Mental health when caring for someone with cancer
Caring for the needs of someone with cancer can be a satisfying and positive thing. It can bring loved ones or carers closer to the person with cancer and strengthen the bond between people. For many people caring provides a sense of meaning and emotional fulfilment.
‘I developed anxiety but had to be strong because I am the carer. There was support for the person I was caring for, but not for me as the carer. I had to be brave, strong and show no emotion – I had to keep it in. I didn’t speak to people about it and cancelled many of my social events. I experienced loneliness and isolation.’
It can also be difficult. Caring for someone with complex needs or your caring becoming a full-time job can affect your mental health. You might also find it difficult to balance your mental health needs and the needs of the person you are caring for. And it can be challenging to share your difficulties with others because you want to protect the person you’re caring for.
How might caring for someone with cancer affect your mental health?
Caring for someone with cancer can affect people in different ways, but some of the common experiences can be:
- grieving the life of someone before they die (anticipatory grief)
- fear about your own future, losing your loved one or their survival
- feeling vulnerable, helpless or overwhelmed
- feeling you’re not doing a good enough job caring (feeling inadequate) or emotionally tired
- having unwanted thoughts and worries that pop into your head without warning at any time (intrusive thoughts)
- having repetitive negative thoughts that go around in a loop (rumination)
- having sleeping problems, including nightmares
Sometimes, feelings and experiences of caring for someone with cancer can develop into mental health problems. Some of the mental health problems can include:
- an episode of depression
The mental health charity Mind has more information on these mental health problems. This includes treatment and self-care information.
When might caring for someone with cancer affect your mental health?
You might struggle with your mental health at any stage while looking after someone with cancer. It might happen after their diagnosis, during treatment or once they have finished treatment.
How you might feel often depends on:
- what is going on for the person with cancer
- their diagnosis and the uncertainty around that
- how much they share or do not share with you about their experience
- changes in the household dynamics and family roles
- how much support you have
- how much you need to care for them
- what else is going on in your life
‘When my husband was diagnosed understandably all the concentration was on him – no one asked how I was and what it did to me. Initially, his prognosis was short and there was a lot of uncertainty. I was afraid right after his diagnosis. It was hard to talk to him initially, and we protected each other. I joined counselling and could speak there and found it a safe place. I had anxiety and fear about the future.’
At the time of the person with cancer’s diagnosis, you might feel that your world has been turned upside down. Many people are in a state of shock and disbelief. You may feel frightened, angry and uncertain about the future. This could be because of the person with cancer’s diagnosis or prognosis and dealing with the idea of being a carer.
All of a sudden, there might be aspects of your and your loved one’s life before diagnosis that you no longer can take part in. Or you might have to let go of a job or activities that gave you joy and fulfilment. You might also be unable to talk to your loved one about their diagnosis. This might be because you want to protect them.
For some people, it can feel like grief for the plans they had for their life or what they thought their life would be. You might feel low, worried or panicked. This is a normal response. If you have these feelings a lot and they start to impact your daily life, it may be a sign of a mental health problem like an episode of depression or anxiety.
‘I suffered from anticipatory grief. With every check-up or test result, I expected that our plans would be dropped and changed according to the outcome of the check-up or test results. My father didn’t want to talk about it. I had just moved away from where he lived. I felt isolated and put up a brave face, but it took up a lot of my mental capacity.’
As the news sinks in and treatment progresses, what you have to do as a carer might change. How much care and support your loved one needs depends on:
- their type of cancer
- the stage of their cancer
- their type of treatment
- how they are coping
- whether they had existing care and support needs before their diagnosis
You may feel you have to put your own needs to the side. This can be tough in the long run even though you want to care for them. Balancing care needs and hospital appointments with looking after a household and other day-to-day tasks can feel like too much. Over time the burden can leave you mentally and physically exhausted.
‘I distinguish between two different periods in my carer role – during and after treatment.’
If the person you’re caring for has successfully completed their treatment, your carer responsibilities may gradually decrease. Despite this being a relief and a joyous change, you might have mixed feelings during this time.
Processing the feelings around their diagnosis
You might have been ‘holding things together’ to keep a sense of normality and to be strong for the person with cancer. It might come as a surprise to you that you are struggling with your mental health during a time you should feel happy.
