Caring for a sufferer

The role of a carer can be tiring and stressful. We talk to one woman who describes how her family and support network really came up trumps when helping her care for her mum

Laura Gilby has lived with Multiple Sclerosis her whole life. Her mother Linda was diagnosed shortly after Laura's birth and by the time she was 19, she became one of her mothers principle carers. Sadly, Linda lost her battle against MS in June 2006, but Laura is determined to continue raising awareness and fundraising for the disease.

What kind of support did you get during your mum's illness?

'My main contact was with social services, who I would call if mum needed to see an occupational therapist, nutritionist or speech and language therapist.

'We have had a live-in carer for the last seven years, as well as a morning, lunchtime and evening carer.I think because mum was ill for a long time her needs were quite well understood and I had various contacts that could help.'

Was it difficult for you to have a social life?

'Not really. I have a brilliant group of friends. If I went on holiday they would pop over and watch a DVD with mum or just come over to see her. When I went away I would plan a few months in advance; arranging a carer who I could trust 110 per cent to come round and look after her.

'I always thought of her when I was away so it was hard to relax. When I was in Poland in April she was taken into hospital as I was on my way home which was awful - I felt so guilty.

'My boyfriend is very understanding and has always said that he goes out with me because of me and didn't worry that my mum was terminally ill. People often say - especially work colleagues - that I give the impression of being really happy so they were shocked when I told them about mum. I guess in 26 years I learnt how to put on a very brave face!'

What were people's reactions when you told them your mum had MS? Did they even know what it was?

'No, they weren't shocked. They'd heard of MS although they may not have known exactly what it was or the severity of the condition i.e. mum being bed-bound since 1999 and having problems such as loss of speech.'

If someone in your family has the disease, are other members of the family tested for it?

'No, I don't think it is hereditary and a full diagnosis requires a lumber puncture, which I think hospitals would be reluctant to do.'

After losing your mum to MS, isn't it tempting to forget about it and just do things for yourself?

'MS isn't something I could ever forget about as it has always been a part of my life and will be a part of me forever.

'I miss having my mum to look after. I always called her 'my baby' as she needed me and I did enjoy looking after her - she was my mum and I loved her very much. That is why I made the decision to stay living at home, to be near her. I sincerely believe she battled for as long as my brother and I lived at home with her and my grandparents would visit once a week, so we all gave her something to live for. She was loved so much and that love kept her alive.'

Tell me about the Bigfoot challenge. What is it and how did you get involved?

'After mum died, my friends suggested doing Bigfoot - a 50 kilometre charity walk - in memory of her. They were all affected when she died and they wanted to do something positive in her memory. They found out about it on the MS website so we decided to enter a team, 'Linda's Ladies'. My boyfriend also took part so there was a token boy as well!

We should have trained but we didn't, which was a big mistake! I thought I was pretty fit - I ran the marathon for MS in 2004 - but it didn't prepare me for walking 50 kilometres uphill and cross-country in the Cotswolds! As a team we raised about £3,000, and my friends and I are going to take part in Bigfoot every year from now on, in memory of mum.'

What would you like to see happen next?

'Continued research on the cause of MS is of paramount importance. If we knew the cause I think that would be the catalyst in finding the cure.'

If you want to get involved, join the MS Society's Christmas Stars Campaign or contact the MS Society www.mssociety.org.uk, tel: 020 8438 0700