Can You Ask Your Neighbour to Wipe Your Bum?
(And Who Did You Think You Were Anyway - Keith Richards?)
“Want a lift to our interview?“
“No, I’ll walk, thanks”.
I’m meeting Cassie. She’s recently retired from her job as a hospital social worker. There, she took part in hospital discharge meetings, as part of a team making decisions about capacity and right to return home for elders who’ve been hospitalised (usually after a fall or an illness). She also sat on deprivation of liberty (DOLS) assessments, working mostly with older people with dementia or physical issues.
I ask her what’s the main issue in the job, and she laughs - it’s an easy one to answer.
“So many people say - ‘I never thought this would happen’ and they’ve not made any preparatory plans - they’ve totally avoided the issue of ageing and the inevitable. They’ve been in denial and held on to the illusion that things would keep going forever as they have been up to now”.
“Then, a sudden change happens: an illness, a broken hip - and it comes as a shock. Too many people are not mentally prepared for the fact that one day, going upstairs, doing the shopping, having a bath, might become a problem”.
I nod. Oh yeah. The avoid and deny tactic. Even the guy above (King Canute) knew that time can’t be stopped, but somehow …
My friends and I have all been through this situation a few times now, with older relatives. We’re surprised when their health deteriorates, and so are they.
“I don’t know what’s the matter with me, I keep getting colds. I never used to get ill!” someone of 85 will announce indignantly. “Are you taking your vitamins and probiotics?” we ask, as though these were magical potions capable of alchemical effects.
My experiences with seniors has also made me aware that most people don't realise that things aren’t always their decision. A hospital has a duty of care and won’t simply release you back home if you’re assessed as lacking capacity or as being in need of support and care. You can be legally deprived of your liberty for your own safety. A team with doctors, social worker, occupational therapist and nursing staff make close and careful assessments before discharging anyone, and ‘care packages’ get put into place.
But very few people seem to think ahead about this.
Which is weird. Because, how many people do you know who have lived fit as fiddles and fully autonomous until, one peaceful evening sometime in their 80s, they go to bed and die in their sleep? No? Me neither. It’s rare. What’s far more common is a last year (usually more) of life that is marked by repeated falls, hospitalisations, lingering illnesses, intensification of longtime conditions.
A Uk Gov’t public health report tells us that:-
there were 817,714 hospital admissions during the last year of life for the 341,621 people aged 75 years and older who died in 2017 (69% of all deaths)
81% of people aged 75 years and older had at least one hospital admission in their last year of life and 96% of these people had at least one emergency admission
That’s just the final year of life; generally, there’s 1-5 years before death that are marked by disability and hospital visits.
Life and death aren’t like a light-switch. It’s those sodding binaries again: alive or dead.
Life and death aren’t like a light-switch. It’s those sodding binaries again: alive or dead. We forget about dying - the process of it, the time it takes. Much longer, for most of us, than the 40 weeks it took us to form and be born.
Back to Cassie. I have to ask -
“What’s the daftest thing you’ve heard or seen?”
She grins -
“Something I heard a lot - people who looked at me and used to say - ‘Don't get old’ ”
“Right. As if it’s an unexpected or unusual - or avoidable - event”.
Cassie frowns:
“There’s a lack of preparation for ageing. It’s a big job, getting older”.
And problems compound, she tells me, because,
“When you get a huge blow to health, the last thing you want is to leave a home that you loved”.
But yeah, you can find yourself in hospital, with a great home waiting for you - that you can no longer manage to rest, eat, bathe or toilet in.
Cassie is thoughtful -
“People who’ve lived a long time with chronic illness or disability are often better prepared, more realistic - they understand. I saw a client with MS. She had carers morning and night to help her wash, dress, get in and out of bed and bathroom. But during the day, she went out and about in her wheelchair, lived a full life. She coped better than a lot of people who’ve always been healthy - they often think their life’s over when they break their hip and get their first walking frame. People often give up, go into invalid mode”.
