"I speak up for people who can't speak up for themselves" - Mike Hunt has been a carer for his wife, Lynda, for over 12 years. We spoke to him about life as a carer, the challenges he faces and his advice for others.
My wife, Lynda, was diagnosed 12 years ago but we knew there was something wrong a long time before that. She had a bad episode and we thought she had a brain tumour so, when she was diagnosed with MS, it was a relief. I became a carer at the point of diagnosis, and at that point, we also had assessments for different benefits that we may be eligible for.
Before Lynda was diagnosed we had our own business, we owned a small hotel and we were working seven days a week, 18 hours a day. When she was diagnosed, we had to give it up. At that time, it was doing quite well but then the bank wouldn’t lend us any more money, so we had to sell the business.
As a carer, I’ve had to change my work-life balance, and totally re-evaluate my expectation of what my life will be like. The isolation of being a carer can be very debilitating, and it gave me depression. However, I’ve found an inner strength to be able to go on.
Now I’m self-employed and manage a small garden and decorating company. I also get involved with a fair bit of charity work including supporting people who are unable to speak up for themselves.
MS makes a lot of people feel isolated, you might be living in the middle of London or any big city, but you can still feel isolated. You can feel like there’s nobody around you, partly because MS isn’t always a visible disability.
Lynda uses a wheelchair every now and again. But if she’s not in the wheelchair, you can’t have a big flag saying ‘I have MS’. Some people can’t speak up for themselves or need help to do so, so I do a bit of work on that and try and make people aware.
When someone is diagnosed with MS, it’s important to realise that the immediate family and even good friends can be affected.
It can feel dehumanising as a carer. We go to rugby a lot, partly because it has very good accessibility. My wife has a wheelchair seat and I get in for a reduced amount because I am a carer. On my wife’s season ticket, it has her full name. But I don’t have a name on mine I am just ‘the carer’ on my ticket. That goes right the way through me – I am the carer. I am not Michael Hunt, I’m not her family, I’m the carer. Carers don’t have time off, we can’t get a promotion or a pay rise and we can’t relocate. We are always there.
So anything charities like Overcoming MS can do to make sure people who are affected by MS aren’t forgotten about is a huge help.
With conditions like MS, you reach out to people who are in the same position as you, if you can. That’s one great thing about the internet and social media – the ability for people who are isolated, both socially and geographically, to get in contact with other people.
My wife for example is on the internet a fair bit talking to others, because we’re over 50 miles away from Exeter, which is our nearest city and where she goes for treatments like oxygen therapy. That’s how she found out about Overcoming MS. She spoke to somebody online who recommended looking into the charity, and we went from there.
We have always had a fairly healthy diet because of where we live, in the countryside and near the coast. We can go down to the harbour and get fresh fish and pick our own vegetables.
My wife has dairy intolerance and gluten issues, so the Overcoming MS diet has also helped reduce those symptoms, which means she’s sleeping better now as well. Before starting the Overcoming MS program, she sometimes would have to get up a couple of times through the night and that meant I’ve also got to get up to help her. So an added benefit is that we are both sleeping better now.
I support Lynda in preparing and cooking whatever she wants to eat. I don’t follow the Overcoming MS diet as strictly as her but my diet is very similar and complements hers.
I always try to make her feel as though I’m not going out of my way to cook meals and I enjoy them as much as she does. I’ll have the baked fresh vegetables that she has, but instead of her main course, I might have meat but everything else will be the same.
I do batch cooking as well so we will have things like bolognese or curry mix which we can freeze. It saves time and also if Lynda feels like having a particular meal, there is normally one in the freezer. It also means I can have something totally different if I want. Batch cooking gives you that flexibility.
As a carer, you feel isolated, particularly as a carer of somebody with MS whose symptoms are so varied.
I was part of the pilot Overcoming MS carers’ group and we had parents, husbands, wives, partners, etc in the group. We had people like me who have been with someone with MS for more than a decade and who have adapted our lifestyles and found a way of coping with things. The group gave everybody a chance to realise how varied MS is and talk about all the things that a carer has to cope with.
I thought the sessions were brilliant, particularly the one-on-one sessions. I would love them to be become more common. I used to be a real sceptic with regard to therapy but I realised afterwards how useful it is for me.
As a carer, you face a lot of stress. Having ‘me time’ is important. I’ve got a group of friends who I’ve known for over 30 years and, once a month, I’ll go out to dinner with them or clay-pigeon shooting. As a carer, you do have to make sure you don’t get that guilt when you’re doing those sorts of things. Some carers have a lot of guilt about spending even just a minute of the day doing something for themselves.
I tried meditation and I never really got to grips with it, but I do aspects of it. I call it relaxing and appreciating what I’ve got. Having a dog is also great and helps the immediate family as well. I’m a great believer in therapy dogs of all sorts, I think that they’re superb.
If you are new to being a carer you want to be realistic, hope for the best and expect the worst. Be proactive, you’re in it for the long haul so look after yourself. Don’t be afraid to reach out, there are some wonderful people and groups out there.
You’re not alone, there is help out there. Go out there and find as much help as you can. Be loud, be persistent, don’t take no for an answer.
You should also have some sort of ‘me time‘ and find hobbies or whatever it is that you enjoy that is separate from being a carer.
