Caring Aloud – Margaret & Iwan
Published: 10 Jun 2024
Our Caring Aloud series is all about giving a voice to the carer experience.
By hearing the stories of those at the frontline of caring, we aim to break down barriers that prevent people identifying as carers, so that they can get the support available and have pride in the incredibly important role they do.
For the first in the series we spoke with Margaret, who is a member of our Parent and Carer Advisory Panel. She talks openly about the challenges of being a carer and navigating work, as well as the unexpected joy her role has brought.
Could you tell us a bit about your son, Iwan?
Iwan is an absolute superstar. He’s 27 now and was diagnosed with rare infantile epilepsy syndrome not long after he was born. As a result of this, he’s had so many challenges to deal with in his young life. He has severe global developmental delay, osteoporosis, respiratory issues, and he’s PEG fed. Iwan requires a wheelchair to get around and is hoisted for transfers. Hospital visits are becoming more and more frequent due to respiratory failure, which can be really scary.
Iwan loves being out and about and taking in the hustle and bustle of life. I love seeing the joy on his face.
What has been your experience as a carer?
It may sound strange, but it actually took a few years to realise that I was a carer as well as a parent. I’m Iwan’s Mum first and foremost, so it never occurred to me to class myself as a ‘carer’.
It has been a huge learning curve dealing with various professionals, and working my way through the jungle that is health and social care. You start to build up a network of support and learn to collaborate with others, rather than working against them, to bring about the best possible outcomes.
It’s important to pick your battles; you can waste a lot of valuable time and energy fighting every challenge that comes your way, but impossible to fight them all.
Honestly, being a carer to Iwan has made me a better version of myself. You learn to let the little things go and appreciate the important things in life.
It’s tough when people’s perceptions of you shift, and it can really be hard to navigate. Despite having two wonderful children, because one needs extra care, I find myself constantly labelled as ‘Iwan’s mom’. But actually, I like to think I’ve managed to strike a balance, ensuring both my children thrive, and my daughters’ successes bring me huge pride. I’m proud of both of my amazing children and despite the hurdles, we still have fun and life is happy and very rewarding.
What support have you valued the most?
Undoubtedly the support that meant the most was the children’s hospice when Iwan was growing up. It wasn’t just that the respite meant we could have some precious family time, but there was also no judgement, they took us as we were. I always refer to them as the hands that caught us when we fell.
Have the challenges changed as your son becomes older?
The hardest thing has been the lack of support once Iwan became an adult. When he was young, he came under paediatric care, but there’s no substitute once you are too old for a children’s hospice. It’s hard to understand because you don’t just grow out of needing hospice care and actually, quite often, health issues deteriorate just at the time when you need the help most.
Could you tell us about your experience trying to balance work and caring?
I didn’t go back to work after Iwan’s birth and diagnosis – there just wasn’t any suitable childcare and his care needs meant attending appointments and treatments were the priority. I did feel able to go back to work when he started school, but I took a less skilled role because my caring role meant I didn’t feel I could be relied on at work. And I needed to know that if everything changed at home, that I could leave my job.
Now, I’ve worked hard and I’m a manager. But dealing with Iwan’s hospital admissions and serious illnesses is extremely tough and sometimes I don’t feel like I can keep it up. When Iwan is in hospital I’m there all the time, unless I’m working. I only go home to sleep so there is no respite or breather to the point where I’m exhausted. It got so bad that during the last admission that I blacked out due to stress and tiredness. It’s one of the low points of being a carer. When Iwan is well, I can balance work and caring ok, but I can only work part-time because of how much care he needs. People are always saying that work must give me a break, but work is work like it is for everyone else.
What is your daily life like as a carer?
For us, daily life is all about finding the fun and the happy. I’m always on the lookout for new experiences and making sure I make the most of every day. Life can be extremely tiring so it’s important that I set firm boundaries, for example for meetings about Iwan’s care, so that services don’t think I’m available all the time. I might not be paid to care but my time is valuable to me. And getting the breaks I need is tough because of the lack of respite care for young adults.
How has being a carer impacted your life?
Caring has hands-down been the most challenging thing I have ever done. But it has also brought me into contact with amazing people and charities, and has opened up a lot of opportunities that I would never otherwise have experienced.
I feel it’s given me natural empathy and patience to deal with situations. And it’s made me more creative – I only focus on what we can do rather than what we can’t. Negative comments can be hard to deal with, especially when people compare their life to yours, but being a carer has taught me what’s important in life and what being happy is really all about.
What policy or legislation would make the biggest difference to your life as a carer?
The main thing I would like is some kind of formal recognition as an unpaid carer. Unpaid care is like the golden thread keeping so many services together, and we need to be valued and recognised. Respite breaks for young adults with complex health needs are so scarce, we desperately need more spaces. And every workplace should have a Carer’s Policy and support for the carers they employ, who are no doubt working their hardest. Carers are a very robust workforce and so often go above and beyond in their job.
What do you hope for carers in the future?
There really should be statutory paid leave in place for working carers, so that hospital admissions and emergencies are that bit easier to cope with, and to give carers the time and space to deal with stressful situations. I also think there needs to be better financial support in place for carers to recognise the huge financial stress caring has.
Is there anything you would like people to know that is often missed out of the conversation about caring?
People’s perceptions, the narrative about carers is general, is very negative. But the reality, although it’s tough at times, is that you find out what being happy really feels like. Caring makes you appreciate life in the moment and experiences, because you can look back on them when times are tough. For a lot of people, days out are forgotten in a blink of an eye, but days out with my son are really special occasions. The detail, the planning, the anticipation, and the enjoyment is priceless.
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