Lots of carers become carers by gradual accident. It may be that a married couple ages together and becomes affected by issues like dementia or physical disabilities. In time, it can happen that one partner becomes the carer for the other.
What’s it like when the relationship changes after all those years? To illustrate these changes, our partners at The MS Society offered these ‘My Stories’.
Young And Old
Sarah Thomas, (20) from Shrewsbury, has helped to care for her mother, Carole, who has Multiple Sclerosis (MS) since she was a toddler. She has volunteered for her local branch of the MS Society since she was a teenager and played an active role in raising awareness of MS and the work of young carers.
“At three years old I was already fetching and carrying things for Mum. People were amazed to see me put my own shoes on before I could speak but it was what I’d always known and I didn’t realise I was doing more than other children” she says.
Sarah took on more responsibilities as she got older and her mum’s health worsened. She helped out with all the household chores and even learnt to administer her mum’s daily injections.
Once Sarah was at primary school she began to recognise she was different from the other children whose mums would be waiting outside the school gate at the end of the day.
“I remember going round to my friend’s house and asking her if there was something wrong with her mum because she worked and drove a car. It was only when my friend told me my mum was weird that I started to feel a bit alienated” she says.
“But caring for Mum also made me very driven academically at school because I felt I always needed to be one step of everyone else because the chances are I’ll be one step behind if something bad happens to Mum” she adds.
Being a Kid
When she turned eight Sarah became a representative for the Young Carers’ Forum which was set up by the Red Cross. “It provided young people with the chance to go on trips away to make up for their lost childhood. I threw myself into all the activities on offer such as quad biking and doing arts and crafts and basically just enjoying the things young kids are meant to do but with other young carers rather than our parents.”
Throughout her early life Sarah shared the caring role with her dad Ray but when she turned 14 he was diagnosed with a degenerative bone disease and fibromyalgia.
“Looking back, a lot of family members have become ill so often and all I could do was stay strong for everyone else. When your support network diminishes you gain a greater appreciation of people. I really value everyone who is close to me and still remember even now to take each moment and day at a time” she says.
Sarah has now entered a transition phase where she is still living at home but starts university in September and is currently applying for jobs. “I still help around the house but I also want to gain some independence. I feel like I need to create my own path away from Sarah the carer as it gets to the point where you don’t have your own identity. When I was a teenager I lost my identity completely and bottled things up and only now am I dealing with what’s happened to me over the last couple of years.”
The Two Of Us
Brian Stones’ wife Linda, was diagnosed with Multiple Sclerosis (MS) in 1989 which became secondary progressive six years ago. He has been her carer for the past 12 years.
“It started with little jobs here and there and progressed to where I’m at now where I run the home and look after all of Linda’s needs; from dealing with her personal care and managing her medication, medical and personal appointments to dealing with the NHS and equipment issues on a daily basis.
I’d love some free time, even just on a Saturday afternoon to shoot off and watch the football, but I can’t as there’s always something that’s got to be done. Every day chucks up something stressful which has to be dealt with, usually regarding Linda’s general health.”
Brian’s day starts early at 6.30am after putting Linda to bed at around 10.30pm. He has personal care support through care agencies which is provided and paid for by the social services.
“We’re really appreciative of the service we get as it’s very expensive otherwise. I get the help of two carers that come for an hour each and every morning with three 15 minute visits through the day for lunch and to empty Linda’s catheter.
During the evenings I don’t have carers coming in as we need some time together without intrusion so we can decide when we go to bed at our own leisure.”
Brian doesn’t feel like he gets much emotional support but also doesn’t like to ask too much from his son and daughter who both have their own families to look after.
“I think it’s much harder for male carers to cope with the emotional side of things as we’re less inclined to talk about our feelings. I’ve registered with my local care centre and there are lots of different activities going on but the group is made up of women and that makes it more difficult for me to express my emotions. I would really like to see more options and (trips away) for male carers – like a day’s fishing or talking at a sports event; sightseeing or just a quiet day away with a group of men.”
Brian also thinks carers are short changed by the Government financially and would like to see more financial support in place for them saying: “At present most carers are isolated and financially dependent on their loved ones who they’re caring for which leaves most financially insecure and in debt. They save the treasury billions by looking after loved ones in the community with little return or financial support needed to give them the financial security they so richly deserve and need.”