Health and Social Care
Fiona is a full-time carer for her son, Joff, who lives with Lowe Syndrome. Fiona took part in our Voices Video campaign. She shares her experience of being a full-time carer and what her hopes are for the National Care Service.
I was very happy to take part in the Voices video with my son. I wrote the prose below last year in frustration at how unpaid carers and their cared for are treated by the system.
The potential of the National Care Service to create a system that works for people instead of against them is immense. I hope that it becomes an integral part of Scotland as a country.
Our son Joff is 28 and lives with Lowe Syndrome, an ultra-rare complex genetic disorder that affects males only. It broadly concerns the eyes, brain and kidneys. It’s life limiting and life threatening. We also have two daughters, one older and one younger than Joff. My wings and my sun.
They say you should feel lucky to be here. And I do. They say it is a privilege, many people would kill to take my spot, so I should be grateful. And I am. But there are things they never tell you. There are things you’re left to discover. Things taken from you.
The day my second child was born was one of the happiest of my life. But I had no idea what was coming.
Within hours, we were plunged into a new world. Our baby has cataracts! They operate at 10 days old, a record in Scotland at the time. He’s fitted with contact lenses, begins physio.
I’m expressing milk to take to hospital for a month, more, before he gets home. There’s no further information, but here you go, have a steep learning curve. His nystagmic eyes are so tiny.
Are we hurting him?
Being a parent carer
Not all parent carers have the same experience. Some get a diagnosis for their child. Some never do. Some are raising a disabled child and siblings. Some never return to their career. Some exist on state benefits. Some have extended family to help. Some are drowning, not waving.
Not every parent carer makes it through. The unspoken rule is that you’ve gotta make it. Nowhere is it ever explicitly said that it’s ok to fail, that you may need to step out for a while. Many of us are buried in guilt and the weight of responsibility.
I never think of the part that I lost of myself along the way.
Am I destined to live this twilight zone existence as long as my son lives? There’s nothing mandated to ease the toxicity of this loneliness. They don’t warn you about a lot of things.
You need to be an unpaid carer to understand unpaid care.
They tell you things will get better. And on some level, they do. As your child grows in their unique way, so do you as a parent. You learn from other parent carers, from professionals, the third sector. You may achieve some equilibrium.
So much of this path feels like it’s out of your hands. You never expected to have to knit health, education and social care together, and they’re never easy bedfellows. You might or might not get the service you seek.
Your child becomes school aged. An entirely new world of fear and stressors. There’s always something humming alongside, shouting alongside. You may have lost a veritable mountain of earnings, you may qualify for welfare. The caring loop looms.
You become the parent of an incapable adult. You still struggle with the decisions you make and the system makes for you. Every day is dealing with survival so closely, it’s woven into you.
Forged: not taught
Through it all, on every level, you wrestle with a system. A system that wasn’t designed for you, wasn’t designed for your child. A system that is resistant to change at every level.
There are wonderful things about being a parent carer. Immense and unique experiences. But parent carers aren’t taught, we’re forged. Melted down and reformed. Made invisible and kept invisible. Destroyed, depersonalised, disempowered. Again and again.
So when parent carers, any unpaid carers, rise in record numbers, understand that it isn’t always a choice for anyone to make. It’s a job that the State expects you to fulfil for years. There’s so much expected, so much you give.
We all need care at some point.
Who cares for carers?