Sunday, December 21, 2008
This morning I went to church. It was good for me. After church a couple that I'm friends with came over and helped me set up the christmas tree. We hadn't planned on decorating for Christmas, but with the grandkids coming I needed to. The girls want to celebrate Christmas with me this year, so I needed to at least make some effort to be ready. This evening I went to Bible study at a friend's house. I went early and had dinner with her, it was nice and relaxing.
Tomorrow I'm headed to my mother-in-law's for a visit and to drop off a cd of pictures. My niece has volunteered to do a collage of pictures on a poster board for Donny's memorial service. At 2:00 I'm meeting with my pastor to plan Donny's service. I'm hoping to also get a few things done around the house. There are still presents that need wrapped. My aunt and uncle let their dog sleep with them on my parent's bed so it needs stripped and everything washed, since my mom's allergic to dogs.
Staying busy should help. I'm trying hard not to let my mind get too active. I keep being plagued with questions. My biggest question is whether or not it would have made any difference if I had gotten Donny to the hospital. I knew he was sick. As I went in to our room on Thursday morning I was think about how if he slept like he had the day before then I would need to take him in. I feel so guilty for not taking him to the hospital. Because there was no autopsy I'll probably never have my answer. I just hope that I can learn to live with the wondering.
Thursday, December 18, 2008
A little before 8:00 this morning I went into my bedroom to put together Donny's medicine for the day. As I was walking in there I was thinking about how if Donny spent today sleeping like he did yesterday that I would need to take him to the hosputal. As I was passing the foot of the bed I laid a hand on his leg and realized that it was cold. I had the thought that I needed to cover him up, and the I stopped to look at his chest. It's actually been a habit lately to watch Donny in his sleep until I see something move, just to be sure. The problem was that I couldn't see any movement. As I laid my hand in a couple other places I realized that he was unnaturally cold. I felt for a pulse, and then went to get my uncle. My uncle was in there for less than 30 seconds when he came out and called 911. Donny was gone.
I called my sister by other parents and she got there the same time as the cops. She held my hand as the police officer asked me questions about Donny. She took the phone away from me and called family. She asked our pastor to come. She kept all the phones and fielded all the calls. As she did this my uncle dealt with the paramedics, police and the guys from the mortuary. I still don't know who called the mortuary for me. Michelle took me to the bank to get Donny's ATM card deactivated. She took me to the mortuary to finalize details. She took me home with her to avoid people I didn't want to see. Three times today she set food in front of me and made me eat it. She got me through the day.
The list of people who called asking to be allowed to do something for me is so long that I'm afraid I can't remember it all. Several people from the church called. Lots of family called. My manager from H&R Block called. One of the girls from my office. One of our local police officers stopped by while I was gone and left his business card. He used to come sit and visit with Donny, so I'm sure it was just a condolance call. Our doctor called and said that if there's anything that he can do to let him know. The number of people who have specifically said that they don't mind if I call in the middle of the night is amazing. I'm overwhelmed at the love and support that came today.
I don't know how I feel. I don't know how I should feel. One minute I'm marveling at the number of people who love us, and the next I'm crying about the idea of trying to go on. Mostly I feel numb. I worry that I'll keep feeling numb. It's a pettern for me. I worry that I'll quit being numb. I'm scared to feel the loss. I'm not ready for it. We knew this was coming, I tried to get ready, but how do you prepare for the death of the love of your life? I don't know . I don't know anything anymore.
Wednesday, November 26, 2008
As I said, I'm back at work already. My job is to take applications for a line of credit. We do them online and the customer gets an instant response. Of course, when the program was launched nationally the traffic overwhelmed the computers, and they went out. Our computers have been down since Monday, and they won't be up again until Friday. This means that Friday is going to be one hell of a day. We have 65 people coming in with appointments, plus we take walk-ins. We're going to be hopping all day.
The other day my manager told me that there's a man who's opening a franchise in the little town that's about 5 miles from where I live. He had approached my district manager looking for someone experienced who could help him out. She thought of me and talked to my manager about it. My manager think that this is a great opportunity that I shouldn't pass up on. I would be splitting my time between the new office and the one that I worked in last year. It sounds exciting, but I'm just not sure. I told my manager to have the district manager go ahead and pass my number on, that I would like to talk to him. I'm waiting to see if he calls, but I'm not holding my breath.
Now on to my personal life.
