Being a carer can lead to a range of very different emotions, some of them positive and some of them negative.¹ Remember to always give yourself credit. The care you provide makes a real difference to your loved one. Feeling confident in yourself can help you to manage the demands of being a carer.

You don't have to care for a loved one alone. Support is available to help you with caring duties. Some carers would rather care for their loved one with little to no help. However, even just talking about your feelings with somebody can help you to manage your emotions and care for your loved one in the best possible way.

What feelings are normal?

The feelings you may experience throughout your journey as a carer will be unique to you and to the person you are caring for. However, there are some emotions which are experienced by many people who are caring for people with a serious illness, such as:

• Frustration

• Impatience

• Sadness

• Anger

• Helplessness

Sometimes, the negative emotions will be balanced with positive emotions, such as happiness, satisfaction and relief. Focusing on the positives can help you to recognise that the care you deliver makes a real difference to your loved one’s life.

Coping with your feelings

Finding different ways to manage the feelings you experience as a carer will help you to provide the best possible care for your loved one. Below are some hints and tips to help you to manage your feelings.

Feeling overwhelmed

Many people feel overwhelmed when they are both caring for a loved one and living their day-to-day lives.

If you recognise that you are feeling sad, angry or unable to sleep most of the time, you may be experiencing “caregiver burnout”.¹ This is when the challenges of providing care become overwhelming and your positive mental attitude can become negative.

To avoid burnout, try to take breaks from caring duties when you can. Finding access to respite care can give you a break to focus on your own personal wellbeing.¹ Ask your family and friends if they can help you from time to time, so that you can take time to yourself or to socialise.

You can also speak to your loved one’s healthcare team or a carer support group, who will be able to discuss your options with you. Often, there will be local resources available to help you manage your caring duties and wellbeing.

Feeling guilty

It is normal to sometimes feel guilty¹ because you are in good health compared to your loved one. You may also feel guilty when asking others for help with caring duties.

Feeling guilty may lead you to become over responsible, striving to make life 'right'. You may overwork, give too much of yourself, or be willing to do anything in an attempt to make everyone happy.

Don’t put yourself under too much pressure to make things perfect and try to avoid blaming yourself. The challenges and difficulties that come with pulmonary fibrosis are not your fault.

Be open about your feelings and talk to the person you are caring for about how you feel. You may find that they value your health as much as their own. Joining a carer support group may put you in touch with other people who are living through similar experiences. By sharing your feelings with others, you may be able to find new ways of coping.

Feeling angry or resentful

Feelings of anger while caring for someone with pulmonary fibrosis are normal. However, managing anger is important to maintain your mental wellbeing.¹

Tips if you are feeling anger about your loved one’s situation:

• If you start to feel angry, breathe slowly and deeply while counting to 10. This should slowly help to calm your mind and avoid making rash decisions

• Try to get some exercise or try stress-relieving activities such as meditation. This will help you to relax and rationalise the situation

• If your feelings of anger don’t get better with time, you should speak to your treatment team. They will be able to recommend different strategies or specialists who can help you to understand and deal with your feelings

• Try speaking to others in a support group, which may give you new strategies to manage your feelings

Feeling lonely

Carers can often feel lonely or isolated when it becomes difficult to take time away from caregiving.³ Friends and family may drift away or not know how to help you.

Finding ways to take a break from caregiving is really important – even a couple of hours once a week can help you maintain social relationships and have a little time to relax.

Ask family and friends if they can help with caring duties so that you can have a short break. The treatment team will also be interested in your wellbeing. If you are struggling to take any breaks from caregiving, speak to the treatment team, who may be able to find support in your area.

Grief

When you are caring for someone with pulmonary fibrosis, it is normal to feel grief at many different points throughout the illness. For example, you may feel grief when your loved one is diagnosed, when they are no longer able to participate in activities they were once able to, or once they pass away.³

If you are experiencing feelings of grief, you may wish to visit the coping with a loss page to help you prepare for the different emotions you may experience during the grieving process.

If you’re feeling that things are getting out of control and you are finding it difficult to care for your loved one, talk about your feelings and ask for help from your family and friends.

If you are still finding it hard to cope, speak to your treatment team about your feelings. They may be able to suggest help, such as counseling and respite care for your loved one. Psychological support can help you to maintain a strong relationship with your loved one.²

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Carer support group

Carer support groups allow carers to share their feelings and help them stay strong and committed.

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Key takeaways