Every June eight charities join forces to mark Carers Week. Carers UK, Age UK, Carers Trust, MND Association, Oxfam GB, Rethink Mental Illness, Lewy Body Society and ME Association all hold awareness events to support and bring attention to the six million-plus unpaid carers throughout Britain.
This is a cause close to The Pirate’s and my hearts as we have been co-patrons of Carers UK for 10 years. There are so many charities’ masts on which The Pirate could have hoisted his flag, but the fact is that we have both been carers to each other through cancer and we know the fundamental effect becoming a carer can have on your life.
The Pirate fell ill on our honeymoon in 2003. The wedding vows of ‘in sickness and in health’ were quickly challenged as he was diagnosed with non-Hodgkin’s lymphoma in his colon. One doctor’s appointment changed not just his world, but mine too. I had to stop working. So instead of travelling the world producing television commercials, I was driving to St Barts hospital at all hours of the day and night, coordinating medical appointments, following new regimes of eating, administering drugs and injections, seeing to his vast array of demands (he can be very specific!), dealing with BBC Radio 2, opening box loads of fan mail and keeping his friends and family informed. All the while terrified that the man I had fallen in love with and just married was soon to be taken from me. I gave every ounce of my body and soul to make sure he had everything he needed. When his insides burst open, and he had to have emergency surgery in the middle of the night, I enforced upon the surgeon ‘You must look after him. He’s very special.’ As it happens The Pirate slipped away three times during the operation, but each time he returned. He always credits my love with his survival.
While it is a deeply gratifying to think you helped save someone’s life, the cost to my own existence was huge. By the time he returned to his Drivetime Show on Radio 2, I was a broken and spent force. Throughout his year of sickness everyone from family to friends to medical staff would ask how Johnnie was. They didn’t once ask how I was doing. I was just an unlucky wife doing her job.
A few years later I met a woman at a party who told me about her fundraising for a charity called Carers UK. ‘That was who I needed when Johnnie was ill,’ I uttered, amazed that such an organisation existed; unbeknown to me I’d had a label of ‘carer’. It wasn’t long before I was invited to a Carers UK reception where I met Norman, who has cared for his sick wife Ros for years. For the first time I spoke to someone who understood what I had been through. Suddenly I was not alone, and an inordinate weight was lifted from my shoulders.
Carers suffer from a total change to their life. Financial challenges, physical exhaustion, new nursing tasks, emotional distress and a redefining of their relationship with their sick charge being just a few of the issues. The Pirate changed out of all recognition, fear revealing the darker side of his personality. It was hell. Research has shown that one of the worst things for carers is isolation. I lost my work colleagues. I couldn’t go out and see friends. I became invisible. It was by far the worst period of my life. At the lowest ebb I even questioned if I had the strength to stay in the marriage.
Ten years later it was The Pirate’s turn to care for me as I went through breast cancer treatment. Two operations, chemotherapy and radiotherapy took their toll. While his level of caring didn’t have to be as intense as mine, he was steadfastly there for me; driving me to around 70 appointments and emotionally bribing me with gifts to continue with the hateful chemotherapy. He never shared his abject fear that he would lose me. He was there for me through all my troughs (there were no peaks). One of the most poignant acts he did for me was shaving my head as my hair started falling out. Truly you never know what a relationship or marriage to someone can lead to.
Over our 21 years of marriage, The Pirate has been sick and hospitalised many times. When he had a triple bypass following a heart attack in 2019, I realised that the utter caring devotion of the new wife had gone. I felt exhausted at the very thought of caring again, hating changing his surgical stockings and yet again running up and down answering his multiple needs. While I dislike the victim culture of today, I must admit that throughout our marriage I have been suffering from a form of PTSD (posttraumatic stress disorder) since that first experience of caring.
This year, however, I’ve had to toughen up. The Pirate has for the past four years been suffering from Idiopathic Pulminary Fibrosis. Inflammation of the lungs leads to them scaring and being rendered useless. Thanks to Covid he was forced to work from home. It was such a success that Radio 2 allowed him to continue to work this way. However, on New Year’s Eve, Johnnie presented a live show from Wogan House. It’s an important day and all the shows were live, so we rose to the challenge.
