He's My Husband First: Reflections Of A Carer

Martyn asked me a very long time ago to write him a post about being a carer. As an award-winning procrastinator, I had successfully avoided this task for a good few months. Until now.

Why do I avoid this subject? Well, how do I write about it all? How do you get to a place where you're comfortable talking about how hard, how challenging, and how sometimes painful caring can be, especially when the person who's going to read it is the very person you actively try to protect from hearing it?

I am a carer to Martyn. A full-time carer. He needs me during the day, and he needs me during the night. I can go out for a couple of hours, but I need to make sure he's set up. I can go for longer, but only go if I know one of our children are also there to help him if he needs it.

I'll tell you something he already knows: how physically hard it is. I do manual handling that would never be allowed in a care setting, and so do thousands of carers all over the country. My back is totally ruined. Sometimes it feels so painful that it could just give way.

Lack of sleep is really tough. Everyone knows sleep is so important, not just physically but mentally, too. It's been years since Martyn was able to turn himself over in bed. If he wakes in pain, needs to turn, needs to turn back, needs his legs moved or his knees bent; you guessed it, I need to wake up. Not every night, but most nights.

What is harder to share with him, and with the world, is how caring makes me feel in relation to him and the world around us.

See, I've watched, and will continue to watch, the man I love most deteriorate in front of me. From walking, to a manual chair, to a power chair, to sliding boards, lifting cushions, stopping transfers, profiling beds, toilet lifts, feeding arms and lord knows what else. It's all been there, and there's more to come.

It is heartbreaking. There are no words I can find to describe watching the loss of independence and loss of dignity, no matter how much all these professionals claim otherwise. There is nothing dignified about some of the things we have to do. Some of the things we'll have to do soon.

I've watched Martyn's eyes as we look at hoists. He hates the idea of using one. I find it hard. I struggle knowing that if my back wasn't so bad, if I weren't so weak, he wouldn't need one yet. He will lose his ability to stand because of something I need to do to help care for him.

I've watched him practise piano over and over, stumbling over keys that, just a few years ago, his fingers danced over.

I've watched his friendships disappear. People moving away. People moving on. People who can't invite him inside their house because he can't get in, but who don't invite him anywhere else, either.

The truth is, it's hard to make friends as you get older. It's even harder when you can't access people's homes or places on your high street. Places that aren't near a train station. I've seen him left out. 

I've held him as he's wept for the lost friendships and the slow stripping away of his talents. I've comforted him when his muscles twitch and cramp, when the medicine and patches don't work, when he calls himself a burden and hates his body. I remind him I love him.

Caring for my husband is painful, both physically and emotionally. It can be isolating and tiring. It can be frustrating and rage-inducing, seeing and hearing how he gets treated outside the home. It can be utterly disheartening, fighting for every little thing.

Caring for my husband is also an honour. A privilege.

He is intelligent and wise, and he thinks his way out of many of our mess-ups! He is funny. He has his childish sense of humour and his dark sense of humour, and both are wonderful. He is patient and kind.

I often forget that his muscles are thin and that his legs are bowed. I forget that he twitches and breathes in funny ways at night. That he has to wear eye masks because his eyes can't close. I often forget that he slurs his speech or can't do something he could do last year.

Not because I'm a rubbish carer or a forgetful person.

Because he's my husband. One part of my entire world.

Maybe that's what I want people to understand about being a carer. That you can love someone more than words can say and still find the caring hard. That being grateful for the person you have doesn't mean you can't grieve the life you had, or the life you thought you'd have.

Both things can be true and perhaps we need to be allowed to say that out loud.

Hannah, his Wife.