Advice please

[Advice12345]

Hi there

My father was diagnosed with Idiopathic pulmonary fibrosis and will never tell me how he is feeling. Brace face all the time. Is there anyway I can actually find out how he is? Or symptoms I should be more aware of? The diagnosis was over 2years ago

Thank you

[Caspiana]

Hmm…hello Advice12345 .

I understand your situation with your dad. I suppose the most noticible signs of decline for me are increased cough, desaturation at a faster pace when active, increased breathlessness, going out of the house less and less , marked decreased appetite, struggling with everyday activites, spending more time lying down and sleeping and extreme fatigue. I, like your dad do not ever tell my family. But they watch and take note. They accompany me to transplant clinic once every three months and always tell the surgeon what they have noticed. Sometimes I don't notice what they do.

I think you really need to observe without being too obvious. He probably doesn't like "fuss".

Best wishes to you and your dad,

Cas xx 🌷

[Advice12345 in reply to Caspiana]

Thank you so much for replying. With me not living with him it it so very hard to assess him, he used to call me all the time, he’s useless with technology, I.e his mobile! But now he texts all the time as if I call it’s like he can’t speak for too long without coughing, gasping. I just wish he would be honest with me. All the best to you too xxx

[Caspiana in reply to Advice12345]

I would talk with age concern perhaps, and go with him for his hospital visits when possible. Our parent's generation are stoic I suppose. They don't want to trouble anyone. It's very hard to handle sometimes. Wishing you well. xx 🌼🌸

[Advice12345 in reply to Caspiana]

I just spoke with his wife....he doesn’t let her go to hospital appointments either (I didn’t know this)

She said he is becoming more tired, lacking motivation and coughing much more. I just can’t deal with the not knowing truly how he is feeling x

[Caspiana in reply to Advice12345]

How old is your dad? Is he usually a rather quiet person or just when his health is concerned? xx 🙋

[Advice12345 in reply to Caspiana]

He is 61...just where health is concerened x

[Caspiana in reply to Advice12345]

Perhaps just spend time with him when you can, doing things he may enjoy. Maybe you'd get more answers, just quietly observing, and not making it obvious. xx 😊

[simbanine]

Hello advice 12345

How terribly difficult for you, but I suppose he feels he does not want to worry you. With my IPF I have been totally open with the family and it has helped me tremendously as they have mucked in as I am sure you want to do. it is a great comfort to know that they have powers of attourney in place and know all my final wishes. We have also been able to have joint meetings with the medical team and generally it has pulled what was always a very close family even closer together. I wish I could beam a magic signal to him to do what we have done, but I suppose he must be a very private person. Nevertheless, keep GENTLY trying to talk him round if the right opportunity arises - I wish you and him all the best.

Mike

[Advice12345 in reply to simbanine]

Many thanks for your response. I wish he would be as honest with me as you have been to your family. I want to support him as best I can and just wish I knew truly how he was. I read up online and it scares me!! I will keep trying as much as I can,

Thank you, all the best