Nomenclature: noun The devising and choosing of names for things, the body or system of names for things, especially in a specialist field.
I find myself puzzled by the choices companies make when naming products for the elderly and infirm. I get that marketing this stuff must be hard, no one wants it, after all. These are the things of need. But in a market economy one must make up one’s mind. Nevertheless, given the implied circumstances of your end user, many of these selections seem odd to me.
First noticed it with toilet frames. Behold, “The Harrier”
I mean, come on. The moment when you must accept that you can’t get up off the toilet without assistance is quite a thing. Do we, when facing this, feel enabled by associations with wild, predatory birds? I’ll let you know when it happens. When I bought my dad’s though it did make me laugh, so if that’s what the folks at NRS healthcare are up to here, reverse psychology, fair play indeed. It is a thing though, once you start looking for it. Exhibit 2, “Buckingham. ”
Same thing, right? I recognise there are throne associations here and the two principal dwellers of the above abode may well be in grateful receipt of these products (although I note no royal warrants on the websites), and the state pays for both, but still…
I appreciate that users of mobility scooters have reclaimed the narrative and take pride in ironic bumper stickers and the like, but these are indoor things. “The toilet’s on the left, mate. Mind out for the The Buckingham.” “Cheers.”
I’m not singling out NRS healthcare either. It’s rife. Exhibit 3– “Drive”
This seems the cruellest of all. They may as well call it sex, or immortality.
Like the bodies of its tenants, the homestead has had enough. This is especially true of the drains, which sometimes pack up altogether and flood back into the house through the toilet, the consequences of which are exactly as you would imagine. Despite being a fastidious neurotic in some regards, “recent events” mean that my prior reservations about dealing with sewage are vanished. You might even say I was into it. Not the thing itself, you understand. I just like that the fear has gone. We might stink but within it one can feel righteous, even redeemed.
The dilemma of what’s worth fixing when you’re hoping things can’t carry on goes from the small – one might, for instance, screw in a lightbulb and wonder whether it will die sooner than anyone it illuminates—to the large. Clearly an overflowing drain is a big-ticket item in the black Friday sale of everything must go (wrong), but do you really want to dig up the patio? Or call the man who can? No. Not today. So, piecemeal drain repairs are now my thing. If I don’t prise up the cover, drop down and get dirty with the garden hose every 12 weeks or so, the drain will buckle. I have a reminder on my phone about this. Even still, sometimes I miss my slot and then, it happens.
When there is blockage I hold an enquiry into what/who the source is. I have access to hard evidence (the impacted knot of excrement, wipes and paper that one must chisel free blindly from the drain like some cursed sculptor). And yet, when I launch the inquisition as to whose reckless self-purification is behind all this, I am reminded of another shocking truth of our household—everyone lies. The three of us are over two hundred years old, and yet we fib about going to the toilet. And more besides.
The web of mostly benign deception was first clear to me when my parents elaborate counter-intelligence operation about which of them eats shortbread came crashing down in the supermarket last summer. Diabetes isn’t even in the Premiership of the Old Man’s ailments, but it’s there, and along with certain other comorbidities isn’t helped by the substitution of “proper” food for biscuits. Plus, if I clean up your sh*t, I should get a say in what you eat, perhaps.
The persistent presence of shortbread despite me never buying it meant of course that someone was. Each blamed the other for the purchase and accused the other of eating it. Then one day I was at the shop with mum and she stuck some in the trolley. I asked who it was for, pointed out that dad was in hospital and she just shrugged and tottered off towards the eggs. I knew then the calamitous truth. They were both eating it. And they were both lying. Chinatown.
So it goes with the drains. “Not me.” “I would never” “The carers throw stuff down there.” The many mad battles that might make up the day are yours to pick, and sometimes my internal CPS lets us all off the hook by assessing that there is nothing to be gained from prosecution and we can let the whole thing drop.
But the drains are the drains. It’s £300 to get it done if I’m not there. And then there is the “shame” (Mother’s words, not mine) of the Dynorod van outside. As though the neighbours were scoffing and judging the inferred behaviour and implied moral dysfunction that might cause a family to, you know, block a drain. Instead of just being amazed that anyone here is still alive and eating solid food. Though I do not share her foibles I know they are felt deeply enough that she cannot be the problem. So, I know whose behind is behind it. But I am so relieved when the culprit makes it to the toilet, let alone on their own, that this is in fact a small price to pay.