My mom saw the surgeon yesterday for a post op follow up from her gastric bypass. He thinks that the opening leading into her stomach is closing and that she needs surgery to reopen it. He wants her to get it done before she goes to Arkansas in a couple of weeks. Normally this is done as an outpatient procedure, but because of haw far away we live he wants mom to spend one night in the hospital. It sounds really simple, I just hope that my mom doesn't feel the need to complicate it.
Donny had an ultrasound of his abdomen done today. At the end of it the tech went and got the radiologist to come in and take a look at his portal vein. Apparently it's flowing backwards now. The radiologist said that when Donny had his last ultrasound done they had noticed that it would flow backwards intermittently, but now it's just flowing backwards all the time. How is that even possible? How does it not mess up the rest of the circulatory system for one part to flow the wrong way? And what does that mean overall? Is there anything that can be done about it? Is there any reason to even try? What now? I'm really freaked out about this, but I can't let on to Donny that I am. He gets really stressed really easily. If he knew how bad I was freaking out on the inside he would completely lose it.
Okay, I think that's all that's going on for now. That's enough for me.
Friday, November 14, 2008
My mom got a call on Friday or Saturday that her mom was really ill and in ICU. She was on 100% oxygen and still having a hard time with her breathing. Her heart wasn't doing well. She was in a coma. There was some confusion about whether or not the coma was drug induced. Getting a reliable report was difficult. The one thing that came through loud and clear was that grandma was not expected to survive.
On Tuesday my mom got a call that my aunt had decided to move grandma to hospice so that they could just administer comfort care. During that phone call she also said that the high school that 4 of her grandkids attend had a violent stabbing occur on campus that day. From what I've gathered it seems that a guy walked up to a girl in the hallway, grabbed her from behind, and slit her throat. One of my cousins walked into the hallway right afterward. He didn't see the actual crime, but he saw all the gore. That includes the girl laying on the floor screaming, saying that she was dying and begging for help. Because of this incident school was cancelled and my aunt had all 4 traumatized teens with her as she was dealing with taking her own mother off of life support.
Today my mom got the call that her mother has passed away. Even though we were expecting it this has hit my mom like a ton of bricks. She desperately wants to go for the funeral. Travel plans are in the works, but it's not as easy as jump in the car and go. A few weeks ago mom fell and hurt her back. Wednesday was the first time in a few weeks that mom even attempted driving. To make a trip of a couple thousand miles would require that she take some heavy duty pain killers. If mom takes the pain killers then she can't drive. If dad takes her out for the funeral it could possibly mess up my parents trip that they have planned for December. They're supposed to go see my sister and her kids, who none of us have seen in 4 and a half years. I'm supposed to start back to work tomorrow, so hopping in a car and going isn't as easy as it would seem.
And as all of this is happening I'm watching Donny get worse and worse and there's nothing that I can do about it. It's getting harder for him to breathe. He's sick to his stomach all the time. Hardly anything will stay down. He's had to start wearing diapers because of the incontinence issues. His legs are going out on him, he has a hard time standing or walking. I worry constantly about him. I wish that this could be easier, or more dignified. I often wonder just how much worse this is going to get. And how long can I continue to take care of him?
Okay, enough self pity, I need to go help mom pack.
Sunday, November 02, 2008
The trip to ER was actually rather uneventful. Mom had fallen, so they did an xray of her back, There was no damage to the bones, apparently it's a muscular injury. The only thing that happened that bothered me was that the triage nurse forgot to put a name band on my mom. She got the red band for allergies, and a pink and white checked band that we culdn't figure out, but no name band. At first we thought that the number on the checked band might be a replacement, but everybody else coming out of triage had it and a nae band. (They actuall had name bands on each wrist.) The nurse in back noticed the mistake and put a name band on my mom's left wrist.
Other than that, things have been pretty normal around here. Donny's still sick, I'm still dealing with it to the best of my abilities. I had my job interview for tax season and it went amazingly well. During offseason a random sampling of clients were called and asked to do a quality control survey. The highest rating that could be given was a 4, and I got an average of 3.3. The other numbers that my district manager went over with me were high as well. It was a really great interview and I'm looking forward to going back to work. I applied to return to work early, so I should be starting in a couple of weeks.
I wold writ mor, but this keyboard is possessed. It keeps skipping letters that I'm typing and randomly inserting letters or numbers in a long string, like the button is stuck. A new keyboard has been ordered, so hopefully it will be here soon
Friday, October 17, 2008
I took this class because I'm expecting to see several people with foreclosures come into our office. The way that things have been going I think that it's a safe bet. I was talking to a preparer with 18 years of experience and this was a lot for her. When I told her that I'm headed in to my second tax season she said, "So this class is over your head, huh?" And that's about how I feel. And the fact that the instructor crammed 3 hours worth of material into 2 hours just made it worse.
