Independence or autonomy?

The problems of funding, supporting and adequately organising social care are in the news, and with luck will form part of the current UK general election campaign. At the moment the issues are seen almost entirely as a matter of funding. It's all a lot more complicated than that, though funding is a significant issue. Carers UK estimates that 1 in 8 adults in the population has some kind of caring role. It estimates that 6.5 million people are involved, in some capacity, in caring. This does not include those whose caring is an incidental but vital aspect of their role - teachers, social workers, police, prison officers, home workers etc. If people directly involved in caring are on benefits, they get paid £1.77 per hour, thus saving the exchequer £132 billion per year. If employed, carers are likely to earn at or below the level of the current minimum wage, £7.50 per hour (this is only since April - it has been less than that.) 

And caring is a demanding occupation.  Those providing high levels of care are twice as likely to be permanently sick or disabled, compared with the rest of the population. (Survey by Carers UK 2016)  625,000 people suffer mental and physical ill health as a direct consequence of the stress and physical demands of caring. (op.cit) Over 1.3 million people provide over 50 hours of care per week!

This is just the political aspect of the problem. From an organisational point of view, caring (at the agency level) is a badly managed occupation, where staff are increasingly being asked to cover impossible amounts of work and geographical territory in less and less time, by people who do not understand the complex human nature of the work. Training in adult care has become the province of an organisation called Skills for Care, which offers vocational qualifications at a range of different levels and with differing specialisms. This framework (a term beloved of civil servants) is the end product of a generation of tinkering with the vocational qualifications system by successive governments who have completely failed to understand the needs of vocational education, and who have led us like the Gadarene swine down the road of reductive tick box training, with minimal associated education or personal development. Such organisations have an Orwellian capacity to talk endlessly about 'the regulation of quality' and 'the achievement of standards', with lots of fine sounding bodies to back up this newspeak, but who, it would seem to an observer like myself, would not know quality in a learning experience if it got up and bit their bums.

And to add to the general chaos of the situation, Skills for Care estimates that there is a need for more than a million additional workers, while the ones who already do the job are leaving in droves. The prognosis for what effect leaving the European Union will have, I leave to your imagination . . . . And does it follow, even if we could get these numbers of people into the occupation, that we have a million people with the right qualities to do the job well? Real (not fictional) quality in training and development could be a critical factor in this situation. 

I am not qualified to address all these contextual problems. I can only draw attention to them, but I am very interested in the actual business of being a carer, in what it means to be a carer, indeed what 'care' is - and I notice that almost nothing is said about this when the subject comes up. Being 'cared for' for some time recently after a major operation was an eye-opening experience. One thing that struck me pretty quickly was the way in which the interests of carer and cared-for could diverge quite markedly. My carer (who did an excellent job of looking after me, by the way) was often interested in discouraging me from doing things for myself - things which made her anxious. I suppose she didn't want to be held responsible if something went wrong and my physical health got worse. Put it another way: her estimate of what I could manage, shall we say, seemed lower than mine. And if your pay depends on the client remaining sick . . . . you can easily see how possible it is to hope that the patient will not be able to do certain jobs, perhaps for quite a long time!

I, on the other hand, was keen to start doing as much as I could for myself - I wanted to recover, not over-hastily, but as quickly as seemed reasonable to me. It might have been tempting to lie back and allow someone else to hand me the paper to read, but, actually, it was good for me to make the necessary stretch. At my age, I need to keep as mobile and active as possible in order to preserve my ability to live alone in a house I love, rather than becoming a charge on the state in a nursing home. And I was well aware of how a period of ill health can dramatically affect that ability - sometimes a capacity for independent living, once lost, is never recovered. From talking to many older people, including many with similar health problems, I'm pretty sure that the general wish of all of us is to remain as independent and capable as possible.

But to do that we do need to be active - not becoming marathon runners, not going to expensive exercise clubs, just keeping generally active around the house and in the garden. We need to do the shopping as long as we can, to go out for walks and coffees in town, to be able to enjoy local entertainments and sporting events, and to keep driving for as long as possible. Driving is a particularly interesting issue, where carers can have a lot of anxiety about older drivers. The majority of accidents, we are often told, involve young people, though older drivers come in for a lot of stick in the press and among the busy and irate middle-aged. But let us not pit the young against the old. How about driving under the influence of alcohol, which is no respecter of age? In a survey conducted by the charity Brake, 20% of drivers of all ages responded as having risked driving while over the limit by driving the morning after a night of heavy drinking. Risk is not a factor peculiar to the old!

