One of the hard things is that I want to ask for help and there are people that want to help, but right now I don't think that it will actually help. When Gess is around other people he puts on the "act" and appears to be doing much better than he is. He suppresses his cough, he turns into the comedian and makes jokes for everyone, he tells everyone he is okay. Then, when he comes home he collapses. I know that this is normal and that he does it because I am a "safe" person and around me and at home he is able to let it all out. But, it also means that there really isn't an escape for me. If I call in the troops, he will put on the brave face and tough it out. Then when the help leaves, it will all catch up with us. He'll end up sicker and I'll be completely overwhelmed.
So, I feel like I am it right now. I wish that I didn't have to work or at least that my work was less intense and I had less responsibility. But of course, that really isn't an option. It scares me to think about how things are going to get worse. I don't know how other people do it. I'm only working part-time right now but need to work full-time (and somehow be able to manage that!).
The kicker is that Gess doesn't think that I do that much. He has told me more than once that he doesn't see me as a caregiver and that I don't actually "do" much about his CF. And to some extent that is true. He generally handles his own treatments and medications, etc. I am not physically "doing" a lot on a day-to-day basis (except during this course of IVs when I have been more active in administering them), but I still feel completely overwhelmed by it. I feel like his health is the center of everything right now and that I pretty much look at life through CF-tinted glasses. All of our plans, from day-to-day schedules to trips to children to career, involve a consideration of CF. I handle the insurance stuff and follow up on calls, order medications, argue with the nurses, etc. He is in the hospital so much and I try to juggle visiting him, working, household stuff, and just sleeping. Lately it seems like we can't do much by way of social activity because he doesn't feel well (not that I am blaming him, but I'm just saying that it impacts me).
Not to mention the emotional roller-coaster that I am on. I am stressed about my work situation and his work situation. I worry about how we will make it when he get sicker. It kills me to watch him suffer, especially when there isn't anything that I can do to help. It scares me to think of the future and what is to come. I mourn the fact that I am losing my husband and a am scared about having to start over without him. I get angry at him for not taking care of himself and his self-medicating--and the way he treats me when that happens. Then I get angry at myself for not being strong enough, for not doing more, for not being enough. And I'm scared that I am not going to be able to do it. I am scared that I am going to break. It's terrifying. It's consuming. It's exhausting.
When I have mentioned Gess's comments to some of our mutual friends they all think that I do a lot...but I don't know. Am I making myself overwhelmed without cause? Am I actually a caregiver? And if I am not doing much now and feel like this, how will I ever be able to actually be a caregiver? I just feel like I am completely overwhelmed and on the verge of failing at any given moment. When an emergency happens, I go directly into "action" mode and do what needs to be done, but when things calm down a bit, then I crash. I think that one of the problems is that there really hasn't been time to recover. Things have been pretty non-stop drama-wise for more than 2 years. A friend of mine just came back from living abroad for 6 months and when we were talking I was amazed at what has happened since then (to name a few, I started this new part time job with quite a bit of responsibility and some "big" tasks that I had to do, my father died, Gess has been hospitalized several times, we started the transplant evaluation process, and I started having panic attacks). When is it going to end? Or when will I just cease to be able to handle it. Honestly I don't want to know how much I can handle. I refuse to say that I can't take anymore because that seems to invite more. I don't want to get any stronger. I just want to have a long, drama free (or at least minimal drama) streak.
Man, ideally I would just be able to get away. To forget about all of the responsibilities and stress. I just read Eat, Pray, Love and find myself fantasizing about taking a trip like that. Even just one leg of it. Shoot...even just a couple of weeks!
Oh, and did I mention that we are supposed to be going to Colorado this week to visit Gess's family? I'm was looking forward to the trip, but I really don't think that it is a good idea for Gess to travel right now. Right now he is insisting that he is up for going--but he basically hasn't been out of bed for more than 15 minutes at a time for the past 5 days...so a flight just seems like a bad idea to me. But what do I know?