The Go-Between – By Olly Double
I make no secret of the fact that Jacqui is better at dealing with type 1 diabetes than I am. Way back in 2000, when our younger son Tom was first diagnosed, she learned how to do insulin injections at the earliest possible opportunity so that we could discharge him from hospital and take him home. She would read as much as she could about diabetes so that she had the best knowledge available for looking after him. She got involved in the online diabetes community and healthcare campaigning. I tried to follow her lead, but in those early years I found that when I tried to read books about diabetes, after about a page and a half I’d start feeling depressed about the fact that my lovely son has a chronic health condition and put the book down, never to return to it.
Life has changed a lot since then, not least in the fact that our older son Joe was also diagnosed with diabetes in 2005, and I’m a lot more switched on about it than I was. I’ve managed to read a number of books about diabetes from cover to cover, and not only do I read Diabetes UK’s magazine Balance, I even write a column in it. However, the fact is that Jacqui’s still far better at diabetes than I am. If bringing up diabetic kids was Jedi training, Jac would be Yoda and I’d be Jar Jar Binks.
That’s not to say that I’ve left it all to her. In fact, I learned how to inject very soon after she had, and we’ve always shared the blood glucose testing and the injections. When Joe and Tom went onto insulin pumps in 2008, I attended pump school along with everybody else, and in fact when we were all offered the chance to try the pumps out with a saline solution – even Jac and me – I was the first in the family to have an infusion set inserted into my body. The fact remains, though, that when it comes to dealing with type 1 diabetes, Jacqui is the real brains in the operation.
One of the jobs I’ve always taken on is to check the boys’ blood sugars before we go to sleep at night. This used to be a case of going into their bedrooms and testing them while they slept, sweetly oblivious to the whole process. Now they’re both lanky teenagers they tend to go to bed at the same time as we do, so it’s more a question of asking them to test themselves and let us know what they’re on. This normally takes a few goes.
‘Tom, can you test your blood sugars and let us know what you’re on?’
‘Yeah.’ A few minutes pass.
‘Tom, have you checked what you’re on?’
‘Give me a minute, I’m just cleaning my teeth.’
‘What were you doing before?’
‘Packing my bag for school.’
‘It’s just that I’m tired and I’m waiting to get in to bed, but I want to make sure everything’s OK with you before I do.’
‘Why don’t you check what Joe’s on first?’
‘Yeah, all right. Joe, can you check your blood sugars and let me know what you’re on?’
‘Give me a minute, I’m just packing my bag for school.’
And so on.
The real problem comes when their blood sugars are out of range for no obvious reason. Let’s imagine Tom’s on 13.8 mmoml/L. I ask him to see if the bolus wizard on his pump will allow him a correction bolus, and he says no. ‘What should I do?’ he asks. I think for a minute, realise that Jac’s more likely to come up with a good solution to this than I am, and trot down the small flight of stairs from the top floor to our bedroom.
‘Tom’s on 13.8, his pump won’t allow him a correction, what do you think he should do?’
She thinks for a few seconds, sorting through all that stored knowledge acquired from years of experience and reading and research. ‘Get him to check his bolus history, and make sure he remembered to bolus for the snack he had.’
I trot back up the stairs. ‘Can you check your bolus history and make sure you bolused for that snack?’ He checks and confirms that he did indeed bolus for it.
I trot back down the stairs. ‘He says he did bolus for it.’
She thinks again. ‘Get him to check how much active insulin he has.’
I trot back up the stairs. ‘How much active insulin do you have?’
He checks his pump. ‘3.2 units.’
I trot back down the stairs. ‘3.2 units.’
‘Yes,’ says Jacqui, sagely. ‘He’ll still have his dual-wave going from eating his dinner, and the extra insulin from his snack. Still, he’s not had PE today and he’s not been to youth theatre, so his blood sugars are unlikely to drop suddenly. I’d say get him to give himself a half correction.’
I trot back upstairs for one last time to relay the instruction to Tom, before coming back down and finally getting into bed. The whole process of being a go-between for Tom and the Yoda of diabetes has taken so long that I half expect the alarm to go off to tell me it’s time to get up even before my head hits the pillow.
Actually, I’ve got so fed up of this rigmarole that I’ve started cutting myself out of the process. This doesn’t mean making Jac get up and go to talk to Tom directly – once she’s in bed and stuck into whatever she’s reading on her Kindle, it’s beyond my power to shift her – but rather getting Tom to come down from his room and talk to her.
