Why should my children care?

Jay Denton, a single parent with multiple sclerosis from Essex, UK, discusses the experiences that led to her children, Josh and Rebekah, receiving Colchester Youth Awards as Young Carers of the Year.

Josh and Rebekah with their Young Carers of the Year award

Jay Denton, a single parent with multiple sclerosis from Essex, UK, discusses the experiences that led to her children, Josh and Rebekah, receiving Colchester Youth Awards as Young Carers of the Year.

I had my first attack of multiple sclerosis (MS) in 1993; I was told at the time that it might be MS or it could be just a ‘one off' so no official diagnosis was made. Steroids eradicated all but one of my symptoms and unless I got very hot or very stressed, I stayed 99% well. As I hadn’t had any further attacks by 1995, my husband and I decided to start a family.

My son was born in 1996 and still I remained well; it was only when I was pregnant with my daughter in 2000 that my feet started to go numb again. The numbness worsened as my pregnancy progressed and by the time she was due my biggest fear was whether or not I would have the strength and stamina to get through the birth. Thankfully all went well and our family was now complete.

As Rebekah grew and became more mobile, I lost mobility. It was as though we were on opposite ends of a seesaw; she learned to climb the stairs as I lost confidence to carry her while going up myself. Josh was starting school when his sister was newborn and my MS returned. He would happily fetch and carry for me, saving my precious and finite energy, which I suppose was the beginning of my children becoming carers. I got my official diagnosis of secondary progressive multiple sclerosis in 2001.

For the next four years that was pretty much how life continued. My husband worked away a lot which meant that I was pretty much bringing the kids up alone. This wasn’t too much of a problem for me, as I am an independent soul. I had an agency worker who came to clean, change beds and do the ironing for me which meant I could concentrate my energies on looking after Bekah and Josh. In the early days my mum would do the school run for me, but I soon realised that my world had become impossibly small; I wasn’t going out as I didn’t dare drive with numb feet and even if I did go anywhere I could only walk 100 yards or so on my crutches before I’d have to give up and go home.

Helping out

So we invested in a larger car, had hand controls fitted to it, bought my first small mobility scooter and had a scooter hoist fitted into the boot. Getting these aids was, and still is, a lifeline to me. At the time my fatigue was minimal – well probably not much worse than most other young mums! So I took over doing the school runs, then added in nursery school runs, the weekly shopping (albeit online!), the cooking, the washing and the usual jobs of a stay-at-home mum. Of course there were times when I asked Josh to help out, but in my mind I told myself that I would be asking any child to help with small chores even if I wasn’t disabled. I have always believed that children should be encouraged to take part in all elements of family life, including the mundane chores, to ensure they grow up to be self-sufficient adults.

In 2005, my world was turned upside down when my husband left us. Thankfully, not much changed from a practical point of view, but the responsibility of looking after my family now fell squarely on my shoulders. My biggest worry was a financial one. I knew that I was not well enough to return to work, so I had to go through applying for benefits that would hopefully be sufficient for us to live on. To cut a very long story short, after five months of jumping through many hoops, radical downsizing and frenzied eBay-ing, the three of us settled down to our new life.

As my MS is secondary progressive I don’t have relapses and remissions, just a slow but steady decline in my health. Consequently, I am now at the point where my hands and arms get weak and fatigued quickly, I can only walk 20 yards on crutches before I have to stop and I regularly get ‘run over’ by the truck called Fatigue. Because of this progression, I now find myself needing more help around the house including things like food preparation and handling hot saucepans. Josh is now 14 and has a healthy interest in food and cooking which I have fully exploited! He now cooks for the three of us two or three times a week which I believe is a good foundation of learning for him as well as helping me out.

The big question

Bekah is now 10 and has taken on quite a lot of my fetching and carrying jobs which she generally does with a good heart. She also has her own interests, mainly for fashion and beauty which again I am encouraging by allowing her to do my make-up from time to time.

Thankfully this is the closest I am to needing personal care, although if I needed more (such as help washing or dressing myself) I am sure that either of my children would help. The big question arises, is this something that I would want them to do? I don’t know.

On the one hand there is a part of me that would not want a stranger to come in and do those very personal jobs but on the other hand it wouldn’t sit easily with me knowing that my children are possibly missing out in their childhood to carry out tasks for me that I had never intended them to ever have to be involved in. Caring aside, I try to ensure that they both have as normal a childhood as possible. Being a teenager means that Josh probably spends 70–80% of his time in his room, on his PS3 or talking to friends via one electronic gadget or another. He regularly has friends sleep over and sleeps over at their houses too. Being that bit younger, Bekah still likes to be around me, but she also has friends over and goes to stay at their houses. The only activity I am completely unable to do with them is swimming, and although I know they would like me to be able to do this they also know that I will do my best to do pretty much anything else with them.

I think that these kinds of decisions are so very difficult for any disabled parent. As you can read from my potted history, disability or illness was far from my mind when I made the decision to bring children into this world. But none of us know what hand life is going to deal us and when faced with a life crisis such as this, nobody can predict how you may feel about it or what is going to be the right decision for you.

Recognition

Last summer, a close friend who works for the local council in the area of child services suggested that she nominate my two children in the Colchester Youth Awards as Young Carers of the Year. The independent part of me wanted to react with “but they’re not my carers.” However, the more realistic part of me thought that this would be a great opportunity to give them public thanks for all that they do for me. So in October we were invited to the awards ceremony and, setting my mixed feelings aside, they won the award and the public recognition that they deserve. I am very proud of my children; not only do they help me out with countless tasks, but they both excel at school and are growing into well-rounded, fun, intelligent and caring individuals.

Article first published in DPPi journal 72 Spring 2011

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