In my desire to return to active living, I found the hospital and the consultant who did the medical care were at one with me in this - they had me out of bed and moving about with a zimmer frame as rapidly as possible, both to reduce the risk of thrombosis and also to kick-start the movements that would enable me to begin to return to a normal ability to walk as soon as possible. Sometimes they overdid it and it became rather a brutal process, but on the whole, it worked well. When I got home from hospital, however, I found that I had to educate my carer in the idea that I wanted to continue in this vein - did not want to spend my days being waited on hand and foot. If you are a carer you may want to say, yes, but not everyone is like that. Some people overestimate what they can manage, some are quite hard to get moving after a period of ill health. Yes, indeed, but the client knows much more about what they want and can do than the carer - they have lived with this person for much longer! I still think the majority of us are pretty keen to get back to independent living as soon as we can reasonably manage. One's being revolts against the idea of being permanently unable to look after oneself. The carer's anxiety may get in the way of this goal, rather than the client's. Over-caring can be a mixed blessing. And while caring should be adequately funded and supported, there is clearly a 'too much' side to some caring which shows in the amount of ill health experienced by carers. 

I found, also, that giving over one's home and way of life to another, though s/he may have the best of intentions, could be a depressing and even risky business. Quite a lot of elderly people are now victims of fraud and theft by so-called 'carers' who in fact see them as a soft touch. The carer is normally unsupervised to an unusually high degree in their day to day work. It matters what kind of person they are. In passing, have we learned the lessons of the appalling level of abuse of children in so-called care that has been uncovered in recent years? That positions of 'care' tend to attract those with a malign agenda of their own? The power relations are less than equal, sometimes considerably so. Abuse of the elderly and disabled is now a growing social problem. And while I am not in the business of blaming victims, is it our fault as clients as well as that of the perpetrators? How come the population is so financially gullible, is what I ask myself? Is it that the joy of being 'looked after' - perhaps for the first time in their lives - causes them to drop their usual alertness for signs that some people are untrustworthy? It is too easy to assume, in my opinion, that older people are mentally less able in some way, and therefore become easy victims. They have donkeys' years of experience of life behind them, after all, and not every older person has dementia or even a poor memory. I think there is more to it than that.

Where I'm leading up to is the idea that psychology is a key aspect of the caring business, and that is discussed hardly at all. It cannot be measured by ticking boxes - it has little to do with whether the carer can perform certain tasks like changing a dressing (helpful though this may be). The psychologies of both carer and cared-for are both engaged in the process of caring, often in a closely intimate, one-to-one relationship, which parallels to a degree the relationships among families - which are by the way notoriously unbalanced! - and does not anywhere nearly resemble the carefully trained, tutored and supported relationships which develop in counselling and psychotherapy.  

All this led me to think more about what good quality care actually is. The word comes from Old English carian, cearian "to be anxious, to grieve; to feel concern or interest," and beyond that from proto-Germanic ‘karo’ meaning “to lament.”  Caring is closely related to sadness, and also to the anxiety that goes with having a concern about another person. Caring is about feeling the needs or the suffering of another person, and perhaps implies being able to respond to those needs. Doing the washing up because you want your kitchen to be clean is not in itself a caring activity. Doing it because you can see that another human being is struggling with it is the caring part. In other words, it's in the motivation of feeling the needs of another and responding to them that something becomes a caring activity. I very much doubt whether you can tick-box the existence of such a response. It is in the same ball park as concepts like ‘empathy’ and ‘relatedness’, which enable us to be alongside another human being and go beyond our own immediate needs in response to theirs. If you question this, think about the opposite of caring - i.e. not caring a bit. At that extreme, we place psychopathic behaviour as that which is unable to feel or respond to the needs of another, and we see this as sick and sometimes inhuman behaviour. It gets into the Diagnostic and Statistical Manual of Mental Disorders (DSM) with very little argument. 

Of course this type of 'caring' response - feeling the other's needs - has not always been fashionable. There was quite a long period when it was regarded as 'unmanly' or at best sentimental 'fussiness', and to be discouraged. It is easy to make the mistake of imagining that people of another generation, whose lives were nasty, brutish and short, could not have had the feeling responses that we have today. However, brain studies strongly contradict the idea that caring is somehow a ‘modern’ state, and that those of another generation did not have to feel as we do.  Professor Mark Solms (Professor of Neuropsychonalyis in Cape Town University) comments:

There are several classifications of the basic emotions [found in the brain].The best-known taxonomy is that of Jaak Panksepp(1998), which recognizes (1) appetitive foraging,(2) consummatory reward, (3) freezing and flight, (4)angry attack, (5) nurturant care, (6) separation distress, and (7) rough-and-tumble play. The basic-emotion systems are given capitalized names—SEEKING, LUST, FEAR, RAGE, CARE, GRIEF, PLAY—to distinguish them from the equivalent colloquial usages. It is important to note that each of these circuits generates not only stereotyped actions, but also specific feelings and motivations, such as curiosity, sensuality, trepidation, anger, affection, sorrow, and joy. The brain circuits for the basic emotions are conserved across the mammalian series, and they admit of considerable chemical specificity.
(The Conscious Id   Mark Solms   Neuropsychoanalysis Vol. 15 , Iss. 1,2013   Bolds are mine.)

