A couple's guide to caring

On Carers Rights Day, we look back at Lizzy and Martin’s candid take on life caring for someone you love. Martin got diagnosed with MS before they met and married 30+ years ago. It is part of their story along with a good dose of honesty, great family and friends, hobbies, good food and positive thinking.

Listen to the full caring for someone with MS podcast conversation.

Their paths crossed at work, first as colleagues then as friends. At the time Lizzy knew little of MS. There wasn’t a great deal of information around. 

“We’d go to the pub and he would tell me how things were going, and I would sympathise, and he would drown his sorrows.”    

But as they got closer and became a couple a few years later, Lizzy felt it was time she did some research. She realised at that point there wasn’t much she could glean on MS. These were the days before the internet.  So, she went to the library and found two books. One on nutrition. The other, a general medical guide, which really didn’t give a great deal of information.

She established early on that Martin had to eat properly. And that was the one thing he didn’t do. 

“When I looked in his cupboard, I just found chocolate biscuits, a pack of rotten old lamb chops...”   

“And frozen food,” chips in Martin.

Knowing that nutrition played a part was something they could deal with. 

They moved in together and got married. Now Lizzy could make sure Martin was eating properly, and this had a positive knock-on effect on her too.

But there were a lot of other things she had to come to terms with.

“I didn’t really understand much of what he was going through. If he was having a really bad day, I didn’t know what that meant.”

Like the times Martin couldn’t get out of bed because he was suffering from vertigo.

Bit by bit they put it together.  

“Now I know most of those symptoms and I know how it affects him. None of it holds any horrors for us. Obviously, it’s an inconvenience.”  

“Being younger we had to cancel arrangements quite often because he wasn’t able to go. In the early days I didn’t really understand why. Now I do.”

It’s been a learning curve – something they have grown up with and come to accept after more than 30 years of marriage.  

They have found that positive thinking is the way to tackle it. When Lizzy first met Martin he was very negative, understandably so. But they came to realise that being negative doesn’t do very much for you mentally or physically. After trying out different ways of coping with things over the years, it was positivity that helped the most.

It’s not always easy, Martin admits.

“I was the most uncooperative MSer you could possibly meet... It surprises me that she’s stood for it.”  

Lizzy chuckles.  

But Martin continues. In spite of all his good intentions for their marriage and for Lizzy, he feels he was too focused on himself. It left him stewing in his own misery, not remembering the person he was before his diagnosis.

Then he turned things around. He started to ask after other people. How were they feeling? Thinking about other people and their problems, really helped. He credits mindfulness for this - something they are both firm believers in.  

And then Lizzy reminds us that when you love someone, it doesn’t matter.

Lizzy and Martin have learnt not to fight against his MS anymore. There’s no point. It’s there. But it doesn’t make the unwelcome changes that came along any less easy to deal with. Like when Martin had to stop driving.

That proved a turning point for them both.

He missed not being able to put his foot down, go wherever he wanted to go. Listen to the music he wanted, however loud. He wasn’t a petrol head; it was the loss of independence that mattered.

He didn’t want to be driven around.  

But once he clocked that Lizzy wasn’t doing it by choice either, he began to understand how hard it was for her too. It was something they both needed to get used to. 

Caring has been Lizzy's full-time job for some time now, but it didn’t happen overnight.

“I am his wife. I’ve grown into the role of carer. It wasn’t something that suddenly changed, and we said: Oh right, today I’ve got to be his carer from here on in.

“It wasn’t ever something on a CV. But it was something that we realised had to happen because he needed more and more care as time went on.”

Lizzy’s retired now, but she’s always been busy and career minded. And, just as Martin needs a degree of independence, so does Lizzy. She knew she needed more fulfillment out of life. She has lived 30 years of MS and found her own ways to deal with it.

She joined a choir, and it’s one of the most satisfying things she’s done. It got her out, making new friends and singing – something she thought she couldn’t do. And then there’s gardening, and a bit of writing every day.   

Of course, Lizzy can only enjoy herself knowing that there's someone around for Martin when she’s out. That support network is so important. It's something they both really appreciate following a move back to London after 20 years in Dorset.  

Dorset was a spur of the moment decision that Martin thought would be good for his health. Lizzy had doubts about moving away from family, but she didn’t want to upset or stress him or worse, bring on a relapse. She wanted to make him happy.

And it was an idyllic life. Sea air, big house, beach hut for writing. But as they got older, and their son moved out, the reality of being far away from family began to set in.  

Lizzy reflects: “I wasn’t completely honest. And honesty is a very big factor... I thought I was superwoman, and I could do all this.”   

She realised it was time to speak up. She missed their family. They were isolated in Dorset, getting older, travelling back to London wasn’t easy, and she needed help. That was something Lizzy had been afraid to ask for until now...

Want to hear more from Lizzy and Martin? Listen to their podcast and Lizzy’s bugbear (SPOILER: hidden disabilities, parking spaces and toilets), date nights in, morning meditation and more.