Partial Truths

Anelie wisely suggested in response to the post I wrote about M’s isolation that she would benefit from access to the internet. This led me to think about the role of communication technology in general in residential care and how this will no doubt develop rapidly over the coming decades. Given sufficient investment (and this is obviously the crux of the matter, as ever), technology has the potential to enhance the residential experience no end. And as the general population become ever more tech-savvy, it can’t be too long before internet access is as fundamental a provision as a television.

And then, in my local paper this evening, I saw this.

How exciting! I’d love to visit them and see if the computers are really making a difference to residents’ quality of life. There are obvious emotional benefits derived from being able to remain part of a social community, but it would also be fascinating to see how people engage with the learning of new skills and the rewards of such ongoing mental stimulation.

My Mum asked the other day if my training had included any talk or instruction about the death of residents. I replied that it hadn’t and that in fact it hadn’t even crossed my mind that it should have done until she asked. Practically speaking I suppose it really should have done. Working in an environment in which most residents will spend the last years/months/days of their lives it is implicit that staff members are going to have to deal with the deaths of those residents at some point. Mum went on to say that were she to do my job, she would find the ever-present prospect of residents dying very difficult to deal with.

I can honestly say that I very rarely think about it. I’m obviously aware that the people I care for are reaching the end of their lives, but it is by no means an active preoccupation, and I hadn’t (until Mum mentioned it) really considered how I would react when faced with a resident’s death. Now that I have thought about it, it seems a huge oversight on the part of trainers and nursing home management not to broach the issue at all – even the very pragmatic mechanics of What To Do if you suspect a person has died. But equally, the physical response (get the nurse on duty) is so obvious that it barely needs articulating. The emotional response is another matter, but how can a person be trained for that?

A large part of my attitude is no doubt down to the fact that no one has died in the home since I started working there. Thus, there is no spectre of past experience that I need be conscious of. But that aside, I hope it also suggests that in spite of the implications of working in a nursing home, the job remains so much more about Life than Death.

Whether this is true for residents I’m not qualified to say. For some perhaps, but not, I suspect, for as many as it should be.

Actually, last week several people, as well as J, were noticeably more alert than I had previously seen them. Q had her eyes open wide for the first time with me, proving them to be a heartbreaking cornflower blue, while I fed her dinner, and she gurgled at me continuously. I know she was telling me things. (One of the greatest frustrations is not always being able to interpret what people are trying to say. One of the greatest rewards is the gratitude and relief on someone’s face when I get it right). But it was a pleasure to see her so awake and enjoying her dinner.

M, who I have always suspected as being more present than is generally recognised, was able to tell me in response to my question, that her afternoon drink (fortified strawberry milkshake) was, “not very nice.” It was the first time M had communicated verbally with me, but she always looks very intently into my eyes when I’m with her, and I try to do the same whenever I speak to her. Her face remains impassive, but after she spoke to me, I looked at her and assured her that I know that she hears everything, that she’s aware. That she’s still in there.

And P had a relatively lucid episode in which she managed to empty the majority of her underwear drawer in the course of attempting to put away her laundry. She also mostly undressed herself at bedtime, which was as physically capable as I’d seen her be. An hour or so later she was in bed moaning and agitated, eyes full of worry and confusion again (P’s condition fluctuates, and declines more rapidly in the evening, more distressingly than that of any other resident I see). It was heartening to have seen her feeling better though, even if only briefly.

And E! Reigning elder stateswoman of the home at 102 and permanently bedbound. Like Q, E spends the majority of her time sleeping, and rarely opens her eyes fully even when she’s being fed (again, like Q). But when we went to check on her during that shift, she looked at us with open eyes and responded to our greeting with an amiable, “Hello!”

It was wonderful to be able to engage with so many of the home’s frailest residents during the same shift. Though it did lead me to wonder if there was perhaps something in the water that day. And what it was. And where I could get some.

As is natural, I become increasingly confident and relaxed at work as I get to know the people I work with – both residents and fellow staff. I have been working upstairs for my last several shifts and so am at least aware of various personalities, even if I have spent more time with some residents than others. It’s obviously more straightforward to forge a relationship with those people who have greater cognitive function and can converse, but it’s by no means impossible to connect with those afflicted by dementia or other illnesses. Individual characteristics traits remain, and it’s quite special to occasionally get a glimpse into identities that aren’t purely informed by a person’s present circumstances.

