops’ all those years ago? Sometimes I’m not sure she’s in her own glasses, and maybe her teeth would be a problem if they ever put them in; but then her mouth may have shrunk anyway, so perhaps like her clothes they don’t fit either.
So when I go in I’m no longer surprised to find her sitting there in a fluorescent-orange cardigan she would in happier days have unhesitatingly labelled ‘common’; or that the skirt she has hitched well above her scrawny knees is Tricel or Crimplene or some tufted material she would-n’t have been seen dead in.
And it isn’t only the cardigan and the frock that aren’t hers. She has even acquired someone else’s name. The nurses, who are not really nurses but just jolly girls who don’t mind this kind of job, aren’t over-particular about names and call her Lily.
‘Hello, Lily, how are we today? Let’s lift you up, Lily. You’re falling right over.’
‘Her name’s Lilian,’ I venture.
‘I know,’ says the ministering angel, propping her back up, ‘only we call her Lily, don’t we, Lily? Give us a kiss.’ And vacantly Mam smiles and gives her a kiss.
‘You know what a kiss is, don’t you, Lily?’
And she does, just, but it will be the next thing to go.
‘She’s with my brother,’ I say if anyone asks who knew her in the village. ‘It’s down in Bristol.’
To admit she’s in a home in Weston-super-Mare is itself a confession of failure, with the nowhereness of Weston a part of it, an acknowledgement that we have run out of patience, washed our hands of her and put her away in Weston, as it might be Reykjavik or Archangel, it seems so remote.
And if I do specify the location I’ll often add, ‘Except she’s not there, you know. She’s not anywhere,’ and I explain that all her faculties have gone. It’s then that people nod understandingly and say ‘Alzheimer’s’.
‘Well,’ I say, ‘she’s failing.’ Or has failed, as she now can scarcely speak. But whether it’s Alzheimer’s I don’t know, as she’s never had a brain scan that would prove the point … though why is the point worth proving except for statistical purposes? But since for twenty-five years or so she’s been in and out of institutions – hospitals, mental hospitals and homes – it wouldn’t surprise me if her blankness now is partly the result and that she has become institutionalised. This would explain the decay of her powers of speech and her inability to walk just as plausibly as any specific disease.
But my vagueness (about her vagueness) has another, less creditable side. I’m reluctant to ascribe her situation to Alzheimer’s because, without it being exactly modish or fashionable, it is a disease or a condition that gets a good deal of coverage as one of the scourges of our time. People are frightened of it; they make jokes about it; it’s mainstream stuff. I don’t mean that I’d prefer her to be suffering from, living with, dying from something a bit more exclusive, it’s just that I wouldn’t want anyone to think that by putting her situation down to Alzheimer’s I was in any way jumping on a bandwagon.
A diagnosis, which is, essentially, a naming, puts someone in a category. Neither Mam nor Dad was ever a big joiner, ‘not being able to mix’ both their affliction and their boast. So now, faced with a choice of enrolling her in the ranks of those diagnosed and named as having Alzheimer’s, I still prefer to keep my mother separate, so that she can die as she has lived, keeping herself to herself.
Except, of course, she does not die. Her bed is in a high bay-windowed room on the first floor, the house one of a row of granite mansions strung like battlements along the side of the hill that overlooks the bay. The prospect from the window is vast, taking in the town, the sands and the distant sea, and some hills beyond that I take to be Wales. The room, though, ignores the view, the plastic-covered chairs arranged in a row with their backs to the window so as to catch all of the place’s diminishing life.
Here live four women, each with a high cream-painted hospital bed, a chair, a washbasin and a locker. All the women are incontinent and all are catheterised, a bottle of faint piss tilted under each chair. Cloyingly warm, the room has no particular smell (no smell of urine I suppose I mean), the air refreshed by frequent blasts of Woodland Glade or Ocean Breeze. That if anyone chose to open a window there could be a proper ocean breeze goes by the way.
On the top of the lockers are family snaps: the lurid single photographs of children, or rather grandchildren, of the sort that are routinely taken at primary school; photos of family outings, dead husbands, dead sons. ‘Happier days’. There are birthday cards kept long after the big day: ‘To the Best Mum in the World’, ‘To Nan from Toni,
Michelle and little Christopher’.
