Learning How to Share the Care of Your Child

When you’ve cared for someone for almost 25 years, you’ve been the one to ensure all their needs are met, made all their medical appointments, attended them all and arranged every aspect of their care yourself…….…how do you hand over the reins and let someone else take control?

I can tell you it’s not easy. In fact, that’s a whopping great understatement. Some people may be under the illusion that it’s a relief to hand over responsibility but emotionally it’s too difficult to feel any sense of relief at all.  

Of course, as a full-time carer there are many mundane tasks that need to be undertaken on a regular basis. Things like washing out feeding tubes every morning, ordering enteral feeding supplies, collecting repeat medications, organising agency support, ordering continence supplies etc etc, the list goes on.  

When James first left home and moved in to supported accommodation in April last year, I would occasionally ask his staff have his pads come?, was his milk ordered?, does he have enough medication? It wasn’t that I didn’t trust them to do those things, it’s just hard when you’ve been the one doing it to suddenly stop and hand it all over. In time, when I could see that those things were being taken care of, I stopped asking. And yes, now I can say it’s nice not to do it. That’s the practical side of things and unless there are any issues, James’ staff keep me informed on a need-to-know basis.  

When the Unexpected Happens

As we all know, life has the habit of throwing us the odd curveball, things that happen totally unexpectedly and out of the blue. They catch us off guard and unprepared. Like the morning in February when James’ then home deputy manager, rang me to tell me a lorry had gone into the back of James’ car. As she said the words I swear my heart skipped a beat. We’ve all had those phone calls from school or respite or day services and usually the first thing the person on the other end of the phone says is, ‘It’s ok, so and so is fine.’ However, the person ringing me didn’t say that. I was (unusually for me) rendered speechless. It was only as she went on to explain that the lorry hit the car as it was turning into his home driveway, that I realised it had happened after James had been dropped at his day service and that he was not in the car at the time. As the relief washed over me my concern was then for the member of staff I knew had been driving. Understandably, she was very shaken but otherwise unhurt. James’ car however was not in a good way. 

As James has a Motability car staff then went about contacting the appropriate people to assess, take away and arrange repair of James’ car. This was one occasion when it was nice to sit back and let someone else take charge.

More recently, sat at home one evening, showered and in my pyjamas, my mobile rang. Up popped the name of James’ home area manager. It was 8.25pm but I wasn’t alarmed. Not that was until he told me James had had a seizure.

History of Seizures

James used to have seizures when he was younger. The first was at 18 months old and then he had them regularly for a few years before they stopped. He never had another one until February 2019. On that occasion it was attributed to some medication he was on that had completely messed up his sleep pattern and it was felt this had lowered his seizure threshold. Since then, he has remained seizure free. He has generally remained well apart from coughs and colds and even when he had Covid earlier this year he still had no seizures.  

The guy that rang me that evening was instantly reassuring. He clearly explained that an ambulance had been called but that James had come round and was being supported by his care staff. Also, that both he and another manager were on their way to the house themselves. I didn’t panic, I’m not really a panicker. As we spoke, I was momentarily tearful as the news sank in but I instantly pulled myself together and called my husband to say we needed to go to James’ house. Whilst I threw on some clothes, I then received a call from the Company Director of James’ home ensuring I had been contacted. 

Relief

The drive to James’ house usually takes 20-22 mins depending on traffic. Unfortunately, on that particular night overnight roadworks meant we had to take a long diversion delaying our arrival. When we did get there we found James with his night staff and the area manager. James was wandering around his flat. He clearly wasn’t himself, though it was a relief to see him up and about. We stayed with James and waited for the ambulance to arrive but it became apparent as time went on that James was very tired and needed to go to bed, but he wasn’t going to do that while we were there. We left James so his night staff could get him settled in bed and we went downstairs and chatted with staff. With no ambulance having arrived we made the difficult decision to come home. I felt helpless, there was nothing I could do for James but it didn’t feel right just leaving him. Staff assured me they would call me immediately if there was any change. As it happened, James slept well. I didn’t. I regularly checked my phone and the company’s Care Control App for updates during the night. I was relieved each time to see James was sleeping and I had no calls either. As they say ‘no news is good news.’

Staff and I had already agreed that night that however James was in the morning he would stay home from his day service the next day and be monitored closely as we had no idea what had caused the seizure. Incidentally, the ambulance finally arrived 12 hours after being called when James was in the bath the next morning. James, staff and myself have since attended a GP appointment where it has been deemed appropriate to refer James to the neurologist. Further investigations in respect of blood tests are also being discussed along with ongoing support around behavioural issues from the Learning disabilities team. 

This was the first time either myself or James’ dad have not been with James when he had a seizure. It wasn’t a nice feeling, it wasn’t a good phone call to get, I hope I don’t get too many of those. Realistically, I know it’s likely to happen at some point in the future. James is 26 years old but he’s my baby, he’ll always be my baby, he’s non-verbal and vulnerable. It upsets me whenever I have felt he has needed me and I’ve not been there. There’s always an element of guilt that you weren’t there. This is also the first time anything like this has happened since James has moved from our house. But I do know that even if James were still living at home with us situations like this could happen at any time when he is not with me. It’s not possible to be with him every minute of the day and as hard as it is not to, I don’t think you can beat yourself up about that. 

Recovery

We spent time with James the day after his seizure. He looked tired and still not quite himself but he was ok and doing his puzzles as he normally would. He spent most of the following  day with us too and was actually much brighter and very happy which was really good to see. It’s obviously still worrying that we don’t know what caused this latest seizure, and we know it could happen again at any time. Myself and James’ staff are pushing for the follow up investigations to be done but it is likely to take some time to organise those. That’s where I am finding it most difficult at the moment because I am used to taking full control in these situations, so I’m trying to learn to sit back and let others take the lead. That said, I am James’ mum and I’ll do what I need to do, and if that means treading on anyones toes then I’ll apologise for that but it won’t stop me. Ultimately, I do know that the people that care for James know that, they know me and like me I believe they do want the best for James.  

I think it’s fair to say that letting go, learning to share responsibility for James is a ‘work in progress’…….I think it always will be.