“Mmm, seen that, too - there’s often pride and shame involved. Ego. People hide indoors”.
She nods.
“What other common things have you seen?”
“Well, all those cases where the husband or wife had done everything and left the partner unequipped for daily life”.
I’m nodding and laughing at a memory here -
“I’ve seen this, yes! A family house with electric window blinds that only one person knew how to operate - and he would never show anyone else. Some kind of power thing. When he died, those blinds stayed up till the house was sold (apart from the two that were stuck closed, and good luck to the new owners, eh?)”
Cassie smiles grimly. “It’s common”.
Widowed men who can’t cook, women who can't change a fuse or turn a stopcock off.
(Seems like an appropriate moment to say, fuck all binaries and most especially fuck gender binaries. Those little bits of learned helplessness won’t be so cute one day).
I ask,
“More?”
This is kind of horrible, but we need to think about it and not avoid it. I’m getting older (so are you, by the way) and I’m keen to pick up a bit of advice if Cassie’s got any, from her long years of professional sorting-out-shit.
She pulls a face, leans in -
“We’d ask, ‘Is there anyone at home to care for you?’ and the hospitalised person who’d lost capacity would often say stuff like, ‘Oh, I’ve got very good next-door neighbours’ ”.
She laughs and we grin at the thought of asking your neighbour to come in and wipe your bum.
She goes on,
“Then there’s people who expect that their family will, can, and should do everything. We used to get caught in the middle. Often, we’d hear, ‘Oh, my daughter will do it all’ and then we’d speak to the daughter, who’d be at the end of her tether and say, ‘Please get us help! We can’t manage!’ ”
Cassie tells me that adult children often want social services to act as middleman to explain to the elders that it’s not feasible or reasonable to expect those (ever increasing) levels of support. A bit of shopping and the odd meal are quite different from full-time care. The needs and the capacity loss and frailty creep up gradually, and the care duties grow incrementally. It’s hard to know when it’s time to call in extra help.
She tells me,
“There’s a lot of guilt and expectation going around - some outdated ideas about women’s duty and ‘I did it for my mum, so she must do it for me’ and that sort of thing. But a LOT of misery comes out of that situation. I’ve seen it. When you pay a proper carer, they’re trained, they do their job, they know how to work safely to give quality care and what to look out for - plus, there’s no emotional complications”.
I get what she’s saying - I’ve witnessed that one too: the exhaustion, the unreasonable demands, manipulations, guilt, the poor-quality care that non-professionals can give, the neglected own home and family, the backs put out from lifting without equipment, the burnout, the sibling resentments about who does what, the expectations around inheritance dues, the spoiled relationships. There’s some shocking bits of mess that can happen. It can take some families years to recover from the fallout from an elder’s decline and death. The funeral and the wake are just the beginning of the healing that has to happen.
Cassie thinks of another too-common attitude.
“When we ask about paying for care or getting in some help, people say, ‘I’m saving it for a rainy day’. And I’d have to explain”- she puts on her firm social-worker voice - ‘Well, it’s raining, right now’ ”.
She tells me that many people, both elders themselves and their younger family members, live in total denial of the facts of human ageing - until the crisis moment happens. The hospital assessment is often the very first time that a proper conversation takes place.
I ask,
“Seeing these situations so often, how has that affected you?”
I want to know what she’s doing and recommending.
“I’ve taken this on in my own retirement and I’ve prepared my house for my old age. It's all ground floor flat level now, with walk-in shower. I eat sensibly, I’ve learned about simple remedies and I make healthy teas from my garden herbs. I look after my skin - moisturise my whole body every day, watch out for wounds”.
“Yeah, skin gets thinner and more fragile. I’m noticing that already”.
She goes on,
“Then, I swim once a week. I do tai chi. I listen to podcasts, go to a pub quiz - things to keep my mind healthy. I go to a choir and I volunteer one afternoon a week. And I’ve started to go to Creative Waves and make art. All these things help. I've built a weekly routine with a bit of structure, a bit of please yourself”.
