I did say that I’m a Planner

As I’ve mentioned, I’m largely motivated to do this work by my plan to begin graduate study in medical anthropology with a focus on ageing next year. To this end I’ve spent the last couple of months deciding where I’d like to study and contacting relevant people about my PhD ideas. I’ve had encouraging responses, but it’s a s-l-o-w process – I’m currently waiting to hear back from a potential supervisor who I built up the courage to ring yesterday only to be routed straight to voicemail. While that was a slight relief, it doesn’t stop me being impatient to hear back from him. Does he not realise who I am?

This hiatus from work has at least given me the opportunity to begin to distill my thoughts somewhat, in the hope of narrowing my focus and generating an initial research proposal (a proposal proposal, so to speak) that I am able to articulate in a vaguely coherent manner. This latter point is proving troublesome.

Dementia in the News

The Alzheimer’s Society has published a report today called Home From Home looking at the experience of dementia sufferers in residential care. The report calls for mandatory dementia training for all care home staff (yes, please) and finds that:

  • More than half of people with a relative in residential care say there is not enough for the person with dementia to do each day
  • Over one in four family carers feel they do not receive enough information about the care and treatment of the person they care for
  • Care home staff say providing care that improves the quality of life of residents with dementia is the top factor in job satisfaction

There’s so much to be done, but it’s heartening that the report’s release made the national headlines today.

Lunch

There was an article in our local paper last Friday about a Tuesday lunch club for older people that has been running in my town for 28 years but may be forced to close at Christmas due to a lack of volunteers. The club provides a hot two-course homecooked meal and a chance to socialise – for some of the members this is the only chance they get to meet other people all week. Such services are vital – there’s no doubt that without them more elderly people would enter residential care, arguably before it is absolutely necessary.

So, rather than restricting my dissatisfaction to grumbling into cyberspace, I marched up to the club this lunchtime to see if I could be of any help. I think they were a bit surprised to see me (pleased, though), and what they’re really looking for is a cook. I like to cook but still consider myself very much a learner and by no means equipped to prepare lunch for dozens (the terror!). They did say, however, that they need people to serve the lunch and clear up afterwards, which is more in line with my capabilities; the organiser wasn’t there today, so I left my details and hope that something comes of it. As well as contributing to my community, I’m really interested to be involved with older people who remain living independently (such as my wonder of an 87 year-old Grandma); I wonder how the experience of ageing differs for people depending on the environment in which they live.

Frustration

I don’t consider myself a control freak. I’m a renowned Planner, but equally a lover of spontaneity and serendipity, and I rarely get stressed if something doesn’t work out exactly the way I envisaged (and things rarely do). Over the last few years I have relaxed significantly in my approach to life. Having said all that, however, I do get frustrated when I feel my efforts are not being rewarded, or when I find myself reliant on other people or circumstances to ensure that my efforts come to fruition.

This is a convoluted way of complaining that I don’t have any work at the moment and it’s annoying me. The advantages of working through an agency are the flexibility and self-designed schedule (and the extra pay at the weekend), all of which work well for me given that I can’t commit to a job beyond February (when I’m going to India! Alone! For three months! Watch this space.). The obvious disadvantage is that when things go quiet (as, it appears, in the run up to Christmas when people stop skiving in order to earn more money) I don’t have any work to do. This leaves me frustrated, poor, and missing my old friends! I hope something comes up soon.

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.

Life Before Death

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.

Something in the Water?

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.

Identity

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.

Comparisons

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

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