Three in five of us will become carers at some point – redefining roles and lives.
Carers Trust Fylde Coast Carers Centre helps more than 3,000 carers, young and old, cope and is striving to reach more than 13,000 ‘hidden’ carers in the resort – identified in the last census. On day two of National Carers Week, Jacqui Morley meets the charity’s Adult Carer of the Year John Joyce, who cares for wife Bev, continues to work for Blackpool Council and has won a social media following as Twitter’s ‘Ice Cold Chef’.
It’s Tuesday night in Blackpool and young carers are taking a rare night off from other duties.
At Claremont community centre, North Shore, charity chief executive Michelle Smith’s black labrador Belle is the star attraction at the young carers’ youth club – particularly for kids unaccustomed to pets of their own, such are the pressures on home and other priorities.
Grown ups gossip on the sidelines. It’s as much a social gathering for them as their kids – a two-hour window on another world and one which can lead, for the kids, to day trip and even residential holidays, their self confidence blossoming with each respite break.
Up in Layton, young adult carers are learning how to cook spiced chicken and chips – with the minimum of fat or frying – by fast rising social media chef John Joyce, aka the self styled ‘icecoldchef’ @john1827joyce.
Like the children at the youth club and the teenagers at the cook-in, John’s a carer too, couldn’t so much as boil an egg until wife Bev developed multiple sclerosis. Now they’re eating out of his hands.
“Eight years ago my wife Bev was diagnosed with secondary progressive MS.
From that day our lives changed, I became known as a ‘Carer’. I don’t like the word carer and never will, the word sounds so negative.
Acceptance of our new situation took numerous months. We started to rebuild our lives and duties at home. I asked Bev to teach me to cook, I needed to learn, and fast.
It took countless days, but Bev kept supporting me. Soon I was cooking on my own and my alter ego the #icecoldchef was born and won a following on social media.
The kitchen is my haven, where I switch off from my working day.
Accepting a health condition can be tough for both partners, you may be travelling along quite happily and, out of the blue, hit a low spot.
This when I dig deep mentally, look back and picture how far we have come each day at a time. It lifts the spirits and gives you the strength to continue.
Those pictures fill my heart with pride. One of the best is what I told Bev at the start of MS: picture a basement door, beyond the door a hundred steps. If you open the door and climb down, with each step the deeper your mood becomes. At the 10th step I can still reach you, come back up, close the door, lock it and throw away the key!
I rely heavily on strength of mind to overcome any negativity surrounding us both. As a multi-tasking man I also use electronic apps on my smart phone/tablet device!
They allow me to add reminders for various chores and any appointments we have. This frees my mind to give me the time and energy to get us out and enjoy some fresh air.
We have another ‘carer’ too. Stanley, a border-westie cross, joined us as a pup. He’s now one year old and assists Bev with anything she drops – eye glasses, remote controls, magazine – collecting the items and fetching them to her. He gets a little treat as a thank you.
I could talk about the positives in our life so much. Mainly it’s about adapting daily, try never to focus on the negative, and remember you love each other and each day begins a fresh start.
I’ve had that positive streak since I started out at 16 as an apprentice bricklayer, and was told I would never amount to anything.
I use it at work, and to push me at home. And when the cooking clicked in and other chefs picked me up on social media, knowing they were behind me was fantastic.
People talk about the work/life relationship but I have it – my employer, the council, has been very supportive.
Last year I went to food festivals and cooked in front of numerous people – and now I’m helping young carers learn how to cook tasty, simple and nutritious meals.
Carers Trust Fylde Coast Carers Centre is a great local charity. The support offered to carers is invaluable and it’s good to know I have back up if required.
“I am too young to have a carer, and my husband John is too young to be one, but l know this is what can happen when a chronic illness or condition affects you.
I was diagnosed with secondary progressive MS eight years ago.
At first, I could still work. My walking became a bit unsteady, but not enough that I felt I couldn’t manage. However, my progression was quick and within a year I was medically retired at 46.
This affected our lives personally and changed our roles at home. I could no longer drive, go out on my own, or cook, one of my greatest pleasures.
I had to rely more and more on my husband John to help me with the simplest of things, which led to feelings of frustration and guilt on my part.
This became a period of adjustment for us both. Learning new things for Mr J – and acceptance of the situation for me. Mostly coming to terms with the fact life wasn’t over, just very different. I had to learn to focus now on what I could do, and not dwell on the past and what I could no longer do. It wasn’t easy, and it has taken determination and time to reach the point we are at today.
We wanted to keep as near to normality as we could. We are still husband and wife and will consider ourselves to be until we have no choice.
We have changed all aspects of our life to make things as easy and stress free as they can be. I still have my hair done, but I have a lady who comes to me. I do the shopping, food and everything else via my iPad and it is all delivered.
Instead of spending our time fighting in shops, we do things we enjoy, taking our dog Stanley, to places that are suitable for wheelchair users.
Perhaps it would have been easier on both our parts to give up but thankfully, that is not in John’s nature.
He has taken on my love of cooking which has led to us attending lots of functions, shows and festivals and given us a new outlook on our life.
We have started to raise funds for local and national charities, and I think this has contributed to our moving forward. We are lucky we have each other, but we are aware a lot of people are in different situation.
I know that, as I struggled to accept my condition, so did others around me, but for different reasons. Without help, which comes in many forms, it is easy to find yourself in a bad place.
Young carers especially need to escape sometimes from their caring role to enjoy being young and to do things that ordinary young people do. That is why the Carers Trust is so important, and why John and me will do whatever we can to help them.”
Tomorrow: we meet the young carers – including the Young Carer of the Year