Idiopathic Pulmonary fibrosis is a rare progressive disease. Patients may initially have mild symptoms of shortness of breath and cough. But over time as the disease progresses, symptoms become more severe and more onerous. Every day activities become a chore if not impossible. Navigating the day-to-day challenges of IPF is almost impossible without a caregiver or a team of people to support you.
Let’s acknowledge some of the major tasks that a caregiver performs.
Emotional support: Caregivers provide the emotional support and reassurance that is needed to put one foot in front of the next. They provide a hand to hold during tough times and a person with whom to celebrate the victories of a good day or good test results.
A second set of ears: Have you had this experience? You are in the doctor’s office. The doctor has just explained the plan to you. As you are leaving the exam room, it is as though your memory was just erased. What did the doctor just say? This experience is so common that it is probably the rule rather than the exception. Your caregiver is there to hear what you just forgot and help you ask questions.
Getting there: As IPF progresses many patients find driving harder. Simply getting to your doctor’s office or the hospital for testing becomes a hurdle. Your caregiver is ever-present to help make sure you are able to make all of your appointments.
Companionship: Whether it is a meal, a hug or a kiss, someone to listen to you, or just someone to sit by your side, your caregiver is usually your closest friend. The companionship of a trusted caregiver provides reassurance and comfort that allows IPF patients to weather tough times.
Preventing IPF Caregiver Burnout
It is very common for a caregiver to put aside their needs while they are busy caring for a patient with IPF. In a temporary crisis, most people are able to shift to a high gear and focus on getting through the crisis. However, IPF is a crisis that lasts many years. This can lead to caregiver fatigue. How do you know if you are experiencing caregiver fatigue?
Common Signs of Caregiver Burnout or Fatigue
1. Are you feeling tired all the time? Do you feel like you catch every respiratory bug that visits town?
2. Is your fuse getting shorter and shorter? Do you feel like you are getting frustrated more easily and losing your temper? Are you feeling resentful of the time and energy you are spending in your role as caregiver?
3. When was the last time you went out with your friends to enjoy yourself?
4. Are you neglecting the activities that you enjoy? When was the last time you played golf or tennis or watched a silly movie?
5. Are you relying on unhealthy crutches such as overeating, drinking or smoking?
Preventing and Avoiding Caregiver Fatigue or Burnout
1. Remember it is a marathon and not a sprint. You need to pace yourself.
2. Ask for help. Build a team or network to assist you. Your ability to be an effective caregiver means that you are also taking care of yourself.
3. Accept help when someone offers. This may be hard at first. You may feel guilty or even resentful that someone else is making a contribution. Acknowledge these feelings. Then remember that a team is more effective than an individual. You are no less important because you have reached out for help in delivering care.
4. Every person needs some time each day to decompress. This could be a visit to the gym or reading a book or meditating. Exercise in particular provides so many direct and indirect benefits. Not only does it help keep you physically healthy, but also the endorphins (brain chemicals) that are released during exercise help prevent depression and anxiety.
5. Don’t neglect your own health. Make sure you see your doctor regularly. Eat sensible meals. Maintain a reasonable sleep pattern. Don’t forget to take your own medicines.
6. Be a joiner. Support groups for caregivers allow you to connect with other people experiencing similar trials and tribulations.
Resources are available for caregivers. Click here to tap into 3 great sites to help you in being a caregiver.