- This topic has 4 replies, 3 voices, and was last updated 9 months, 1 week ago by Christie Patient.
June 14, 2022 at 9:30 am #32344Charlene MarshallKeymaster
Living with a life-threatening disease, such as idiopathic pulmonary fibrosis (IPF) doesn’t come with an instruction manual. Unfortunately, this leaves patients and caregivers to figure it out as they go. Just as unique as the disease is to each patient, so too is how they choose to live with it.
That being said, there are some consistencies. It’s helpful if PF patients’ caregivers, friends and family members all possess similar qualities. Regardless as to whether a patient is newly diagnosed, stable and living well, or dealing with the final stage of their disease, at some point patients need the help and support of those around them. Over the years of co-moderating this forum, I’ve heard from a lot of you what are helpful qualities of our caregivers. Here are some of those qualities you’ve shared:
As a patient, are there other qualities that you appreciate from those supporting you through your journey with PF?
June 14, 2022 at 2:51 pm #32350AnneParticipant
I have had radiation induced pulmonary fibrosis for the past 6 years and am getting worse. I have needed a dominate shoulder replacement, but the anathesiologist wont “put me under”. Therefore, I need help dressing and undressing and my hubby is sometimes very nice and other times picks at me. I have trying to get him to understand his picking is really hard for me to tolerate. I have someone come in for 3 hours 3 times a week to help me dress, do laundry and pick up my messes. I just find it almost impossible to deal with his “picks”, but some days or hours he is wonderful. Any ideas on how to deal with him my main caretaker. We dont have long term insurance, so everything is out of pocket.
June 16, 2022 at 8:30 pm #32361Charlene MarshallKeymaster
So nice to hear from you! Thanks for writing and contributing to this thread, though sorry to hear your PF is getting worse and your husband is picking at you. It’s so hard for others to understand what feeling short of breath and/or exhausted all the time is like, and on the flip side, it’s exhausting for us to navigate their lack of understanding. Just a thought that came to mind: has your husband participated in any support groups since your diagnosis? I know they aren’t for everyone, but I wonder if the disease (not you!) is getting to him and his picking is stemming from anger at the PF and what its doing to you. It might help for him to have a space to express that safely… do you think he’d be open to trying that? Sorry I don’t have a solution that is really helpful. I just know for me, even as the patient, being able to connect with others who truly understand is invaluable and he might benefit from connecting with other caregivers.
Curious to hear your thoughts,
June 18, 2022 at 6:49 pm #32370AnneParticipant
My caregiver said he’d try out one of the groups. Where can he find one–in person or on line?
June 19, 2022 at 6:06 pm #32378Christie PatientParticipant
Hi @anne-tarantino. your caregiver is welcome to join our forums, as there are a number of other caregivers here who could provide support. You might also look into options here that meet virtually or ask your hospital social worker to connect you with local groups that meet in person.
- You must be logged in to reply to this topic.