Caring for the carer
When someone ‘has cancer’, the whole family and everyone who loves them does too. They all become part of the cancer club. However the needs of the carer are often overlooked. Everyone asks how the person living with cancer is. Very few ask how the carer is. The carer doesn’t mind as their focus is on the person living with cancer — their purpose in life is to do everything they can to “make it better”, knowing deep down that they can’t make it better, all they can do is try and make it more bearable. I know from personal experience as both a carer and now someone living with incurable cancer, that caring is so, so tough — in my opinion, tougher than actually living with cancer.
Caring for someone living with cancer, you need to learn to bounce back, pick yourself up and dust yourself off, ready for the next onslaught that the cancer journey will bring your way. This ability to bounce back is also known as resilience. You can develop it. It’s not easy, but it’s possible. You’ll need resilience that will sustain you for the long haul. Cancer is like a piece of string — who knows how long it is! Developing resilience requires time for yourself. Time away from the person living with cancer. Without this time away, you’ll burn out. Trust me, I’m speaking from experience here. I learnt the hard way, by becoming so overwhelmed that I would cry at the drop of a hat, snap at people and be so tired I would drive through red lights. You don’t want to get to this stage, you’re of no use to yourself, let alone the person living with cancer.
As a carer for my late husband, Matthew Chadwick, I want to share some of the lessons I learnt and tools I used to develop my resilience. These allowed me to be present and have quality time with the person I loved.
Social wellbeing is incredibly important as a carer. As humans, we need to belong, be a part of something. On the cancer journey, it almost feels as if carer’s are left alone on the sidelines. Everyone is interested in the person living with cancer and no one seems to remember the carer. It’s so important to build a support network, about five close friends or family, who can be there for YOU. Not the person living with cancer but you, the carer. You need people who you can just let off steam to, who you can have a cry with just because and who can give you some respite — pamper you for the evening. You would do it for your friends, so let your friends/family do it for you. Accept their support and help. Do not feel guilty. It’s helping you to be strong so you can be the best carer for your loved one.
The other big thing about social wellbeing is trying to maintain your social network. Both you and the person living with cancer need things to look forward to. However, while you may say “yes” to dinner parties and social gatherings, when the time comes, more often than not, the person living with cancer isn’t well enough so you inevitably end up cancelling at the last minute. True friends and family will understand this. They will not be offended. As a carer, the disappointment of having to cancel was like an emotional blow. I never found an effective way to cope with the disappointment — I would often end up on the sofa, just me and a glass of wine, while Matt was sleeping upstairs.
Don’t give up on your social network though. As much as you don’t want to think about it, you will need them once your loved one has passed on. It’s finding those true friends who don’t mind that all you can talk about is being so tired, or the endless hospital appointments and financial worries. True friends who continue to invite you, despite those frequent cancellations, so you continue to feel included and not isolated.
Your emotional, or mental wellbeing is super important. If you don’t have the headspace to be present, you’re missing out on making memories. There are lots of things you can do to help yourself, some will feel more natural than others. Many support groups recommend mindfulness or meditation. This is something I could never do as a carer as any time I stopped I’d fall asleep! However, I did rely heavily on journalling, or blogging. It was my way of processing what was happening. The simple act of writing things down helped me untangle everything that was going on in my head. These jottings don’t have to be seen by anyone else, they could simply be a brain dump in a private journal.
I also made use of counselling or talking therapy. At first Matt was offended that I needed counselling but when he saw my mood improve and that I wasn’t crying as often, he understood that it was helping me to help him. I was wary of the counselling at first but I had a wonderful lady who would just sit and listen. It was so useful to talk to someone who didn’t know Matt or me. I could say what was on my mind, then she would help me prioritise and put things in perspective. If counselling isn’t your thing, there are support networks specifically for carers so you can be with people who understand what you’re going through. You can say how you’re really feeling because everyone else is probably feeling the same way. No need to explain, apologise or feel guilty.
Let’s not forget the importance of physical resilience. This includes eating, sleeping and exercise. While I was caring, I used exercise as my release as it was the one thing I could control. It gave me time out and fresh air . While I’d come back physically exhausted, mentally I was refreshed. On the other hand, my sleep went out the window. Matt would wake every two hours on the dot throughout the night. By 4 am, I’d give up trying to sleep and would get up and start my day. I was existing on 4–6 hours’ sleep a night. This broken sleep has become such a habit, seven years on I still struggle to sleep through the night. Sleep is so important — for both the person living with cancer and the carer. While it may seem like an indulgence, a good night’s sleep is one of the best things you can do to help both of you.
The final aspect of the resilience toolkit is spiritual wellbeing, or a sense of purpose. As a carer, your purpose is what keeps you going. It’s ok to have more than one purpose. For me, I continued to work while caring. Work gave me both a purpose and a distraction. It was difficult and looking back I didn’t do a great job at either, but having them both is probably what kept me going.
As a carer, you have a responsibility to care of yourself first and foremost and then take care of the person living with cancer. The best way to practice self care is to develop your resilience. Develop social, emotional, physical and spiritual wellbeing tools that suit you, and which help you to get back up again after life’s inevitable setbacks and losses.
Links to sites and support groups specifically for carers
