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 …

Invisible friends

However much we have liked living in Holland, and however happy we have been with the health service here, there’s no denying that it is a major difficulty to deal with PD in a country where neither of us speaks the language comfortably. I, in particular, have missed having someone nearby who would not only be sympathetic and supportive in a generalized way, but who would really know and understand what it is we that have to live and deal with.

We know a very small number of people who have and are willing to talk about their (or their spouse’s) incurable degenerative diseases, and this has been immensely valuable and helpful for me. But the range of experiences is too small and none of them relate directly to Parkinson’s.

What I really want is to join a support group specifically for people caring for someone with Parkinson’s. Many of the national patient associations run that kind of group, but around here they are, not surprisingly, run in Dutch. Although my reading comprehension of Dutch is pretty decent, understanding spoken Dutch is much harder, and answering back is quite beyond me outside the kind of predictable exchange one has with a cashier or a bus driver. So I sadly had to conclude that support groups were beyond my reach for now.

How stupid of me! Do remind me: by what medium am I reaching you now? And might that same medium have something to offer me in the way of support? Oh yes, I have discovered the joys of the internet forum, and I’m hooked! There are several, with slightly different angles and ways of operating. Usually I go to the forum run by Parkinson’s UK, mainly because there is a separate section for carers and because the opinions and experiences of carers are generally welcomed everywhere on this forum.

It’s the most brilliant thing. There are people new to the disease asking anxious questions and people who have had PD for years sharing their experience and understanding of how it can affect you and how you can deal with it. There is moral support, and concrete suggestions, and much considered thoughts. And there are lots of personal stories, some to break your heart and others to mend it again. There’s also fun and games, and misunderstandings and occasionally wrong ends of sticks firmly grasped, but that’s human interaction for you. For a non-Dutch speaker in Holland, it is – if not a life-saver – definitely a mind-saver.