Could somebody please tell me what to expect? How much worse will Donny get before it's over? How much time do we have left? Isn't there anybody out there who has some idea of what's going to happen?
I don't know how much more I can handle. And I don't know what I'll do when I can't care for him anymore. If we're nowhere near the end, and it's going to get a lot worse, I just might lose my mind.
Do you have any idea what it's like to watch your husband lose his mental function? Donny was never book smart, but he used to have street smarts that could get you through anything. Now he can't dress himself unless he's wearing sweats and a tshirt. And even then he can't always dress himself. And don't even think about getting him to shower by himself. How much worse can it get?
I fear the day that we have to switch to using diapers with him. I can change a baby, but how do you change an adult? And yet, I can't be home all the time to take him to the bathroom. Life has to keep going somehow. What will I do?
Our insurance doesn't cover a nursing home, so there's no way in hell that they'll cover home nursing. And if I can't get Social Security to declare him disabled, then most services for low income disabled people aren't available to us.
I feel like I'm beating my head against a wall. All I want is good healthcare for my husband, but I can't figure out how to get that.
If a doctor could tell me what to expect I could at least start looking for solutions to coming problems, but they're vague at best. And the specialist that's supposed to see him keeps putting him off. I keep get the feeling that folks are just making excuses, biding their time, waiting til he dies. Then the problem goes away, and they never have to deal with it.
Our regualr doctor does what he can, but this isn't his area of expertise. He tries to help me, but he can't force other people to do anything. He just can't provide the answers that I need.
Where are all the answers?
Tuesday, December 11, 2007
Bedtime
Yesterday was a long, but fun day. I went shopping with my mom. I need clothes for the office, but I'm on a budget. This makes clothes shopping a challenge. I love a challenge. I was at one of the pricier stores that I like, looking at the clearance racks. I found some pants that were exactly what I was looking for, and they were my size. So I started looking for a price. The only sign that I could see said $4.99. Now, I know that I was shopping a clearance rack, but these were $44.99 normally, so I knew that couldn't be the price. I finally asked somebody who worked there to check the price for me. They were $4.99! I got three new pairs of pants.
Last night I babysat for my pastor. I got the kids from the other babysitter at 8:00. I had the girls put their jammies on right away because I wanted to get them into bed. Their mom had laid out clean jammies for all three girls right where they couldn't be missed in the living room floor. So the girls stripped down right there in the living room and changed. The youngest one took the middle girl's jammies and had the shirt on before anybody realized what she had done. Getting the right jammies on her caused the first meltdown.
They informed me that they were hungry, the other babysitter didn't give them dinner (not true), they always get a bedtime snack, and so on. So I let them have some crackers with peanutbutter and a little milk. The youngest one got over her meltdown and joined us for snack. her cracker broke and so it became unacceptable to her. So she threw it across the table at her sister. That's when I removed her from the table, and so began the second meltdown.
I took her in the hallway, awa from the noise, and was kind of rocking her and trying to calm her down. I asked her if she wanted a snack and she told me no. So I asked her if she wanted some milk and she told me no. Then I asked her if she just wanted to be disagreeable, and she said yes. Lovely, she's not quite three and she's already PMSing.
Snack time was over and I got the girls to brush their teeth, one at a time. (The girls, not the teeth.) I was a little alarmed at the number of books tthat they had brought to me for bedtime story, but figured that they would get one each. (For the chapter book it was one chapter each.) I was informed that they normally got two books or two chapters each at bedtime. That's a lot of reading, but their dad's as big of a nerd as mine, so I could see that being the norm.
At the end of story time the oldest tried really hard to convince me to read one more chapter out of her book. When that didn't work she tried to convince me that she always gets time to read to herself before lights out. She was really put out when that didn't work. And the youngest was really put out when I didn't let her crawl into bed with her sister. And so she tried to go into meltdown number three, but she was just too tired.
Somewhere around 9:30 or 9:45 I finally had the girls settled and left their room. By 10:00 they were all asleep.
