One of the most important aspects of being a caregiver for a patient with pulmonary fibrosis includes accountability and record-keeping. Implementing a caregiver notebook or  journal helps provide daily accounts of patient care. As a caregiver, emphasizing the importance of logging patients’ activities, supplements taken, and oxygen levels on a daily basis makes a significant difference, saving time, energy, and stress for both the patient and caregiver who is likely needing to maintain countless details. Further, the utilization of recording small daily changes better prepares the patient for their follow-up visits with various healthcare professionals, who are not seeing them on a daily basis, like their caregiver is. Having a written record on a daily basis also allows for caregivers to better understand their patients’ conditions and needs. From a medical perspective, maintaining a caregiver journal provides a better sense of the patients’ progression or regression, leading to more appropriate courses of action or treatment  for them.

Information that would be helpful to include in your caregiver journal:

  • Patient information, including their medical history, age, height, weight, and current condition
  • Names of any prescription and over-the-counter medications and what each one is taken for, including dosage amounts and dates filled
  • Note the specific caregiver duties that are completed on a daily basis, and note any changes, if applicable
  • Note patient behavior, activities, diet, sleep pattern, and any other information that you feel is significant in relation to the patient

One tool that is helpful in determining a person’s endurance with basic exercise and overall functional fitness is the 6 minute walk test. This allows for the patient and their physical therapist to evaluate overall functional status and determine the best rehabilitation program available.

Tips on Taking Charge of Your Own Health As a Caregiver

Being a caregiver for a pulmonary fibrosis patient can oftentimes have physical requirements, and ensuring that accomplishing tasks, such as helping patients stand up, are carried out correctly can prevent any potential injuries for caregivers. Below are some tips for on proper body mechanics when helping a patient stand up from their chair or bed:

  • Stay close and stand beside the patient, avoiding lifting them from the front or behind
  • Avoid pulling up on the patients’ arms or hands, which could potentially  strain or injure them
  • Prepare your body–bend your knees and keep your spine in a neutral position, with a slightly widened stance for stability
  • Lift the patient slowly, and encourage them as much as possible during this process
  • Once they are on their feet, make sure that they have stabilized and release only after they have confirmed that it is alright to do so.

Maintaining your own health as a caregiver is crucial as well, especially when there is a patient who relies on your help in order to maintain their health and well-being on a regular basis. Make sure that you are getting the rest that you need, as well as exercising regularly.

Some tips to take note of in regards to caregiver health include:

  • Recognizing when there are symptoms of caregiver stress and seeking assistance from loved ones or various support groups in order to maintain mental health, well-being, and outlook (See below for link to Pulmonary Fibrosis Now! Facebook group)
  • Accepting that not everything is going to be immediately possible and not feeling guilty if some goals take longer than others to achieve
  • Maintaining a positive attitude and staying focused, especially because the role of a caregiver oftentimes comes with various responsibilities.

To connect with people who can relate:

Join our online forum, and attend our virtual support groups on Zoom.

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