11 Things I Learnt From Being a Carer

1. We Can Endure More than we Think

If you’d have told me at the beginning of 2019 that my mum (one of my best friends in the world) would be diagnosed with a death sentence of motor neurone disease, I would have crumbled. If you’d have told me that I would watch her lose the ability to move, watch as she struggled to breathe, listen whilst she hallucinated and asked me to burn her alive, I’d have said no way. If you’d have told me that I’d have to care for her full time, shower her, dress her, hold her hair whilst she was sick, move her limbs, sleep with her, put on her breathing mask, and take on toilet duties, there’s no way I’d think I’d be able to do it. Add on the fact that I had few friends living nearby, it was almost impossible for me to leave the house, I existed on minimal sleep, and I’d have to finish my degree – it seems like a miracle that I’m still standing sometimes.

But I am. Caring for my mum made me realise that when we have no choice but to do something, we do it. We don’t crumble. We don’t fall apart. We get on with it. And I take great heart in the fact that if I can do that, I can probably do anything.

My mum specifically didn’t want carers. When she died, a hospice nurse said that we were the first family she’d ever seen who had managed to look after an MND patient without any professional carers. Obviously, there is absolutely no shame in getting outside help but all that hard work and pain did seem worth it to know that we’d been able to give my mum what she wanted.

2. Be Grateful

Chances are, life is not as bad as you think. Whenever I used to get moody customers in the shop, complaining about something trivial, I’d think to myself; ‘what I would give to have problems as small as that’.

Nowadays I make a real point to feel grateful for every tiny thing – for being able to sleep through the night, to leave the house whenever I like, for my privacy, for not having random visitors and health professionals dropping by ever hour of the day, for being able to breathe, to move my arms and legs, to dance, to sing, to talk. All of these things are such a massive privilege. Daily life is full of tiny blessings that we often don’t appreciate until they’re gone.

3. Health is Wealth

Without our physical and mental health, we literally have nothing. We can spend all our time wanting more and more stuff, more and more money, more and more things to fill the void. But if you’re unhealthy, none of it means a single thing. As far as we know (relatively little is known about MND), my mum’s illness had nothing to do with an unhealthy lifestyle. In fact, she was very fit and healthy throughout her life. But so many health issues are caused by lifestyle factors that it’s important to take a look at what we’re doing to ourselves.

The same goes for mental health. One of the hardest things about my mum’s diagnosis was that she, understandably, became very depressed and anxious. She was a completely different person to the happy, laughing mum I’d had my whole life. In fact, I felt like I lost her twice. It made me realise how horrible it must be to feel like that, regardless of whether you’re terminally ill or not. Nothing else matters if you’re severely depressed and unhappy.

4. Time is more Precious than Money

Money is a renewable resource. Time is not. I didn’t know how long I’d have with my mum but I knew that time was limited. And man, what would I give for another hour with her. Heck, what would I give for another 60 seconds. Be careful about where you’re spending your time and who you’re spending it with because it’s truly precious.

5. Life Isn’t Fair

Sometimes I thought (and still think) to myself – ‘how can this have happened? This is so unfair’. We’re generally used to a pretty fair system. As children we’re taught to share and play by the rules to make things fair for everyone. Unfortunately, that’s just not how life works. Life can be completely and utterly unfair. My mum was a good, kind person. She was an amazing wife, friend and mother. She deserved better than this shitty end. And so did we. And yet it happened anyway. You can’t predict life and you can’t assume that everything is going to go your way.

6. Your Outlook is Up to You

A lot of people said to me at the time that they didn’t know how I was coping so well. And to be honest, a lot of the time I wasn’t. I had my fair share of crying, my moments of anger at the world. But I also knew that I had two options here. I could hit rock bottom or I could make the best out of a bad situation. So instead of bemoaning my loss, I appreciated how lucky I was to have such a wonderful mum for 23 years of my life. I received more love in a day than many receive in a lifetime. I got a chance to talk to my mum about everything before she died – to tell her how much I loved her. I was given the opportunity to re-evaluate life, to understand what is truly important to me. We don’t get to choose what happens to us, but we do get to choose how we respond to it.

7. Bodies are Just Bodies

Growing up, bodies always had a certain shroud surrounding them. There’s a general embarrassment around bodies and nakedness but that all goes out of the window when you’re a carer. Things that you thought would gross you out or shock you just become part of the daily routine and you realise that bodies are just bodies. We’ve all got them. They all do the same things. No biggie.

8. Nobody is Perfect

Being a carer made me face up to the fact that I am not always a good person and that I don’t always like the person that I am. Sometimes when I’m angry or tired, I say things that are unkind and that I regret later. Sometimes I’m too blunt or push my ideas on others. I’m ashamed to admit that I’d often see people I didn’t particularly like and think – ‘why is my mum the one that’s dying? Why isn’t it you?’. I’m a very imperfect person.

And so was my mum. I adored her and what she went through was enough to make the calmest of people frustrated and angry. But throughout her life she could be unpredictable in her moods, and wasn’t above a gossip every now and again. But I loved her regardless. None of us are perfect all the time. Being a carer taught me to have compassion for both myself and others when we do something wrong or unkind.

9. Compassion & Kindness are Everything

Speaking of imperfect, this is something I still forget now and again – you never know what somebody is going through. I remember working in the shop one day and a customer was particularly rude and horrible to me. Usually I’d brush this off but I was so physically and emotionally exhausted that it made me cry. I just really didn’t need the extra hassle. Being kind isn’t too hard and it can make a world of different to someone going through a difficult time. It’s easy to think that we exist in a vacuum and that are actions don’t have consequences. But they do. If you can be anything, be kind.

10. My Body is my Best Friend

I have spent the majority of my life hating my body. I would look in the mirror as a teenager and grab my thighs, wishing I could hack at them with a cleaver. I spent plenty of time starving myself in the hopes that my body would get smaller. Seeing my mum rapidly lose weight, feeling her ribcage as I lifted her, I realised how cruel I’d been to myself.

My body is amazing. It lets me do all the things that my mum’s body prohibited her from doing. Thanks to my body I can do all the things that make me happy. I can breathe. I can walk. I can go out for a nice meal if I fancy it. I am so unbelievably lucky to have a body that works normally.

Who cares if it jiggles here and there? If I have cellulite on the backs of my thighs? Or my skin tone is uneven? IT KEEPS ME ALIVE. How bloody incredible is that?

11. Life is Short

Life is short – dangerously short. Sometimes it baffles me that people are not running full speed at what they want. You have no guarantee of tomorrow. Stop doing the things that you dread doing. Stop going out if you’d rather stay in. Stop talking to people that make you feel like shit. Stop forcing yourself to eat a diet of raw vegetables.

Prioritise the things that make you happy. Hug your loved ones. Get outside. See the world. Write the book. Run the marathon. Just do it.

DONATE.

I will be running (bit of a strong word for the lively walk-jog I usually adopt but nevertheless) the Bath Half Marathon in March 2020. If you feel called or able to, you can sponsor me on my Just Giving Page. I’m raising money for the Motor Neurone Disease Association.

Unfortunately the nature of MND makes it expensive. It’s an intense disease that requires A LOT of professional help (most families choose to use professional carers), and expensive equipment (including breath assist machines, cough assist machines, ramps, motorised wheelchairs, profiling beds and lots more). This means that a lot of the money raised goes towards care rather than cure. The more money that’s raised, the more likely we are to one day be rid of this horrible disease.