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IPF and hospice care
My father is in his 4th year with IPF. After a few months of trying OFEV, he started taking Esbriet and has been on it ever since. Until this year his condition was pretty consistent however in the last few months he has been steadily declining. Just recently his doc suggested we start looking into hospice care — all though he is still functioning decently well at home, he is on full time O2 and is loosing weight rapidly. Does any one have any suggestions/experience they can share about the process of finding and living with IPF and hospice care? My father lives in Los Angeles, so any recommendations would also be welcomed. Thank you.
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So sorry to hear about your father…my husband takes Ofev, and the company is almost too helpful with assistance and information. But it’s ultimately appreciated.
I would check with the Espriet manufacturer to see if they have any information to point you in the right direction.
Prayers for your family…
@jambyjam, learning about options for hospice care before it is necessary is a good idea. Here are a couple of related discussions that may interest you:
- Does anyone have experience with Palliative Care?
https://connect.mayoclinic.org/discussion/does-anyone-have-experience-with-palliative-care/
- The important role of hospice care
https://connect.mayoclinic.org/blog/podcasts/newsfeed-post/the-important-role-of-hospice-care/
I also think that @merpreb and @IndianaScott may have tips to offer when seeking hospice care.
Do you live near your father or are you long-distance caregiving?
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1 Reaction@jambyjam- Hi. It must be very tough watching your dad with a serious illness. Earlier this year I went through something much different with my husband and dementia. In my state of RI, hospice is called in by an ill person's physician when a patient exhibits specific declining symptoms, including self-care and medical information. And this is what happened to us. And I am so happy that he did. This is also the way that it happened with my mom.
Do you live near your dad? Has your dad appointed you his attorney for healthcare? This is a legal document drawn up by an attorney. It usually happens when that person draws up his will. It gives permission to someone to make medical decisions for another person who can't. If you are not his attorney for health care then you should get a hold of that person and discuss what your father wanted.
If you can, please consider calling his doctor to find out what he knows and if it's time to change your dad's health care to something else.
Merry