In other words:  1. these are the oldest emotion systems in the human neurobiology, belonging to the mammalian brain (we are talking millions of years old here), and 2. CARE is definitely one of them! We share these systems with all other mammals. ‘Basic emotions’ are in fact what we sometimes call ‘instincts’ or drives. They are systems because they involve both actions and feelings,  generated by the activation of these systems, which are triggered chemically, with specific chemistry attaching to each of the systems.

It is not hard to speculate why care is so deeply embedded in human psychology, given its obvious importance for our survival. Nurturance (caring) is what parents have done for their offspring for millions of years. If they had not, if they could not respond with feeling to their offspring's needs, we would not have survived as a species. Modern infant studies have shown how vitally important mother love and care is for the thriving of infants, and how they can fail to thrive – can indeed die - without it. It is not the food deprivation alone which causes death, but the care that goes with it. And we can see from Panksepp’s classification how equally deeply embedded are grief, separation distress and loss. All seven systems are best thought of as functioning at the same time – they are not to be envisaged as separate packages, though the chemistry that associates to each system is probably specific to that system. We can lose what we care for, and the grief of loss can be extreme. Observe a dog or a horse grieving over a dead offspring, and you will appreciate how profound these feelings can be – and how physical and active they are. The basic emotion of CARE generates ‘stereotyped actions’ as well as feelings and motivations. We show caring in specific and recognisable ways.

It is nice to note that play is also deeply embedded in the human psychology – which explains why we can joke, even at a moment of intense sadness or suffering. And that play is conceived as physical and not merely mental. Hence, art is a form of play and goes back to the very beginning of human culture. It could be that the activation of these touchstones of feeling in others from time to time gives us assurance that we are in fact dealing with another human being. People who do not display these touchstones are harder to relate to. In extreme cases, they are the province of our most famous serial killers, and we call these 'inhuman.' There is nothing so scary as an emotionless android in the movies!

Care and grief as actions persisted for centuries in standard human behaviour. Grief and rage had to be a public display, as in the Old Testament, when mourners rent their garments to display their sorrow or rage. Jesus Christ questioned whether such display was always rooted in 'real' feeling - a sophisticated thought for his time. Christantiy absorbed much older philosophies such as stoicism, and one way and another, for a long time, feelings were not for public display. Our Anglo-Saxon ancestors prided themselves on suffering in silence. This tradition obviously had some strength in it, judging by the length of time it endured as a philosophy of life, punctuated by intermezzos of display and self-ornamentation such as happened during the Elizabethan period. The silence of the sufferer became associated with the 'manly' or 'saintly' virtues such as courage and endurance, and probably had an important function to play when much of life was nasty, brutish and short. After all, there was a lot you could not do much about. Nowadays, because we can do more, we tend to think that what we can do we should do. We like to see ourselves as fixers – that, indeed, there ‘should be’ something we can do about almost anything. Anything that could have been done that has not been done is therefore viewed as unpardonable neglect. It does not, of course, follow that this is the case. For us, post two devastating world wars, the preservation of life has become so sacred a philosophy that we are becoming over-concerned to preserve it, even in those who would in fact like the choice of ending it.

The mammalian emotion systems we have been discussing gave way quite recently (in the perspective of human history) to the development of the pre-frontal cortex – that which probably distinguishes us from most other mammals. Among its many sophistications, this part of the brain enables thinking to become an adequate substitute for action, allowing us to pause and reflect, in situations where, at one time, action would have been the only option. Nowadays we have the option of thinking about whether care is the right way to proceed: and if so what kind of care? As opposed to jumping into the middle of a problem, with action governed by an ancient imperative that drives us to do something! At such moments, we are sure we know what the other person wants/needs. And indeed, if they don't want it, we still know better what is good for them!

This is where I came in, I think, when I began to sense the complexities and conflicts of interest in being cared for. And it is where the tick box approach to training of care workers is so inadequate. It seems to bypass the whole question of how to proceed, whether to proceed at all, and, if so, what is the right kind of care. Thinking, shall we say, is to be discouraged, in favour of learned procedures. What needs to be thought about, I suggest, as a first base, is whether it is independence that the client/patient needs, or more personal autonomy.