Plus, I get to feel hands-on useful, I can picture myself as a blue-collar pragmatist as oppose to an intellectual narcissist. And when one does a thing entirely, one is just the doing of the thing. Freedom. The myth of Sisyphus*. The often-blocked drain. Same deal.
Mum looks on as I hose off my boots. “You had a lot of badges in the scouts,” she muses. Two, actually. Reading and lighting fires. Both matters I still hold dear. “Is there a badge for this?” Aye, mother. I believe so.
I am upstairs on the phone to a solicitor, attempting to reckon and repair the wreckage of my former life. The billable minutes are clicking toward billable hours when the sounds of parental discord rise from below, like the house band striking up a familiar number in some place you can’t believe you still visit. A life you thought you’d left long ago. But no…
The telephones at my folks, like all else here, are far from modern. A botched network of cordless handsets that seldom make it back to the correct cradle, each with a background hiss that makes everything sound like AM radio. Improving this is somewhere on my list of things to do. The solicitor’s voice, which I (in some version of denial) struggle to make sense of on a good day, is relegated even further into my mind as I listen instead, just as I did as a child, to what my parents are squabbling about. In this case , trousers.
Mum’s relationship to ironing could be the subject of a separate essay, but the essence of today’s dispute concerns Dad (who I have never seen iron) asserting that some trousers she has ironed for him (in which he will go nowhere, see no one but her or me, and do nothing but sit down) should have a crease in them. Mum says this cannot be, “you cannot have a crease in cotton trousers.” My father’s answer, which comes at a special volume, several notches higher than the one necessary to get my mum to hear you at all, peels through the house– “I CREATE ONE!”
Given his size and wellness an utterance of this dimension is an achievement. The dying body is, one presumes, preserving these powers for some desperate and definitive address or plea. That it should arise instead from such apparent trivia is but the everyday pathos of domestic life. Something and nothing at the same time.
The creation of which he yells concerns his trouser press, an artefact (now inaccessible upstairs) which speaks to both its owner’s precision, care and vanity as much as to what I assume (given his military experience) must be unwillingness rather than inability to wield an iron.
The more I think about it, the more it becomes clear that a further examination of the role of ironing in life here is necessary. Mum can barely lift the iron, the board is taller than she is now and yet, unless physically restrained she will haul these implements into position and iron something. Singing as she does so, sometimes. Whether you see this as a reflex of servitude or a state of studied and deserved grace will reflect perhaps some political position (I am of the latter party), but again, more on this to follow. I only hope that you can bear the tension.
As all this drifts through my mind, my solicitor takes pity and offers to end the call, I concur. I think on my father’s sartorial and presentational concerns, on quite how long it will take he and I sometimes to get him “ready” for not much at all. When we do go out, the stakes rise, the raiment laid out and double-checked the night before. A trip to the doctors, a funeral, a pub with good food, each rendered like a state occasion. I have come to find this a helpful way to think about it. I serve the last royals of a failing state. Ceremonies are all we have left before the people (in this case death, but also taxes) seize the palace. Here we go. Paris is burning.**
In the morning rituals the angle of the sun reveals plumes of perished flesh erupting from his shins as I pull up his trousers. He is crumbling, monumental. We are told that dust is dead skin, but it’s not until I see this that the constant transaction between who we are, what we’re made of and where we are going becomes quite so clear. On one level there is revulsion, on another beauty. If the light is right you can see the particles falling and rising in the air and catch the sublime in it. All my life I have been told I think too much but at times like this it seems to save me. I wonder if he sometimes sees the same, I believe so. Occasionally I think the only difference between us is that I have found a way to get these things out, to express them, even if it is to strangers. I wish we talked more. Instead I pull the unsaid about me like a blanket. I have no idea how I would look without it now, or how to put it down.
*Not quite true. Once, you were the taken-care-of.
** I would commend anyone interested in dressing to the seminal documentary of the same name:
The previous post put me in mind of the last time the old man went upstairs, so I thought I might relay how that, and he, went down.
Not long after a hospital stay, the council carers seemed to have a handle on things so I went out for the evening to a friend’s. I hadn’t been there long when mum rang and told me to come home, “He’s fallen over.”
Experience has removed the questions “why?” and “how?” from my instinctive vocabulary since: a) the quantum, parallel universe of the elderly mind to that of the younger observer can result in a powerful disconnect that does no one any good — failure to communicate, if you will — also, b) these things take time. Sometimes one must simply, act, accept, move on. This is the Tao of the tail-enders, the octogenarian ‘om’. So home I go.