One evening last week I fed J his dinner. I was happy to find him much improved since our last meeting – he looked physically brighter and was a lot more cognisant of what was happening. He was able to tell me that, “Yes,” he wanted to eat, and that he would rather save the yoghurt for later; when I enquired if he was sure he had drunk sufficient tea he replied, “I’m quite certain, thank you”, and the sentence was long enough for me to discern his accent – J turns out to be Scottish. And while that fact in itself determines nothing of his personality, it is still a vital aspect of J’s self that I am now aware of and which somehow renders him more three-dimensional, suggestive of his own unique life course, of a prior existence in which he was characterised by so much more than a failing body and a tendency to bite care assistants. I wonder if other staff know. I wonder if it matters to them. Perhaps it shouldn’t matter to me. But it does.

Having spent my first few shifts at the one nursing home I’ve been writing about, the last couple of weeks have given me the chance to experience work at two other homes in the area.

I should say at the outset that it’s difficult to know quite how to evaluate residential care – one home may be slightly dated in its decor and equipment, yet have a wonderful team of compassionate, dedicated staff, whereas another may be ultra-clean and well-equipped, yet have apathetic or uncaring staff. Fortunately I haven’t come across such extreme either/or situations, but I am very aware that it is this combination of hygiene/equipment standards and staff compassion that forms the core of my reaction to different homes.

I have worked one shift in a sparkling new extension of an existing care facility housed in an old mansion that backs onto fields. The whole place is spotless (you can detect it from the moment you walk in) and is equipped with cutting edge conveniences including a hoist that attaches to a permanent fixture above certain residents’ beds and a spacious sluice room that includes a separate macerator for soiled pads (as opposed to just a bin). I got the impression that no expense is spared in the running of this home – from the swish equipment, right down to tiny details such as the labels on laundry baskets being typed and laminated, rather than just scrawled straight onto the plastic lids with a marker pen, and the disposable aprons being of superior quality plastic to most. When the essence of the job is so demanding, these details make a big difference: if the staff are less stressed about a lack of supplies or malfunctioning equipment they naturally retain greater patience and are consequently better able to do their job. I was especially impressed by the way some of the rooms have French doors that open onto their own small patio area decorated with pot plants. It’s still unmistakeably a care facility, but small touches like that make it feel so much closer to a Home.

The other place I’ve worked in also manages to feel somewhat homely, by virtue of it being a big old Georgian house on a hill. Many of the upstairs bedrooms have lovely bay windows with views across a valley that has been particularly beautiful this autumn. The home overall has something of a hotpotch feel to it, which in some ways is quite endearing – there’s certainly nothing of the clinical air that renders some newer places a touch atmospherically sterile – but I don’t find it a very comfortable environment in which to work and I don’t think I’ll be going back.

I don’t have a problem with the staff – on the whole they are friendly and caring towards the residents. They spend more time with them than I’ve seen in other homes – primarily because the work is less time-consuming, the staff enjoy longer impromptu breaks which one c/a who I worked with chooses to spend in the lounge with the residents. She doesn’t engage with them particularly, but even her presence is a reassurance compared with most c/a’s who scurry off out of sight the first chance they get.

My discomfort stems primarily from the sense of benign neglect that pervades the home. Not of the residents – I haven’t seen any deliberate ill-treatment per se – but of the facility in general. Apparently this home was once well-respected in the area, but it suffers from a blindingly obvious lack of funding (it is part of the Blanchworth Care Group, whose profit margin I would be interested to know of), which manifests itself through less than adequate standards of cleanliness, inadequate provision of supplies, and underfunctioning equipment. One thing I appreciate about the BUPA home is that every resident has a set of supplies (pads, wipes, rubbish bags, cream, gloves, etc.) that is generally kept in the same place in every room. This allows staff to find the things they need quickly and easily, which is essential when you’re cleaning somebody up and trying to minimise discomfort. In this other home, however, there isn’t such a system – supplies appear to differ from room to room – and one thing that particularly irks me is the lack of special wipes for cleaning bums. Most homes provide specifically designed large fibrous wipes which can be used either wet or dry, with water or cream, without falling apart. This place however, relies purely on standard toilet paper, which is useless – it’s scratchy, the sheets are small, it falls apart very easily and is essentially no match whatsoever for the surprisingly copious amounts of poo that people continue to produce well into old age. Of course there’s a comedic element – but that’s on reflection, in the telling – in the instance itself it’s distressing and frustrating having to unwind metres of paper to do a job that there is a much more effective product designed to do.