With its broad landings and cavernous rooms, it’s hard to think that this gaunt pile in Weston-super-Mare can ever have been a private house or imagine the family that lived in it. Everywhere is carpeted with the predominant colours orange and brown, and with the staircase wide enough to accommodate a chair lift.
‘I’ve been on that thing,’ Mam said in her early days here, then adding contemptuously, ‘it’s nowt.’ It was as if it were the Big Dipper.
None of the residents are black yet, though there are one or two black nurses and several cleaners. When in due course blacks take their place among the patients here and in similar establishments it will, I suppose, signal a sort of victory, though hardly one to be rejoiced over as the price of it is a common enslavement to age and infirmity.
The residents are almost entirely women, the only man a voice from a distant room where he is presumably bedfast. I see a handyman occasionally, standing on a ladder changing light bulbs or dismantling a bed. He seldom speaks. There is the clash of a kitchen somewhere in the back, two trolleys outside a door, waiting.
The staff are young mainly and seldom stay long, the only attendant I recognise from the ten years or so I have been coming here now old herself. Doing less and less and with her help increasingly superfluous, she has gradually declined until now she is more nursed than nursing. Shedding her overall and wrapover pinny, she has taken her place among the rest, sitting in the bay window dozing and not looking at the view.
The shallow waves lap over the sands and at night ropes of lights prick out the promenade.
I sit by my mother’s bed. She does not look at me or look at all, her eyes open but her gaze dull and unattached. I note her wild eyebrows, the coated tongue, the long lobes of her ears and the downy, crimped and slightly stained skin of her upper lip. A dispassionate inventory this, taken holding her slack hand, which I occasionally bend down and kiss.
She speaks infrequently, and when she does speak it makes less sense, with her words gradually becoming a babble. Second childhood in my mother’s case is not just a phrase but a proper description of how skills learned in the first years of her life are gradually unlearned at its end and in reverse order: speech has come out of babble and now reverts to it.
A family drives onto the beach, lets out a romping dog, then arranges the canvas chairs. A man and a child set off barefooted across the sands to the distant sea, as on the promenade an ice-cream van sounds its glutinous unfinished song.
I have talked to only one of the women here besides Mam … Hilda, who in the days when she could talk told me she came from Darwen. Now, not knowing where she is, did she realise she had ended up in this unentrancing corner of Somerset she would be as puzzled as my mother whose own odyssey began in Leeds.
The turnover of residents is quite rapid since whoever is quartered in this room is generally in the later stages of dementia. But that is not what they die of. None of these lost women can feed herself and to feed them properly, to spoon in sufficient mince and mashed carrot topped off with rhubarb and custard to keep them going, demands the personal attention of a helper, in effect one helper per person. Lacking such one-to-one care, these helpless creatures slowly and quite respectably starve to death.
This is not something anybody acknowledges, not the matron or the relatives (if, as is rare, they visit), and not the doctor who makes out the death certificates. But it is so.
And if Mam has survived as long as she has it is because, though she can no longer feed herself, she nevertheless is anxious to eat; her appetite remains good and so she is easy (and satisfying) to feed. I spoon in the mince and carrot, catching the bits that dribble down her chin and letting her lick the spoon.
‘Joined the clean plate club, Lily,’ says the girl who is feeding Hilda, her neighbour. ‘Aren’t you a good girl?’
Hilda, grim, small-eyed and with a little curved nose and a face like a finch, is not a good girl, turning her head when the spoon approaches, keeping her teeth clamped shut with the spoon tapping to get in.
‘Knock, knock,’ says the girl.
Somewhere a phone rings. So, leaving the mince, the girl goes to answer it and does not come back. Ten minutes later comes a different girl who clears away the cold mince and carrot and substitutes rhubarb crumble.
While Mam polishes off hers, Hilda remains obdurate, beak closed.
‘Don’t want your sweet, Hilda?’
Hilda doesn’t and it is left congealing on the tray while tea in lidded plastic beakers is taken round, which goes untouched also. So another mealtime passes and Hilda is quite caringly and with no malice or cruelty at all pushed one step nearer the grave.
Whose fault is it?
Her own, a little. Her relatives, if she has relatives. And the staff ’s, of course. But whereas a newspaper might make a horror story out of it, I can’t.
