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.

How Am I Supposed To Get Through This?

It's after midnight, and I'm home from work for the second night in a row. I somehow didn't think about the fact that my teenagers were going to be gone Friday night and I had no idea when they would be home Saturday.  I couldn't leave my nine year old home alone with his dad.  This week is a bad week mentally for Todd, he has had only one "normal" (staying in bed for at least 8 hours) night sleep.  The rest of the week he has taken naps here and there, but most of his time has been spent in the garage.  It's just after midnight and I finally got Todd upstairs after being in the garage all day.  He's having a lot of problems with his memory this week. Five minutes after getting him up the stairs, he tells me he hasn't been downstairs to smoke yet. "What do you mean? You just came upstairs!"  "No" he says, "I haven't been down there for awhile." He turns around and goes right back down the stairs...I want to cry. This is the second time we've gone through this pattern this week. I am crying as I write this. I don't want to do this anymore, it's too hard. I hate it. I won't be at work again tomorrow, because I know tomorrow is going to be worse than today. I've already been through this once this week. I'm tired...mentally tired. My paycheck is going to be crap. I can't go to my family reunion this year, and I'm so unbelievably angry about it. He's ruined every reunion for me. Yes, I do blame him. He's sick because of choices he made, and I'm tired of taking care of him. I'm thinking about talking to my doctor about medication for depression. I don't know that I'm depressed so much, as I'm just sick of everything and I've had enough. How am I supposed to get through this, when I've had enough? Don't advise me to pray. I pray all the time. Maybe I'm praying for the wrong things. I just want to go a day without feeling like I want to run away.  I looked up support groups on the internet for caregivers of people with cirrhosis. The first entry I read, made me cry. The woman described what she goes through with her husband. She was describing my life. She said she often has times she says she's done and tells him she's leaving. I've been there too. This disease sucks....it more than sucks. I'm tired of arguing with him about stupid things like him wanting me to take him to the store at 10:00 at night, because he doesn't realize what time of day it is, or driving, or something he can't find. I'm sure if I were to ask him right this moment what day it is, he would not be able to tell me.

The only way I can describe it is this... It's like dealing with a person who has been drinking...except 24/7.  Which is awesome considering I put up with him being an alcoholic for years.  Sometimes he acts 2 beers drunk, sometimes it's like he's so drunk he is blacking out. All day....everyday varying degrees of this.  He'll tell me I'm crazy if I try to tell him what this week has been like when his mind is a little more clear....because it will be. Watching someone get drunk will never be funny to me....its a good way to escape reality? Give me a fucking break. I actually find it sickening. I'm writing all this in a notebook, because I don't want to turn on my computer. It's now after 1:00am, I have to go downstairs and try to convince him again that it's time to come upstairs to go to sleep. He'll probably end up sleeping in his chair in the garage. I can't argue with him and I can't carry an almost 300 pound man up the stairs. So, one more attempt, either way I'm going to bed. I don't know what else to do. He's driving me insane. I'm feeling a tiny bit better now that I've gotten that out. I'm still tired. I still don't know how I'm supposed to get through this.....to keep moving.....to keep going. I can't just walk away, even though I wish so many days that I could. I continue on day by day, minute by minute, reminding myself to just breathe, because even though I don't know how I'm supposed to get through this, I know I will.  The only alternative is for me not to, and that really isn't an option....too many people depend on me.

It's 8:30am, his side of the bed is exactly the way it was when I fell asleep. He stayed up all night. My  nine year old comes in and lays next to me. He's showing me his latest video he made of himself playing with his trains. I'm smiling, but not really paying attention. I walk downstairs to the garage. Todd is sitting in his chair, the door is open, and he's awake for right now. He looks at me, I close the door without saying a word, and walk back upstairs. I'm not in the mood to argue with him. His wounds are getting worse. They have spread from his ankles, to his feet, to his toes. It is getting harder for him to walk. He still won't monitor his blood sugar, or eat right, or quit smoking. I don't know how he will escape amputation. I have a feeling, it's coming, but I can't predict the future. My house is all stairs, I can't even fit a wheelchair through any of the doors. I'm forced to think about the "what if's" on a daily basis. This week has been too much for me. I'm going to miss my family reunion...I really needed that time away. I hate this house, some days it feels like a prison. I know people are going to ask what they can do for me. Nothing....there really is nothing. I close my eyes, I take a deep breath and tell myself it's time to face the day.