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
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 their advice for supporting yourself while caring for someone with cancer.
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.
The impact of caring for a loved one with cancer
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.
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.
Seeking emotional support as a carer
Taking care of a loved one with cancer can be emotionally demanding, and you might find that people around you who haven’t experienced the same situation find it difficult to understand what your life looks like, and the impact your caring role has on you.
It’s important to know that you are not alone in your feelings. It’s common for carers to feel frightened, sad or depressed, angry or resentful, lonely and/or guilty. These feelings can come and go; you may find them more intense when your loved one is struggling and less so when they are experiencing better health.
It is important to talk about how you’re feeling. Depending on your own support network, you could talk to a partner or family member, friend, health or social care professionals or a support group. If you do not have anyone to talk to, find support in your areas here.
If you think you may be depressed, it’s important to talk to your GP.
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.