Last night was hell. Our older boys got into a fight, brought on by my not giving the older one what he wanted (it's a long story), the younger one got a big scratch on his face. I lost it with his older brother. I slammed his door, not realizing the 2 year old's hand was in the back of the door. Needless to say, I feel horrible. I rushed the 2 year old to the walk in center to get an X-ray. He was fine, just bruised. At the end of all this, I had to wipe DH again. Lately he needs more and more help with that. I feel horrified at having to do this, but I know it's part of being a caregiver. I just want to crawl into a hole and die sometimes.
Anyways, I'm rambling to DH about our oldest son's lack of self control. He seems to understand, but part way through, I realize he really doesn't. I asked him "Are you following me"? He says he doesn't even know where he is sometimes. I asked him if he knew where he was at home and he said yes and when I asked him if he knew who we were, he said yes. But I keep thinking this is the beginning of the big downslide. A year from now, he probably won't know me or his kids. I sat and cried after that. It felt good to get it out. This morning, he seemed really foggy and wasn't feeling well, but I had to send him to his day program; I couldn't have him home alone (I work all day) having messes and me not being there to help. I felt bad about that.
DH is supposed to go for the 2nd to last of his drug trial injections a week from Monday. For me, it's the 1st Monday I'm supposed to be back at work after a week's vacation (God, I hope it goes ok.), and frankly I don't want to go. I see no point in going for the last two injections, when the 1st two, which he had earlier in the year, did nothing for him. I know this is probably a topic for the drug trial thread and I apologize for being "off topic", but it's part of my Friday vent, and I'm wondering if I'm being selfish here or realistic. I can't see using my much needed days off for something that's useless. I need the days for when the kids or DH get sick, when I'm sick, etc.
Kelly if you dont see any differences then maybe it is time to drop the trial phase and use those days as you say for something better needed- its probably understandable that your two boys get fustrated as well with all thats going on and cant release the tension only thru bickering. glad the babys finger is ok. you are doing the best you can and you should be applauded for caring for DH plus young children on top of all the responsibilities you are having now. at some point, sooner or later, your DH may not be able to 'follow' your input anymore so be prepared for any off the wall comment. those of you with kids at home and AD spouses are martyrs for sure. with all this added stress you must make time for a little bit of 'me' time- even if its a long bubble bath and a candle/wine..divvi
Kelly...I am so sorry for your situation and like the saying goes we all are between a rock and a hard place. However, I feel guilty for venting when I hear how bad you have it with young children and working. You will be at the top of my prayer list this weekend.
Kelly .. I am so sorry this is happening to you. I also work and I understand how it feels to use days off for DH drs.' appt's., etc. Every dr. appt. takes the whole day between getting him ready, transportation and the actual visit. Who knows what a real day off is anymore? You are carrying a heavy burden. Because you know that there was little to no result with the first it is only logical that you are questioning the value. I say do what you need to do for yourself....At this point we can't stop the disease no matter how much we want to. I Just know that we are thinking of you and your family
Thanks so much. I don't know what I would do without this site. I can always find a kind word and a lot of understanding.
It is extremely hard raising kids with all of this. (Raising kids is hard even without this!), but sometimes I think I could never stand all this without having the kids around. Juggling all these balls gives me some "balance", if a crazy one! Some days it's not a day at a time, but an hour, or a few minutes at a time!
If you are still working and need time off, check with you employer about FMLA (Family Medical Leave of Absence). The company I work for allowed me 80 hours a year to take DH to doctors. It really helped a lot. I did have to reapply every 6 months for it and use special time codes along with e-mails to my boss but it was worth it.
Kelly, I've forgotten. Is the clinical trial double-blind or open-label? And if it's double-blind, will there be an open-label follow-on stage? That might make it worth-while to keep going.