Caring can involve positive and negative feelings. Partners and carers say they have felt joy, loved, anger, appreciated/unappreciated, scared, frustrated, that they are making a difference, hopeful, lonely, sad and guilty. All these emotions are normal. Whatever you are feeling or have felt, chances are that others in your position have been through the same sorts of feelings. Your feelings may be similar to those experienced by your partner or the person you’re caring for.
Anger, frustration, resentment
‘I was angry with the world, I was angry at cancer... I didn’t really know half the time why or what I was angry at... I was just really angry.’
Feeling angry, feeling frustrated and feeling resentful are all reactions experienced by people who are carers. Anger and frustration often go together when things do not go the way we want them to or when people do not behave the way we think they should. Anger is also linked to other negative emotions, or may be a response to them. You may be feeling hurt, frightened, or disappointed. Research has shown that men and women may express their anger in different ways. Men often find it easier to express the anger rather than the feelings underneath such as feeling sad or hurt, weak or vulnerable. For women, anger may get buried under tears or sadness.
People who provide care have said that they feel angry, frustrated and resentful at:
- Extra responsibilities they now have
- Family members who do not pull their weight
- Friends who don’t make contact
- Their partner or the person they’re caring for and the situation
- That the cancer has interrupted their plans for the future
- Not being listened to by health professionals
- Having to be the carer.
Letting your anger ’explode’ only increases anger levels and aggression. But holding your anger inside can be just as bad, and has been linked to anxiety and depression. If anger is expressed in a controlled way, you can start to look at some of the things that may be making you angry. You may also be able to learn strategies to deal with these emotions.
- Recognise the situations that make you angry and make a list of them. If you know what makes you angry, you may be able to avoid some situations, or do something different when they happen.
- Notice the warning signs of anger in your body (e.g. tense jaw, heart beats faster, feeling hot, shaking, feeling out of control).
- Take time out. Step outside the room and go for a walk.
- Try relaxation techniques like controlled breathing.
- Talk to your General Practitioner (GP) or a counsellor about ways to manage your feelings.
‘How did I cope with fear? I talked about it. I found out as much information as I could about prostate cancer and about how to keep track of medications. I wrote things down so I wouldn’t forget, and so I wouldn’t do anything to hurt him.’
Cancer and caring for someone with prostate cancer can be frightening. People who provide care say that they have felt afraid of:
- Doing the wrong thing
- Being left alone with the person they care for
- Being responsible for giving medications
- Dealing with new people and situations
- Not knowing what to do
- Dealing with the failing health of the person they care for
- Being faced with the possibility that the person they care for may die
- The uncertainty of what will happen next.
Often learning more about prostate cancer helps carers feel more in control. You can also then focus and prioritise things that you can control or seek advice and assistance.
Feeling guilty is one of the most common emotions that partners and carers report feeling. They may feel guilty about:
- Not doing a good job at being a carer
- Feeling angry and or resentful
- Wanting a break from caring
- Feeling well and healthy while the person they care for is sick
- Discovering material, physical and emotional limits
- Being embarrassed for the person they care for.
When supporting a person with prostate cancer, you may reach your physical, emotional and material limits or that the person you are caring for has to have some residential care. It is important to not feel guilty when this happens. In dealing with your feelings, it can be useful for you to recognise your limits, acknowledge the uncertainties you face, recognise the burden that caring has placed, seek and accept assistance. There are professionals and services such as home care, home nursing and ‘Hospital in the Home’ that can help. Respite care is important, it enables partners and carers to maintain their health, emotional and physical strength when providing support and care.
Do not feel guilty if the person you’re caring for requires more support, this may be related to the cancer or his need for further treatment, not your caring capability.
You may be able to learn some ways to manage guilt:
- Recognise it and say it out loud (’I feel guilty for ...’)
- Look for the causes of guilt
- Seek and accept help – talk to a trusted friend, family member, support group, counsellor or your doctor. Find out what help is available
- Do not use the words ’SHOULD’ or ’MUST’ – they can make you feel more guilty.
Isolation and loneliness are common feelings that partners and carers report. These feelings may arise because family and friends may not contact you as often – perhaps they think that you are too busy. Some people just do not know how to talk to you and the person you care for about prostate cancer and all the changes that are occurring in your lives. You may feel too busy to socialise or take time out for yourself.
