There is increasing pressure to evaluate things immediately. Have your students secured employment within six months of graduating? Did you enjoy this evening’s production? How would you rate your learning on this module? I tell my students that some of the things they are experiencing will make different sense to them in the future. I’m not saying an instant impression is worthless but I always regret that we don’t revisit our evaluations months (or even years) later.
And so it is the case when supporting a disabled adult to leave home. Although it is over three years since Dylan moved to residential care, I am struck by the extent to which transition is an on-going process and one that I am definitely still evaluating and adjusting to.
When Dylan first moved to residential care I set myself the challenge, during the first 100 days, of recording my feelings about the process. That created a rich picture of the minutiae of adjusting to Dylan’s move: my daily blog posts were full of laundry, food and bedtime routines. What I was too up-close to see at the time, however, was how exhausted I was.
Now I remember sometimes having to stop the car on the drive home from visiting Dylan, too tired to continue safely. There was a particular lay-by where I would sit, windows down, chanting half-remembered poems and songs to wake myself up. When I wasn’t visiting Dylan after work in those early weeks, I would be asleep on the sofa by 7pm. Perhaps my sleepiness was a mechanism for dealing with the emotion of the situation but I think I was also chronically tired after years of caring.
On the run-up to Dylan’s move to residential care I promised myself I would enjoy doing all the things I hadn’t been able to as a carer. I assumed I would be out and about, taking advantage of my sudden freedom to do as I pleased. What a mistake that turned out to be. Only very recently, more than three years after Dylan left home, have I found myself with a little more energy. I have started going out after work more often and staying up slightly later in the evenings. I am amazed how long it has taken me to feel able to do this.
Since Dylan moved to residential care I have phoned the home almost every evening. This is not something I’ve enjoyed doing (I’ve written about that here). An attempt to use Facetime with Dylan hadn’t worked, however, so a telephone conversation with staff was my only option and my need for reassurance about Dylan was enough for me to overcome my dislike of using the phone.
The calls have been a hit and miss affair. Sometimes I was able to speak to someone who had been working with Dylan that day but more often the member of staff had to look for information about Dylan ‘on the system’ . My experience has ranged from feeling reassured after a friendly chat to being upset by staff abruptness. Evening telephone calls from parents, I quickly realised, were not usual; even having established that nine o’clock was the best time to call, I knew my calls could be an irritation, particularly if staff were busy. They were important to me, however; this was my son and I wanted to create a space in my day to connect with him.
Although the calls could be frustrating they helped me to feel involved in Dylan’s life. This summer, however, I had to re-think my routine. In June I heard that I had won a Northern Writers Award which involved funding to be used to complete the book of poems I am working on. I needed to spend some time away from home, free of distractions, in order to get on with the project. At the artists’ colony where it was suggested I go for a week, however, I would have only limited and intermittent contact with the outside world.
What was I to do? I knew I couldn’t turn down the opportunity because of a routine which was (I knew in my heart of hearts) beyond its use-by date. As Dylan was not aware of my daily calls, he would not know I wasn’t calling the setting each day; the only impact would be on me. What was the point of me knowing whether or not Dylan was settled for the night? I couldn’t do anything about it. Staff would contact me in an emergency. There was no guarantee that Dylan wouldn’t get ill or have an accident while I was away, but it would be very unlucky. I knew I had to go.
So as not to spend my week away worrying about being out of contact with Dylan, I practiced for it the week before I left: I didn’t make any telephone calls in the evening or send any emails, other than responding to a request for information. The trial week helped me to break my evening routine and I coped perfectly well, while I was away, without a mobile network or internet connection. In fact I did more than ‘cope’; I had a productive time and returned with the confidence to go away again. Furthermore, I seem to have broken my habit; I haven’t made any evening phone calls since.
I report this because I am struck by how individual a process transition is for parents. I have no doubt there are a range of parental responses to a disabled adult child moving into residential care. Probably there are some parents who never make an evening phone call, some who call occasionally and some who make regular calls for a limited time. Perhaps some parents telephone every day for the rest of their lives, but I suspect this is rare. I’m prepared to accept my own extended transition period might have been a bit of an outlying spike in the pattern of parent behaviour, but everyone has to find their own way. I am very grateful that staff at Dylan’s care home allowed me to take the time I needed and that no one ever suggested to me that I didn’t call.
