Caring for a loved one who has recently been diagnosed with a life-threatening or life-limiting condition can be overwhelming. But most people just get on with it, as the needs of the person who is ill become uppermost in the list of priorities.
“It is usually a little bit later on that people start to look at their role as carers, maybe after the person has received surgery or other treatments or when the person is well enough to come home,” says Brid O’Meara, a psychotherapist who will speak at Who Cares for Me? – Challenging Carers to Care for Themselves Too, a webinar at 6pm on Tuesday, October 22nd organised as part of Brain Tumour Awareness Week.
That caring can be both physically and emotionally draining is widely understood, yet, in spite of this knowledge, many carers neglect to look after themselves.
“Without good self-care, longer-term care can lead to stress, compassion fatigue and burnout,” says O’Meara.
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Lucy Barry cared for her son Tony (37) following his diagnosis with a brain tumour in September, 2023. “You kind of revert into thinking that your son is still a child and that you are still a young parent,” explains Barry, who is a retired schoolteacher.
[ Surviving a brain tumour: ‘I felt like a stranger in my own life’Opens in new window ]
Reflecting back on that time one year later, Tony says that “on leaving hospital after surgery, I felt weak and low and even though I had my own place, I stayed at home for a while. My mum ferried me to and from all of my medical appointments and helped to build my confidence back up.”
Lucy says she went into autopilot at the beginning but recognised after a few months that she was totally overwhelmed and exhausted. “My sleep was very broken and I was kind of losing perspective on the situation,” she recalls. “I felt like I was going under a little. My energy was poor and I wasn’t eating properly, so it was taking its toll.”
It became clear to her as time went on that what she was doing wasn’t sustainable: “I realised that if I was going to be able to help Tony going forwards, I needed to get my own life back on track. I attended counselling, which I found hugely helpful and supportive. I started walking again and linked in with friends, who were extremely supportive.”
Tony says he also began to call more on his brothers, sister, father and wider family and friends for help too. “We all realised that mum needed to step back and make it more of a team effort,” he explains.
O’Meara is adamant that carers should take small chunks of time out to do something they enjoy every day. “It’s about maintaining your own identity – meet someone for a coffee, get some exercise or sing in a choir.”
She emphasises how important it is for carers to look after their own basic needs – eating healthily and having a good night’s sleep – neither of which is easy when in a caring role.
“When you are tired and depleted you will become susceptible to infections yourself, so you need to look after yourself too.
“It’s important to build a support network around you – including people you can call on out of hours. Sometimes, people offer to do things that you don’t need them to do but you could ask them to do something else instead. Accept help.”
On the trickier topic of compassion fatigue – when the carer mentally struggles to care for their loved one – O’Meara says the key is to develop a sense of self-compassion.
“Self-care and being kind to ourselves are the antidotes to compassion fatigue. We aren’t so good at bringing things back to ourselves in western culture but it’s about asking yourself what you need right now. How can you support yourself right now? How can you be kind to yourself?”
Lucy adds: “We are still coming to terms with Tony’s diagnosis a year later. We worried so much about him. I feel privileged to be able to help him. I am retired now so I do have the time. And I also try to give him the space that he requires. We continue to worry but you try to live in the day.”
Finally, it’s also important to remember that not everyone is cut out for being a full-time carer, so rather than jump into the role, family members should reflect on whether they are the right person for the job.
“It’s about asking what services are available. Are other people better equipped to do this? We all have our strengths and talents – some are better at organising things and others are better at the physical care,” says O’Meara.
Keith Walsh, broadcaster and mental-health advocate, will also speak at the aforementioned webinar.
“Taking care of yourself isn’t a luxury. It’s a necessity. Caring for someone you love can feel like a vocation but finding moments to recharge through mindfulness, creativity or exercise, you are strengthening your ability to support your loved one,” he says.
Fiona Keegan, CEO of Brain Tumour Ireland reiterates the need to support carers.
“It is often a huge shock for families to assume a caring role and they need support,” she says. “Partners, parents, siblings and, sometimes, offspring will have to come to terms with a new reality supporting a loved one who can have a wide range of challenges to cope with from the physical to the emotional.
“That’s why when caring for a person with a brain tumour, it’s important to take some time every day for yourself.”
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