Needing to Vent!

September 20, 2009 at 2:40 pm

I have posted before about my husband possibly relapsing from GBS…Tomorrow hopefully the neurologist will have the admission to the hospital ready…and we can go and start the plasmapheresis. We are both very hopeful this will assist him in his recovery.
Okay, please don’t think I am terrible…but I really, really need to vent. I have had him home since Sept. 1st…almost 3 weeks. He has even relapsed more that when he was discharged from the rehab facility. Okay…He is total care. He can not turn himself, he can not feed himself, he can not hold the urinal himself, We have a hoyer (?) but I am still not use to it and he doesn’t feel confident with it, he can’t use the sliding board very good…to help me, no strength, he can’t bare weight or pivot; He can’t do anything. But…he does it nicely…but…he wants something all the time. He wakes me up at least 3 times a night…to turn or use urinal. Last night it was 4 times…finally the last time at 4:30 I stayed up. He wanted to use the bedpan to have a BM…because I can’t transfer him to the portable commode. Put him on it…then thought I’d get a cup of coffee and try to wake up. No…he didn’t need to go yet. This is what I did for him from 4:30 am to 10:30 am. Urinal 3 times, turned 4 times, bedpan for BM twice, bedbath, shave, brush teeth, cut fingernails, lotion feet, dressed him, did his stretching exercises, took BP and blood sugar, feed breakfast to him, and gave him his morning meds. I am exhausted. I have not had a minute to myself…till now. He is asleep. I am really feeling sorry for myself. I think I am going crazy!! I don’t mean to do a pity party. But my nerves are really fried!! I hate to ask my daughter-in-law to help (even tho she has offered…and done it once for me), because she has 2 small children to care for. She is my sounding block when I need to vent and very helpful. My son helps out when he can…but he is on nights…and needs his sleep during the daytime. When he is on day shift…he leaves at 5:30 am and gets home at 8 pm. Neighbors have offered, but my husband doesn’t want anyone else. My sister and her husband have offered, but they work during the day. My dad is 75 and doesn’t have the strength to help very much. I feel so alone. Am I going to survive this? My husband acts like the whole world revolves around him and his needs (which he is totally helpless), but I have needs to. What do I do? I have tried explaining it to him, but he looks so sad and crushed…then says he is afraid to ask me to do something…that I may get grouchy with him. What do I do? I really try to be nice, upbeat, and perky! But, I run out of perk after awhile! I pray for strength and patience. Thanks for letting me vent, and please, please don’t think I am a terrible person. Marcia