Whether we plan to have a child or it comes as a surprise we all know we will care for them for around 18 years, and care about them for the rest of our lives. So what makes someone a “carer” for their own child?
When we decided to have a second child our daughter was just over 18 months old. I’d read that up to 3 years was the maximum age difference to have siblings who could play together. I fell pregnant soon after. I’d anticipated with two young children I may take a career break for a few years until maybe they were full time in school. I knew I had that option and I could return to the job I loved. Instead I became a carer and gave up my job and career altogether.
What is it that makes me a carer then instead of just a parent to two children, which is a pretty full on role in itself?
According to the NHS England website “A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.”
Thomas spent his first 3 weeks in hospital, initially with an infection and investigations carried out into the cause of his small head and brain and also had emergency bowel surgery in that time. (See my earlier blog The Path to Diagnosis). We knew then from the beginning our experiences with him would be very different to that with his sister but we didn’t know quite how much.
As a baby then we were aware Thomas may have difficulties but once he recovered from his surgery he was almost like any other baby for a short while. Except he did have silent reflux and slept terribly. Before long though we had the input of therapists such as physiotherapists, speech and language therapists and occupational therapists. Thomas didn’t gain head control during the typical time frame and he had signs of spasticity. We also noticed he didn’t track objects and his eyes were often nearly closed. He was registered sight impaired at 6 months old.
From nearly the outset then things were different, with many specialists involved in Thomas’s life. This has meant for me, attendance at hundreds of appointments over the years and liaising with all the therapists and specialists.
So where are we now? With Thomas at 10 years old why am I his carer as well as his mum?
There is not typical day or week although some things are routine. Thomas attends a special school full time and a lot of his therapy takes place there. However, there has to be liaison with us and we certainly want to be aware of what has been advised. Communication has to be the same at home and at school so I have to work closely with the Speech and Language Therapist, his school teacher and teacher for the visually impaired. Recently, as Thomas has had yet another Speech and Language Therapist, everything had been reviewed and I’ve taken a lot of time to update his eye gaze equipment and created laminated cards for Thomas to use with his e-tran frame for eye pointing.
There are additional appointments outside of school such as at the hospital, including the specialist children’s hospital, which is a 2 hour drive away. Thomas has had various operations there. Thomas has also been there in the last year to see his neurologist, for an MRI of his brain, for an ultrasound, and for an appointment with the physiotherapist from the orthopaedic surgery department. These take a whole day, with the travelling.
Day to day then what makes me a carer? How does life differ with Thomas to his sister? As mentioned, Thomas is in school full time, except for appointments. His sister, at his age, would have been getting herself ready for school. Thomas needs everything done for him. Often I have to wake him. He has been on a tube feed, via pump overnight so that needs stopping, and disconnecting. The feed is then packed to go to school to finish during the day. Thomas then has two medications via his tube and his tube is flushed clean with water and disconnected from him. Thomas is incontinent so he needs a fresh pad and cleaning up then I dress him. He is then hoisted into his wheelchair and positioned correctly. He wears splints on his legs and these and his shoes need to be put on. He also has hand splints which need putting on. Then to brush Thomas’s teeth and he’s ready for school.
After school Thomas does have respite care two afternoons a week and sometimes his Nanna looks after him. He needs someone with him basically all of the time. He also needs three medications before bedtime. We do different activities each day but the routine one is his daily bath. Obviously Thomas needs someone to prepare him and his bath. There’s therefore the obvious things like taking off his leg and hand splints, hoisting him on to the bed and taking off his clothes and pad. As well as the practical things he also enjoys his “Bedtime” story massage to prepare him then stories afterwards such as massage and sensory stories.
To prepare for going to bed Thomas has his feed set up on his pump and it needs connecting to him. The site where Thomas has his “button”, which the tube connects to and which goes into his stomach, needs daily care and cleaning. The “button” is kept in place in his stomach by a water filled balloon, which needs the water changing weekly. This means holding it in place, taking out the water through a port with one syringe then filling it with another. Before bed Thomas then has the third of his afternoon medications.
For bed Thomas sleeps on his side. We have tried and failed to get him to sleep on his back, positioned with equipment to aid his posture, which is used when he lies on the bed for stories etc. Instead he is aided by other equipment to position him correctly on his side. He goes to bed at 6.30pm, which seems early for his age but he settles down then and often still needs waking for school in the morning!
Thankfully, Thomas sleep has improved and he doesn’t wake too often. When he does, he is turned onto his other side and repositioned. He does require medication in the night, at about 8pm and 10pm. He has historically vomited often due to reflux or his pad leaks and we’ve had to strip the bed in the night on some occasions and many mornings.
It’s exhausting sometimes having to do all these things for Thomas and to think about doing them forever. I had no medical background but I’ve had to learn nursing, physiotherapy, speech and language therapy, occupational therapy and a lot more besides. Then there’s all the paperwork – the form filling, the letter writing and emails.
So many families like ours have had one parent give up work. It is very difficult to hold down a job. I have only just returned to work and it’s a big juggling act with my husband and his work plus the respite and my mum. It’s not possible for many.
For the carers who can’t work then the alternative provided by the government is £67.70 per week Carer’s Allowance. For that you have to be caring for over 35 hours per week. That’s £1.93 if it is only 35 hours a week. Most carers will be doing much more. If you work and earn more than £128 a week you can’t claim, even if the rest of your time is spent caring. Carers who want to work find it very difficult to find a job that will work for them.
I didn’t sign up to be a carer. I had no choice. I sometimes wish I could just be Thomas’s mum, but then I know that I’ve learnt so many skills and had so many good experiences as his carer too, that it’s shaped who I am today. It’s made me a better person. I just wish society valued us more.
This week is Carers Week. Organisations such as Carers UK, Carers Wales and the Carers Trust support unpaid carers. #CarersWeek