What confronts me indoors resembles a kind of tableau – you may be familiar with the work of the artist Jeff Wall or the Clevelys end of Blackpool illuminations, you may not — either way, that kind of thing. A graphic set piece, dense with symbols and players.
Dad is sprawled on the landing, comfortable he says, but somewhat crazed-looking. The man from next door, a gallant figure who, with his wife, provide a neighborly safety net I would not want to work without, is scrubbing blood off the stair carpet.
Tonight’s carer, a stranger to us, as is often the way, is shuffling about near my dad on the phone to her supervisors. “I can’t pick him up and I can’t go upstairs behind him and he just… fell.” she says, somewhat coldly. But I know she is right. If you have to lift a person, you must come in twos.
Mum meanwhile is on the phone to 111, the non-urgent emergency service. She’s pretty deaf, so I take the phone off her. Dad will bleed in a stiff breeze, so I know things likely aren’t quite as bad as they look.
We are on hold. I notice that the bloody stair is the same one our long-dead cat would claw at years ago. My dad had to take her to the vets to be put down and spoke then of his sense of foreseeing his own end approaching as he did so. Now here we are, ish. Same staircase, different demise.
Me and the neighbour get dad to his feet and into his bedroom for what turns out to be the last time. The neighbor goes home, cold-but-correct carer goes on to their next call until it’s just me and the old man and the voice on the phone.
The operator asks questions which I relay to my father. He answers with a series of untruths he think will keep him out of hospital. Sometimes I think he’s lost the plot, but when it comes to it he knows and can still master the game.
Now, you can intercede in this stuff and have an ambulance come (which can be hours sometimes, if they’re not on a blue light) or you can relay the self-effacing fibs that belie the severity of the situation, and spin the wheel at home. I choose the latter. He deserves a break, he seems OK, ish. And I don’t want to wait around anymore than he does. Besides if things get worse, sometimes worse is what you wish for. So we reassure the earthly powers we need no intervention tonight and consign ourselves to forces unknown.
In the morning he feels better, but it will be the last time he comes upstairs, sleeps in his bedroom or takes a shower at home. As I shepherd him down the wooden hill with the morning carer I step over the bloody cat step and wonder when my time will come. It’s a heriditary thing morbidity, in every conceivable sense.
I am trying to remember when it became normal here for someone to be naked. It wasn’t like there was a meeting. One day, and this must have been back when dad could get upstairs, nudity became unremarkable. It happened on the landing.
The landing has long been the main intersection of domestic life. Like all crossroads it has known busy periods — when we were kids — and quieter moments. My return, itself sparked by a distant collision of sorts, has bought fresh traffic to this neglected junction.
For a time my needs ran contrary to my father’s*, who, like a slow-moving vehicle executing some precise manoeuvre would spend hours in the bathroom while we, the lesser traffic, could merely fume and queue. Now his needs outweigh his worries about his hairstyle**, and it is from this dynamic that the unbridled nudity (as oppose to the everyday nudity) began.
Getting to the bathroom ahead of him had become a daily mission, and in what seemed to me an attempt to thwart this he would emerge naked sometimes from his bedroom, just as I was closing on my objective (the bathroom), shuffle in before me and close the door. And that would be that. Any plans for ablution on hold, sometimes for over an hour.
The nudity acted as a kind of rebuttal. A technique. You don’t really want to argue with a naked person. I once confronted*** a burglar who could probably have killed me, when I was naked, and they fled, so I am thinking this is true.
Anyway, those were the good old days (and one of the instructive aspects of living with folk in physical decline is that you wake up to what a movable feast our idea of what a pleasent memory can be — today’s anger becomes tomorrow’s sepia dream). One morning he pulled me up on the landing and started talking about something while naked, this was new. Alzheimer attenae ever-twitching I was moved to ask, “You do realise you’re naked?” He just looked at me like I was an idiot, convincingly so. And from then on, naked was the new normal.
We’ve come along way since then, although now upstairs is off limits, we move hardly at all, but a lot of this is naked. I mean I like it****, it’s progressive. Besides, the stuff inside my father forces itself out so often that I now take a certain pride in keeping his nude and blotchy mosaic of flesh in good condition, like polishing an old car. It doesn’t matter if you don’t move it, so long as it shines.
