I loved the article and relieved to hear that I'm not the only one (besides a patient) that has stress . I've been at this 26 years and often get frustrated . I have no idea why the medical community (specifically CF teams ) wouldn't think that parents wouldn't suffer from something as we are the main caregivers . Caregivers for other medical conditions/diseases has been long known to suffer from '' burnout '' why wouldn't a caregiver/parent suffer the same ? We sometimes have a moment where we think to ourselves '' I'm getting tired of this '' but quickly snap out of it for guilt and the love of our kids . In our case I have been the primary caregiver/parent out of convience . I'm the last one to leave for work , first one to get home I fix dinners as well . I'm approaching 62 and retired early recently on disability myself . I've done most of the phone work battling with insurance companies , ordering meds , the whole gambit because I was able to use the phone freely at work , and my spouse could not . My spouse helps out if needed on weekday's off with phone calls etc. We consider each other as a team and hold no resentment towards each other because one helps out more than the other because of our schedule's , we are a team . When we were at the CF center for children , I think my son was about 16 (he went to the adult CF center at 20) they did away with him seeing a social worker (once or twice a year) and he hasn't seen one yet in the adult center (6 years) The adult center has been hesitant of even letting me go in the room for checkups the last few times with his head nurse telling me '' we have a new waiting room '' ... what ! I'm supposed to turn this off after all these years ? Sometimes my son wants to drive to his checkups alone (he is 26) sometimes he just doesn't feel like driving soI'll take him , he never says he doesn't want me in the checkup room when I do go (most of the time) I have questions he may forget to ask the doctor (happens often) , almost always had info to add since his last appointment , and suddenly I'm getting the impression that now my son is an adult , I need to wait outside ? My son has put a few good years together where he hasn't been put on IV anti-biotics . After graduation he got 3 jobs , lost them all because he needed to be put in the hospital for an I.V. / home therapy for weeks , you have to tell your job why and they are hesitant to let you return and they haven't . My son is afraid to work again (almost impossible in Michigan ) for fear he'll get sick again . He's always be compliant with his meds/therapy , but it seems when he gets a job is when things start going downhill . His CF doctor has said 2-3 times lately that she didn't think he has CF (because he's doing pretty good ) which irritates him to no end , and has totally stood in the way of my son getting any type of benefits from the Federal Government and the State as well , she only sends in his FEV's period . PTSD , frustrated , caregiver / parent burnout all of the above . Our family education day is this Saturday , can the patient come ? do they still have the cepacia positive and negative seperated ? The notice they mailed us didn't say . I'm a male by the way and live in a major city .
