Supporting someone into care, I am realising, raises all sorts of issues which are not just about care-giving in a practical sense (washing, dressing, feeding etc) but about cultural practice. So when Dylan moved into his residential home he didn’t only bring his care needs (to be supported to bathe or to access the community safely) but a complex web of socio-cultural practices which have developed during his life time.
By socio-cultural practice I mean (at its simplest) Dylan’s lifestyle: his leisure activities in and outside the home; the holidays he takes; where he shops; the cafés he uses; his choices about diet and clothing etc. Embedded in these practices are values; Dylan has, over the years, become acculturated to certain rituals (such as a blessing a meal) and to the particular models of social interaction he has been exposed to (holding doors open for others, for example). It is these practices which connect Dylan and I in the web of our shared lives.
Although many of my reference points are also Dylan’s, not all our values and cultural practices are shared however. I sometimes think of ‘autism’ as a culture in its own right, with its own social and linguistic norms, some of which compete with my values and beliefs. Furthermore, as Dylan builds a separate life, independent of me, his socio-cultural practices will evolve. The fact that Dylan has moved into residential care (rather than any other setting) will affect his developing beliefs and practices; the community he now lives in will influence his life differently to the way it was influenced by the time he spent with me.
While it’s relatively easy to let go of responsibility for care giving, it’s much harder for me to give up my sense of shared values and beliefs. So yesterday, when I wondered if my ‘small niggle’ was important enough to act upon, the question I was asking myself was whether my concern was one that Dylan was likely to share. Would I really be acting for Dylan? Or was this more about me? I decided, in this instance, that the thing which was bothering me was my stuff, not Dylan’s.
There is a sense in which supporting a relative into care is self-illuminating. Because the process has required me to think about and articulate my life with Dylan in some detail, I have found myself reflecting on the values which underpin my preferred ways of supporting him. The way we care for someone is an expression of our own values and beliefs as well as those of the person being cared for; in sharing the care of Dylan with others I have to make space for alternative perspectives and practices.
Some of our socio-cultural practices, however, are so embedded they feel less negotiable. Religious beliefs, for example, might claim a particularly defended space. I remember that the factor which made the difference to my Grandmother finally agreeing to move into a care home, shortly before she died, was the fact it was a Methodist Home. My Grandma’s faith was central to the way she lived her life; whereas she had previously resisted suggestions of a move to residential care, she was comfortable in an environment where her values and beliefs were shared.
So today I have been reflecting on the cultural practices which I consider to be embedded in Dylan’s life. Which changes to practice have I resisted? Where are the potential areas of conflict – the things I haven’t dismissed as ‘teeny weeny niggles’ but acted upon? I found several issues in my emails and scribbled notes to myself but two things seem to have particularly preoccupied me in the weeks since Dylan moved to residential care: food and clothes. I’m not at all surprised by the former but the latter may need a bit of unpicking. Today’s question to myself, though, is how do I know that these issues are as important to Dylan as they seem to be to me?