Demented or not, if Hilda were a child there would be a story to tell and blame attaching. But Hilda is at the end of her life not the beginning. Even so, were she a Nobel Prize winner, or not a widow from Darwen but the last survivor of Bloomsbury, yes, then an effort might be made. As it is she is gradually slipping away, which is what this place is for.
The water creeps over the sands.
Coming back to London on the train, I am relieved that I have done my perfunctory duty and need not come again for a fortnight or three weeks; I am still uneasy, though, and would be however often I were to visit.
That there is something not right around homes for the elderly is evident in the language associated with them: it’s swampy, terms do not quite fit and categories start to slip. A home is not a home but neither is it a hospital nor yet a hotel. What do we call the old people who live (and die) there? Are they residents? Patients? Inmates? No word altogether suits. And who looks after them? Nurses? Not really since very few of them are qualified. As Mam herself pointed out early in her residency:
‘They’re not nurses, these. Most of them are just lasses.’
And not knowing what to call them makes getting hold of one difficult, not least for the residents. In a hospital it would be ‘Nurse!’. Here it tends to be ‘Hello? Hello?’, which said to nobody in particular and sometimes to an empty room already sounds deranged. Of course, calling them by name could be the answer, but though the staff all wear their name tags, names are what these lost women are not good at, not being good at names one of the things that has brought them here in the first place. And what do I call them, a visitor? Even if I cared for the word caring, ‘Carer!’ is not a word you can call down a corridor.
As it is, and feeling like one of those old-fashioned gentlemen who call every policeman ‘Officer’, I settle for ‘Nurse’, remembering at the same time Mrs Catchpole, Alan Bates’s mother-in-law, who, incarcerated in the geriatric ward at the Royal Free, remarked bitterly of one such whom she called ‘Bouncing Betty’: ‘She’s not as highly qualified as she makes out. And she has very hard hands.’
These blurred classifications – a home that is not a home, a nurse who is not a nurse – arise because strictly speaking the people in homes are not ill; it is not sickness that has brought them here so much as incurable incompetence. They are not dying; they are just incapable of living, though capable of being long-lived nevertheless. My mother lives like this for fifteen years.
Now it is a year later or maybe two years. Nothing has changed except that there are new faces in the three other beds, all of them registering differing degrees of vacancy. None of them can talk, though one of them can shout.
I sit in the upstairs room and hold my mother’s hand, the skin now just a translucent sheath for the bones, and a hand anyone who comes into the room is free to take and hold as Mam will not mind or even notice. And though there will be no replies forthcoming, having been told it is therapeutic I embark on a conversation.
‘Gordon will have been, I expect.
‘Set up with their new baby. Grandparents now. You’re a great-grandmo
ther. Takes after Ian, Rita says. Fair.
‘They’re going in for a new fridge apparently. One of those jumbo jobs.’
I have written conversations like this to point up the diminutive stature of our concerns and their persistence even into the jaws of death. But this conversation I now have to fabricate for real is as desultory and depressing as any of my fictions.
‘They tell you to talk,’ I had once written of a visitor talking to someone unconscious.
‘I think it’s got past that stage,’ says the nurse.
And so it seems with Mam, as nothing I ever say provokes a response: no smile; no turn of the head even.
The staff do it differently; make a good deal more noise than I do for a start, and one of the maids now erupts into the room and seizes Mam’s hand, stroking her face and kissing her lavishly.
‘Isn’t she a love!
‘Aren’t you a love!
‘Aren’t we pretty this morning!
‘Who’s going to give me a kiss?’
The dialogue makes me wince and the delivery of it seems so much bad acting better directed at a parrot or a Pekinese. But, irritatingly, Mam seems to enjoy it, this grotesque performance eliciting far more of a response than is achieved by my less condescending and altogether more tasteful contribution.
Mam’s face twitches into a parody of a smile, her mouth opens in what she must think is a laugh and she waves her hand feebly in appreciation, all going to show, in my view, that taste and discrimination have gone along with everything else.
But then taste has always been my handicap, and so here when in this sponged and squeegeed bedroom with an audience of indifferent old women I do not care to unbend, call my mother ‘chick’, fetch my face close to hers and tell her or shout at her how much I love her and how we all love her and what a treasure she is.
Instead, smiling sadly, I lightly stroke her limp hand, so ungarish my display of affection I might be the curate, not the son.
The nurses (or whatever) have more sense. They know they are in a ‘Carry On’ film. I am playing it like it’s Brief Encounter.