My experience of caring for my husband with MS
Marie Nixon, who’s married to MS Society Ambassador Stuart Nixon MBE, tells us about her experiences of caring, being a 'Mamgu' - a Welsh grandma, and a volunteer, while enjoying retirement.
The couple live in Newport, Wales. Marie has cared for Stuart, who has secondary progressive MS, for over 30 years.
How do you care for Stuart?
Stuart was diagnosed with MS when he was 18. As his MS progressed, he went from using a stick to using an electric wheelchair full time. He now only has functional use of his left arm. But that doesn’t stop him. He can still pour a mean gin and tonic!
I retired almost 2 years ago from a job I loved in the NHS. Work and caring were tough bedfellows. Flexibility and planning were essential. But after over 40 years, I felt I'd 'done my bit' and Stuart needed more help with things like moving around, getting in and out of bed and getting dressed. At times, I felt like I’ve done a full day’s work before I’ve even left the house! There is no time off. But I would not have changed a thing.
We've always said that we both have MS, it affects us both. Any decisions are always made as a family.
What has been your experience of getting help with caring?
We have mostly supported one another. But at the beginning of 2022, we needed help when Stuart was very poorly and was discharged from hospital. The care from social services he received seemed very unprofessional. We had different carers on each call and Stuart complained to me ‘I feel so tired, I’m sick of repeating myself.’ We were both frustrated. I stopped the care package one day but nobody asked us why!
Stuart has recently done some work with social care commissioning teams in Wales. He’s helped design some training for situations that can happen in real life. We’re positive that this will help others with similar experiences to us.
How easy has it been to get support and information?
People don’t talk about caring. It’s hard work both mentally and physically. Social services and the NHS expect you to care for your loved one because you love them. I’m not routinely asked if I need support. In all this time, I’ve only ever been asked once or twice. My usual response is to burst into tears. It always takes me by surprise!
Stuart has said that when you have a disability, people assume you immediately know everything there is to know about it. But that’s not the case! As a carer, I have to actively seek out information. No one from social services has told me about the benefits I’m eligible for, what discount schemes are available or the advance notice you can get for issues with our energy supply.
Read our pages on other financial help
You can also read about financial support on the Carers UK website
What are you enjoying about your retirement?
Today we love being retired, spending time in our garden - our pride and joy. Or with our grandson - our other pride and joy. Or just spending time together. Life is too short, there isn't enough time to fit in everything we want to do. If we can fit it in... perhaps there's a book to write!
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