Friday, June 13, 2014

Getting Used To A New Normal....Possibly

I was wrong, Todd won't tell me I'm crazy when his mind is more clear, and I tell him how this week has been.  It's been at least nine days and he is still sleepy and varying in degrees of confusion.  Sometimes it's not too bad other times it's just awful.  He hasn't been what I'm used to as his "normal" for over a week.  I start to question what could be wrong, because the last time we saw his doctor he said he was probably more sick from his diabetes than his liver right now. I don't have a way to check his blood sugar, because he never really did it himself and his supplies are old.  I feel so stupid to even admit that. He's never really cared, and I refused to treat him like a child. After consulting a couple of people who have seen him in the past week, I decide to take him to the hospital. I'm really starting to hate hospitals. I won't take him again. Everyone is nice of course, and helpful. That's not the reason I hate these places. The guy taking his vitals and putting his info into the computer asks him why he is there. Todd says, "Because my wife hates me." He asks him a few more questions and can tell Todd is not quite with it mentally. I usually have given a big explanation at this point. I'm too tired, I haven't said a word.  The guy looks at me and says, "So who are you?"  I say, "I'm the wife."  "Ahhhh," he says, "I was wondering."  Then he gives me the sympathetic smile I get from everyone. As Todd is being wheeled back to the room, I notice out of the corner of my eye, a man watching us. I don't know if he is a doctor or nurse what his job is. I look at him, he keeps watching me.  I have no idea why I noticed this or why it bothers me.  We finally get to the room and the doctor comes in. He's very young  and I suddenly feel very old.  They start drawing blood, he complains about his chest hurting, so they do an EKG.  I spend the next two hours telling Todd every so often that no, he can't go outside to smoke. He is convinced his nurse told him he could. He puts the monitor that goes on his finger to measure his oxygen levels on his middle finger and flips me off.  He laughs because he thinks he's funny and then falls asleep for a few more minutes. I close my eyes and wait.

After two hours, the doctor comes back in and gives me the results. His ammonia levels are normal. When the liver isn't doing it's job it can't filter the toxins out of the body, ammonia builds up in the brain, which can cause confusion.  The medication he is taking is keeping his ammonia levels normal.  This isn't the reason for his confusion. His blood sugar was also in the normal range.  There actually is no reason for the decline other than it being a progression of the cirrhosis. That's what this doctor thinks anyway. "So," I say, "should I expect this to be his new normal?"  The doctor says it's hard to tell but, it's very possible. It's getting harder to care for him. He starts making suggestions for the future as Todd gets worse. When they discharge him, the nurse hands me information about cirrhosis. I suddenly feel like a complete idiot.  Do they think I don't know what's going on? I just want to get out of there. I know more about this shitty disease than I ever wanted to, and I can't believe I didn't think this was part of it. I feel stupid. Of course his disease is progressing. I didn't expect it to happen that fast. He changed overnight....literally, and I hate using the word literally.  He decides he can walk out of the ER instead of using a wheelchair, it takes what feels like forever. I have a couple of people tell me good luck with everything....and I get more sympathetic smiles. I don't want to look at anyone, I know what they are thinking.  The same man who watched me on the way in, watches me on the way out. I have the sudden urge to turn and yell, "WHAT?!?" I don't. Instead, I look straight ahead, concentrating on the exit, telling myself not to cry over and over and over. Today is no different than yesterday or the day before. I'm kind of in a "what the hell am I supposed to do now" state of mind. I can't take much more time off of work. I can't afford to.  If this is our new normal I need to figure out how to adjust better.

My husband is only 45 years old, and I'm losing him a little more each month. Our nine year old just asked his dad what's wrong with him.  He doesn't understand why his dad is saying the crazy things he's saying.  Is he going to wake up one day and not know who I am? What about our kids? The thought of it breaks my heart.  I don't really want to know the answer. It's too much to think about. How long will he be like this before he gets worse?  We just finished fighting over him wanting to drive the car to the store...he can't even think straight. I have to threaten that I will call the police if he gets in the car.  He hid the damn key and I have no idea where it is. I'm just praying he doesn't remember where it is either. My feelings of hating him and caring about him are constantly  fighting with each other.  I feel sorry for him. I hate him for doing this to our family. I hurt for our kids who will lose their father to soon in life. I hurt for them because I know how it feels. Todd won't be able to tell me I'm crazy, because he may never be clear headed enough again for me to explain it to him. I just don't know. My patience is being tested much too often, and I'm kind of failing miserably in that department. He has an appointment with his doctor next week. I need realistic answers. I need to know my options.  I don't want to think about any of it, but I need to get a grasp on this new reality, before I lose my mind.

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