I still say that it's harder to put Donny to bed.
Last night I babysat for my pastor. I got the kids from the other babysitter at 8:00. I had the girls put their jammies on right away because I wanted to get them into bed. Their mom had laid out clean jammies for all three girls right where they couldn't be missed in the living room floor. So the girls stripped down right there in the living room and changed. The youngest one took the middle girl's jammies and had the shirt on before anybody realized what she had done. Getting the right jammies on her caused the first meltdown.
They informed me that they were hungry, the other babysitter didn't give them dinner (not true), they always get a bedtime snack, and so on. So I let them have some crackers with peanutbutter and a little milk. The youngest one got over her meltdown and joined us for snack. her cracker broke and so it became unacceptable to her. So she threw it across the table at her sister. That's when I removed her from the table, and so began the second meltdown.
I took her in the hallway, awa from the noise, and was kind of rocking her and trying to calm her down. I asked her if she wanted a snack and she told me no. So I asked her if she wanted some milk and she told me no. Then I asked her if she just wanted to be disagreeable, and she said yes. Lovely, she's not quite three and she's already PMSing.
Snack time was over and I got the girls to brush their teeth, one at a time. (The girls, not the teeth.) I was a little alarmed at the number of books tthat they had brought to me for bedtime story, but figured that they would get one each. (For the chapter book it was one chapter each.) I was informed that they normally got two books or two chapters each at bedtime. That's a lot of reading, but their dad's as big of a nerd as mine, so I could see that being the norm.
At the end of story time the oldest tried really hard to convince me to read one more chapter out of her book. When that didn't work she tried to convince me that she always gets time to read to herself before lights out. She was really put out when that didn't work. And the youngest was really put out when I didn't let her crawl into bed with her sister. And so she tried to go into meltdown number three, but she was just too tired.
Somewhere around 9:30 or 9:45 I finally had the girls settled and left their room. By 10:00 they were all asleep.
I still say that it's harder to put Donny to bed.
Sunday, December 09, 2007
Ho hum...
I had a fairly average day today. This morning Donny decided to take his medicine after all. He's terrified of being put in restraints again. When his head's clear he realizes that he can avoid restraints by taking his lactulose, so he's usually pretty good about taking it.
I went grocery shopping with my parents today. We spent $478.37 in one LONG trip to the store. Let me tell you, our monthly shopping trips are not for the faint of heart. My mom and I got worried when we realized that we'd lost my dad and he had his own cart. Fortunately he didn't put very much in it, because I had to track him down and trade carts since mine and mom's were full. I was exhausted by the time we left the store.
After spending almost $500 dollars on groceries, we had KFC for dinner. I was too damn tired to cook. Donny woke up just as we were sitting down to eat, so for once he actually joined us at the dinner table. It was nice to have a family dinner, even if Donny and Aunt Lenora couldn't stop sniping at each other for very long.
After dinner I took a chair into the kitchen and sat down to start working on the groceries. I had to sort through all the bags and make sure that all the perishables were put away. I also had to sort out the stuff that's being saved for something special and set it aside. As I was sitting there doing this a large can of pumpkin fell of the counter. The edge of it hit my knee and it felt like it dug in behind the knee cap some. Let me tell you, that smarts.
I found out today that my babysitting job tomorrow will be easier than I thought. I'm to show up at 8:00, just after the first babysitter puts the kids to bed. I just have to be a live, warm, adult body in the house. A piece of cake!
I went grocery shopping with my parents today. We spent $478.37 in one LONG trip to the store. Let me tell you, our monthly shopping trips are not for the faint of heart. My mom and I got worried when we realized that we'd lost my dad and he had his own cart. Fortunately he didn't put very much in it, because I had to track him down and trade carts since mine and mom's were full. I was exhausted by the time we left the store.
After spending almost $500 dollars on groceries, we had KFC for dinner. I was too damn tired to cook. Donny woke up just as we were sitting down to eat, so for once he actually joined us at the dinner table. It was nice to have a family dinner, even if Donny and Aunt Lenora couldn't stop sniping at each other for very long.