She leans forward, emphatic -
“I think we have an imperative to keep ourselves out of the hands of the poor beleaguered NHS. It’s a big job, getting older”.
“It’s a big thing, alright!”
“So, looking after ourselves and making realistic preparations IS our job, when we retire”.
“No rest for the wicked then, eh?”
We laugh, and she goes on,
“You have to build mobility and movement into your lifestyle, not take the attitude, ‘I’ve worked, so now I can do whatever I want’. Mobility is personal and different for us all. If you’re houseproud, doing energetic housework daily might be your place for building activity; if you like being outdoors, maybe it’s gardening. Find things you enjoy. Be conscious about your body, your movement patterns - don't slouch in front of telly, don't stagger from front door to car. Walk, move, watch your posture”.
“Yeah, I know people who practice standing on one leg while doing the washing up And squats when going down to a low cupboard. Keeping that frailty score low as you can get it”.
She nods -
“Yes, because, if you’re in hospital because you broke a bone, you can’t be discharged unless you can manage at home. And that’s far more likely if you were fit and mobile to start with”.
It’s interesting to observe from this exchange how deep-rooted is the feeling that everything is a job. And the associated senses of guilt and shame when we’ve not done the work, not kept ourselves fit and healthy. Neoliberalism might have given way to new formations, but the neoliberal subject - self-governing and personally liable - is by now well and truly sedimented.
Anthropologist Lauren Berlant’s work here, around slow death, was fairly controversial. I’ve done a bit of contract work since leaving academia in local government’s public health agencies, where officials often appear to express the same dismay and puzzlement as Instagrim (sic) self-improvers around why (in their view) poor people eat like shit, smoke & booze, get wilfully fat, refuse to exercise and generally don’t seem to care about their health. We despised social workers on the estate where I grew up; it’s been painful to move as an adult professional into circles heavily marked by that middle-class lack of understanding about working-class lives.
Berlant’s answer - some people, certain parts of the population, are cynically and by design marked out from the get-go for slow death; and lateral agency is a form of agency (possibly the only one) that some people have: the agency to refuse certain socially-imposed strictures, such as ‘Exercise Daily!’ I’ve written earlier about the Uk’s current enthusiasm for social prescribing. I can’t hold it all in anything but deep ambivalence. I want to see people offered choir and breathing classes for free (rather than pharmaceuticals) for their asthma or COPD, absolutely I do; but also, I recognise that expectations of self-governance and endless self-improvement can be exhausting for people whose lives are already under relentless pressure.
I used to love sitting with undergrads while they argued through the possibilities for system resistance to all this. Brought low by reading Foucault, they rifled reading lists to find evidence for the possibility of pushbacks. Bakhtin, Bataille, Bey, and many other writers with names not necessarily beginning with B.
I’ll do another post sometime about Berlant’s lateral agency, and about that ole’ binary (yawn) of compliance : resistance, plus something from anthro about the spaces where revolt or non-compliance might actually sediment into longer-term change. For today, it’s time to shut up, yeah?
Back to dying and death, then. Those last 3-5 years of life and how to face them.
We’re all ageing from the minute we’re born. Even me. Even you.
“Right, Cassie - what’s your main big bit of advice?”
“Don't think it won't happen to you! Age makes you vulnerable. And when illness hits, it hits hard and is difficult to get over. Don't chase youth, but do take care of your health and keep yourself in good condition”.
It sounds like Cassie has found her own decent-enough personal balance between fatalism and responsibility. We’ll leave questions of agency, responsibility and capitalist subjectivities for another day.
She laughs as we take leave -
“So many people would say, ‘I never thought this would happen to me’, and I’d think to myself, ‘Who did you think you are? Keith Richards?’
We’re all ageing from the minute we’re born. Even me. Even you. Even bloody Keith Richards.
Thank you for this! Discussions like these being had amongst my family in prep for parent demise so it was timely!
I'll be sharing this - widely.