“Caring was a thing with claws. It sank them in, and didn’t let go. Caring hurt more than a knife to the leg, more than a few broken ribs, more than anything that bled or broke and healed again. Caring didn’t break you clean. It was a bone that didn’t set, a cut that wouldn’t close.” ― V.E. Schwab, A Conjuring of Light
Ten years ago I spent six months caring for my mother, in and out of the hospital, from an out of the blue cancer diagnosis until her death at a far too young age. It was a surreal time that seemed to just pass in a blur. Afterwards, I would often look back and wonder how I had managed to work and keep everything going…and then how anyone does in those situations. The answer, of course, is fairly simple. You do it because you have to. Adrenaline keeps you going. Someone you love is in trouble. You keep going because they need you to.
In more recent times my brother has been very seriously ill and thankfully is making a slow but steady recovery. During the weeks of his illness, I was surprised by the things I had forgotten about these days of travelling over and back to the hospital. I forgot the gut-wrenching exhaustion of hope versus fear. The guilt when your mind strays into “what if” territory as if even picturing a bad outcome will make it happen. The total unpredictability of good and bad days that appear to have no pattern whatsoever. The waiting. Because no matter how good the care, hospitals involve a lot of waiting.
I also forgot how hospital visits can strangely become the least complicated part of the day. It’s all the rest, trying to keep things going. Trying to squeeze your normal daily routine into a couple of hours. The exhaustion even though you tell yourself there’s no need for it, you’ve been sitting in a hospital…how is that tiring? But it is.
You lose yourself when someone in your life is seriously ill or needs care. There isn’t time to attend to every aspect of your life so by necessity you sacrifice anything that isn’t strictly necessary and you become all about what needs doing, what others need and how to balance the chores and tasks of every day.
It was driving home from the hospital one evening that I became aware of how low I was feeling. It was in contrast to the day I had had where things had been good. My mood made me feel guilty. Why did I feel like this when my brother was improving? Was I not happy about it? What was wrong with me to feel like this when things were finally settling?
It took a while to work out the possible answers for this. Just as my brother was struggling with the fact of how close to death he had been, I think we all were too. The adrenaline was fading now that the panic was over. Every morning when I got up I felt tired. In the evenings I would look forward to doing something light, reading or watching something but then would not be able to settle to it. Gradually the greyness of a depressive episode was seeping in because there was simply no room for anything else. And the memories of ten years ago seem to become realer and realer as I walked the same corridors and had many of the same conversations.
It’s hard to think of things that can make a scary time lighter but they are there. Some of these are a little hypocritical for me to advise but hindsight is as good a teacher as anything else. If someone offers practical help and it’s something that would help or lessen your workload, accept it. Anything that makes your day even a small bit easier is a good thing.
One of the things I learned after my mother’s death was the importance of being specific when offering help. Saying “I’m here if you need me” is nice but without being specific no one is ever going to take you up on it. Offer what’s possible; “I’m off on Tuesdays if you need help with transport, cleaning, school runs, dog walking etc”, “I could cook a meal”, “I’m passing the hospital on Friday-would you like a lift?” None of us find it easy to accept help but a direct offer is much easier to consider and sometimes more welcome than we know. When my brother was at his sickest, a friend offered to come and mind my dogs for me, mentioning the times that she would be most available. This offer was much appreciated because of the thoughtfulness behind it.
Sometimes help can be utilised in small but welcome ways. If someone can help you to update others on the patient’s progress, it can spare hours of texting or having conversations. It’s lovely when everyone cares and wants news on your relative but it can also be exhausting and sometimes the feeling of reassuring everyone else while you continue to worry can feel quite isolating. Make sure there are people who can hear your own worry and anxiety and just be with you in it.
Self-care might sound like a cliché and an obvious one but it is important. Rest is vital to staying well. Exercise and/or fresh air as much as can be managed gives us a (literal) breather. Managing our time so that hours outside of the hospital or caring duties can be used in the most beneficial ways possible really helps; doing what’s important and putting aside the things that can be postponed. Thinking about what we need, what’s important in the here and now. Sometimes even little treats in the routine can offer a little boost-a favourite radio program on the drive to the hospital, the hot chocolate served in the café, a quick coffee with a friend. And most important, take advantage of other people visiting your loved one and try to take the time for you without feeling guilty. Medical staff will tell you this. You cannot be there 24/7 and if you feel guilty when you’re at home you might as well be.
Above all, just remember guilt is part and parcel of the process and you will constantly feel like you could and should be doing more for your loved one but in fact you are providing the most precious thing of all-your love, care and concern. Even sitting in a waiting room outside ICU and waiting for news, your presence is appreciated and your loved one benefits from a very different but essential medicine when you sit with them and let them know how much you care.
You are important in so many different ways and it can be so easy to forget this in the chaos and trauma of serious illness. The best advice I can give is something that a dear friend said to me over a decade ago and that I have never forgotten:
Hang on to yourself.
Support Our Campaign
We rely on the generosity of the public to fund our work and so far together we have achieved great things! Please do continue to support us so we can provide future generations in Ireland with the resources to recognise and talk about their emotions, and equip them to navigate the ever-changing world around them as they grow