* Mum is usually up first, this has always been the way. I am a loiterer, like my old man, hence the congestion.
** One of the many small sadnesses that accompany old age… seeing someone meticulous about their apperance gradually resign their values, and then give up altogether. Keeping them tidy then becomes a kind of tribute act. And there’s nothing wrong with those.
When I get in there are sounds of confusion from the living room. The house is like an app, you can swipe left when you come through the front door, and get yourself together in the kitchen, or turn right and face the facts. I make a right…
What strikes me first is that Dad is at the far side of the lounge from where he sits. I’m not sure I’ve seen him down this end of the room since the late ’90’s. What’s also noticeable is that he is on his hands and knees, apparently bowing to the television. He repeats a phrase, faintly. “I don’t know… I don’t know…” One hears a lot about patriarchy these days, but I am mostly sweeping out the ashes of such.
For a fraction of a moment I think maybe the oft discussed and heavily guarded marbles of the old man’s mind have finally departed. It is such an odd sight that I wonder also if he is somehow possessed, even if I don’t, ordinarily, believe is such things. Most days it would take something supernatural just to get him out of his chair.
Mum looks despairing. And then she says in the special hiss she believes renders her inaudible to whoever she’s discussing, “He’s on the phone to the TV people.” Suddenly, everything is clear. He is bent double trying to fix the satellite receiver and has a phone to his ear.
I take the phone from him and help him to his feet. The person on the line is trying to sell him an expanded TV package. I explain that he is no longer listening, that I am his son.
“Put Daddy back on the phone,” says the person in the call centre. I freeze at this. My Dad was and never has been known as “Daddy,” and we are not about to start now.
As I ferry dad back to his seat, I ascertain, in short order, what has gone down (and it is in these kinds of mindless crises that I really come into my own). With mum’s deafness it is essential that the TV has subtitles or it has to be on at a volume that could destroy a passing bird. As it is, it is often so loud they should be in hi-viz jackets. Anyway, the subtitles went off and the old man has had to call the service provider to turn them back on. Somehow this has a) not been accomplished and b) evolved into an attempt to make him pay even more for watching television.
I press the buttons that reinstate the subtitles. I have done this before, I will do it again. It’s part of the elderly care territory. You become their short-term memory. A portable hard drive. Meanwhile: “Where is Daddy?” Please don’t say, ‘Daddy’, I ask. “Daddy wants the expanded package” insists the call centre caller.
“I’m an idiot,” says Dad, ruefully. I promise him he’s not. He seems unconvinced. “Turn this up!” yells mum, even though the subtitles are back on. It’s an advert. “Where is Daddy!?” He’s really going for it now, this desperate, distant salesman. “Daddy doesn’t want to talk to you anymore,” I say. And Daddy nods. I live in part for these small moments of consensus. And as the television yells and rumbles, spelling out dialogue that’s already old, I hang up the phone.
We live in a kind of prescription stash house. The amount of drugs here is insane. If I open a cupboard or a drawer or even an envelope in the spirit of inquiry as to what might have remained in the 30 years since I left home, the answer, mostly, is that whatever I remembered has vanished and been replaced by drugs*.
You might ask what it matters, that a 48-year-old man wondering if his bath toys had survived instead finds a drawer filled with out-of-date Senokot. Yet somehow it does. The costs to the NHS, the cursed ubiquity of it all, the fact I am too frail (and maybe wise) myself to try to get high, or even to sleep, on any of this at all**.
The root of all the medicine is my father***. Much of it dates from before he was really ill, as though he were prepping for this eventuality. And yet his every step further into the arena of the unwell is matched by a new delivery of drugs from the chemist. None of the old stuff was ever needed because new stuff is always on its way.
The old drugs cannot be recycled and my father’s ability to generate and contract fresh ailments and conditions is an act of such sustained creativity that in any other walk of life (if we can speak of dying that way) his work would be in a museum. It’s a microcosm of consumer capitalism. Somewhere folk are suffering for the lack of this and we can’t move for it, nor do we require it. I take it upon myself (like I have much else to do) to make a change.
There is a kind of silence the old man can generate which has become far more powerful than an outright ‘no,’ and it is this that meets me if I ask if we can throw ‘this’ out. ‘This’ can be anything, by the way. Even an old tissue. In the case of the drugs the silence is especially forthright. So I just stop asking at all. Out it goes, inhalers, expectorants, antibiotics, analgesics. For a while I google things to see if they are, I don’t know, noteworthy, fatal or fun. Nothing is. So out it goes, in the bin or back to the chemist till all we have is all we are prescribed.