Although this is progress there is a downside as well. Since I’ve stopped making daily phone calls I don’t feel as involved in Dylan’s life as I did. Some evenings, to feel closer, I bring Dylan to mind and sit with gentle thoughts of him. I suppose this is not dissimilar to my meditations on other people I love who have moved away. In this respect it is, I suppose, a natural letting go.
There has been another ‘letting go’ recently; since the summer I have accepted a more relaxed approach to the dietary routines which have previously been an important part of Dylan’s care. This was triggered by our holiday on the Isle of Man where it was difficult, some days, to find a vegetarian option which Dylan wanted to eat. Two or three times during the week I let Dylan have a non-vegetarian option rather than ask him to wait until we found something else or were back at the cottage. This made eating in the community easier for Dylan and less stressful for me.
Although I never experienced Dylan’s vegetarian diet as a ‘problem’ while he lived at home, it has proved one of the most challenging aspects of his move to residential care. Dylan has a limited diet (only things which are beige and bland to taste and smell) but he eats with huge enjoyment (I have written about Dylan’s favourite foods here). When Dylan moved to residential care, something which was very important to me was that he should continue to eat familiar food which could comfort and support his transition. The psychological benefits of such foods are well-documented in relation to communities in exile and more generally.
My ‘100 day’ posts often focused on food and my frustration at the constant need to justify Dylan’s vegetarianism. At the height of the silliness, it was suggested that this might have to go to a ‘Best Interests’ panel for discussion as it could be considered a deprivation of Dylan’s liberty to eat meat. I asked whether Dylan’s diet would be similarly challenged if he were a vegetarian on religious grounds? When I claimed ‘cultural practice’ , however, I was asked to explain in what respect Dylan’s vegetarianism could be classed as ‘cultural’.
The constant challenges and explanations were wearing. Although the issue didn’t go to a Best Interest panel, in the event, Dylan’s vegetarian diet has been the focus of constant discussion at periodic reviews and whenever there was an ‘incident’ involving food. Many of the ‘incidents’ in relation to food turned out to be triggered by Dylan being offered unfamiliar vegetarian foods. So while he may love ‘vegetarian Kiev’, this is a particular brand of Kiev (quorn, entirely beige) not any old Kiev – and especially not a Kiev made from aduki beans (wrong colour, texture and flavour). So when Dylan rejected an aduki bean Kiev one night (and grabbed a chicken Kiev being eaten by another resident) it did not mean that he does not enjoy his vegetarian diet.
Well, I am rehearsing old arguments here. Although I found the issue of food the most exhausting and frustrating aspect of Dylan’s move to residential care, things did settle down eventually and fewer questions have been asked, recently. In this context, my relaxation of Dylan’s dietary rules this summer could seem odd. I am sure it surprised staff when I announced, at Dylan’s recent review, that I was happy for him to have a non-vegetarian option while he was out in the community if he preferred it to the vegetarian option. Having realised, while we were away, that this can be a sensible option, it seemed only right to apply the same principle to Dylan’s everyday life.
How do I make sense of this change of heart? Mostly, like the relaxation of my daily telephone calls, as part of the process of adjustment to a child moving into residential care. I think this is particularly relevant in the context of someone who lacks capacity. If Dylan cannot make informed decisions about issues such as diet, who should do so on his behalf? Parents are used to taking such decisions and, I would argue, continue to be best-placed to inform decision-making during transition. But over time (three years and three months, perhaps) it is probably right that a parent starts to step back and relax into a partnership approach. In this spirit, I have decided to trust staff to offer Dylan a vegetarian diet at the home but to have flexibility, if they need it, when out and about.
Is there any loss involved in this, as with the reduced telephone contact? I think so, yes. As I noted above, the food we eat reminds us of home; it connects us to our family and community and creates a sense of belonging and identity. Whatever a health care professional may say, I claim diet as ‘cultural practice’. In this respect, even a slight shift in Dylan’s separates him from home a little. But this is probably no more than the adjustments my daughter might make to her diet as she learns to live away from home. So perhaps it is a sign that, like his sister, Dylan has flown…
The photograph of the porthole window is the view through the shipping container I stayed in during my residence at Cove Park. The photo of the rainbow over Loch Long (featured image) was taken from my writing desk at the end of my week away. The other photographs were taken on outings and home visits during the last few weeks.