Re: Patients vs Caregivers

[Guest guest]

Steve, I wish I had posted this. You are point ON.  I Agree. Good JOB on all counts. Peggy, ipf 6/04 Florida  Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. When we were all welcomed to this support group it is clearly the intent to have two groups. One for patients and one for caregivers. The welcome e-mail also is very clear in how to join the caregivers group. So there is no question of guilt and or/living in the dark without information. This is in black and white with no question of interpretation. The one area it is also clear in is treating people in the group with respect. Calling people un Christian or using terms like abomination doesn't help.Now that everyone knows I am quite a black and white thinking guy who expects to get what is advertised, I do believe in limited exceptions. Caregivers can monitor this group. Caregivers can give news of patients. Children, neighbors , friends etc would fall under this exception.   Caregivers should not take it upon themselves to be main welcome committee for the patients group. Caregivers and patients should not give out medical advice. Patients can best relate how certain medications, procedures have affected them. Caregivers should not feel they need to respond to every message.I have been in this support group only since March but feel these issues were resolved during the formation. Also this support group has been an enormous help to me both physically and mentally. Sincerely.Steve 60 from WA IPF 2006 Parkinsons 2008Alzheimers 2008