Being a carer is part of me, but it doesn't define me
Posted on: 15 June 2017 by David Dean
David Dean is self-employed and from Buckinghamshire, and a carer to his wife Julie. Julie has Multiple Sclerosis, a condition that affects the central nervous system. Over the years her condition has progressively worsened, meaning David has had to often adapt his career and role as her carer.
I met my wife Julie 27 years ago; we got married and soon after our daughter Shannon came along. Six months later Julie woke up one morning with a blood curdling scream saying she was blind in one eye.
That was the start of a six month process ending with a diagnosis of Multiple Sclerosis (MS).
Shannon was nearly one and we just did what was needed to get by. Julie carried on working but two years later had a spell in hospital. I was somewhere between work and hospital all of the time. I used to take Shannon to see her Mum in hospital every evening, we used to do the bedtime routine there before I took Shannon home and put her to bed. My days consisted of the childminders in the morning, work, childminders again, and back to hospital. Over a period of time, we made some adjustments.
As the MS progressed Julie went from a full-time job running a department of 40 people to working as an administrator part-time. Whilst the reduction to our income was hard, we took the hit to make our lives easier.
Then in 2010 the big one happened. One Friday morning Julie couldn’t feel where she was in the bed. The only sensation she had was in her head. She couldn’t feel where her legs were or stand up. As a result she was in hospital for one month followed by a stint in rehab. At this time Shannon had just started secondary school, I was working full-time and to say it was a stressful time is a bit of an understatement.
Whilst there are lots of things and lots of people prepared to help you, you have to go and find them yourself, all whilst you’re trying to look after the people you love and care for. Online spaces such as Simplyhealth’s Care Community can provide a great place to discuss caring for a loved one with others who are in the same boat.
It became clear Julie wasn’t going to go back to work. We had a house that was reliant on two salaries, but were now having to cope with whatever benefits Julie could get and my salary. My job at the time meant I could be out for long days and some weekends and as time progressed that became harder to do. I had a really good relationship with my employer, providing I was honest and explained exactly what was going on, they would help me as much as they could.
If you are a carer I believe you are a more conscientious worker, because you are constantly trying to balance your caring role with your working role. As we all live for longer there are going to be more carers in the workplace, either for older relatives or their partners like me, which means companies are going to have to change.
I never make any secret of the fact that sometimes my day’s work is the equivalent of somebody else’s respite care, because it gives me a smattering of normality for a few hours a day. I do have to work all the hours I can to build up the business, while keeping a couple of days a week to help Julie, but this has meant we have had to put our house on the market and downsize.
Charities and community groups are crucial in ensuring carers are supported and do not feel alone. Initiatives such as Carers Week do an amazing job in highlighting what is an increasing and ongoing reality for many people. The support from the likes of Carers Week and Simplyhealth Care Community allows carers to speak with and learn from others, whilst providing a safe space to discuss concerns and gather your thoughts.
An illness like MS is constantly changing the landscape for the person, which means the caring role is changing too. What Julie can do today, she might not be able to do tomorrow. As a couple it has made us stronger, we live in the moment and take nothing for granted.
Being a carer doesn’t define me, but it is a part of who I am. As far as I was concerned, we were a family and will continue to move forward as a family. You can’t worry about what could’ve been - you have to make the most of what you can do.