Hi, my dad has recently been diagnosed with IPF after a bout of pneumonia. He's now home on oxygen (oxygen is on the number 4 setting whatever that means) for at least 16 hours per day, but feels and looks awful. His capacity was c30% when it was last tested.
Both him and my mum are not fans of asking questions, especially when it comes to prognosis; they are also not great at remembering what medical professionals tell them (my dad definitely withholds whereas my mum gets overwhelmed).
They are also both not good at asking for help/support - in case they get told something that they don't want hear. I can understand, but it makes it very difficult for my sister and I to understand and/or help with the situation.
Dad will not do any exercise (he's not particularly mobile anyway) and he is refusing to go for any breathing support 'lessons'. He has very little appetite.
I suppose I just feel a little useless, and clueless. I know nobody wants to or can put any kind of timing on progression (dr said it looks like he's had it for a long time) but it makes it so difficult to not know what's going on.