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The Other Side of Caring - Part 2: Exchange

13/6/2014

 
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Quite often, in the UK at least, the role of family (or unpaid, or informal) carers is talked about in terms of how much it saves the economy. So many £billions each year, the theory goes, that would otherwise have to spent by the state or individual on purchasing replacement care.


That approach has never sat easily with me. For a start, I suspect the reality is not that it would cost all that money to replace that unpaid care, but that if it wasn't provided most people would simply be without that support. If you could buy it, maybe you would - if it exists, that is. And the state (even in the days of a more generous welfare settlement than now) has never provided all needs for everyone. Don't get me wrong: I'm quite sure carers make an impact in some fiscal terms, not least how much paid staff reply on us to support them in their work.

They wouldn't see it that way, of course, but I lost track of the number of times I was asked to do something for my mum which was really essentially about my doing something that made working life easier for NHS staff - particularly hospital staff.

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I'm still not sure we 'save' the UK a lot of money. I think it might be we provide something that otherwise simply wouldn't be there. But if we want to focus on costs, then I do think that much of that vast 'saving' is derived from carers' bank balances. It costs family carers a huge amount of money - not least in terms of lost earnings and lost savings.  For all the positive workplace developments to support family carers to continue in employment, this is meaningless to the many carers who are self-employed: something that's surprising, given the increase in self employment particularly amongst those in their 50s, one of the age groups more likely to find themselves with a caring role. It's easy to assume that self employed people have maximum flexibility so there is no need for any support, but as a freelancer I can tell you categorically that the only flexibility I had was to have no income.


There's other reasons why I find this approach unhelpful. One is that actually quite a lot of what you do as a carer can't be replicated in the market place, so trying to work out a monetary value seems a little .... odd. I suppose it's symptomatic of living in a society that's so grounded in money.

Here's one example: my mum, as I've already mentioned elsewhere, had cancer. Giving her support - looking after her, and her home - being a carer - was very easy in terms of her personality. She was never a whiner (although lord knows she had just cause throughout her life): she was an upbeat person who stuck out her chin and got on with it - not in a stereotypically 'it's that generation' approach, but in a 'this is what is happening so let's do the best we can with what we've got' sort of way.


But even she had her bleaker moments. One afternoon, she was really down (which for my mum meant being very quiet). I went into the kitchen to make us both a cup of coffee, and when I came out I said: 'I've just invented a new dance - would you like to see it?'  'Yes please', she said, so I did it for her. 'It's called the Scottish can-can,' I explained, and whether it was my impression of bagpipes playing that tune, or my high kicking, or the simple truth that I was wearing a very badly fitting bra that day,  that made it so incredibly funny I'm not sure - but whatever it was we both giggled uncontrollably, and the bleak moment passed.

[Admittedly, there might be people who would pay to see that dance. But I doubt there's a service in the world you could buy it from: certainly not just at the point when it was needed.]

And that exchange between me and my mum is at the heart of what a lot of carers experience. It isn't a one-sided matter: we get, as well as give, even if the equation is sometimes (often) lop-sided. I gained a great deal by spending that time with my mum, and it cost me a lot - money, yes, bucketloads of that, and sleep, and a sense of peace and calm and certainty, and some sanity, undoubtedly.

It makes me think of the times I've talked, in my work,  with older people in care and nursing homes, and the question of how it came to be that they live there has come up. What's struck me, and stays with me, is the exchange that's gone on prior to that move, with family carers. Or, rather, prior to that decision. There are some - possible many - older parents living in care homes who in the end decide (or agree) to move in because they see it as part of their role as a parent. They want their adult children ('children' who are often also pensioners) and grandchildren not to worry about them. They want their family to have fun, and to make the most of their time. For some, moving into a home is simply an act of parenting - perhaps one of the last major acts they believe they will perform. They are looking out for you because they are your parent. That's not going to be true for everyone - because nothing ever is - but it is worth bearing in mind.

Being a carer isn't a one-way street. We can - and many do - get a great deal from the cared-for person. Sure, it can leave you exhausted, and distressed, and without money. Absolutely. That's not to ignore those facts. But not to explore some of these other sides of caring is to diminish why people care in the first place: is to perhaps turn it into an act of knowing the price of everything and the value of nothing.

And the exchange with my mum? However ill she became - and she did, tremendously ill - she was still my mum. She was still looking out for me, wanting me to be okay. Even in the last few days, when she couldn't speak much, still telling me what she'd like me to do next because she knew what would make me happy ('finish writing your novel'); telling me how to handle things because she didn't want me fretting or hanging on to things unnecessarily ('don't worry about the piano'). Over the course of the time I spent caring for her, she bought me a shirt (£16.99), and some shoes (£65.00) and she was pleased to do so, to give me something in return because she wanted there to be an exchange between us. She didn't want it all to be one-way. And she showed me, without saying a word, that I wasn't to be afraid of dying: and that what mattered - not just in the end but in all the years preceeding that end - was fun, and being interested in the world, and love, and company. And that's probably the most profoundly important exchange of all.





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    Lorna Easterbrook has been listening to - and sharing -  people's stories about their lives for a very long time.  

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