To help me get through class my friend, Michelle, bought me a couple bottles of coke. The caffeine and the sugar seemed like a good idea at the time. Now it's 3:00 in the morning and I can't get to sleep. This wouldn't be such a problem, but I have class at 9:00, which means leaving at 8:00. So I need to get up in 4 hours, and I can't go to sleep. This is going to kill me.
Sunday, October 05, 2008
The problem hasn't been not having anything to say, it's been not wanting to say it. I've been having an identity crisis and I haven't wanted to talk about it. Since this is the place where I promised myself that I would always be honest, I've avoided it like the plague.
I think that I've got a handle on the identity crisis now, but it's still not something that I want to put out there for anybody to read. I've had to be honest enough with myself to admit that there are some things that are too personal to put in writing. This is why I never kept a diary as a teenager. Because seiously, that would have been my sister's favorite book to read, no matter how well I thought I had it hidden.
The problem with having an identity crisis is that it'll throw the most level person into a depression. When you're already battling depression, it throws you into pits of despair. I know that I've talked before about the fact that I battle depression, but I often wonder if anybody who doesn't deal with clinical depression can really understand what it's like. The black cloud, the fog, the lack of any drive to do anything. The way that the simplest task seems overwhelming. And then there's the toll that it takes on your family. It's really more than I could ever hope to acurately describe.
The fact that I'm back gives me hope. I'm returning to the land of the living. Of course, I'm not cured, there'll always be that battle. But for the moment I appear to be winning. And for the moment, that's enough.
Friday, September 12, 2008
Michelle has 2 older children from a previous marriage, both of whom I'm allowed to talk about all I want. (They're old enough to make that decision for themselves and they don't have that paranoia.) Michael was a late(r) in life surprise. Michelle's the boyfriend (now husband) had been told that he was unable to father children, so imagine their surprise when they got the news. So now her kids are 19, 17 (18 in November) and 3. Although I love all 3 children, Michael has a special place in my heart.
The day that Michael was born I went to the hospital and sat there and held him for about 3 hours. Ever since that day that child has had me wrapped around his little finger, and he knows it. If Michael wants a treat he'll come ask me. If he wants somebody to play with, I'm the one he looks for. There was a new couple at our church that confided in me that they'd been attending the church for a few weeks before they figured out that Michael's not my son. In fact, they only figured it out when they heard him call me "Uncle Jamie". (Don't ask, he's a little confused about titles, but I think it's cute.)
A couple days ago my mom was talking to Michelle on the phone, so I had her ask if Michael could come play. I had been missing him and I thought that Michelle could use the break. When Michael got here I was in the process of making soup for my mom, so he had me put him in his spot, and he helped me cook. (Michael and I have been cooking together since he was 1.) He put the carrots in the soup, and helped me stir. At one point he looked at me and started asking for something, but I couldn't understand him. I took him into the living room and had him repeat it to his mom, but she didn't have a clue either. Finally my mom told me that he wanted the garlic. Michelle was amazed that he even knew what garlic was, since she doesn't let him cook at home. (Quick tip: put an appropriate amount of spice into a small bowl and let the kid dump that in. About a year ago I had some eggs that taught me that lesson in a way that I'll never forget.)
Pretty soon we were done making soup, but we weren't ready to be done cooking. So I grabbed a cake mix out of the cupboard and we baked a cake together. Cakes mixes are great at his age because they go together quick, but you still get to crack eggs. (Just a tip: crack the egg into a separate bowl, that way it's easier to pick the shell out.) Michael surprised me with his egg cracking expertise, there was no shell to pick out. We took turns mixing the batter, but I couldn't convince the boy to try licking the spoon. Strange child.
Once the cake was in the oven Michael was ready to play for a while. He wanted to go out back, but needed an adult to go with him. Because Michael's developed a habit of referring to himself in the first person we've been making a point of trying to get him to use the word I. So when he came to me and said, "Michael needs to play outside." I told him to say, "I need to play outside. That's when the child gave me a funny look and said, "Uncle Jamie needs to play outside." I gave up and just went out back with him. On the way he stopped and kicked his mom out of the house. He definitely does not have separation anxiety issues.
We got done playing in the backyard just in time to pull the cake out of the oven. That's when Micchael decided to go visit Uncle Moo-Moo (Donny). Out to the garage he went, where he climbed up in my chair and settled in for a visit with his uncle. Of course Donny immediately switched the Tv over to cartoons for the kid, and then started looking for the candy that I had told him earlier not to give to Michael. (By this time we'd already had a popsicle, since he knows that I always have some in my freezer for him.)