Other aspects – the lack of pans for the commodes, which means waiting as they go individually through the sluice, and then enduring the frustration of finding that the sluice isn’t working effectively enough to clean the pan sufficiently; the fact that there are no bins for soiled pads in the sluice room itself; the fact that the sluice can’t cope with solid waste matter, which means tipping it down the toilet in a separate bathroom before returning to the sluice; the strained plumbing system which means flushing away waste is not always as straightforward as you’d imagine. The fact that the smell of stale vinegarised urine from E’s clothes as I got her ready for bed was so overpowering I had to hold my breath…and could only suggest that she had been sat in wet clothes for hours without being changed.

This was all compounded during my last shift by the time I spent with A. A is a 94 year old man, built like a Weeble (“they wobble, but they won’t fall down!”), completely blind in his right eye and virtually so through his left; he suffered a stroke in 2003 (or “twenty-oh-three” as he put it), which left him unable to lift his arms above his shoulders and thus too immobile to continue living alone in his flat, which he had been doing since his wife died in 1996. He is also, he informed me as he got into bed, a born again Christian and has been since he “accepted the Lord as [his] saviour” at age twenty. While his beliefs are removed from my own (there’s nothing like being reassured that we’re all sinners as you tuck an old man into bed), I nevertheless take comfort from the fact that he has a comfort of his own to accompany him as his body begins to wain.

A gets a bit confused about things (such as unbuttoning his pajama top just after I’d helped him put it on), but is well aware of where he’s living, and of his physical condition. Early in my shift he rang his buzzer and I was asked to help him off the commode. When I got there A was concerned to know whether his urine was clear or bloody – I had been given no warning of this by the nurse who asked me to see to him, despite what transpired as her full awareness of an ongoing infection A has been prescribed antibiotics for. When I asked A to stand up, the contents of the pan showed no trace of urine – only blood. Dark ruby, thick, sticky, incredibly pungent blood, which also hung in a coagulated glob from the tip of A’s penis. Had I not known, I would never have thought that such an amount of blood could be the product of urination. It was, shall we say, a bit of a shock. I replied to A’s mild enquiry as to the composition of his urine by informing him that there was quite a lot of blood (though I was relieved to know he felt no discomfort…and also, in a sense, to know that he couldn’t see for himself the product of his body’s dis-ease) – his pad was also saturated a dark red. Much of my shift was thus dominated by blood and shit – two substances which it turns out, particularly in combination, are really quite exhausting, particularly when you’re working in an under-resourced environment with substandard equipment.

Though you don’t realise that until later. I’m acutely aware of how rapidly I become institutionalised at work, in the sense that my world shrinks to the dimensions of the building, and the human beings who live within it – including their bodily excretions, which I deal with calmly and efficiently, aware that I am there to ease the discomfort of others, and to maintain their dignity as best I can while cleaning and inspecting the most intimate parts of their bodies. And so far I’ve been able to leave the uncomfortable sights and smells behind me when I leave, because they are so far outweighed by the pleasure of the human contact I enjoy with residents (and also because I’m not squeamish – a condition I have my own theories about that I’ll save for a later date). But perhaps the experience with A was a bit much to expect myself to process and let go of so quickly. As I drove home I felt a heaviness, a quiet numbness, as opposed to the happiness I wrote about before. I wasn’t at home long before dissolving into sobs and sleeping for twelve hours. I think this time I needed to feel the shock.

Just in case of any lingering wisp of optimism/naivety regarding the motivations of the private care industry and the British government:

http://www.guardian.co.uk/g2/story/0,,2209508,00.html

http://www.guardian.co.uk/letters/story/0,,2209908,00.html

Had I made a different decision six months ago, I would be over halfway through my first semester of a journalism masters at Columbia by now. Instead, I’m living at home with my parents, working in nursing homes for a few days a week, earning a less than spectacular amount of money. But I’m so glad. I’m so relieved that I listened to that niggle inside that whispered to me that journalism was not my path; and that I was brave enough to turn down the double opportunity of studying at such an illustrious institution and living with my boyfriend into the bargain, in order to follow the instinct that I needed to be patient, because life had something else in store for me.