The two terms are not synonymous, though they are used as though they were. 'Independence' is rooted in the doings and claims of states and populations - French 'independence' being typical. It is closely connected with having enough money to live - i.e. not being a dependent relative or one supported by the state. And it often shades into 'not influenced by others in one's opinions or conduct - thinking for oneself' (OED) As such independence has had a good innings as a quality to be admired. We all like to think we are not influenced by others. We will vote as we think fit, won't we, in the forthcoming general election? (though it is hard to see what the point is of having a political debate if we are not going to be open to being influenced!) The problem with independence as a life goal is that it isn't always a practical possibility. But also, it ignores the fact that close relating involves dependence by definition. If we are to be able to love, we need to place ourselves in a position of some vulnerability - including that of (potentially) being hurt. Trauma prevents some people from being able to tolerate this risk. But until they can find a way to do so, the traumatised find it hard to make close relationships. 'Feeling the other's needs' and responding appropriately is central to our idea of a good relationship. You cannot really have intimacy without a basic empathy like this. If you are never going to be influenced by your partner, you can quickly end up in a pathological relationship where all the power is on one side. Good parenting involves seeing the difference in one's children and trying to respond - rather than trying to get the children to conform more closely to us.

Autonomy, on the other hand, is Greek in origin, meaning 'having its own laws'. In Kantian thinking, it is all about having an inner law - a state or capacity to consult inwardly, that we can and do invoke when it is needed - something that Kant identified as a serious moral virtue. It is about being able to act in accord with one's moral sense, rather than one's desires (one's instincts or basic emotions?) In a word, it is about having a mind of one's own. Here is where the mammalian brain response is not enough. We also need the capacity to pause and think conferred by the pre-frontal cortex. We may or may not be entirely independent, in this sense - we all have to depend on others to a greater or lesser extent - but even in the closest relationship, we can still retain a sense of doing what we think is best or right for us, whatever our circumstances. 'Doing the right thing'  has had a poor press, compared with 'independence' - it seems we feel we can demand that people get things right, and not just 'try to do the right thing'! I am doubtful about this. But that's another argument.

So 'independence' can make us feel good and strong and unbending before others - an independence which may be more fictional than actual - as evidenced by the way in which instant hysteria breaks out, should there be a petrol shortage or a concern about the safety of food. Meanwhile, we may not actually have much personal autonomy - because the fact is we do what is expected of us most of the time! We become fixers - we rely in actuality on the mammalian brain's belief that CARE requires automatic action and feelings - stereotyped action/feelings for the most part. Instinctive care is a knee-jerk response: there is the need, and I am required to respond. In this situation, one quickly becomes a compulsive carer.

I wonder whether the option of pausing for thought is less readily available to some people? I notice that for some people, the knee-jerk response to meeting a need is ‘I must respond’ at once. As opposed to, “I must think about what is the best way to go here.” Do we really need more publicly provided care is a question worth asking? Should we restructure the whole of our public finances to do greater justice to the work these many careers do? Surely there is a cost benefit, and not just a cost, to the work of caring? Without doubt, when it is well done, quality caring enhances lives and saves us a lot of public money. More importantly, it enables that stage of a person’s life to demand less of the allied services than they would otherwise.  And there are knock-on consequences of a lack of care – as we know too well, now that we see how hospital beds can become unavailable for the next unwell persons who could use them. There is always a price on what we don’t do or provide, as well as what we do. On the other hand, are we becoming hooked on the whole idea that somebody ought to be caring for us? Are there, in other words, expectations which have been raised in the modern world which simply cannot be met? The fact that we pay for care so poorly suggests we value it at the most basic level, if at all. Or has it been consigned to that type of work which is held to be vocational? The sort where the workers should be content with getting very little pay since their reward is the joy of doing the work?

There are few straight-forward answers to these questions, but they all matter. As a starting point I want to suggest that we need to get much straighter in our minds about what services the state should offer. When that has been cleared a little, we need to focus much more on the psychology of the caring relationship in order to improve our selection and training of carers. If we can only manage to find fewer, better paid and qualified people with some standing in the community in the same way as teachers, nurses and social workers are valued,  who can really do this job, that may be a better compromise than spending more public money on creating fresh opportunities for clients to be badly served or even defrauded or abused. A good starting point for employers looking for carers, and trainers working with them, might be to concentrate on an understanding of the value of autonomy and how to encourage it in carers and their clients. They might also in their programmes provide spaces to think on the de-merits of a false independence, in which we proudly claim that we need nobody, but actually demand all kinds of things of others without even noticing it!