When Michael finally got done visiting with Uncle Moo-Moo he decided that he wanted to cook some more. Since we had made a lemon cake earlier, I decided that a lemon icing would be a good thing. I put Michael up on the counter and grabbed a bag of powdered sugar. I turned to grab the milk, and when I turned back to where Michael was, he had poured powdered sugar in a frying pan that was sitting on the stove. That would have been a lot less messy if there hadn't been a thin layer of oil on the bottom of the pan. So we got the icing started, and I realized that I needed more powdered sugar. This wasn't a problem, since my grandma keeps a big plastic tub of it on the buffet. There's also a big plastic tub of flour over there, so when I opened the tub up I tasted the contents to be sure that I had the right thing. Michael saw this and asked if he could taste too. Since I knew he would be going home soon I saw no harm in this and let him. I then got him a small measuring cup and got him busy scooping sugar into the bowl for me. He also got a lesson in how to work a Kitchen Aid mixer. (The first lesson being never, ever stick your hand in the bowl.) Of course, by the end of our icing making he had given up all pretense of putting sugar in the bowl, and was simply sitting there eating straight powdered sugar and telling me how good it was.
We iced the cake, something else that I realized he had never done before. I had handed him the knife (a butterknife) so that he could do it before I learned this important tidbit. He got a lesson in why using the knife to gouge out chunks of cake is not the accepted norm for icing a cake. It was my turn to do the icing again when I had to teach him why randomely sticking your fingers into the cake to make holes also is not the accepted norm for icing a cake.
When Michelle came to pick Michael up she got a wired little boy and a cake for their dessert that night. We had a ball.
Monday, September 08, 2008
Donny finally decided that he'd rather get some baseball cards and a baseball card magazine than go out and celebrate, so we headed to WalMart. I have to admit to being relieved, since I really didn't want to go out either. I ended up buying a big jug of orange juice while we were at the store. We then went back to our room and I laid in bed and drank orage juice. (Anybody who knows me knows that this is a bad sign, since I hate orange juice, but crave it like mad when I'm sick.) I drank almost half a gallon of ornge juice before I finally passed out. The day had finally caught up with me.
The next few days were spent visiting my mom in the morning, going to the room for a nap in the afternoon, and then back to the hospital in the evening. For the first couple of days mom did really good. She was progressing as expected and all seemed to be well, she was due to be discharged from the hospital on Thursday.
Thursday morning my mom started having severe pain. It was in her lower right abdomen, and the cramps were worse than giving birth to a 10 pound baby. (Yes, I was huge.) Because of the placement the doctor was baffled as to what the cause could be. He decided to give it a day and see how she was doing. In the meantime though she was recieving 4mg of morphine by IV every 1/2 hour, along with her liquuid lortab. They finally figured out that if they gave her both medications at the same time she'd actually get the pain controlled enough to sleep for a little while.
On Friday morning I arrived at the hospital at 7:00 a.m. to make sure that I didn't miss seeing the doctor. He talked to my mom and when she told him that the pain wasn't getting any better he decided to run a few more tests. He did a urine test looking for a UTI. He tested the stuff coming out of the drainage tube in her stomach to make sure that there wasn't too much of something in it, I can't remember what he was looking for now. And he ordered a CT scan to see if they could see the problem that way.
Around lunchtime the hospital called the doctor at his office and gave him the results of all the tests that had been run. He hopped in his car and drove across town to come deal with the problem immediately. Apparently mom's drainage tube had slipped down and that was the cause of all the pain. The doctor came in and removed himself because he wanted to be sure that removing it really did alleviate the pain. My mom said that immediately she felt better. She still had the soreness expected after surgery, but nothing like before.
Mom was kept one more night in the hospital, just to make sure that all was well again, and then she was finally allowed to come home. Even with all the pain she still says that it's worth it.
Sunday, September 07, 2008
Grandma and I both got up and dressed, and we were off. Mom was to arrive at the hospital at 6:00 a.m., and we wanted to meet her there. As we were pulling into the parking lot I realized that since I had left my cell phone with Donny I had no way to know where to find my parents. My solution was to drive around the parking lot looking for their car, and then use that entrance. I was hoping for signs leading to the surgical waiting room once we got inside.