This happens to many people. It can be because you can now ‘let go’ and have more time and space to reflect on your own experience and what you have been through. And you can now process the difficult feelings of the person with cancer’s diagnosis.
This can be difficult, and it is not unusual to feel lonely and isolated because others might not know this is how you feel.
Worrying about their cancer coming back
Some people might also feel anxious and worried that their loved one’s positive news might be temporary and that their cancer might return. You might find yourself becoming anxious before their routine scans. For many people, this usually gets less over time.
Dealing with long-term side effects
For others, caring responsibilities might increase after their loved one’s treatment has finished. This might be because they experience long-term side effects.
Supporting the person with cancer
The person you’re caring for will also have less contact with their healthcare professionals. This might leave them feeling anxious or abandoned. And they might also begin to reflect on and process their experience. This can be emotionally complex and demanding for you as a carer because they might need your support during this time.
I have an existing mental health problem, how will caring affect it?
‘I had depression before and felt I was going backwards again. I held up a brave face but was suffering inside.’
Looking after someone with cancer can affect you differently if you have an existing mental health problem. Some people might feel their mental health worsens after a loved one’s cancer diagnosis. Others might feel it doesn’t change much. Your feelings can change at any time during or after treatment, and that is OK.
If you’re having mental health treatment
It is important to let the people treating you know about your loved one’s cancer diagnosis and how it might be affecting you. This includes your mental health team, therapist, or GP prescribing your medication. They can then discuss:
- what kind of support you might need during this time
- any changes that are needed to your treatment
- if no changes are needed, they can help you identify the signs that might suggest you need further support
Mental health medication
If you are taking medication for your mental health problem, you should not stop taking it suddenly. It can be helpful to arrange an appointment to review your mental health medication. This will ensure that you cope with your current challenges.
When your mental health symptoms may need specialist support
‘Friends and neighbours first noticed my poor state of mental health and it is thanks to their insistence and ‘nudge’ that I opened up, got my ‘moment’ to speak up and seek out advice.’
There is no right or wrong way to feel during this time. What you feel is what you feel. But mental health symptoms can become a problem when they interfere with:
- how well you can do your normal day-to-day activities. For example, you might become too depressed to eat or get dressed
- your motivation. This means you don’t enjoy life or feel like taking part in it
- how you feel about the future. It might appear hopeless and uncertain
- your relationships with others. You might withdraw from others, not wanting to share your experiences and difficulties
- the care you can give to your loved one. For example, not being able to help them bathe or shower or prepare meals
If you recognise some of the above feelings and experiences, seek support. Support is available, but we know that it is not easy for everyone with a mental health problem to get the treatment and help they need.
You should speak to your GP first, but you may be able to get some mental health support through cancer services. Many cancer charities have helplines that offer informal emotional support for patients, families and carers. They can also signpost you to support groups or other services in your area.
Some cancer hospitals are linked with Macmillan Information Services or Maggie’s Centres. They are available throughout the UK. These services can be a place to start when seeking mental health support when you’re a carer. Some offer informal emotional support. They can also signpost you to other services for carers. You can contact them by phone or email or visit in person.
Factors that might affect your mental health when looking after someone with cancer
‘The ladies from the community who visited my mum never spoke about her cancer. I found that difficult. Not to talk about it is denying it.’
Many factors can affect your mental health. You might not be able to control or resolve all of them, but it can help to identify them so you know they might affect you.
Family members or carers say the following factors have affected their mental health:
- masking their true feelings to protect the person with cancer
- not feeling understood by others around them
- lack of professional support for them as a family member or carer
- feeling pressured to be positive for the person with cancer and others around them
- denial from others around them
- denial of their cancer diagnosis by the person with cancer
- minimising their own needs because of the burden of care
- withdrawing from others because they don’t want to talk about their loved one’s cancer or because they feel they can’t give the right support
Can mental health changes affect my caring for someone?
'I felt like our family’s needs were unmet [on a] day to day basis, [I was] failing at times to provide the kind of support expected or necessary to keep things running in our household. This was… not enough … never enough whatever the effort, it lowered my self-esteem, my energy levels and led me to [have] depression issues.’
Understandably, you might find it hard to keep up with the care of a loved one when struggling with your mental health. For some people, it is only when someone tells them they seem to be struggling that they recognise it.