Yesterday, something happened that made me realise that I’m still not that much more than a go-between when it comes to really knowing how to handle diabetes. Joe had gone off the library to revise for an exam, and Tom had got the bus to the Gulbenkian Theatre, where he was watching a matinee with his youth theatre group. Jac and I had put a film on the telly and were about three quarters of the way through when the phone rang. It was Tom.
‘I was on 18 when I went into the theatre. I had a full correction bolus and now I’m on 23. Can you come and pick me up in the car?’
Without missing a beat, I said, ‘Don’t worry, I’ll come and get you straight away.’
I told Jacqui what was happening, and she said she’d come with me. ‘He should probably correct with an injection, so we should take an insulin pen,’ I said, as I put my shoes on. I looked up and saw that Jacqui had already got out his insulin pen and was attaching a needle to it even as I spoke. ‘Oh, you’re way ahead of me,’ I acknowledged.
We drove to the theatre as quickly as we could, and found a space in the car park. ‘Do you know where you’re picking him up from?’ asked Jac.
‘I said I’d meet me in the theatre café.’
‘I’ll stay in the car,’ she said, as I grabbed the insulin pen and opened the door. Perhaps she wanted to see how I would handle this without her? Some kind of Jedi test?
It took me a minute to find him, and – reassuringly – a couple of staff from the youth theatre had stayed with him to make sure he was all right while he waited for me, and had made sure he had plenty of water to drink. He was sitting next to his youth theatre buddy, Ben. I held up the insulin pen. ‘I’m afraid you’re going to have to correct yourself with this,’ I said.
He looked reluctant, and told me that he’d given himself a correction bolus just before he rang me and had come down by 3 mmol/L in the last half hour. ‘Do I still need to have a pen injection?’
Now I was a bit stuck. On the one hand he was still very high, but on the other, 3 mmol/L in half an hour is quite a fast drop. I couldn’t decide how to resolve this dilemma – which left me with only one course of action. I got my phone out.
‘Hi Jac. Tom’s fallen by 3 mmol/L in the last half hour, should he still have a pen injection?’
Even sitting out back out there in the car park, the intensity of her Yoda-like diabetes wisdom was utterly palpable. ‘Tell him to still inject, you must,’ she said.
Once more, I was the go-between. ‘Mum says you still have to have a pen injection.’ Tom very rarely uses an insulin pen now, so I added, ‘Can you manage, or do you want me to do it on you?’
‘I’ll do it,’ he said, resignedly. Maybe he didn’t want me to have to help him in front of his friend. ‘How much shall I do?’
‘Put your blood glucose level into your pump and let the bolus wizard work out how much insulin you need.’ I gently reminded him of all the things he had to think of. ‘I think Mum has already done an air shot, but you might want to do one anyway just to be sure. Besides which, Ben might want to see it because it’s quite spectacular.’
Tom dialled up a couple of units and squirted it out the end of the needle. Then Tom, Ben and I spent a moment admiring the trail of insulin that had cascaded out ten or twelve centimetres across the table. Now it was time to inject, and Tom was clearly slightly nervous. I offered to help him by pinching up the flesh on his arm, gathering up enough subcutaneous fat for him to inject the tiny, fine needle into. ‘Remember to keep it in for a few seconds after you’ve injected, so make sure it’s gone in properly.’ I said.
He inserted the needle into his skin and we counted to five together – just as we had when he was tiny and I was the one handling the insulin pen – then he withdrew it and put the lid back on.
Ben had never seen Tom inject before, and looked slightly shaken.
‘Tom’s hardcore, isn’t he?’ I said.
‘Yeah,’ said Ben, quietly. Then he turned to Tom and said, ‘I don’t want to sound patronising, mate, but you did that really well.’
After we’d driven home, Tom changed his infusion set and as the pen injection quickly brought his blood sugars back down towards a more normal level I saw him gently rubbing his arm a couple of times where the needle had gone in.
‘Does it hurt?’ I said.
‘Not really,’ he said, ‘but it felt horrible being that high.’
It was at that point that I realised it. However much of a pain it can be to be the parent of a teenager with type 1 diabetes, it’s infinitely more bothersome for the teenager himself. It’s far easier being the go-between than the one on the receiving end.