That hospital has a big circular drive thing that leads to the main doors, and as we were going through it we happened to see my parents through a window. I zipped back around the drive, put the car in park and jumped out. By the time that I got in the front doors I managed to get a glimpse of my parents turning a corner. I went running after them, but they had a good start. I finally started hollering down the hallway to get my dad's attention. Of course, he just glanced back, and kept right on going. He figured if I followed him I'd find them. He had no clue that I was illegally parked and desperately trying to get back to my car. I finally hollered out that I had no clue where he was going. He turned and told me that they were there, so I turned and ran the other way. As I got to the front door I ran into my grandma, who had just made it inside. I pointed her in the right direction, and then went out to my car that was hanging open with the engine running.
After I parked I went in and the waiting began. Only one person was allowed in with my mom at that point, so we sat in the waiting room and tried to entertain ourselves. My dad finally came out and let us know that mom was showering with some special soap and then we could go see her. So then it was time to wait and try to entertain mom.
About 7:45 mom went to surgery, and we all decided to go to the cafe for some breakfast. Except the cafe doesn't open until 8:30. We sat and waited. We waited and sat. Somewhere in there we finally got some breakfast. Around 11:00 the doctor came out and let us know that surgery had been successful. He said that he was able to do it laproscopically, but because of her weight he had to use more pressure than he had thought would be required. Of course I didn't think to ask him to explain that remark, but I'm guessing that he's referring to the air that they had to put in her abdomen to make it possible to work in there. We were told that she'd be in recovery for about 2 hours and then she would go to her room, and that we couldn't see her until she got to her room. I suggested that we all go back to my motel room to wait, and we could have sandwiches for lunch while we were there. My dad didn't want to leave the hospital though, so it was just our family friend that was there and myself who went back.
Around 1:00 we went to see my mom and she looked pretty good.Some other friends of the family were there to see my mom, so her room was pretty full, and I couldn't really get over by her to see her though. I ended up taking their 3 year old son out to see the fishies (in the fountain in the main lobby) and try to let things settle down. I went back to my mom's room to return the kid and try to see my mom. Within 60 seconds of arriving at her room my dad handed me his cell phone and said that I needed to call my sister back. It was suggested that if I went to the seating area around the corner I might be able to hear better. As I hung up the phone from talking to my sister Donny came and found me to let me know that he was tired and needed to go back to the motel. So I finally got close enough to kiss my mom, and we left.
Saturday, September 06, 2008
We got about a haslf hour down the road before stopping for breakfast. I got grandma inside and seated at the table, and there was no Donny. He was still out at the car, for reasons that I still don't understand. I finally got him inside and we were able to have a good breakfast.
We got to the hotel around noon and I swore that I would never travel with both Donny and my grandma again. (She took her hearing aids out so that she wouldn't have to listen to him, so he got louder. She still couldn't understand what he said, so he made me repeat it. They get along great, and they love to harass each other, but I don't want to be a part of it.) I unloaded the car and got the 3 icechests arranged.
Before going over it had been decided that Monday night the family would all have dinner together. Because my mom had to take some medicine to clean her out for surgery the next day it was decided that dinner would be a picnic in my parents room. We arrived and I grabbed the bin that had all the non-perishable food in it. I lug it into my parents room and my mom tells me that she's feeling better so we're going to a park instead. So I lug the bin back out to the car and make sure that mny dad understands that a long hike to the picnic table is not a good idea. My dad had looked on the computer and saw that there was a park across the street, and the picture even showed a picnic table. We drive around to where the park is supposed to be, to find a smally grassy strip on the side of the road with a picnic table. It was not all it was cracked up to be, so we dicide to go somewhere else. After following my dad around Monterey for a half hour (listenin to Donny whine about needing a bathroom the whole time) he finally finds a little park and stops. It was lovely, with lots of families with toddlers and preschool age children bringing their kids there to play. We settled in and had a great time.
After dinner we needed to go to my grandma's bank, and I wanted to find the hospital while it was still light out, so that there would be no problems in the morning. I had my dad look the bank up on his computer, and he gave me directions and an address. I then had him give me directions to the hospital, and we were on our way. I decided to go to the hospital first, and then we'd swing by the bank on our way back to the motel. Driving down the freeway I started looking for the exit that I had been told to take. I saw the name of the street that I remebered from the map and so I got off the freeway. I found it a little odd that there was no sign saying that there was a hospital at this exit, but I thought that I migh have missed it. That was just a fleeting thought though, because I wasn't all the way down the exit when I realized that I'd made a mistake. I wanted exit 399A and this was exit 399C. Oops. So i went to the shopping center that was right there and turned around to get back on the freeway and try again. The only problem was that there was no on ramp going the way that I wanted to go. Of course, right after you go under the freeway there the road turns into a winding mountain road with no good place to turn around. So now we're driving through the foothills, no idea where we are or where we're going, when I realize that the road has become a road that I recognize the name of. I still don't know where we are or where we're going, but I've gained a llittle confidence that if I stay on that road we'll get unlost eventually. And we did. When we found the freeway again Donny wouldn't let me try again at finding the hospital. Instead we went to the bank and then to the motel. We needed to get to bed early because we had to get before the sun the next day.
