***TRIGGER WARNING*** This post will talk about grief, family, mental health, chronic pain and the role of carers. Please only read on if you feel strong enough. For more information on organisations and charities that can support these issues, visit my mental health and suicide prevention support lines page, or my Get Support page for more specific help. Please also ensure you speak to your GP or local NHS service to enable long term support and recovery. ***TRIGGER WARNING***
I watched on this morning as Kate Garraway spoke so eloquently about the passing and funeral of her beloved husband Derek Draper.
As a family, their story is one that resonates with many of us, and for a variety of reasons. Derek represented one of the worst effected Covid patients since his infection early in the pandemic, and his fight against life altering symptoms was a beacon of hope for anyone, like me, living with PCS (Post Covid Syndrome). Watching their documentary over a year ago was eye opening, and I felt there was a clear desire to be with his family that fought internally with a fight to be in less pain.
Kate herself, though, is the one with whom the public connect. Her ability to hold down enough work to keep her family above water, raise two children beautifully, and manage the needs of a husband with ever changing and worrying symptoms was unbelievably admirable. To me she’s super-human, and I think most of us wonder how on earth she does it.
During her interview on GMB today she talked passionately about the role of carers, and how, although the job is hard, it feels a privilege to her to have had the opportunity to support Derek in his years of need. I’d never looked at the role of carers in such a way, but I suppose I would feel exactly the same if I was acting in the same role for my partner. I’d be scared, organised, and probably anal about getting everything stressful off our plates, and spending every remaining second making sure it had the best value for him.
However, in our home those tables are completely turned, and it’s my partner providing the care for me on a daily basis. While my needs aren’t as extreme as those KG was managing, they vary wildly day-to-day, and sometimes it’s just not possible for him to leave home because I can’t even manage the basics safely. He’s been there for years getting me to the toilet, applying medication, picking me up from falls, making sure I’m warm enough and being my voice when I had nothing left mentally. He’s not just a carer, he’s an advocate, sometimes a single parent and still a full-time employee too. He has a huge amount of weight on his shoulders, but I think anyone would agree that, like KG, he manages it admirably and without a single complaint.
I know I’d be moaning internally, at least.
When my mum was diagnosed with terminal cancer in 2009, she’d only married her long term partner quite recently. I remember talking to her tearfully about her prognosis and her saying…
“This isn’t what he signed up for.”.
The guilt she felt over her health, and the impact it was having on her husband, was enormous. In the back of her mind she’d obviously imagined growing old together, and any caring role would probably come from me rather than either of them.
At the time I reminded her that they’d taken vows in a church that included the words “for better for worse, in sickness and in health” and he wouldn’t have made such vows without meaning them. It’s only since my mobility reduced so drastically that I’ve been able to understand her sentiments.
Although you enter into a relationship in a selfless way, ultimately there’s a strong likelihood that one person will need the help of the other at some point. It’s true of all relationships, from family to friends and romances. We enter in to these unwritten contracts but only consider any real consequences when the responsibility of support is actually needed.
That’s a regret of mine – not talking about how we’d manage if something unexpected changed. Better planning might have made it easier to transition to the roles of ‘cared-for’ and ‘carer’, but how on earth do you plan to be someone you never imagined?
I now live with similar guilt to my mum all those years ago. I know, deep down, my partner wouldn’t ever want to stop supporting me as he does, but I wish desperately that he didn’t have to at all. I wish that his life had more freedom, and that my scary and confusing health didn’t have such a huge imact on his day.
Like most people I once had a life plan, and aspirations for my future and the future of those around me. I was a decent runner, took part in sporting events regularly, I ate healthily, I was eager to keep learning, and I had career prospects as a result. I enjoyed time with friends, enjoyed working the crowd and making people laugh. I was confident in my nature, and knew how to hold myself in social situations. I was a happy and well-rounded mum, with a tenacity to obtain the best possible future for my daughter and support her in getting to her happiest. I didn’t need assistance in achieving any of these things.
Little did I know that my physical and mental health wouldn’t just take my future dreams and aspirations away, it would start to eat away at theirs too.
Caring for someone is a role that no one takes lightly, and I guess you only understand the amount of work you’ve been taking on when, somehow, the responsibility is removed and freedom returns.
There are 5 million unpaid carers here in the UK – all providing real-life-support to people they love for nothing more than their heart, and it’s believed that 84% of them feel more stressed as a result.
I don’t want that for my partner or my daughter. I don’t want to be a burden to them. I don’t like that I’m not the wife, mother and professional I planned. I hate that I’m less capable than I used to be, that my cognitive function is terrible and my confidence is lower than it’s ever been. It makes me angry that I need the wheelchair and walking aids, and I hate that nearly 3 years indoors has become the norm for me. I despise that I’m not the person they need me to be, the person I promised, and that, in different circumstances, I know they’d be happier.
For all these reasons carer support and the care system needs to be reorganised, and I’ll follow and support Kate Garraway’s campaign for it’s overhaul when she gets to it in the future. I don’t see this system as being sustainable, with so many carers ultimately having to give up work to support someone they love. In the end, the economy will suffer, employment will be at an all time low, and skilled workers will be in short supply because no one has time to train or take part in education.
And yes, I’ve mentioned my daughter briefly. As someone living with me it’s impossible for her not to being acting as a ‘little carer’ from time to time, but we are mindful of this, and try to keep the impact on her as tiny as possible. The way we manage this is something I hope to talk about in more detail at a later date.
If you or someone you know is struggling with their health and needs care support, speak to your local councils social services or your GP, who should be able to put them in touch with the right people for their needs.
If you or someone you know is struggling with their responsibilities as a carer, then social services can help you too and theres also a list of carer support charities on my Get Support page.
Thanks for reading and look after each other 💜
Creative Steph 