People often don’t want to reach out for help because they don’t want to:
- shift the focus onto them instead of the person with cancer
- appear vulnerable because they know the person with cancer relies on them
- add further commitments to their already very busy schedule
If you can, discuss your struggles with the person you are caring for. You might also consider speaking to someone close to you or a professional like your GP. Specialist support for carers and mental health is available if you need it.
Mind has more information on carers and mental health.
People who went through this said that struggling with their mental health when caring meant they:
- found caring too difficult and overwhelming
- protected people close to them from certain information about the person with cancer, so they didn't have to deal with their reaction
- weren’t able to meet the daily basic needs of the person with cancer
- weren’t able to give the best care, and felt lower in mood when this had happened
- weren’t able to meet their own basic care needs
Children and young people
Remember that children or young people in the family can also struggle with their mental health if a loved one or guardian has cancer. They might find it hard to deal with feelings such as anxiety, anger and frustration. These feelings can change their relationship with the person with cancer.
Can a loved one’s cancer diagnosis be a positive experience?
‘I am closer to my family than I ever was - even just through a telephone conversation or WhatsApp messages. As a family we are tighter and more supportive.’
You might not yet be in a position to think positively about the cancer diagnosis and treatment of the person you’re caring for. But it may help to know that it can be possible further along the way.
Family members or carers of someone with cancer said the person’s diagnosis changed them in the following ways:
- helped them to live in the moment
- caused them to form stronger family bonds
- motivated them to give back to the cancer community and, in doing so, helped them to feel less lonely and increased their self-worth
- helped them to prioritise their life goals
- helped them to find their own strength and resilience
Tips for looking after your mental health when you’re caring for someone with cancer
Below are some suggestions to help you look after your mental health. Not all of them might be useful to your situation. It can be helpful to try and look after your mental health in more than one way. So, try several things and see what works for you.
- Knowing how caring can affect your mental health can help you to take control.
- Acknowledge the difficult feelings you might experience – they are normal responses.
- Be kind to yourself. Ask yourself what you would say to a friend in your circumstances and apply it to yourself.
- You can ask for mental health support at any time. You don’t have to wait until you feel really bad to ask for help.
- Think about how you coped in difficult situations before. See whether these strategies can help you now. For example, painting, dancing, gardening or knitting.
- Try to avoid habits that will worsen your mental health. This might be drinking too much alcohol or caffeine or staying up late and overworking
- Make time for self-care. Include regular physical activity at a level and pace that is safe for you. It can boost your mental health.
- It’s OK to say you’re not coping with caring.
- Try to talk to the person you’re caring for and tell them how you’re feeling. Sometimes both you and the person you are caring for will try to protect one another. This can stop you from sharing and offering support to one another through these difficult times.
- Talk to your GP or any other healthcare professional you trust about how caring affects your mental health. Please see the link to the Mind website below on how to talk to a healthcare professional.
- If you have an existing mental health problem, discuss it early on with the person with cancer’s team. Tell them what you need to feel supported and how your condition might affect your ability to care.
- Talk about your mental health with someone you trust. They will be able to support you better if they understand how you feel.
- Only use trusted and reliable resources for mental health and cancer information. Please see ‘Where to get support for mental health’.
- If you are the only translator for the person with cancer, ask the hospital to arrange for a translator at appointments to relieve you from the burden.
- Arrange for someone or a service to relieve you from caring duties where possible.
- Online support for carers through chat forums or helplines can be a space to talk to others in the same situation.
- Counselling can be a safe space to talk things through with a professional. A counsellor or psychologist can teach you ways to deal with stress. These include help with breathing, muscle relaxation, meditation, guided imagery, problem solving and ways of coping, hypnosis or mindfulness.
- Peer support groups with other carers or families can give practical and emotional support.
- Local support in your community that is specific to your culture can help with loneliness and isolation.
- Giving back by doing cancer charity work can feel supportive to some people.
‘I got more involved in fundraising. Being with people with a similar experience made me feel less lonely and more valuable.’
With special thanks to Mind for their expert knowledge during the development of this information.
How to support someone with cancer
We have more information on how to support someone with cancer, including a video on how to talk to someone with cancer.
Dying with cancer
Receiving the news that the person you’re caring for has advanced cancer and that they may die soon can be very difficult.
We have more information on dying with cancer and what can help you to cope.