Even if you do have a lot of help, you may still feel as though no one really understands what you are going through. To help deal with these feelings you can try to:
- Keep in touch with family and friends more regularly – this can be in person, through phone calls or emails and social media sites
- Accept help from others
- Join a local carers’ group or cancer support group so that you are around other people who know exactly what you are going through
- Invite people round to visit so you can ‘break the ice’.
Caring for someone with prostate cancer can be stressful at times. Throughout the journey, your needs and concerns may change. Lots of different emotions may arise, which add to or cause more stress. You may have to adjust to changes in your lifestyle, or find that you are taking on more responsibility. Some carers can find the role overwhelming. Some days it may feel as though the need is so great that you cannot possibly get it all done or that you have not done enough.
Research has found that people who provide care often experience higher levels of distress than cancer patients themselves. This can arise from the high expectations partners and carers set for themselves.
The physical and emotional demands of caring can be high. You need to look after yourself or these demands can wear you down. The care you give to yourself is as important as the care you give to the person you’re caring for – it helps you to care.
Symptoms of stress may include trouble sleeping, headaches, heart problems and emotional signs and symptoms such as feeling tired, unwell or over-sensitive. If high stress levels continue for a long time, carers may experience exhaustion and burnout.
Some strategies that may help you deal with stress include:
- Regular exercise, even if it is just a walk around the block. You can exercise with friends, join a gym
- Learn meditation and other relaxation techniques
- Do something you find relaxing - listening to music, reading a book
- Talk to someone, join a support group, talk to a psychologist or social worker
- Rest and try to get enough sleep
- Eat proper meals that are nutritious and limit alcohol and other drugs
- Take time out
- Be kind to yourself
- You can also speak to the healthcare team about ways to manage your stress levels.
Everyone feels anxious from time to time – but some people may experience these feelings often. Sometimes it may be hard to know how much is too much. Caring can be a difficult role and there are many stresses and worries that you may face. Anxiety among people who provide care is common – some research has found that about half of all carers experience anxiety.
Anxiety disorders can be treated, sometimes with medication, by counselling or psychotherapy or by a combination of the two.
Some warning signs:
If for a long period of time you have:
- Been worried and have found it hard to stop worrying
- Found it hard to do everyday activities.
Some signs of anxiety include:
- Avoidance behaviour
- Racing heart
- Trembling or shaking
- Difficulties with concentration or sleep.
If you feel really anxious, or it has lasted for a long time, you should speak to a member of your healthcare team (e.g. GP, psychologist, social worker or qualified counsellor).
Feeling sad and down are all normal emotions and usually only last for a short period of time. They may only have a slight impact on your life. Depression is an emotional, physical and thinking state that is severe and lasts for a long period of time. It usually interrupts a person’s life to a significant extent.
Depression is a serious illness and treatments are available that can help. Talk to your GP or a member of the healthcare team.
Depression among people who provide care is common and some research has found that about one quarter of all carers suffer from depression.
Some warning signs:
If you have been:
- Feeling sad or empty
- Feeling irritable or frustrated
- Feeling helpless and/or hopeless
- Having problems concentrating
- Lost confidence in yourself
- Feeling guilty and/or worthless
- Worrying all or most of the time
- Having had problems sleeping
- Lost interest in things that you used to find enjoyable
- Noticed a change in your appetite
- Feeling more physical health problems, like pain or fatigue
- Having thoughts of wanting to die.
Things you can do to help yourself:
- Try to do at least one thing that you enjoy every day
- Improve your sleeping patterns
- Try to manage your stress before it gets too much.
Suggestions for dealing with a bad day:
- Do not lie around in bed – get up as soon as you wake up
- Catch up with friends – either in person, or on the phone
- Do some relaxation
- Do some exercise.
Depression is a serious illness and treatmments are available that can help. Talk to your GP or a member of your healthcare team.
Some partners and carers have found it useful to keep a diary of their cancer journey.
Some of the benefits of keeping a diary include:
- You have a record of your carer journey – the ups, the downs
- It may help to give you some perspective – for example, reading what you wrote yesterday may help you see that today is a better day
- Writing in your diary gives you time for yourself
- It may help you ‘get out’ some of the worries or frustrations you may be feeling – seeing things written on paper often helps people to gain some distance from their problems, or to see them in a new light
- It may help you realise and acknowledge some of your feelings.