There is a moment of something like relief when it appears to be over. But I am nagged by a powerful sense that I have missed something, that there must be more. Fans of 70’s movies will recall Gene Hackman’s Popeye Doyle experiencing a similar sensation with a car he knows is full of heroin in the French Connection.
And if there’s one really terrible lesson we can learn from movies it’s that our instincts are never wrong. Thus I am guided by the spirit of Hackman to my father’s wardrobe and there is it, pharmo-Narnia, the Tamazepam Aslan, at the back, behind a veil of blazers a micro-motherlode of prescription pharmaceuticals that could keep an Irvine Welsh character occupied for months.
And yet, this feels like a transgression. This is, after all, his secret stash. And I am only acting on the stated discomfort of others and myself about the drugs we knew of. And so like the good-ish son and first-rate schemer I am, I take a blister pack of pristine tranquilizers and call it day.
*Something similar has happened in my mind, but that’s another story.
**Not strictly true, I will take sleeping tablets sometimes. I keep them around anyway, can you see the pattern here?
*** Mum (89) is presently sustained by a single aspirin a day.
Mum is off to bed. One less thing to worry about. When they are asleep, the place is calm, quiet, beyond the arrhythmic thud and thump of the heating. You can do what you like then. Except I tend to fall asleep as well. First though, we must gather mum’s stuff before she climbs the stairs.
Unsupervised at this hour she will load herself up with things on every limb: books, a handbag (worn around the neck), tissues, spectacles, glass of milk. It is unwatchable, her tottering upwards, laden with goods. The disaster is implicit in the exercise – like the kid’s game Buck a Roo – it must eventually go wrong.
So, I try and be there for the ascensions, until the great ascension*. I have learned not to question why certain things are deemed necessary for a good night’s sleep – the heavy handbag that is her equivalent of the case with the nuclear codes the president has always nearby – but tonight she calls for something that really blows my mind.
“Where is Peter?” she asks. One is ever vigilant for dementia so this name, not a pet or a person I know of, is troubling as she trundles off (I am carrying all her stuff at this point and so, for once, less able) and comes back toting an old doll’s head from who knows where.
Peter it turns out was her childhood toy, beloved since the late 1920’s, and his severed countenance is deployed still in times of trouble for support and comfort. I’ve been back here six months and spent eighteen straight years living with the woman, but I have never seen or heard of Peter before. Yet here he is, dark eyed and ghostly pale. My mother holds him out, as though playing Hamlet.
“I am like him.” She announces. She tilts Peter’s porcelain head and his eyelids fall. “I lie back, I close my eyes.” Then she climbs the stairs, Peter’s head under her arm like a cartoon spectre. I am touched, too. Upset, I suppose. You get ambushed by the feelings set otherwise aside. When I see these old folks as kids, and sometimes it shines through so clearly, I wonder what it says about who we are underneath all this accumulated and invisible time and expectation? Stretched and desiccated babies baffled by a race we never meant to run.
Thanks for coming to the site. This is where I write about looking after my parents. It’s anonymous to protect their privacy, that of any healthcare professionals and local authority personnel who might get mentioned, and too a lesser degree myself.
The best writing comes from some kind of truth, and it’s easier to share some of these things if I don’t have to worry about discussing it over dinner with anyone, even if I have to feed that person with a spoon.
So for the sake of the aforementioned and to ensure a steady stream of detailed and confessional tales from the TENA pant* tabernacle, please don’t speculate on here as to where or who it’s coming from. Trust me, you’ve never heard of us.
I thought I would set up the site since people reacted strongly to the stories I shared verbally about caring for mum and dad, and I had been noting down a lot of what happened, since that’s what I do. With luck some things I’ve written will appear in the media soon so I will add them to the site as and when. More importantly I hope something here helps you with something in your life when and if it should start to look like ours. There’s a lot of it about, and more to follow.
The broad strokes are that my folks are in their late 80’s, I’m nearly 50 and I look after them in part because I had to move back in with them when I made a giant mess of my life. That’s the main reluctance, as oppose to the actual, natural reluctance, which of course intersects with the love, sometimes, and its affiliate and opposite emotions, which is sort of what this is about. We’re here because we have to be. How we feel about it is another matter.