Good caregiver support is crucial to the physical and emotional well-being of people with cancer.Caregivers play a wide-range of roles, depending on the needs of the patient during and after treatment.
Apart from handling everyday chores, they also provide emotional support and companionship to the patient.
The responsibilities of carers, however, can be overwhelming and isolating.
Many carers find themselves tied down with no time to socialise with friends, pursue hobbies and interests or even do everyday things that most people take for granted.
A cancer diagnosis is life-changing, not just for the patient but caregivers too. And just as the patient needs rest and respite, so do the caregivers.
“Caregivers are really the unsung heroes in someone’s cancer journey. They need support as the responsibilities of being a carer can be overwhelming.
“It is important that caregivers recognise their limitations, whether these are physical or mental and ask for help. They may want to but caregivers cannot and should not try to be responsible for all the caregiving on their own.
“Ask friends and family for help. This will ease some the pressure off and allow care caregivers some time for themselves,” says senior nurse at the National Cancer Society Malaysia (NCSM), Margaret Kumar.
When Karen Sim’s mother was diagnosed with stage four lung cancer seven years ago, her personal life came to a standstill, more or less.
She moved in with her mother and spent all her time outside work seeing to her needs.
It was a conscious choice but what Sim didn’t see at first was the toll it was taking on her.
“My focus was mum. From an active and outgoing lady who volunteered actively, my mother became home-bound and unable to do anything for herself. She couldn’t cook and found it a huge effort just to take a shower.
“It was frustrating for her and so my siblings and I tried as much as we could to fill her days with things she could do at home … playing crossword puzzles and board games, and reading, just so she wouldn’t feel depressed.
“It was challenging because we had jobs and they (siblings) had families of their own to care for,” she recalls.
After a year, she decided to seek help as the exhaustion from juggling her work and caregiving duties was manifesting in feelings of anger and frustration.
“I realised one day that I was snapping at my mother. I couldn’t believe how I was behaving and so I decided to reach out to my friends,” she shares.
Sim realised that she had “monopolised” the caregiving duties and rejected offers of help from even her siblings.
“I thought I could handle it. It was my duty and I wanted to do it. But in reality, it was a lot to do and I couldn’t handle it.
“Once I realised this and shared the tasks with my siblings – I even went for a short holiday to Thailand – things became better for everyone, including mum,” she shares.
Many caregivers, like Sim, don’t seek out the support they need and end up neglecting their own needs, says Margaret.
“Caregivers often fear and feel responsible for the health of their loved one battling cancer but they suppress these feelings because they feel they have to be a pillar of strength and hope.
“But, neglecting themselves can lead to frustration and puts them at risk of emotional as well as mental exhaustion,” she says.
Margaret urges caregivers not to discount the importance of scheduling short breaks each day to alleviate their stress.
“Take small, frequent breaks …five to 15 minute breaks or even longer ones. Include these breaks in your schedule and plan activities for yourself. Deep breathing exercises help. Or do yoga, go for walks, meditate, enjoy a cup of tea. Talk to a friend, listen to music, watch a movie … you need some time for yourself,” she advises caregivers.
To raise awareness and recognise the crucial role that caregivers play in cancer recovery, National Cancer Society Malaysia will be shining the light on caregivers at their annual fundraising event, Relay For Life, this year.
Relay For Life is a community event to highlight issues related to cancer and raise funds for cancer services for patients, survivors and caregivers.
“Through the years, more and more caregivers are reaching out to us and are increasingly involved in our wellness activities.
“So, this year while we celebrate patients and survivors at Relay, we also want to highlight the essential role of caregivers.
“An event like Relay can unite caregivers who often seek peer support.
“Stronger peer support programmes may also lessen the burden and pressure on caregivers.
“Also, funds raised from the event will strengthen our support and wellness programmes, many of which welcome the participation of caregivers,” she explains.
NCSM offers support for families or caregivers and programmes for them to participate in. The organisation also has a helpline which is open to cancer patients, survivors and families. For cancer information or support, call the NCSM hotline at 1 800 08 1000 from Monday to Friday, from 8.30am to 4.30pm.