A Day in Life
Husband sleeps on the couch. When he wakes up he turns up the volume on the TV (the TV is never turned off, just turned down - it gives him a night light); that is my alarm clock. This usually happens around 4 am. I get up, turn on his light, get him something to drink, usually a soda, and take away the pee jugs. There is more than one because if one should get too heavy he could drop it; and that is no way to start your day. Once I have him settled I lay back down and cat nap till around 6 am if I’m lucky. He can’t drink coffee until he has been up at least one hour so by the time I get up he is ready. We drink coffee and watch shows taped the night before. At 7 am it’s pill time and time to stop watching tape for about 30 minutes and watch the morning program, usually NBC. After we finish the pot of coffee it’s breakfast time, usually around 9 am. He gets a 12 ounce glass of apple juice after the coffee. Breakfast is malt-o-meal and at 9 am we watch Regis & Kelly, followed by Price is Right and Young & Restless. After he finishes his juice I make another half pot of coffee. About the coffee, it must be Columbian and strong with a little milk. After coffee then it’s a couple of glasses of tea until its coffee time again around 3 pm. At noon we turn to dialing for dollars on channel 4 and stay there till 2:30 when we go back to tape. Stay on tape until 4 pm when we watch Ellen. Lunch is at 1 pm along with round two of meds. Dinner around 5:30 while watching the news then another half pot of coffee. Last of the days pills at 7 pm. Husband falls asleep between 8 - 10 pm, usually 8 unless something really special is on and we are taping something else just as good. We always tape Letterman and Craig. After spending entire day sitting on the sofa husband then sleeps on sofa at night. Before he lays down the blanket he sleeps on needs to be switched around so he isn’t on the same spot each day and the cushions on the sofa get flipped and swapped for the same reason. During the day the only time he is up is to stumble to the bathroom, he must walk with assistance so he uses a cane since it’s so small in here. This place is only 8’ wide. Now imagine this is your life day after day, week after week, month after month, and year after year.
You may be asking yourself, what his problem. It’s one of those rare nerve diseases that is just waiting to attack thirty somethings. His is Guillian-Barre’, a peripheral nerve disease that one can usually recover from. Husband got better after the initial bout in ‘92, but he is in the small percentage of people that it came back on. First the weakness, then seizures, then a couple of strokes. His mental function has improved over the years but the physical conditions still sucks. Have you ever had you leg go to sleep? His whole body did that and his legs are still numb. That’s why he can’t walk, he can’t feel his legs. His grip strength has improved to where he can now hold a glass without a handle and the seizures are few and far between. All things considered he is better than he was a few years back. The biggest challenge through this has been his mental attitude. It was hard to go from taking care of me to me taking care of him. He was suicidal for years and to this day it would be real hard to kill yourself in this place. He thought he would be doing me favor by dying so I could move on with my life. A nice thought but not the right thought. He told me his theories and after a while I found myself almost agreeing with him. That’s when I petitioned the courts and had him involuntarily committed. That was in ‘97. In ‘99 he was back in but that went in on his own. Now we have reached a point where he looks forward to tomorrow. The biggest threat we face now his keeping his sodium level up. One of his seizure meds. Pulls sodium out and he keeps some low numbers. He has been down to lethal levels but didn’t die. I think it’s because the decline in sodium was gradual and his body adjusted. It wasn’t like an athlete losing everything in one day and collapsing. It is low enough that a bout of food poisoning could take him out, so boy am I careful.
And that is our how we got here and what here is each and every day.
You may be asking yourself, what his problem. It’s one of those rare nerve diseases that is just waiting to attack thirty somethings. His is Guillian-Barre’, a peripheral nerve disease that one can usually recover from. Husband got better after the initial bout in ‘92, but he is in the small percentage of people that it came back on. First the weakness, then seizures, then a couple of strokes. His mental function has improved over the years but the physical conditions still sucks. Have you ever had you leg go to sleep? His whole body did that and his legs are still numb. That’s why he can’t walk, he can’t feel his legs. His grip strength has improved to where he can now hold a glass without a handle and the seizures are few and far between. All things considered he is better than he was a few years back. The biggest challenge through this has been his mental attitude. It was hard to go from taking care of me to me taking care of him. He was suicidal for years and to this day it would be real hard to kill yourself in this place. He thought he would be doing me favor by dying so I could move on with my life. A nice thought but not the right thought. He told me his theories and after a while I found myself almost agreeing with him. That’s when I petitioned the courts and had him involuntarily committed. That was in ‘97. In ‘99 he was back in but that went in on his own. Now we have reached a point where he looks forward to tomorrow. The biggest threat we face now his keeping his sodium level up. One of his seizure meds. Pulls sodium out and he keeps some low numbers. He has been down to lethal levels but didn’t die. I think it’s because the decline in sodium was gradual and his body adjusted. It wasn’t like an athlete losing everything in one day and collapsing. It is low enough that a bout of food poisoning could take him out, so boy am I careful.
And that is our how we got here and what here is each and every day.
posted by ouachita woman | 10:04 PM
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