Stage 1: Info for Caregivers

Stage 1 of IPF is after a recent diagnosis. 

How can the caregiver help someone with stage 1 IPF?

• Empower yourself by learning about IPF with your partner.

• Attend health care appointments to be a second set of ears.

• Discuss and write down questions to ask the health care provider.

• Help keep a record of care.

• Help keep track of medications.

• Encourage the person with IPF to live a full life, including regular exercise, healthy eating, rest and support from others.

• Keep a good supply of waterless soap around the house and in a to-go bag.

• Consider attending a support group, either alone or with your patient/loved one.

• Build your own support network consisting of family, friends and/or other caregivers.

• Remember to take care of yourself. Having a loved one with a serious illness can lead people to forget about themselves and their own health. You will not be a good caregiver if you are physically ill or emotionally unwell. Spend some time doing things you enjoy to avoid getting burned out.

How might a caregiver be affected by someone with stage 1 idiopathic pulmonary fibrosis?

You may experience a range of emotions when your loved one is diagnosed; these could include denial, fear, stress, anger/frustration, grief or depression. It is important to know that your loved one may not experience the same emotions as you, or he or she may not experience emotions at the same time.

• Denial: It may be hard to believe or accept that your loved one has IPF. Experiencing denial for a short period of time is natural; however, longer-term denial is unhealthy and may affect your loved one and delay the initiation of appropriate therapy.

• Fear: Fear of the unknown is common. Not knowing how IPF will behave over time is unsettling. Try to focus on the here and now, rather than the what-ifs.

• Stress: Not knowing how to help your loved one with IPF can lead to stress. Try to find activities to relieve your stress. Planning for the future can help alleviate stress.

• Anger/frustration: It is normal to feel anger and/or frustration at IPF when a loved one is diagnosed. Try to work through it.

• Grief/depression: You have not lost your loved one. Your loved one and you have a lot of living to do. Focus on today and on what you can do, not what you can’t.