It might be hard for most people to understand why I’d rather be here doing this than there doing that. I’ve been thinking a lot about why I love this job – the essence of the job, that is. It’s exhausting, it’s draining, frustrating, physically demanding to the extent that my own somewhat vunerable health prevents me from working as many hours as I would like. During the course of a four hour shift last night, I was sworn at, shouted at, cried on (by both residents and staff) and almost bitten. For the first time I was on the verge of tears myself, as M raged about how badly she’s treated, how much she hates it there, how nobody cares. And as Pg sobbed because she’d been left on the commode for too long and felt she was being “treated like dirt”. The c/a I was working with is one of the martyrs I discussed previously. She’s permanently on the defensive, is desperately unfit and therefore always exhausted and irritable, and seems to bear a thinly disguised grudge against everyone for the fact that she has to do any work at all. She never makes eye contact with residents (rapidly becoming my number one irritation), talking abstractly into the air above their heads instead, giving no sign of engagement with the person, beyond the necessary physical contact with the body. Last night she made me quite nervous as she told me that Jn had a tendency to bite and so she would need my help getting him ready for bed. I was intrigued, given that the only time I’d met Jn previously he had been completely placid – presumably there are times when he is more agitated than others. Rather than entering the room and greeting Jn calmly and positively, however, reassuring him that he had no need to be distressed, my colleague marches in and immediately shouts, “Right, Jn, we’re going to get you ready for bed now and I don’t want no biting, alright?” Upon which she takes his arm, and he obviously tries to bite her hand off. Do you blame him? I wanted to bite her myself.

It’s the attitude that doing the work with compassion somehow takes an unaffordable amount of extra time. But is it not worth it, for God’s sake? Why is it that when I took Jn’s hand as he was shouting, and looked into his eyes to explain what we were doing and to tell him that he was safe with me, he calmed down and even said, “ok”, as opposed to calling me a bitch which he did my colleague? Because I engage with him as a fellow human being, because I sympathise with his situation and try to understand how he must be feeling, rather than just pushing and pulling bones and flesh in an effort to get the job done as quickly as possible. Maybe next time he’ll try and bite my fingers off - I’m certainly not suggesting I have some magic touch. Far from it, in fact; it’s just recognising, respecting and engaging with the humanity in each individual that sometimes allows you to access them and to calm their agitation which must so often stem from fear.

And therein is what I love. It’s why even after the chaos and tears of yesterday’s shift, I left with a sense of quiet euphoria – it’s the humanity of it. It’s the sense that I am engaged with the very stuff of life and death, with the body and the soul, with humanity at its most intimate – an intimacy which I regard as an amazing privilege, because it isn’t earned, it’s unceremoniously thrust upon both staff and residents from the beginning. And it allows me to access parts of myself that I’m not able to, or am not called to, readily express in other areas of my life – a maternal instinct, a desire to touch and calm and soothe, to listen when others won’t, to protect from harm. It feels deeply important; I feel I am involved in a profound human project in which we are trying to ease pain (in all its manifestations), to maintain dignity, to provide comfort for those reaching the end of their lives. And I feel equally humbled, thrilled, and hugely privileged to be able to share these days of my life with them.

Dinnertime, at about 5pm, is an aspect of my shift that I have become quite ambivalent about. I really enjoy what it consists of – taking trays to residents’ rooms, tucking their napkins in, or putting bibs on if necessary, and feeding those who can’t manage it themselves. But all this occurs within a very tight time frame of about 45 minutes – an hour, maximum – that turns it into a high-pressure exercise, draining it of much of its inherent pleasure.

This is particularly true when it comes to feeding, and my concern here is not for my own job satisfaction, but for the implications the time constraints have for the (mal)nourishment of residents. There are a number of people who need feeding at each mealtime – the food is usually pureed or liquidised, and is fed from a bowl with a spoon. It’s a very intimate process, feeding somebody. The obvious analogy is with feeding a baby, but I’m acutely aware that feeding an old person is existentially very different. You feed a young child because they have yet to learn to do it themselves and know nothing different. You feed an old person because they are no longer able to manage it themselves, despite having done so for an entire lifetime. It’s very humbling – the awareness that were it not for you sitting next to them with a spoon, that person would not eat.