After dinner I took a chair into the kitchen and sat down to start working on the groceries. I had to sort through all the bags and make sure that all the perishables were put away. I also had to sort out the stuff that's being saved for something special and set it aside. As I was sitting there doing this a large can of pumpkin fell of the counter. The edge of it hit my knee and it felt like it dug in behind the knee cap some. Let me tell you, that smarts.
I found out today that my babysitting job tomorrow will be easier than I thought. I'm to show up at 8:00, just after the first babysitter puts the kids to bed. I just have to be a live, warm, adult body in the house. A piece of cake!
Saturday, December 08, 2007
Ups and Downs
Today was a day of ups and downs for me. I didn't do the reading for my class this morning. I simply had run out of time well before I ran out of stuff to do. I was also a little worried because I thought that I needed to study more before my final on parts 2 & 3 today.
When class started the instructor asked the class if anybody had done the reading. Nobody spoke up, so at least I wasn't alone. He then said that it was okay since none of it would be on the final. What a relief!
It got better when we only used about half the morning session for that chapter. Our instructor decided to use the other half to review what would be on the final. He told us that we could have a page of notes for the closed book portion of the final. And then he went over each question one by one, telling us the answers. He didn't say that we were covering the exact questions from the final, but I had a hunch that we were. That's why I wrote down the answers as he gave them.
When it came time to do the final I took out the notes I'd taken during the review. I read everything carefully, just to be sure that the questions were the same ones that we'd covered, and then I copied the answers over. The open book part was really easy too, since we'd been told exactly where to find the answers.
The third part of the final was to do an actual return that included all the schedules and forms that we'd been studying. If you own your own home, have a rental property, hold a job, own a business, and are raising a couple of kids, one of whom is in college, I can do your taxes.
I got this return done and just needed to print and sign it when I discovered that there was a problem with my computer and I couldn't print. Normally this wouldn't be a problem, just sign in on another computer and print your return. Unfortunately my computer was not hooked up to the network so I couldn't access my work from another computer. This meant that I had to start all over again.
So I switched computers and redid my work. After I was all done I realized that I was wrong. I hadn't turned in my work yet, so I was able to fix it. It took me an hour to find $15. What really sucked was that once I found the error I realized that it was something that I would have gotten right if I hadn't second guessed myself. Oh well, at least I found the error in time to fix it. I should get a good grade on this. The best part is that there is only one more session of class, and that's just to get our scores and go over last minute tax law updates. I'm done!
I came home all excited. I was ready to celebrate. And then I realized that I'm teaching Sunday School tomorrow and I still haven't prepared. So I went down to the church to get the supplies only to discover that there was a dinner being held in the room where the supplies are. I was able to discover that there was no green paper for our craft tomorrow, so I got spend a couple of hours coloring some paper green. When I get done here I have to go back to the church and try to get my supplies. (Having keys to the church comes in handy sometimes.)
As I was working on coloring the paper green Donny came in and asked about getting his medicine. I had him bring me the bag and I got out tonight's pills. As I was doing so it became obvious to me that he got into his medicine today and took some. This wouldn't be bad if he would properly dose himself, but he gets it all wrong. I no longer have enough pain killers to make it until time to fill them again. It doesn't help that day 30 falls on the weekend, so he can't get his medicine until day 32. I had it all worked out, but he just screwed that up royally. I am so pissed!
I confronted Donny about this, but he just got all mad and swears up and down that he didn't get into the medicine at all. But I'm absolutely positive that he did. So now he's refusing to take any medicine at all.
The no medicine edict includes his lactulose. I am so not looking forward to this. He's going to get stubborn and not take his lactulose until it puts him into the hospital. I'm expecting Tuesday or Wednesday to be headed to the hospital with him. I'm getting really tired of this routine.
When class started the instructor asked the class if anybody had done the reading. Nobody spoke up, so at least I wasn't alone. He then said that it was okay since none of it would be on the final. What a relief!