Recovering from an operation

I am now back at work after major knee surgery,  and so there is a gap since the last post. It has been a thought-provoking experience. I had not felt so vulnerable for a long time - very dependent on the surrounding people to make things happen, from the trivial: "Could you bring in the post?" to the major concern like getting to the hospital on time, despite traffic, for an outpatient appointment - of which there seemed many.  The first one came so soon after discharge that I wondered why they had bothered to send me home.

I had at one level too much time on my hands - fortunately after three weeks convalescing at home I no longer felt ill - and, at another level I had no time to do what I wanted to do because there was always something intervening, like doing exercises, taking the endless pills, eating at the time convenient to the carers, etc. I had an enormous sense of relief to take back the management of my own life. But this did not seem real until around six or seven weeks after the operation, which is the longest time I can remember since childhood in which I so depended on others for basic things like help to put my shoes on.

It seemed real when I could finally decide how I would spend my time that day, when I would eat, when I would pop out to the shops. Driving was almost the last thing to return. I was advised by the medics not to drive before six weeks of recovery had elapsed, and I took this advice. But driving gives me a huge sense of freedom which I had almost forgotten because I had so taken it for granted for years and years. For a while I recaptured that delightful state in which every small thing gives pleasure - deciding what to eat for lunch, sliding into a convenient space in Sainsbury's car park. I kept wanting to behave like a kid and say, "Look, mum, I  can do it!"

A few feelings and ideas remain that came out of that period. One was the fairly obvious realisation that I am much more dependent on the surrounding community than I care to admit. Less obvious, but striking for me, was realising how much my concentration improved when I was forced into not trying to do so much. When spread-eagled on a sofa you have limited choices - can't butterfly your way through a day, doing this, that and the other, often all at the same time. It doesn't work. If a decent book is available, you had better read it, especially if the only other option is daytime TV, the last resort of the hopeless. I realised I quite often 'read' while doing two or three other things at the same time. Or 'watch TV' while keeping my eye on the laptop, etc. This has to stop! I enjoyed things so much more when I was focussing on one thing at a time. Got some nourishment from them.  In my present state of much-improved mobility and fitness, I can feel the old bad habits creeping in - and I don't like it much. Some self-discipline will be involved, but I need to get back my sense of mindfulness, as the exponents of this practice like to call it. I suspect that we all suffer from the illusion that if we 'multi-task', we will somehow get more done in a shorter space of time. The women's movement made a virtue of multi-tasking for women and did us no favours. This is pure baloney, actually, since what really happens is that we half-do everything - skim over the surface of life - leaving a task to be completed some other time, which will just take time another day, or more likely be abandoned. Or we get used to being sloppy with everything, and thus quietly lower our standards and do nothing that gives us real satisfaction. Worst of all, we decide it takes too much time to think in any depth, and have no opinion about anything at all - which we are then obliged to rationalise as the virtue of a peace-loving mind. Which brings me to a more subtle point: what is the point of doing anything anyway? If it is not to achieve the pleasure and self-nourishment that comes from doing it. 

And if there is no reward involved, why am I doing it? "It has to be done by somebody," is a common response. Well, maybe - but does it have to be done by you? This comes up, frequently,
in psychotherapy sessions. Women especially seem to feel that they cannot possibly leave a job alone that a partner refuses to notice. If the partner has reneged on 'their job', they feel they have no choice but to do it for them.  This is simply untrue. You can leave the bins unemptied until somebody complains! And then refer the complainant to your partner! It's hard at first, but it gets easier with time, trust me.  "I get paid for doing it" seems to me to be an alibi for a doing a job you hate, rather than a reason. You have two options which are being discounted: one is to get another job, and the other is to find out what is likeable about the job you are doing. Getting another job may involve upheaval and sacrifice. Jobs may be thin on the ground in your field. But sometimes life requires you to take a risk, take the hit and move on. If that's impossible, then it is possible to find something interesting or at least tolerable about the job you are doing. My sister once told me that early in married life she realised that she would have to do a lot of washing up, which was not her favourite chore, but she decided that this being the case, she would learn to enjoy washing up. I thought this heroic at the time - have never achieved it myself - but it makes good sense if you can do it. Even then there are options - save up for a dishwasher, hire your partner for the task, or the kids. I notice my sister eventually took the second option - and good luck to her.

What mindfulness has taught me, though, is that there is magic in every moment, if I can bear to pause and consider it. And this is what I miss when I lose my concentration and start butterflying my way through life - trying desperately to do everything my brain tells me to do and failing to pause and reflect on what I really want to do, or how I really want to do it.