In The Selfish Pig’s Guide to Caring, author Hugh Marriott tries to put his finger on the advice he would like to have been given while he was struggling to learn new skills and find his way in an unfamiliar role – caring for his wife Cathie, a Huntington’s Disease sufferer. Here are some of his tips.
Ask another carer
Carers are the ultimate pundits on caring. You could go round in circles looking for a piece of information, but where you’re most likely to get it is from another carer. So when stymied, or even before you’re stymied, ask another carer. Ask them first. They’ll know.
Develop a thick skin
Nobody ever tells us how to keep on knocking at the various help organisations and government departments’ doors without becoming suicidal in the process. Yet it’s something we have to find out. All those comforting comments about ‘Always being here when you need us’ and ‘All you need do is apply’ lead inevitably to disillusionment the moment you do apply. But give up and you get nowhere. No, you have to persist. And it can be a debilitating process. But understand that rejection is not a reflection on you or the justice of your cause. It’s just something that happens to everyone.
Don’t think of the disability as a difficulty or a wedge. Something that separates you, and can drive you apart. Far better to think of it as something that you share. Something that unites you. I know that the other person is the one who has it, clinically speaking; but it’s affected you nearly as much. Perhaps just as much, though in a different way. And since you share the disability, it’s okay to share the caring. One moment their needs are paramount, and the next yours are. Share and share alike.
This tip is about not suffering in silence. It’s about talking to anyone who’ll listen, and even to those who won’t. It’s about unpenning your emotions. About harassing officials, sharing with other carers, coming clean with friends. Carers are traditionally terrible about talking. And look where it’s got us. Start talking now.
It doesn’t really matter what you’re asking for (information, support, equipment, whatever). The chances are you’ll get
- no answer
- an incorrect answer
- a ‘there, there, dear’ answer
rather than the sort of answer you are seeking, need and deserve. The natural course of action can be to retreat, nursing a sense of powerlessness. But if you keep on asking, you stand a very real chance of getting.
Keep disabled time
But whenever you become frustrated at the pace of living imposed by caring, it’s highly likely that you’re operating within your old time frame, or the time frame of your friends and colleagues. Slow down and start to live at your loved one’s pace, and much of the frustration will fade peacefully away.
Wear a special uniform
I don’t say you ought to wear a white coat while doing your caring. But some carers do, and the rest of us can at least wear metaphorical uniforms to achieve the same result. You could do adopt a professional persona when you’re carrying out tasks like bathing or feeding. This persona is different and distinct from your persona as your loved one’s partner or child or parent. It will carry the authority of a uniform, and might persuade them to pay attention to what you say. Just for a short time.
Be a Selfish Pig!
The first duty of any commercial organisation, so it’s said, is to stay in business. Not to go bust. Well, the first duty of a carer is to go on caring. Caring is long-term. It’s physically tough, emotionally draining, and financially difficult. It’s all too easy to run out of energy, and to burn out. When that happens, you stop caring. Unluckily for you, you’re not a saint, or a paragon, and if you let the hardships of caring get you down, you won’t be able to last the course. The way to last the course is to recognise how crucially, vitally important you are. Take your own needs into account. Being a proper SP doesn’t mean neglecting your loved one, it means neglecting yourself. Which I bet you have been doing.
Adapted from The Selfish Pig’s Guide to Caring: How to cope with the emotional and practical aspects of caring for someone by Hugh Marriott.