Focusing on Your Well-Being

• You may feel many different emotions as a caregiver, both good and bad
• Speak to family and friends or your healthcare team to get help and support
• It is normal to sometimes feel overwhelmed, isolated and even guilty
• Getting support and taking breaks can help manage these feelings

Being a caregiver can lead to a range of very different emotions, some of them positive and some of them negative. Remember to always give yourself credit. The care you provide makes a real difference to your loved one.

To properly care for a loved one, you should maintain your own well-being by managing your emotions and understanding your own needs. Feeling confident in yourself can help you to manage the demands of being a caregiver.

You don’t have to care for a loved one alone. Support is available to help you with caring duties. Some caregivers manage their loved one’s care 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 caregiver will be unique to you and to the person you are caring for. However, there are some emotions that are experienced by many people who are caring for people with a serious illness, such as:

• Frustration
• Impatience
• Sadness
• Anger
• Helplessness

Being a caregiver can be difficult and rewarding, and there can be a mix of negative and positive emotions. Focusing on the positives can help you to recognize 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 caregiver 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 recognize that you are feeling sad, angry or unable to sleep most of the time, you may be experiencing “caregiver burnout.” 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 well-being. Ask your family and friends if they can help you from time to time, so that you can take time for yourself or to socialize.

You can also speak to your loved one’s healthcare team or a caregiver support group, who will be able to provide suggestions and options. Often, there are local resources available to help you manage your caring duties and your own well-being.

Feeling guilty

It is normal to sometimes feel guilty 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.

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

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 caregiver 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 or frustration while caring for someone with pulmonary fibrosis are normal, and managing anger is important to maintain your mental health.

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

• Try to get some exercise or try stress-relieving activities such as meditation. This will help you to relax and rationalize the situation
• If your feelings of anger don’t get better with time, you should speak to your healthcare team
• Try speaking to others in a support group, which may give you new strategies to manage your feelings

Feeling lonely

Caregivers can often feel lonely or isolated when it becomes difficult to take time away from caregiving. 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 healthcare team will also be interested in your well-being. If you are struggling to take any breaks from caregiving, speak to the healthcare 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.

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 healthcare team about your feelings. They may be able to suggest help, such as counselling and respite care for your loved one. Support from mental health professionals can help you to maintain a strong relationship with your loved ones.

Where can I get support?

There are many sources of support that you can access. You can ask your loved one’s healthcare team to help you find resources or search online for support. For example, the Canadian Pulmonary Fibrosis Foundation, Government of Canada and Be There Organization can help you access emotional support in your local area. You may also be able to speak to local charities who support people in a caring role for somebody with a serious illness.

Family counselling for those providing care

A counsellor can help you learn to develop coping strategies for the emotional demands of being a caregiver. They can help you through the difficult emotional periods and work through any stress, anger, and guilt that can come with being a caregiver. You can ask your loved one’s healthcare team about getting support or search online to find services available in your local area.

Caregiver support groups

Caregiver support groups offer an opportunity to share your thoughts, ideas, and suggestions and compare notes with others in a similar situation. They are a safe place to vent your feelings to help maintain your mental health.

Charities

Many charities can offer support to people who are providing caring duties for their loved one. Different charities will be available depending on your local area and services. Your loved one’s healthcare team may also be able to recommend charities in your area.

Charities focus on promoting health and providing support for those affected by various conditions, including those affecting the lungs. Many of them campaign for improvements in the level of care offered to people affected by chronic conditions and improving overall public awareness.

Charities are a great resource for promoting better understanding, as well as alleviating, treating and preventing disease. These charities can be useful for getting more information and guidance when providing the care to a loved one living with pulmonary fibrosis.