I'm Jen Wharrier, and I was a carer for my husband, Dave, for 19 years until he sadly passed away in April last year due to complications from MS.
I fell into caring for Dave right from meeting him. We connected online, arranged to meet in person, and he disclosed that he had MS. He asked if I knew anything about it, which I didn't, so he shared a link to the MS Trust for basic information. The reason he told me straight away was because he was using a walking stick, so his disability was quite visible. Early on, I’d help him shave due to his tremor, and we navigated transport options since he couldn't walk far. When I moved in with him a couple of years later, I became his full-time carer after he had to stop working due to his disabilities being quite high.
It wasn’t a huge adjustment—we naturally fell into a routine. The main thing was not going out as much as we’d like since arranging taxis was a bit of a military operation, especially as neither of us drove.
I worked full-time until 2015, and my days then started with setting things up for Dave, ensuring he had what he needed within reach, and prepping his lunch. After work, I’d catch up with him, help him bathe—an hour-long process—get us to bed, and make sure he had his meds, and that was the bulk of our time together until the last few years.
“You’re constantly thinking about two people's lives.”
When you're a carer, you're not only living your life, you're living somebody else's life. You're constantly thinking about what they need and pre-empting situations where they might need help. Like ensuring Dave could ring me or his parents in an emergency.
Caring challenges
Dave was six foot three, so quite a tall lad and navigating his immobility was quite challenging on occasion, like getting him out of the bath or if he fell. Some nights, when he fell and I couldn’t lift him, we’d lie on the floor together until he regained his strength, and we could get up together.
Emotionally, it was quite tough. I suffer from poor mental health anyway, so it is difficult navigating the isolation of being a carer because nobody really understands what it's like unless they're living it.
I used Facebook groups a lot for support. There's the MS Trust group, which is excellent for general information, and MS carers groups where people in my situation would get together and vent, seek advice, and share our experiences. I think that's the key to being a carer - ensuring you've got people you can share your experience with - and getting it out means everything.
If it hadn't been for MS groups online, I would have really struggled.
There’s only so much you can talk about with people outside of the situation. Other carers get it—you can even joke about things that seem too dark to discuss elsewhere. A good sense of humour is essential when you're a carer.
Accessing support
In Lancashire, we have a group called Encompass that runs Lancia Carers. Through them, I accessed counselling and received a yearly Time For Me grant of about £300 that I could spend on myself, and I used it to visit my parents in Devon. Having a fixed income as a carer made budgeting difficult, so the grant was a huge help. They also provided annual carer assessments and pointed me toward resources for benefits, home adaptations, and equipment grants.
Navigating NHS support was about building strong relationships with the people who are dealing with your care. Dave was technically classed as palliative for the past 15 years, and I had an excellent relationship with his neurorehabilitation consultant. If I needed anything I could get in contact, and he’d set up referrals to things like speech and language therapy (SALT) when Dave was struggling with swallowing. It was the same when he ended up being tube-fed. I had an excellent relationship with his dietitian. We tailored everything to Dave, and eventually, she advocated for NHS Continuing Healthcare for us. There are so many different teams, especially when MS gets very advanced, because there are so many different parts of the body that aren't working as well as they should be.
You need all these different branches from your little NHS tree, so you do tend to have quite a lot of experts helping you.
Looking after yourself
After COVID, my mental health spiralled. As most will know, the pandemic was particularly hard on MS sufferers and carers due to the isolation and worry of exposure. My local NHS was extremely helpful, and I accessed counselling via Encompass within the space of a couple of weeks because they gave me an emergency referral.
You do have to find it, but there is help out there and it's about speaking up and saying that you're struggling. Even going on some kind of medication to help settle the mind and help you deal with things a bit better, something as simple as that can help.
To anyone in a similar situation, I would say make yourself known to people. If you’re not known to the services, you can’t access help. Build strong relationships with social workers, GPs, and healthcare teams so that when issues arise, you have immediate points of contact.
I'm not going to say that the past 20 years were an easy ride because at times it was incredibly difficult. But it's about speaking up and being brave and saying that you need help with things, and again, making sure that you've got those good relationships with people.
Keep up-to-date with the latest MS news, explore new research, read the stories of people living with MS, find out practical tips from MS experts, and discover exciting fundraising opportunities
If you would like to sign up for post or telephone (SMS) updates you can complete our sign up form here
