Key takeaways
- A cancer diagnosis is not only a major event for the person diagnosed, but also for their loved ones, friends and colleagues
- The impact of caring can be physical, psychological, emotional and practical; many carers do not know where to go for help or feel they deserve it
- The most important aspect of looking after yourself as a carer is to have compassion for your situation and how you feel about it
- Carers often don’t disclose their status to employers, but there are some telltale signs to look out for
A cancer diagnosis is not only a major event for the person diagnosed, but also for their family, who often find themselves in the role of caregivers. In fact, some studies report that the impact on family members can be even greater than on patients – affecting not only their physical and psychological health, but practical matters like finances. These effects have been amplified since the pandemic, as the strain on NHS cancer care and long waiting times has shifted even more responsibility onto carers’ shoulders. In this guide, Cancer Nurse Specialist and Cancer Coach Reta Sowton, shares her advice for supporting yourself while caring for someone with cancer, and has some guidance for managers, too.
Are you a cancer carer?
Many individuals looking after someone with cancer do not identify with the term ‘carer’. However, Macmillan Cancer Support, one of Britain’s largest cancer charities, defines a carer as someone who provides more than five hours of care per week to someone living with cancer, or provides one to four hours of care per week and says this has a negative impact on their life.
More than two thirds of UK cancer carers are women, and, in general, more women from ethnic minority backgrounds have caring responsibilities than those from white backgrounds. Women caring for those with cancer are also more likely to become ‘sandwich carers’ – those needing to care for young children as well as family members with cancer.
What do cancer carers do?
Cancer care is defined as the care provided during and following primary cancer treatments, such as surgery, chemotherapy and/or radiation therapy, or the longer-term care of someone recovering from or living with cancer in the community, including end of life care.
The support tasks involved in being a cancer carer vary depending on the patient and type and stage of cancer. In general though, carers could be providing any or all of the following types of support:
- Providing or assisting with personal care including washing, dressing, bathing and toileting
- Administering or monitoring the provision of medication (from providing simple pain relief to injections) and ensuring treatment continuity
- Providing domestic care, including cooking, cleaning, shopping and collecting prescriptions
- Organising or providing childcare
- Facilitating access to or providing transportation to get to and from medical appointments
- Providing emotional and social support
- Assisting with financial management tasks
What is the impact of being a cancer carer?
Unpaid carers are generally more likely to suffer from poorer mental and physical health compared to those without caring responsibilities – from lack of sleep and exhaustion, to depression and loneliness. In the 2013 State of Caring survey, 84% of all carers across the UK said that caring had had a negative impact on their health. In 2021, the same survey revealed that 91% of carers felt their levels of stress and anxiety had increased. Around 77% reported worsened mental health, while 67% reported worsened physical health.
A number of studies have shown that female cancer carers report higher perceived levels of negative experience in caregiving, such as lower mental health, lower physical health, poorer health-related quality of life, lower life satisfaction and decreased marital satisfaction when compared to men caring for cancer patients. Tiredness is unsurprisingly the most common physical impact on carers. And when caregivers experience poor health, this has shown to lead to poorer care outcomes and psychological distress for the people they care for.
How to support yourself while caring for someone with cancer
By Reta Sowton, Cancer Nurse Specialist and Cancer Coach
Carers often go through an intense journey. The dynamics in your home situation might have changed, which can be stressful. It’s common for there to have been a change in roles at home, with the carer suddenly becoming the main breadwinner or taking on the responsibilities of a home and childcare. Caring can be lonely, and carers can experience anxiety and depression in the same way patients can. You might feel frustrated that you are no longer able to live your life and/or feel guilty, or even angry towards the diagnosis and your situation.
As a carer, you likely have very little time to look after yourself – physically, emotionally, psychologically and/or socially – or don’t feel you can prioritise yourself. This is the case for the vast majority of carers. But if you burnout as a carer, what happens to the person you’re caring for? Understand that caring for yourself is a really important part of caring for others. If you can allow the person living with cancer to have even a bit of self-management, insist on it. They’ll feel more empowered, and you can take some time to look after yourself.
If you burnout as a carer, what happens to the person you’re caring for? Understand that caring for yourself is a really important part of caring for others.
Reta Sowton, Cancer Nurse Specialist and Cancer Coach
The four fundamentals of caring for yourself
1. Self-compassion
The single most important way to care for yourself as a carer is to be compassionate with yourself. Even though you’re a carer, you’re still allowed to be yourself, to have fun, to go out for coffee or even have a disagreement with the person you’re caring for. Equally, asking for and accepting help, as well as sharing your caring responsibilities, is an important aspect of self-compassion.
2. Rest and relaxation
Exhaustion can be a common problem for carers. If you’re the only carer overnight, you might have very disjointed sleep. You might be kept awake by anxiety, or trying to catch up with all your other responsibilities during times when you could be resting. It can be helpful to find something you enjoy that feels calming. This could be time in nature, meditation, yoga or a hobby – anything you can do to switch off and bring you some peace.
3. Connection
When you’re a carer there is often very little time to connect with people beyond the person you’re caring for, and it’s easy to become isolated. Maintaining other relationships – particularly friendships – is vital. Sometimes sharing is often easier with strangers than with your own support network, and talking to others in similar situations can really help. There are so many places to get that kind of support now. A lot of charities have friends and family groups or support for loved ones and carers.
4. Practical advice
As a carer, there will come a time when you’ll need advice around practical matters like finances or employment rights. Macmillan, Citizens Advice Bureau and Maggie’s centres all have these resources. Carers are often frightened to speak to their employers, but can find them to be much more compassionate than expected. Employers also have access to resources like employee assistance programmes, which can provide all kinds of advice.
What to look for as a manager or friend of a carer
It’s vital to understand the impact on someone of a loved one having cancer, and how this might affect their ability to look after themselves. Many carers may not discuss issues with you directly – they could be juggling under the surface and feeling exhausted. Some signs to look out for are:
- Less reliable than previously
- Turning up late to work, needing to leave early or taking extra sick days
- Problems with concentration or cognitive abilities
- Signs of stress or distress (more argumentative, more withdrawn, less engaged)
- Trying to do extra work to prove themselves.
- Unhealthy behaviours like smoking or drinking
- Over- or under-exercising or eating
If you notice a pattern of these behaviours, a discrete conversation to see where you might be able to support them, could be invaluable.
If you’re struggling to cope while looking after someone with cancer, you’re not alone. Our cancer nurse specialists are trained to support not just those living with cancer, but the whole family. They can answer questions, offer practical advice and point you in the direction of further support.
While we have ensured that every article is medically reviewed and approved, information presented here is not intended to be a substitute for professional medical advice, diagnosis, or treatment. If you have any questions or concerns, please talk to one of our healthcare professionals or your primary healthcare team.