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Tips on Effectively Caring for Patients with Pulmonary Fibrosis
Does anyone else feel emotionally triggered by the question, “what do you need” or “what can I do?”
I know when people ask me this, especially during tough times since being diagnosed with idiopathic pulmonary fibrosis (IPF) in early 2016, that their intentions are good and that they truly do want to help me. However, in times of distress, emotional or physical fatigue or following an acute event (ie. exacerbation), I am oftentimes too tired to identify what it is that I need in the moment. However, just because I don’t vocalize what it is that I need, does not mean that I don’t need or want the help.
In literature or books that I have read focused on caregiving for those who are chronically ill, a tip that has been suggested is actually not asking such an open-ended question to the patient. Instead of asking “what do you need”, or “what can I do?” which puts the onus on the patient to come up with an answer; you could try a more closed-ended question. To do this, proactively think of things (tips below!) that you could do to help your loved one/friend/colleague living with IPF and suggest those instead. This lessens the “work” that the patient needs to do, and instead of coming up with the options of assistance, they can just pick an option.
Not sure what things might be most helpful to do for a patient living with IPF or any type of chronic illness? Fear not, I’ve shared some of the things that help me most when I am having a tough time due to my lung disease.
- Make a meal: whether this is coming over to my house to cook with/for me, or picking up something that is easy to heat up or freeze for a later date is always appreciated.
- Pet care: I know not everyone has an animal, but walking my dog is something I cannot do when I am unwell. She is just too strong for me, and even if I cannot walk her, she does still need her walk. Offering to do this, or play in the yard with her alleviates the pressure of my physically having to do this. Pet care is a big help and is something I have always appreciated assistance with when I am unwell.
- Watching a movie(s) together: who doesn’t enjoy spending a night in, cozy with friends and a good movie? You don’t have to be sick to do this, but it sure is nice to be able to do this with others when you aren’t well. It also doesn’t take up much time or energy!
- Run an errand/get groceries: this is a huge help to those of who living with a chronic illness! These two tasks take up a lot of physical energy, and even more so during a recovery so offering to do this for us is always helpful.
What are some tasks that others’ can do for you which are helpful during tough times?
Would it make a difference for you if someone offered up tasks they could help you with (a closed-ended question) vs. leaving it open for you to determine what it is you need and how they can help you?
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