I’d been reflecting that I was finding it hard to move on; 18 months since Dylan had moved to residential care and I’d managed hardly any of the things I’d told myself I was looking forward to. I wasn’t sure what I’d done with the extra time; in fact I’d written fewer poems, been to the cinema less often and swum hardly at all.
I seem to have spent a lot of time thinking about Dylan, I said to a friend. That’s understandable, she replied. You haven’t stopped caring full-time for Dylan emotionally just because you’re not taking care of him physically.
So I’ve been thinking about the relationship between the physical and emotional labour of caring for Dylan. One of the things I was concerned about when Dylan moved to residential care was that I’d forget how to look after him. I worried that I’d lose the rhythm of bathing and shaving him if I wasn’t doing it every day. I feared the habit of being alert might leave me; that I wouldn’t hear the change in his footsteps or sudden silence summoning me to check that all was well. I was relieved I no longer had to do all the caring single-handed but I envied those who had taken my place; the fruits of this labour would now be theirs.
And the rewards of physical caring, I came to realise, are rich indeed. In this blog post, written 29 days after Dylan moved to his residential setting, I reflected on the possibility that chores are a currency of care. If you have a disability that means you can’t take care of your own needs, perhaps care-giving acts, such as laundering clothes, acquire emotional freight? In the aftermath of Dylan leaving home, I realised that the physicality of caring for him had been a language of love.
I have learned that we don’t forget how to care for someone physically if we no longer do it every day; the rhythm is as deep in my body’s memory as climbing the stairs or swimming a length of the pool. The challenge is not remembering how to care for a person we love but finding a way of sharing responsibility for this. Perhaps, as a long-term single parent, I am less used to this than others. I have asked myself whether I would find it easier to share Dylan’s care with others if I had had to negotiate this with another parent while Dylan was at home. As I’m sure I’ve reflected before, there is something limiting as well as liberating about having sole care.
And although Dylan is 22 years old he does still need physical care; he has to be supported to wash, dress, eat and to access the activities which he enjoys. Since Dylan moved to residential care his ‘care plan’ has developed to reflect minor changes in his support needs; Dylan needs more help selecting appropriate clothes than staff realised, for example, but minimal supervision when organising his daypack.
Sometimes Dylan shows a new streak of independence. When I arrived to collect him from his residential setting at New Year he took off at high speed. Where is he going? I asked staff. They weren’t sure. A support worker followed him and returned with a smiling Dylan: He’d gone back to his bedroom, she explained, to fetch his water bottle.
I was absolutely delighted. The water bottle was new – a present from Santa – and I wasn’t sure whether or not it was something Dylan would use. It turned out that in the week since Christmas Dylan had got into the habit of filling it up each day and taking it with him on daytime activities. I could tell the present was a success – the fact that Dylan had remembered it, when we had not, indicated this. As we drove to the seaside to celebrate the new year I reflected that this may well have been Dylan’s most successful Christmas present this year.
I used to love listening to Alistair Cooke’s Letter from America on Radio 4. In one programme he introduced me to the term ‘not on my watch’, a plea which Cooke suggested American presidents made in relation to errors happening during their term of office. I have taken this phrase and applied it to my various responsibilities over the years, albeit for less-significant events. ‘If the course fails to recruit, let it not be on my watch’. ‘If the External Examiner isn’t happy, let it not be on my watch’. ‘If the children don’t have their lunch boxes, let it not be on my watch’…
The problem is, if you’re a single parent it usually is your watch. Sharing Dylan’s care gives the term more currency. I was thinking about this at new year because a breakdown in communication had meant Dylan didn’t have appropriate clothes for our planned trip. When I returned Dylan to his residential setting after the holiday I discovered this was because he is running low on trousers and needs to buy some more. I was feeling a bit grumbly about this as I settled Dylan back into his room after our trip to the seaside. I’ll do an online order when I get home, I said, hopefully they’ll come fairly quickly.
I didn’t like that we hadn’t noticed Dylan needed to replace clothes. We need a better system for keeping track of Dylan’s things, I said. And as I said that, something different but related came into my head. Dylan, I said, Where’s your water bottle? What happened to your water bottle? He looked at me, inscrutable. I’m pretty sure he knew what I was asking and what the implications were. I thought he looked a little sad, but perhaps I imagined this. I checked Dylan’s bag and the car but there was no sign of it. Staff must have worked hard to help Dylan build the water bottle into his routine and to look after it while he was out and about, I thought to myself. I’d been looking after Dylan for less than 24 hours and had managed to lose it. I’m so sorry, I said to the support worker. I’m afraid that was on my watch.
Later, when I looked at the photos from our trip, I could see the water bottle in the pocket of Dylan’s backpack while we were kite flying on the beach. Perhaps it had fallen out then. Still, I telephoned the restaurant where we had eaten dinner afterwards. They hadn’t got it. Those Jack Wills things are really popular with the young folk, the manager said. Someone probably picked it up.
Last month I noticed that Dylan’s railcard had expired so I took it home to renew. Last week I remembered that I hadn’t done it and went to get the expired card from the ‘to do’ tray in my study. No sign of it. That’s odd. I hunted around a bit. It hadn’t fallen on the floor. I hadn’t put it in a drawer. I couldn’t remember for certain when I’d last seen it. So much for keeping better track of Dylan’s things, I thought to myself. Now what to do? I searched though old emails for a record but drew a blank. I would have to sort this out: I had promised Dylan a train journey in the new year.
Can I have your Filofax please, Dylan? I asked him this weekend. Dylan loves his Filofax and carries it everywhere with him. He isn’t so interested in the daily records that we fill in (though he realises that they are important to us I think) but he’s very attached to the passes, tickets and concessions cards which he keeps there. As he gave it to me the Filofax fell open at his travel cards and to my amazement there was his rail card, neatly filed in its place. Dylan must have seen the card in my study and taken it back – keeping track of his own things, taking responsibility. Rather than just remove it again, this time I took the time to explain why. Dylan probably keeps better tabs on things than we realise.
As I reflected at the start of this post, I might not look after Dylan full-time but I spend a lot of time thinking about him. This week, I’ve mostly been feeling bad about that water bottle. This is a small thing, I know, but I’ve been surprised at how much a lost water bottle has taught me about sharing Dylan’s care. So while Dylan and I were shopping for clothes yesterday I encouraged him into the shop where I had bought the original. Dylan seemed delighted and quickly picked out an identical replacement. Hopefully I’ll be a bit better at keeping an eye on it this time, at least until Dylan has built it so firmly into his routine that he looks out for it himself.
The photographs of Dylan flying his kite were taken in Cleethorpes on New Year’s Day