Caring for the Carer

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Life is a difficult balancing act. Most of us are trying to juggle work and family commitments while also trying to maintain our own well-being and sanity. For the most part, it works, even if sometimes it’s a mad scramble and there are a few near-misses. Occasionally though, it doesn’t work and everything falls in a screaming heap. Including ourselves. 

If you’re a carer of someone with special needs, the balancing act is often a lot more precarious. The demands on a carer can be relentless and overwhelming. And it is the carer’s needs who always come a very poor last.

Carers Get Tired

Caring is a tiring job. It just goes on and on and on. My son Dan is a great kid, or should I say, young man. He is always happy and helpful, but he also has a never-ending source of energy. Even though Dan is nearly 22, in some ways it is like caring for a pre-schooler. I’m not saying that Dan is a pre-schooler, it’s just that he requires supervision round the clock. I can’t just pop down to the shops and leave Dan at home alone. He is either in care or he’s with me. And while Dan continues to live at home, that is how things will continue to be.

Dan requires constant prompting for every little task, even though he usually knows exactly what to do. This does get rather tiring because it feels like you are trapped in Ground Hog Day. It’s just the same day over and over and over again. And since Dan needs to be prompted to use the bathroom, there are no sleep-ins. Not if I want a dry bed.

Dan loves to be out among people, but his boundless energy and long lanky legs make it a very exhausting exercise. Exhausting for me, that is. Dan has no sense of road safety, so I need to hold on to him, just to keep him safe. Unfortunately, Dan loves to travel at maximum speed. Walking slowly is just not on his radar. I think he would make an excellent physical trainer.

 

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Carers Get Run-down

As carers, we are always told to “look after yourself” but no one really tells you how this actually works in practice. We know that we should get plenty of sleep and exercise, eat a healthy diet and enjoy some down time. But keeping up with all the demands of caring, plus everything else the world likes to throw at us, means that the things we know we should do, get pushed aside.

Getting enough sleep is a real challenge, especially when Dan feels the need to break out in song in the middle of the night or early hours of the morning. I know regular exercise is important, but it’s hard to fit it in when there are already so many things I’m trying to squeeze in during his time in care. Now and then I  get enthused about planning an interesting and healthy menu, but at the end of the day I’m tired, the fridge always seems to be empty (I don’t know where it all goes) and I actually hate cooking.

We often don’t even notice that we are getting run-down. So often we are just concentrating on getting through the day, doing all the things we have to do. But when we are constantly giving out, without being replenished, eventually we just run out of steam.

Carers Get Sick

Carers are pretty tough. We can survive on little sleep and we get used to putting ourselves last. And when people ask us how we are, we always say we’re ok – even when we’re probably not. But the thing is, we have just done this for so long that we don’t know any different. We have felt tired for so long, we can’t remember how it feels to not be tired. We have put ourselves last for so long, we feel guilty indulging in a few minutes of down time when there is so much to do. We actually don’t recognise that we are not ok. This is our normal.

But Carers can only run on empty for so long – and then we get sick. And what happens to all the things carers usually do? Well, either someone else picks up the slack or we just focus on what is absolutely essential or things just don’t get done. And then we feel bad for all the things we’re not doing because we’re tired and run-down and sick. It can be a vicious circle.

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Things have been a bit quiet here of late.

I got tired. I got run-down. I got sick.

Getting sick is our body’s way of telling us we need to stop. We need to prioritise. We need to take care of ourselves. We need to learn to say – no.

It all sounds very easy but it’s so hard to do. But you can help.

Everybody knows someone who is caring for a person with special needs. It doesn’t have to be a child. It could be a parent with dementia. It could be a partner with a terminal illness. The next time you feel moved to say, “take care of yourself”, you might like to think about how you can offer some practical help – a few hours respite, mowing the lawn or doing some grocery shopping. Every little bit helps.

Carers need to be taken care of too.

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The Carer’s Road

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Every day is a journey,

and the journey itself is home.

Matsuo Basho

 From the moment we are born, a path stretches out before us. We don’t know where it will lead. We just begin, one step at a time.

Sometimes the way is a smooth, well-worn path and at other times it feels like we are cutting a path through rugged terrain. The road meanders, curving left and right, every turn revealing a new mystery or challenge. Sometimes we coast down hill only to struggle to reach the top of the next rise.

The carer’s road is a life long journey. We didn’t set out to be carers, but here we are, on a road that has contained curves, u-turns and uphill challenges. As the years go by, though, it can feel like we are caught on a treadmill. The days run into each other, a monotonous streak of repetition and predictability, with no reprieve in sight.

Life with Dan can be a bit like that. Every morning the routine is the same – the same steps, the same prompts, the same responses. Dan likes routine. Routine is good. It keeps everything ticking along like clockwork. Sudden changes in routine can cause all sorts of trouble when you’re on the spectrum. But it does feel like you will keep on repeating the same day, forever.

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When you are a carer, it can be tempting to feel that your life is on hold, that you are stuck on the bench watching, while life is passing you by. You see others moving on to the next stage in their life, breaking through glass ceilings, travelling to far-flung places, seeing the sights of the world and climbing Mount Everest. Meanwhile, we are still giving the same round the clock care and supervision. We can feel that life is out there somewhere, in the distance, for others to experience, and always out of our reach.

But this is not true.

Sure, the carer’s road looks different. Different can be good. It is filled with everyday miracles, outstanding achievements and more spills and thrills than a rollercoaster.

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I don’t need to break through glass ceilings. I am quite regularly sweeping up broken glass after Dan has precariously balanced the crockery on the edge of the shelf.

I don’t need to see the leaning tower of Pisa. Over the years we have seen many of the towers of Dan, some leaning, some standing perfectly straight, each one a master of architecture.

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I don’t need to climb Mount Everest. After many years, we finally made it to the top of the toilet training mountain. It was a long haul but the achievement was exhilarating.

Life is not passing us by.

This is our life and we are living it every day.