Who cares about carers?

MARIE: The ex-pat life may sound quite exciting and even, at times, glamorous, with all that jetting off to see foreign friends (strictly on budget airlines) and conducting daily life among the natives in little-known languages (and with appalling grammar). The reality, of course, is rather more pedestrian and involves far more hassle and incomprehension than it does cultural highlights and insights.

However, it does give you an excellent vantage point from which to discover what your home-pat culture is actually like. And I have discovered that, part from the pickled herring and consensus politics, Danish culture also involves a striking blindness to the position of the family carer – to the point where there isn’t even a word in Danish that matches English “carer” and American “care-giver”. And that’s where we’re moving to?

I have found several very useful books in English – chief among them Hugh Marriott’s book The Selfish Pig’s Guide to Caring – but find vanishingly little self-help literature for carers in Danish. As I wrote a few weeks ago, I get huge benefit from participating on the internet forum run by Parkinson’s UK, particularly the special section for carers. Again, nothing similar exists in Denmark. I’m glad I already have all these resources in English that I can turn to for help.

Then I read a book by a Danish journalist whose husband was diagnosed with aggressive ALS (motor neuron disease) shortly after their wedding and was dead within a year. Although ALS is very different from Parkinson’s, there was so much in this book that resonated with me and spoke to concerns and frustrations I had also had. A while later, I spoke to the daughter of a man who had a slow and difficult death from cancer, and she too had found a great deal in the same book that she had identified with and that had helped her understand and accept her thoughts and reactions. Okay, this is a really well-written and well-considered book, but there’s more to it.

I realized just how much carers and relatives of the long-term ill have to give each other – whether the disease or condition is chronic or terminal, mental or physical, the result of an accident or a slow progression. I reckon it’s therapeutic to tell your story, to make sense of what has happened in your life and to begin to take the sting out of it by structuring and retelling it in a way that slowly incorporates this story into the longer storyline of your whole life. And I reckon it’s equally therapeutic to read these stories, to learn how others have dealt with and overcome difficulties, and to realize that the feelings that pain you and shame you are common to many and can be survived.

So what I’d like to do when we’ve moved to Denmark is collect carers’ stories and publish them so other carers can learn and benefit. I’ve spoken to a few people already who seem to think this is a good and useful project and who have offered their help. I get lots of different ideas, most of which bob around for a few weeks and then sink without a trace, but I really hope this turns out to be one of the viable ones. To be continued …