Given the chronic nature of understaffing in care homes, however, most c/a’s are expected to feed at least two people in the allotted mealtime. Which means feeding fast. Which I refuse to do (which earns me a disapproval I profess not to care about). If you are sat with a vulnerable adult and you insist on pushing spoon after spoon of food into their mouth, not allowing them sufficient time to chew and swallow at their own pace (which, in the elderly, can be an excrutiatingly long time), then you are essentially force-feeding them. And this constitutes abuse, for which you should be prohibited from working in care. But it happens all the time. Feeding becomes a purely mechanical operation, dehumanising the recipient, and bypassing any notion that there may still be pleasure derived from eating, even if it is unrecognisable mush.

My greatest concern though, is that c/a’s are too quick to assume that the resident has had enough – particularly those who struggle to communicate effectively. I have seen c/a’s asking loudly into residents’ faces, “Have you had enough? Do you want any more?” and taking silence as an answer, whisking the tray out with half the food left on it. This isn’t how it works – every person I have fed, even Q, who doesn’t speak anymore and is so frail she barely even opens her eyes, has let me know quite unequivocally when they have had enough to eat or drink, because they simply stop opening their mouth when something is offered. G, who I adore, has never spoken a word to me and hardly eats anything, but if I sit with her for a few minutes she might take two or three spoonfuls, before resolutely clamping her mouth closed and lowering her head. Or MY, who rarely speaks either, but will utter a resounding, “No,” when faced with a spoonful she doesn’t want. In contrast, I, who is desperately frail and rarely communicates, still has a significant appetite and if given time between mouthfuls keeps coming back for more until the bowl is empty. I’m convinced that there are residents who are undernourished as a result of not being given the time in which to eat at their own pace, and it’s quite frightening. Nutrition being a cornerstone of life, why are mealtimes so rushed, so pressured, so uncomfortable, so devoid of pleasure, and even potentially harmful?

In the same vein, another group of residents who I feel are at risk of malnutrition are those who can manage solid food and so are deemed as being able to feed themselves. This is wilfull ignorance on the part of staff. Last week I took P her dinner tray. I believe P has Parkinsons with dementia, or a similar condition. She has rare moments of lucidity and I can tell she is aware of what she wants to say most of the time, but she is rarely able to articulate it coherently, and is often confused and agitated. She is physically frail, she spends a few hours of each day sat in her chair, and suffers from shakes and muscle spasms.

P is not classed as a “feed”. The dinner I took to her comprised a bowl of soup and boiled egg and soldiers. When I got to her room, she was sucking on a tablet the nurse had given her, but not helped her to swallow – I fetched her and she then did so. I was immediately concerned that P wasn’t going to be able to manage her dinner on her own, but I had someone else to feed and so couldn’t help her right away (see how it works?), so I took the top off the egg which was boiled beyond the point at which soldiers have any purpose, and had to leave her to it. When I next called in to her room en route to feed someone else, P’s tray was unchanged but for a bite out of one piece of toast, and the water glass that was now toppled in the middle of her soup bowl. I extricated it, offered her a spoon of soup and again had to leave, intending to return. Then when I next saw P’s tray, it had been cleared onto the collection trolley, and the food was untouched. So a c/a had gone into her room, seen she hadn’t eaten anything, assumed she didn’t want it, and taken it from her. So P had no dinner. Perhaps she didn’t have an appetite anyway, or perhaps, had someone been able to sit and help her, she would have relished every last scrap. The worry is that until someone like P loses sufficient weight to cause concern, her food intake won’t be monitored - malnutrition in the elderly in residential care could, I’m convinced, be prevented if homes had more staff and allowed them more time for the monitoring, helping with, and feeding of meals.

As I fed lovely I the other day, I became increasingly aware of the pressure to hurry up, as the trolleys clattered past the door and I heard trays being stacked up. To the extent, I admit, that I almost hoped she wouldn’t want to eat everything. She did, and I’m glad, but it was a frightening moment to experience – to glimpse the way in which the pressure under which you work can detract so harmfully from the way in which you actually do such work and the standards you set for yourself. I would never succumb to the pressure in the ways I’ve described above – I’d happily be sacked for feeding too slowly, rather than go home thinking I deprived someone of an extra, crucial, mouthful of food, because I “didn’t have time” – but that’s not to say that the pressure isn’t felt.

