Ahead of Carers Week in June, Jen Wharrier writes candidly about the day to day reality of life as a carer.
I’d never imagined myself as a carer. Always thought I’d be too selfish. But you never know how you’ll deal with a situation until you’re in it.
I met Dave online back in 2005. I knew about his MS from the start and I was amazed at how resilient and strong he was in the face of his rapidly progressing primary progressive MS. He was funny and confident and his cheeky nature lured me in. He walked with a stick when we met. I can still remember seeing his slim 6ft 4 frame striding over with his cane in hand as he wolf whistled at me from across the square 14 years ago. Our relationship moved on, as did his MS, leaving him needing a wheelchair permanently within about a year. Still, we carried on as ‘normally’ as we could, going to gigs, moving in together, getting married and settling in sunny Lytham St Anne’s. We adopted a beautiful dog, Bailey. Our family was complete! Life was good!
Then, MS had other ideas. Dave started to get weaker. We were struggling with bathtime and even with his stairlift, getting about the house was becoming difficult. I was working full time and out of the house for 12 hours a day, leaving Dave to fend for himself. We had to move. We were lucky and were given the opportunity to move into a newly built ground floor flat with a wetroom, but we had to re-home our beautiful baby girl as dogs weren’t allowed. Our hearts broke, but it was for the best.
We settled into our new place, but Dave’s MS was progressing again. I reduced my hours at work. My caring role was taking over from my being his wife and when he eventually needed a profiling bed, separate rooms sadly put the nail in the coffin of us as a man and wife. I was feeding, bathing and toileting him and I had to take over everything from Dave’s healthcare and all our finances. Eventually, he couldn’t be left alone and I had to quit work entirely and be his full time carer.
Being a carer for a partner is probably one of the toughest things you could ever do
Our world closed in. Initially, I became very depressed at all I felt I’d given up. But I got myself help from my GP and started to adjust to this new stage.
Now, my days are pretty much all the same. We have a well regimented routine of getting Dave washed, dressed, toiletted, fed, sorting out Netflix, more feeding, bedtime, and doing it all again the day after. Dave is predominantly confined to bed now so needs around the clock supervision. Life as a carer can be monotonous! Needless to say, I keep myself occupied with lots of hobbies. I needle felt, knit, make soap and care for my new babies, my pet rats. Every Saturday , Dave’s younger brother looks after him so I get a few hours off to be ‘me’.
I’m a member of a couple of Facebook groups for MS (facebook.com/groups/multiplesclerosistrust) and it’s wonderful to chat to people with MS and carers alike as you can only truly understand this condition if you live it. It is invaluable when you want to rant or vent or just share what you’ve been up to that day. We celebrate little things so much more when you have a chronic illness to cope with. There’s a local carers organisation that runs support groups too, as well as daytime respite, so there’s help out there for us carers, we just need to be brave and reach out for it when we struggle.
Being a carer for a partner is probably one of the toughest things you could ever do. MS takes away so much from a relationship, and it’s difficult to adjust to not just being a wife. You have to change your priorities and give up parts of your life, which is hard to come to terms with. But for me, enabling Dave to stay in his home with all his creature comforts, it makes it all worth it. He’s happy, healthy and loving having pizza and Guinness when he likes! And he’s still Dave. He’s quieter and less confident than he used to be, but he’s still in there. The cheeky chap comes out every now and again. We’re not giving up just yet!