It was a busy show and the messages flooded in. The Pirate was on his old form, using car horn sound effects and interjecting whenever it took his liking. Two hours of high adrenalin in what we knew would be his final show at Wogan House, as Radio 2 were moving across the road to New Broadcasting House. As his show drew to a close, I could tell he was suffering. When I drove us down the Marylebone Road to head home to Dorset I cried. Instinctively I knew he would never come to London again, and a life we had shared for over 20 years had just ended.
I expected him to be tired the next day, but something far worse happened. The effort had been too great on his already sick body. It was as if his health fell off a cliff. The weeks that followed were a blur of nurses, doctors, oxygen machines and wheelchairs. In 24 hours, our lives had changed out of all recognition. That was in January, and The Pirate has not left home since then, I am a carer 24/7. The shock on me was profound. I was overwhelmed by how much support he suddenly needed, how little I had, and that our home was starting to resemble a hospital. I was also petrified that this sudden decline wouldn’t end. When a respiratory team came to assess him, they said they’d be back in three months. ‘That’s optimistic’ I noted, fully expecting The Pirate to be no more by then.
But The Pirate is still with us as I write this. He is an extraordinarily strong and determined individual who will not let his failing lungs and disability keep him down. He is still recording his shows. Though I wonder how many listeners to the Radio 2 Rock Show could have pictured him the day he recorded – wearing PJ’s, sat in a wheelchair with a nose canula feeding him oxygen. It’s hardly a leather-clad rock god look.
The huge change to our situation from when he had cancer is twofold. I am 20 years older, and I am exhausted by the end of each day. However, the good change is that the medics, friends and family alike ask how I am. They all tell me that I must look after myself. I was even offered counselling by the GP’s surgery (who has time for that?!). I am no longer invisible as a carer. I too am a human being with needs. Not just an unlucky wife. With my co-patron of Carers UK hat on I am truly delighted to see how the awareness of unpaid carers has increased over the last two decades. The work of Carers UK has had an impact. Their canvassing of Government for recognition of carers and their rights has begun to have an effect (although the carers allowance is still just a pitiful £81.90 a week for those who receive it).
It is estimated that unpaid carers save the economy £162 billion a year – the equivalent of a second NHS. Yet, many carers feel their role is forgotten and invisible. The theme for this year’s Carers Week (June 10-16) is ‘Putting Carers on the Map’. So, I ask that you look around your friends and family. If any are in a heavy-duty caring role, please reach out to them so they know they are on your map. Offer to cover for them so they can go for a walk. Send them a supportive message or take round a homemade soup. You have no idea how valuable that would be to them. Let them know, too, that charities exist to support them. Even I have called the Carers UK helpline this month.
As for The Pirate, well his listeners definitely get the best of him, but that’s how it should be. He’s been a part of their lives for so long, and I’m so proud that he finds the strength each week to record his show. I’m also proud of myself. Somehow, I’m finding the strength to give him the most steadfast support that I can. When the caring role ends, my life will be very different. But I push that thought away.
Who are Carers UK?
This is the leading national charity for unpaid carers. Carers UK’s mission is to make life better for the 5.7 million carers across the country. They support, advocate for, champion and connect carers across the UK, so that no one has to care alone. Carers UK provides information and advice on caring, helps carers connect with each other, campaigns with carers for lasting change, and uses innovation to improve services. You can call the Carers UK Helpline on 0808 808 7777 Monday to Friday 9am - 6pm (including bank holidays). Alternatively, email advice@ carersuk.org at any time. Find out more at carersuk.org
Carers Week 2024: Taking place from June 10-16, this is a UK-wide awareness campaign seeking to increase visibility for carers. This year’s theme ‘Putting Carers on the Map’ aims to highlight the increasing pressures on carers and to campaign for much-needed recognition and support. Get involved at carersweek.org
