I must be the worst caregiver there is. It sucks for Dad that I'm what he gets as a primary caregiver. I don't know what I'm doing, I'm angry most of the time, impatient, frustrated, irritable and so unbelievably frustrated. Last night never ended. It started the minute I walked in the door after work. Dad greets me in his undergarment, holding his hand against his stoma. I hate it when he walks around like that. The wafer and bag had just fallen off (AGAIN!). Debbie replaced it just Sunday. The air was scented with feces, and my somewhat pleasant mood tanked. It seemed to my weary eyes that everything he touched had feces smeared on it, the back door, the washing machine, bathroom sink, waste basket filled with soiled paper towels...it was horrible. I tried to hide my feelings but I'm not good at that. My face screwed up like an old prune as I walked into the living room for recon duty. I cut the appropriate sized hole in the middle of the wafer, glued it to his stomach, and attached a new bag. Having to replace the wafer was not what had me undone...but seeing my dad in his depends, not to mention, all the hot spots around the house where he marked his territory, completely messes with my head. I guess he figures anyone who has emptied his bag and checked stitches in places where the sun don't shine...well, what else is there to be shy about? He also answers the door in his under garment for the nurse when she visits once a week. Delightful. Simple fact is, he's my dad and now that he's up and about is it too much to ask that he clean up behind himself when he exits the bathroom, and for Pete's sake conceal all those unmentionables behind the robe! That's what the belt is for. Is it too much to ask? After I cleaned him up and the environment around him I went upstairs. Sleep didn't come easy...I couldn't stop thinking about everything, my Dad, my job, my dad, losing my job, the lousy job I was doing helping my dad...with all that on my mind I must have dosed. What woke me up at around midnight was my dad bellowing. The wafer and bag had fallen off again. SHIT! Again, I cleaned him up, and everything else (don't ask!), went to the store to buy some stool softener and cookies, yeah, he asked for the marshmellow ones coated in chocolate, then tried to go back to sleep. I woke up at 6:00 a.m. So much for getting to work at 6:00 a.m. The bellowing again. I go into the living room and he's sitting in his underwear holding his hand against his stomach. Guess what happened? Yep, the whole thing fell off while he slept. The entire house smells like stool. Even after cleaning it up I can still smell it in my nose hairs.
Funny, Debbie and I were so proud of our efforts to get him back on his feet the weeks following his surgery. We diligently followed the instructions from the nurses, emptied the colostopy bags, kept the incision clean, helped him get around the house when he could barely walk...and seeing him improve lifted our spirits. We'd been able to keep him in his home like he wanted. Very naive.
I must sound like a really uncaring and unsympathetic daughter. I'm not, really I'm not...which is the point. I love my Dad. His problem with cleanliness existed before the surgery. Adding the issues with the colostopy bag just took it up a step.
Dad was going to cancel his chemo today, however after talking to his nurse, Brenda, she explained what was going on. Something about his stoma being inverted, which is why it keeps backing up, why it's not working properly, and why it's now bleeding. But the good part is they know how to fix it. She suggested that he keep his chemo appointment, then tonight at 5:30 p.m. he has another appointment to keep with Dr. Klatt, the guy who stole his rectum in the first place and replaced it with that damn stoma. The way I see it, Klatt owes dad big time. The thing ain't working, it's broke and needs to be fixed free of charge.
I'm sick to death of playing amateur nurse because I don't know what the hell I'm doing. This is the beginning of a scary story about cancer and diabetes and heart disease that will end badly. I know that. And I'm just scared.
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