It got better when we only used about half the morning session for that chapter. Our instructor decided to use the other half to review what would be on the final. He told us that we could have a page of notes for the closed book portion of the final. And then he went over each question one by one, telling us the answers. He didn't say that we were covering the exact questions from the final, but I had a hunch that we were. That's why I wrote down the answers as he gave them.
When it came time to do the final I took out the notes I'd taken during the review. I read everything carefully, just to be sure that the questions were the same ones that we'd covered, and then I copied the answers over. The open book part was really easy too, since we'd been told exactly where to find the answers.
The third part of the final was to do an actual return that included all the schedules and forms that we'd been studying. If you own your own home, have a rental property, hold a job, own a business, and are raising a couple of kids, one of whom is in college, I can do your taxes.
I got this return done and just needed to print and sign it when I discovered that there was a problem with my computer and I couldn't print. Normally this wouldn't be a problem, just sign in on another computer and print your return. Unfortunately my computer was not hooked up to the network so I couldn't access my work from another computer. This meant that I had to start all over again.
So I switched computers and redid my work. After I was all done I realized that I was wrong. I hadn't turned in my work yet, so I was able to fix it. It took me an hour to find $15. What really sucked was that once I found the error I realized that it was something that I would have gotten right if I hadn't second guessed myself. Oh well, at least I found the error in time to fix it. I should get a good grade on this. The best part is that there is only one more session of class, and that's just to get our scores and go over last minute tax law updates. I'm done!
I came home all excited. I was ready to celebrate. And then I realized that I'm teaching Sunday School tomorrow and I still haven't prepared. So I went down to the church to get the supplies only to discover that there was a dinner being held in the room where the supplies are. I was able to discover that there was no green paper for our craft tomorrow, so I got spend a couple of hours coloring some paper green. When I get done here I have to go back to the church and try to get my supplies. (Having keys to the church comes in handy sometimes.)
As I was working on coloring the paper green Donny came in and asked about getting his medicine. I had him bring me the bag and I got out tonight's pills. As I was doing so it became obvious to me that he got into his medicine today and took some. This wouldn't be bad if he would properly dose himself, but he gets it all wrong. I no longer have enough pain killers to make it until time to fill them again. It doesn't help that day 30 falls on the weekend, so he can't get his medicine until day 32. I had it all worked out, but he just screwed that up royally. I am so pissed!
I confronted Donny about this, but he just got all mad and swears up and down that he didn't get into the medicine at all. But I'm absolutely positive that he did. So now he's refusing to take any medicine at all.
The no medicine edict includes his lactulose. I am so not looking forward to this. He's going to get stubborn and not take his lactulose until it puts him into the hospital. I'm expecting Tuesday or Wednesday to be headed to the hospital with him. I'm getting really tired of this routine.
Tuesday, December 04, 2007
And then he pulls a stunt like this...
My husband can be so sweet. I got paid today, and due to getting extra hours we had more cash than usual. I was thinking of all the things that we need to get done and trying to prioritize them. That's about when Donny told me that I had to put $100 in my dad's wallet.
Donny's not allowed to have cash, so I wasn't surprised that he said for me to give the money to my dad, what surprised me was the amount of money that he wanted put away. So I started questioning him. Why do you want me to put that money away? Is there something that I should know?
Donny had to think about it for a bit before deciding to answer me. At first he just said that it was for a Christmas present. That's when I started trying to bargain him down to a smaller amount, but he was adamant. He thought about it, realized that I would have to be in on the purchasing phase of things, and decided to tell me what was going on.
My husband wants me to buy myself a pair of shoes. He wants me to actually spend $100 on 1 pair of shoes. For budgetary reasons I just can't bring myself to spend that much on 1 pair of shoes. This is why tomorrow my husband is going shopping with me while I look for shoes.
Just when I'm convinced that the sweet, thoughtful man that I married is gone for good, he goes and does something like this. I really do love him, even when he doesn't insist that I buy new shoes.