There is an attitude of martrydom assumed by certain people in this job, which inspires a rage that renders me almost mute in my inability to articulate it to my satisfaction.

It’s an attitude that entails a visible resentment of the work itself and the human beings for whom they are doing it. They act and speak as if they are running a charitable concern for which they receive no personal renumeration and for which the residents do not pay. Wrong on both counts. Agreed, care workers are both underpaid and undervalued, but no one is forced into the work. You can easily earn the same rubbish pay for a much easier office-based occupation, wherein you can avoid contact with the type of dependent person you obviously despise. There is such a lack of compassion, and this air of the martyr is most common amongst those who have been doing the job for a long time, it seems (which is not to say that all of them act that way, thankfully). As if it is somehow their right to bitch and moan about residents behind their backs, to exchange as few words as possible with them, to have obvious favourites. On this latter point, of course there are going to be some residents you prefer to others – such is the nature of humanity. But you are paid to care. For everybody, not just the people you like. And if you are burned out, if you are exhausted and run down by the work, then that’s very understandable, but that’s the point at which you need to leave the profession, rather than carrying around this enormous chip on your shoulder as though you are somehow worthy of so much more gratitude than you receive.

And it is these people who are by far the worst at the job. By which I mean their overall ethos, not whether or not they are competent in the use of a hoist or a slide sheet. And they are the people who patronise and degrade residents with their manner, be it overly brusque, dismissive, or simply devoid of any kind of love. And were I in charge, they’d be gone in an instant.

Two illustrations (in case my semi-articulate rant has yet to make its point):

• At the end of my first paid shift, I was in the nurse’s station, on the ground floor. Another c/a comes in with a Lucozade bottle in one hand, and is told she’ll be working her shift upstairs. She gives an enormous belch, before declaring, “I hate those bastards.” The other people in the room laugh, one gives a pained smile, and I stand there, astonished. She has worked there for three years, and the idea is, I assume, that this gives her the right to speak that way. Nothing gives her that right.
• Again, the end of a shift in the downstairs nurse’s station. Each resident has a buzzer which registers on various small displays around the floor. R, who I have yet to write about, buzzes a lot. Part of the resentment of the martyr c/a’s is generated by those residents who they deem as buzzing “too much.” As if each resident should show some consideration and ration the amount of assistance they require during each shift. Because, really, it’s the staff who suffer the most, right? On this evening, just as the care staff are switching over, R buzzes, as she’s been doing all evening. A c/a gets up to glance at the display, sees who it is, and says, “Ugh, I hate that woman.” I flinch, audibly, at which the nurse on duty pierces me with hawklike eyes and demands, “What?” I mutter something pathetic like, “You shouldn’t say that,” to which the nurse replies, “Oh, you don’t know the trouble that woman’s given us. She’s given us a lot of trouble that woman.” And I want to scream. “That woman” is paying an unjustified fortune to be there, spending her days incapacitated in bed, slowly losing her mind, having already lost the use of most of her body. And she has earned the hatred of staff for being particularly hard work to look after. But that’s what we’re paid for. More importantly, that’s what R is paying for – through the sale of her house, the depletion of her life’s savings, for all we know. But she is treated as a nuisance thing, to be dealt with and left alone until she next buzzes as if deliberately intending to frustrate her carers.

The worst thing in my, still limited, experience, is the utter lack of emotional intelligence amongst particular members of staff. Utter ignorance of the fact that if they march into someone’s room sighing and muttering because that person needs to use the commode for the second time in an hour; if they respond to an individual with a tendency to dramatise claiming it hurts as they’re lifted in the hoist with, “I’m sure it does”, rather than a simple apology; even tiny things like not responding when a resident says thank you for something; that person is going to sense the coldness, the lack of compassion, the lack of love, and instead experience someone going through perfunctory motions, often without even making eye contact. How would you feel in their position? And do these staff members have any conception of the fact that they might well one day be in that position?

Having to observe this mode of working is by far the most demanding part of the job.