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What questions or ideas do you have for the forums?
I recently reached out to multiple forum members to ask for their direct feedback. We welcome any ideas for discussion topics, accessibility, additional features, etc. I haven’t heard from anyone yet, but I wanted to note that we have a direct messaging feature here. See the screenshot.
Circled in red above, it is on the forums homepage to the left of your username.
Are there any other features you would like to see here? We are always open to ideas. Feel free to comment here or send me a message. Thanks, everyone!
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2 Replies
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I would like to know why no one talks about the end stages of this horrible disease. My husband is confused, agitated, and scared, despite his deep religious belief in a wonderful after life. How does one deal with the agitation, confusion, and unwillingness to follow the advice of Hospice, i. e. to get a hospital bed, use a Foley catheter, let his caregiver use a respite volunteer, get a PCA, etc.? I am a loving, but physically and mentally exhausted caregiver. Tamra
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Hi Tamra,
Being a caregiver is hard, and it is hard for a patient to always see it. I know it took me a minute. I hear you about hospice care and what the end of life is like for a patient and their caregiver. Let me have a couple of days to work on that. Have you attended any caregiver support groups? The Pulmonary Fibrosis Foundation has a monthly virtual support group for caregivers. See the attached screenshot.
Sam…
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