Donny's not allowed to have cash, so I wasn't surprised that he said for me to give the money to my dad, what surprised me was the amount of money that he wanted put away. So I started questioning him. Why do you want me to put that money away? Is there something that I should know?
Donny had to think about it for a bit before deciding to answer me. At first he just said that it was for a Christmas present. That's when I started trying to bargain him down to a smaller amount, but he was adamant. He thought about it, realized that I would have to be in on the purchasing phase of things, and decided to tell me what was going on.
My husband wants me to buy myself a pair of shoes. He wants me to actually spend $100 on 1 pair of shoes. For budgetary reasons I just can't bring myself to spend that much on 1 pair of shoes. This is why tomorrow my husband is going shopping with me while I look for shoes.
Just when I'm convinced that the sweet, thoughtful man that I married is gone for good, he goes and does something like this. I really do love him, even when he doesn't insist that I buy new shoes.
Monday, December 03, 2007
Black Monday
I'm beginning to think that I should not attempt to do anything outside of the house. I went to work for about an hour this evening. Donny called me while I was there to let me know that he'd had 2 black, tarry bowel movements today. Thanks for sharing.
Maybe the problem is that I had nowhere to go tomorrow. I thought that I was finally getting a stay at home day, but maybe not. I now have to give his doctor a call in the morning and ask him how concerned we should be. I'm really hoping to hear that we should give it a couple of days and see what happens. I'm still holding out hope that it's something that he ate.
Maybe the problem is that I had nowhere to go tomorrow. I thought that I was finally getting a stay at home day, but maybe not. I now have to give his doctor a call in the morning and ask him how concerned we should be. I'm really hoping to hear that we should give it a couple of days and see what happens. I'm still holding out hope that it's something that he ate.
Sunday, December 02, 2007
A punch in the gut
Last night was the annual tree lighting in our small town. My mom had a craft booth and my church was passing out cookies. The two booths were side by side so being at them both was easy. I was able to visit with people and spend more time getting to know them. It was really fun.
At one point a man brought his daughter to the church's booth to get a cookie. She was 15 months old and she was adorable. With her dad's encouragement she would hold one little tiny finger up when asked her age. She smiled real pretty at everyone and seemed to be a very happy child. It was great.
That's when the punch in the stomach came. I never see it coming, it's always too late to back off before it hits. I want one. Donny and I really wanted to have a child together. Unfortunately I can't have one without a doctor's help. And right now the doctor won't let me because it would be too high of a risk health wise. The truly awful thing is that I know that Donny and I will never have a child together. It won't happen before he goes. Even if I were healthy, he couldn't now.
I know that there is still the possibility of having a baby some time in the future. However, I'm 30, so that window of opportunity is getting smaller. With all my health issues this is something that I should have done in my 20s, but it wasn't time for a baby then. By the time that I find somebody else to start a family with, if I ever do, I'll probably be a lot closer to 40. I'm getting really afraid that I'll never know the joy of being pregnant. At least there's a much better prospect for knowing the joy of motherhood. There's always adoption.
At one point a man brought his daughter to the church's booth to get a cookie. She was 15 months old and she was adorable. With her dad's encouragement she would hold one little tiny finger up when asked her age. She smiled real pretty at everyone and seemed to be a very happy child. It was great.
That's when the punch in the stomach came. I never see it coming, it's always too late to back off before it hits. I want one. Donny and I really wanted to have a child together. Unfortunately I can't have one without a doctor's help. And right now the doctor won't let me because it would be too high of a risk health wise. The truly awful thing is that I know that Donny and I will never have a child together. It won't happen before he goes. Even if I were healthy, he couldn't now.
I know that there is still the possibility of having a baby some time in the future. However, I'm 30, so that window of opportunity is getting smaller. With all my health issues this is something that I should have done in my 20s, but it wasn't time for a baby then. By the time that I find somebody else to start a family with, if I ever do, I'll probably be a lot closer to 40. I'm getting really afraid that I'll never know the joy of being pregnant. At least there's a much better prospect for knowing the joy of motherhood. There's always adoption.
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