The idea of what a carer (or partner or parent or child) of an ill person should be is powerful.
It embodies an ideal which people want to live up to.
It sets standards against which others may be judged.
It may at times reflect real capacities of real people, but mostly it is an unattainable ideal. The reality is troublingly different.
What is an Ideal Carer?
An ideal carer thinks only of the person who is ill, never of themselves.
(If they do think of themselves, it is only because the ill person could not manage without them, so they know they need to attend to their own bodily needs when absolutely necessary.)
An ideal carer takes care of everything that needs to be taken care of, without complaining or minding or resenting any cost to themselves.
(Indeed, they are not aware of any cost to themselves, since that would require thinking about themselves for a minute, and an ideal carer does not do that.)
– has no emotional needs of their own.
– can survive entirely self-supported, without need for anyone else, least of all from the ill person.
– can bear, with a smile and a deflection, perhaps, not only the distress of, but even the most vicious attacks from the ill person themselves, and be happy and grateful for any recognition of their contribution, however grudging, late or uncertain.
– enables the ill person to remain in the world for as long as possible, at whatever cost to the carer (but this cost is of course not counted, see above.)
– enables the ill person to maintain their independence – or a fiction of it – for as long as possible, since dependence is known to be unbearable and only something that applies to children or weak people – and the ill person cannot be seen as weak since this would be degrading. Everyone has to be strong.
– is strong.
– may occasionally tell a friend that they are not really ‘fine’, but only briefly, and only if immediately followed by: ‘- and how are you?’
The film Amour touches on many of the issues affecting an ideal carer. In the film, an old man cares for his wife until she dies. Having tried professional carers, and rejected both them and the ambivalent support of their daughter, he relies entirely on himself. He struggles to feed his wife as she refuses food. He supports her in her wish to live, against her expressed wish to die, until eventually he sees her as struggling impotently against a world which is ignoring her wishes; he then helps her to die. He closes off the evidence of her death and then quietly dies himself, needing nobody’s help, thinking only of his wife; leaving his beautiful home to his daughter – who finds herself in an empty appartment.
Where does this ideal come from?
Is it a child’s-eye view of actual parents, when those parents were, however momentarily, just the parent the child wanted? Or perhaps of another child’s parents, seen from a distance?
Is it just the opposite of real, fallible actual parents, at those times when they failed to be the parent we wanted?
Is it a view of the parent we always wanted to be, knowing we could be better than our parents and we would show them how they should have been to us? (So we use it bolster our own superiority over our parents – and would be devasted to discover we were no better than them, after all?)
Is it based on real observation of real ‘saintly’ carers, seen from afar, or somehow capable of hiding their darker side from us at the time? Or whose ‘darker side’ was seen but was not connected to the ‘saintliness’? (A grandmother who looked after her daughter like a saint – but who terrified their grandchild or other children, making them feel deeply unworthy, for example?)
Is it based on what we wanted (or thought/knew we needed) when we were ill?
Is it influenced by our reading? Little women comes to mind. Or Sunday School/ Boy Scout /Girl Guides teaching? Or newspapers or television? (I think if we were influenced by these, it is because our minds were ready and waiting. )
The idea of complete selflessness is attractive; if we were not aware of our own needs at all we could be ideal daughters, sons, lovers. Except that, actually, parents and lovers also at times benefit and even enjoy supporting and giving attention, affection, consideration, thought. (There are so many ways in which it is better to give than to receive.) Adult children can appreciate giving care and support too; even small children can enjoy ‘being helpful’ if not overburdened by it.
If the people we loved and needed were completely selfless they would be able to think about us all the time.
This ideal contributes to the difficulties faced by carers – and by people who are or have been ill.
Confusing this ideal with the reality of being a partner or carer of someone who is ill can disrupt relationships.
It can mean that people do not understand each other. The ill person ‘knows’ how a carer should be, and cannot understand why their partner is not like this. The partner ‘knows’ this is how they should be, and cannot bear to confess how differently they feel or how differently they are behaving.
It can also mean that the carer does not understand themselves. This ideal may contribute to self-blame, self-doubt, confusion, anxiety – even to suicidal feelings.
Hiding the differences between the ideal and the reality can lead to serious loss of contact between partners or carer and cared-for. When real mutual understanding would feel too painful, too threatening to the relationship, a pretence may be kept up as long as possible. But this itself threatens the relationship.
Distressed carers can begin affairs in an attempt to block out their failure to live up to their ideal as carers. (Affairs can also be an attempt to seek life (represented by sex) as a defence agains anxieties about loss of life).
Affairs, or alcohol or drugs or other addictive activities may also be used to avoid recognising the worst aspects of the self – those which do not fit with the ideal carer.
Efforts to deal with the ‘failure’ to live up to the ideal can include turning to someone outside the relationship for understanding and support, (rather than oblivion, forgetting, or simply respite) in the hope that this will be less damaging than admitting it to the ill loved person.
Even when these other relationships do not threaten the capacity to care – and may in fact make it bearable – they have the potential to create jealousy in the ill person. The carer has a choice: include the ill person, tell them about the relationship and the understanding and support which is offered ; or keep it from them, hide it. Either path can create real, painful problems. (Illness makes people feel bad, however they try to deal with it.)
Illness can create behaviour and feelings which conflict with our ethical codes.