April 2011: Learning to Care: The Carers’ Sanctuary Magazine

Learning to Care: The Carers’ Sanctuary Magazine

I seem to have lived many different lives. I have studied and worked in various countries. I was a university student, part- or full-time, for 12 years; I have had several careers, from lecturer to business consultant; I have been a girlfriend, a partner, a wife and a mother. As I moved through these different phases of my life, I simply adapted. I seemed to know how to adjust to each new situation, more or less! While moving through these stages, there were other reasons why I had to adapt: at one point in a day I might be running relaxed tutorials on the nature of reality, while later on I could be shouting instructions in Japanese and pushing a karate class to kick higher, punch faster and stay alert. Then I would return home to be a mother, with hugs and cuddles before lighting candles for a family meal on a Friday night. All the time I was changing and adapting to the role I needed to embody, without thinking or even realising how much of a chameleon I was.

I was shocked, therefore, that I could not adapt to being a caregiver. For the first couple of years I did what was necessary. Everyone was looked after, warm and fed. But I was not easy with my new role. I constantly felt I was in a strange land with customs and cultures I simply didn’t understand.

I puzzled over my inability to fit into this new life, since it had always seemed so easy to slot into different circumstances before. So I started to revisit some of my old lecture notes and books. It began to make sense when I re-read my notes on how learning works. There is a theory called Situated Social Learning. In general, the idea is that we learn by spending time living various situations as we grow up. We might start by watching our mother bake a cake; then, we are allowed to stir the mixture; and little by little, we do more to help until we learn to bake by ourselves.

When I thought about my life, I realised that, little by little, I had learned how to be a good student, how to build relationships and all the other skills needed to live my various lives. However, at no point had I experienced the very specific set of circumstances that could have taught me how to be a caregiver. Yes, I had learned how to be a mother, first by playing with dolls, then by helping family and friends with their children, but this is entirely different from caring for a disabled adult. A mother has a set of milestones and guidelines. We have a sense of when most babies move from milk to solids, from crawling to walking, from childhood to teenage years. As a caregiver, you don’t have those markers. For many people, there is very little to guide them through the minefield of shaving a grown man for the first time, or lifting the dead weight of paralysed limbs onto a commode, or trying to interpret the sounds that used to be the elegant words of an inspiring mind.

This is why I created the Carers’ Sanctuary Magazine. I was sure that I was not the only one who was unprepared for the role of family carer. I knew that there must be others who felt the dislocation and alienation in this strange landscape that had become their home. As time has passed, I have learned and adapted a little more each day but talking to other carers, reading their experiences and learning from their stories has been an immense support. In creating this magazine, I wanted to provide an oasis, a sanctuary where a family caregiver could escape to a world where everyone understands, where we are all living in the same strange land, where we can reach out and help each other to feel at home.

I first published the Carers’ Sanctuary Magazine in April 2011. We are now re-launching it as a quarterly publication.  I hope that new readers will share their stories and that we can all continue to learn from each other.

 

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Neuro Hero        Neuro Hero Blog        Research and Hope        Carers’ Sanctuary magazine

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