Caring for mother’s MS is a family affair
WHEN Gillian Hobbs was diagnosed with multiple sclerosis in 2007, it was almost a relief to her family who feared she might have had a stroke or be suffering from a brain tumour.
However, only after Gillian’s condition deteriorated and she was forced to give up her beloved job as a teacher did her family realise the life-changing impact MS would have on them.
Having had no experience of the disease, which affects nerves in the brain and spinal cord, they had to learn how to re-adjust with the changing dynamic of the family, with Gillian’s daughters Charlotte and Chloe taking on the role of carers.
“One of the weird things that happened at the start – and it’s only now that we understand it – was that we were offered counselling by the MS nurses at the Western. At the time we thought ‘why would we need counselling?’
“But as mum’s MS has progressed, I now understand.
“To start with, it wasn’t as scary and I think that was down to naivety because we didn’t really know what it was or how it would affect her.
“As time went on, it got scary, frustrating and upsetting because the roles had completely reversed. I’m the parent and my mum is the child almost.”
Gillian’s condition deteriorated to the stage where she had to give up driving and retire from her job as year head and guidance teacher at The James Young High School in Livingston.
Charlotte, 25, and her younger sister Chloe, 20, took on the role of drivers for their mum, taking her to hospital appointments and making sure she had everything she needed as their dad, Graham, 55, works away a lot.
But Charlotte, who lives in East Calder, says her biggest job is just to be there emotionally for her mum. “I’m mostly there for emotional support when she relapses, telling her she’ll get through it and she’ll be fine.
“Eventually there will come a time when I will have to do more for her and I will do it, no questions asked.
“It’s not been easy. I suffer panic attacks. I did when I was at school and they came back when she was diagnosed.
“As much as she is dependent on me, I am dependent on her.
“I do have a fear of losing her, and each day a little bit is taken away.
“My friends go shopping with their mums and I can’t really do that any more.”
As well as looking after her mum, Charlotte, who works as an early years practitioner in Edinburgh, has channelled her energy into raising money for the MS Society Scotland.
She is running 13.1k in this year’s Kilomathon Scotland in Edinburgh on March 17, along with her boyfriend Steven and four of their friends.
Fifty-two-year-old Gillian, from West Calder, says she is proud of the way her daughters have coped with her diagnosis – particularly as she has found the emotional side of it difficult to deal with since giving up work in October 2011.
“I was diagnosed in 2007 but it was last year that it really hit me. Mentally, I had gone downhill.
“The girls have become like my carers because my husband is away quite a lot with his work. I suppose there’s a bit of a role reversal sometimes and that’s quite difficult.
“This shouldn’t be happening yet – I’m only 52.”
“Charlotte often says ‘I can’t imagine life without you mum’.
“MS is not life-threatening but she has had friends who have lost their parents so she thinks about how she would cope.”
She adds: “I’m very proud of Charlotte and of what she is doing to raise money for the MS charity.
“I went on a self-management course that was run by the MS Society and that has helped me considerably. Each week that we were there we set goals for the next week and things we would try to achieve.
“I was particularly low – I had retired from work and had given up driving. The course gave me a lot of self-confidence which I was lacking at the time.”
• Runners can still enter Kilomathon Scotland at www.kilomathon.com. To donate to Charlotte’s fundraising appeal, go to www.justgiving.com/Gillsfightms or text MSMS50 and amount to 70070.
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