Sunday, August 31, 2008
So I'm going through all the bins in the garage, looking for the one that'll be easiest to empty, when I come across a bin of clothes. Not neatly folded, let's store these until we need them, clothes. No, I'm talking about haphazardly, gotta get these out of here, tossed in clothes. So I take the bin in and add the clothes to my laundry. Now I haver the bin I need, but I'm curious. So I go out and look around some more. After the third bin that I found like that I decided to quit looking. I did laundry all day long, and still had 2 loads left to deal with today. And when I say that I did laundry all day, I mean that as soon as the machines were done I was rotating laundry. Thank God we have large capacity machines, otherwise I'd never get done.
Tuesday, August 26, 2008
The whole family is going down on the first. That night we're having a picnic on the beach to celebrate. (Of course, mom can only have clear liquids that day, so no picnic food for her.) I'm taking sandwich fixings and pasta salad, and maybe some fruit. A friend of ours who's going to be in the area that week is joining us for the picnic. It should be a nice little party.
The next day we have to be up bright and early since mom's scheduled to go into surgery at 7:30 a.m. We haven't been told what time to arrive, but I would guess somewhere between 5:30 and 6:30. (This is why we're not waiting to that day to drive over.) After mom comes out of surgery and we know that all went well I'm leaving the hospital to take Donny to celebrate his birthday. My dad will stay there until sometime in the evening, and then he's coming home.
Donny and I are staying in Monterey until my mom is discharged from the hospital. I told my mom that there was no way that I was going to have her laying in the hospital without any family near by to help her. I can't handle that.
The biggest problem in all of this is paying for a trip to Monterey. Even with finding a p;lace to stay that only $50 a night we're still looking at about $200 for a room. Which is why I'll be packing an ice chest with food. We simply can't afford to eat out, so we're doing this the redneck way. Not only am I bringing food, but there's dishes to consider. And Donny's bringing the toaster oven so that we can cook. Which means we need to take dishes for cooking. And don't forget the potholders. And dishsoap, a week without it is an awful thought.
And all of this is why packing feels like we're moving. I may feel like a redneck, but there's absolutely no way that my mom is getting left in a hospital with no family there for her. Not on my watch.
Sunday, August 17, 2008
Early in July a some friends of ours were finalizing the purchase of their home. It was supposed to be finalized mid-May, but one problem after another held things up. They were due to sign final papers on a Monday, so the Friday before they were given the keys so that they could start painting. Technically they shouldn't have been in the house, but it had taken so long that everyone decided to look the other way and let them get going.
A friend of my mom, who happened to have nothing to do, volunteered to help with the painting. He didn't know the friends who were moving, but he wanted something to do. On Sunday morning he was on top of a ladder doing a very high wall when it went out from under him. This of course translated to a nice long ride to the ER in an ambulance. My mom went with him since she was the one who knew him.
That Sunday afternoon I talked to my mom and it was decided that I would go sit at the hospital witth her. Mostly I was worried that my mom wasn't taking care of herself, so I went to make sure that she was okay. Because the fall had happened fairly earlky in the morning it ended up being that neither mom nor Bob had eaten anything all day. I arrived around dinner time and brought them tuna sandwiches. I stayed until Bob was settled in a room and my mom was ready to leave.
When all was said and done, Bob ended up having surgery on his knee, and will need a follow up surgery in a couple of months. Because of Bob's living situation he wasn't able to go home from the hospital. (Upstairs apartment, a tall bed that requires a running leap for an average height adult to get into, nobody there to care for him, knee immobilizer, etc.) Because Bob is from England there was no family for him to go to. This is why Bob ended up staying with us.
From the time that Bob arrived in our home Donny was jealous of him. I actually had several arguments with Donny about the jealousy. I saw no harm in the fact that Bob seemed to enjoy talking to me, and I didn't see what Donny was talking about when he said that Bob was interested in me. (Just to make things clear, it's not like I'm a supermodel who normally has men falling at her feet. In fact, I'm not even a regular model.) Bob would come sit with me and talk, but that seemed normal to me.
Then things started getting wierd. Bob started talking a lot about wanting a relationship, and how good he would be to a woman. He also started telling me how much he wants more kids, even though I had previously heard him say that he doesn't want more children. He seemed to be trying to manufacture ways to be alone with me. There was one night that he seemed to be trying to maneuver things so that he and I would wind up going to dinner, just the 2 of us. There was the time that Donny was telling me about something that had happened to him that day, and he got rather loud in the process. Bob came out to the garage where we were to tell Donny not to yell at me. (Nevermind the fact that Donny wasn't yelling at me, or that it's not Bob's place to get in the middle of how Donny and I handle our relationship.) And then there were the times that he'd pull me aside to tell me how badly Donny's treating me and how I deserve so much more. (That may be true, but it was just awkward coming from him.) It finally got bad enough that I asked my mom to help me work things so that I wouldn't be alone with Bob anymore.
Interspersed with all this drama that involved me was more drama between Bob and Donny that I wasn't a part of. A few weeks back Donny got a couple of boxes of patches to help him quit smoking. The only problem was that once he got them he decided that he wasn't ready to quit. Bob was aware that Donny had gotten the patches, and took it upon himself to consistently bug Donny about using them. His way of doing so was to ask Donny about in a tone of voice that left you with no doubt that he knew the answer to the question and was only asking to rub it in. It was just strange. He also took to making snide comments about Donny's personal hygeine. (When Donny's not doing well he gets bad about it, but nobody wants to hear the snide comments, especially in their own home.)
Things just got progressively worse, until it hit the point that Donny and I were staying in our room or in the garage all the time. Separating Donny from Bob was all I could do to keep the problems from getting worse. By this time other problems had come up that caused the arrangement to be that Bob was staying with the friends who he had been painting for at night and coming to our house during the day. I stayed away from Bob when he was at our house because I simply couldn't deal with what was going on with him, and it helped keep Donny calm.
Last Wednesday afternoon Bob was taking a nap in my grandma's bedroom, and Donny was asleep in the garage. When Donny woke up he came into the house and spent some time with me in our bedroom. We were having a good day and when he stepped out of our room he was in a good mood. The next thing I knew he was yelling at Bob in the living room. I went and got Donny and took him to the garage to calm him down and find out what happened. Apparently, Bob had told Donny that he had been trying to nap and asked him not to slam the garage door. (The garage door automatically closes behind you, and it slams if you don't catch it.) Donny was livid tthat this guy was now "ordering him around in his own home". I got Donny calmed down enough for me to go deal with the problem, and went to talk to my mom to ask for ideas on the best way of handling it. I was still in my mom's room when I heard Donny come in the house and head for the restroom. I stepped into the hall in time to hear Bob ask Donny if he had calmed down yet. I was almost to the living room when I saw Donny kick the back of Bob's chair. I got to him before he could hit Bob.
This was the point at which I grabbed Donny and told him to get in the car. I had no idea about a long term solution, I just knew that I had to separate the two men before things got any worse. I can't afford to bail Donny out of jail right now. We went for a long drive that ended up being an adventure in and of itself. The evening ended on a good note, we really enjoyed the time that we spent together that evening. Bob has not been back to our house since then, but there's nothing decided about possible future visits. He is a friend of my parents after all.
I summed this up to my mom by saying, "Those two are like a couple of dogs marking their territory. Which would be kind of funny if I weren't the fire hydrant."
Monday, August 11, 2008
Donny's health seems to be even more iffy than usual lately. I'm not sure if there's something going on underneath the surface, or if this is his new good. Two weeks ago I had to take Donny to the doctor for pneumonia. Last week I had him in for his regular monthly appointment. Tomorrow I'm taking him in for a suspected baldder or urinary tract infection. His overall health seems to be worse than normal, but there's no specific symptoms that I can report to a doctor. .
I will, however, be letting the doctor know about him passing out yesterday. We had gone for a drive, and Donny was really relaxed and seemed to be enjoying himself. All of a sudden he passed out. I had my hand on his knee and he just slumped forward across my arm. So I'm doing 60 down a backroad, trying to slow down and pull over, while using one arm to get Donny upright so that I can make sure that he's breathing. It took about 4 tries, but I finally got him pushed into an upright position. The jolt of flopping back brought him to, and he seemed okay after a minute. I have no idea what caused it, but it sure scared me.
When Donny saw his doctor last week I was talking to him about Donny's insurance and about medications, which caused me to come home and look at all his medicines again. That's when I discovered that, without telling us, the doctor cut one of his medicines in half, but wrote the prescription for a 2 month supply. Since I got the same amount, I didn't look at what the label on the bottle said. For almost a month I gave him the same dose as always. I'm frustrated that nothing was said because it caused a problem with having enough pills. Fortunately, the doctor's office is going to give us samples to get Donny through until his next refill.
Next month Donny goes on Medicare. It's good, because it should open doors for seeing specialists, but it's bad because it's going to mess with his medicines again. Since he's getting the part D prescription coverage I'm going to have to figure out what's covered under the nerw formulary so that we know what's going to need changed. It's all such a pain to keep track of, but if I don't do it then there'll be an even bigger headache when it's time to fill prescriptions again.
I get so tired of having to be an advocate. There is so much that I simply don't understand about healthcare that I feel like I'm constantly about three steps behind. I hate that feeling, but if I don't do it, then who will? It's up to me to make sure that Donny is getting the care that he needs, but I often feel like I don't have a clue about what he needs. Should I be fighting to get him in to a GI doc who can see him more than once every 6 months? Is there such a thing as a lung specialist? And if so, should I be asking for a referral? Should I be asking for a liver biopsy to be done? Does it matter? Should I be pushing to get him a prescription for a rescue inhaler that makes it so he doesn't run out long before the next one is due? Should I be getting the doctor to teach Donny better management of the rescue inhaler he has? There arte always way more questions than answers.
Sunday, August 03, 2008
I've been finding it true a lot lately that I'm more relaxed and enjoy myself more when Donny's not with me. I feel guilty because I shouldn't be that way with my husband. In fact, because he's so ill I should be treasuring every moment that I have with him, but I don't. In fact, I sometimes dread the time that we spend together. I look for excuses to not be with him.
The hardest part is that I don't like being with him because he's not the man that I married. Gone is the loving husband who did his best to put me first. Gone is the man that I could spend hours talking to without running out of anything to say. Gone is my confidant who never judged me, no matter what I told him. Now I have a selfish, hateful man living with me. If I'm not careful about what I tell him he'll use what I say to put me down. My needs are no longer a priority, his needs and wants always come first. If I don't watch my step he'll tell me what an awful wife I am.
The worst part is that I'm starting to believe him.
Tuesday, July 29, 2008
Add to that bit of drama the fact that I'm pretty sure that Donny has pneumonia again. His breathing sounds awful and his cough is horrible. He's making that crackling noise that grosses me out when he breathes. And when he coughs you can actually hear the gunk in his lungs chanting, "Hell no! We won't go!" (Okay, the chanting is a bit of an exagerration, but the rest of it's true.) All of that to say, I want Donny checked by a doctor. If it's nothing then I want a doctor to say so, because it doesn't sound like nothing to me. But the problem is that Donny's convinced that he has pneumonia, which always translates to a stay in the hospital. And if Donny stays in the hospital then I'm home with Bob without Donny. Never mind trusting me, never mind the fact that my parents and grandma are here, in his mind I'll be alone with Bob. And so his jealousy causes him to refuse medical treatment.
However, Donny still expects the same kind of care that he would get at the hospital. I'm to be his 'round the clock nurse. And since he's my only patient he's to get my complete, undivided attention at all times. I am to follow him everywhere, only leaving his side for 60 second potty breaks or to run fetch something for him. The only problem is that I've never wanted to be a nurse. (Nothing against it, I just wouldn't make a good nurse.)
A few days ago my mom started asking about untraceable poisons and I couldn't help but wonder, who is it for? Right now I'm pretty sure that Donny's at the top of everybody's hit list, but you never know.
Thursday, July 17, 2008
There was a tape that my mom owned when I was a teenager that a couple of fun songs on it that the whole family enjoyed. There are a lot of great memories assosciated with that music. As seems to always happen, somewhere along the line the tape got lost. At first we said that it had to be around somewhere, and then eventually we forgot about it for a while. But after a bit something sparked the memory, and all hope of finding our tape was gone.
The truly unfortunate thing was that we couldn't remember the name of the tape or of the group that did it. Without those 2 key pieces of information it can be very difficult to find what you're after. Sporadically we would search music stores, but that became less and less often. We really had no hope of ever finding that tape again.
And then early this week I went looking for something else. There's a song that's kind of been the family anthem that I decided to find online. After I showed the youtube clip of it to my mom and dad I made a comment about how you can find anything online. That's when I was challenged to find a copy of the missing tape. And so the search was on.
I was getting frustrated at my inability to locate anything and went to vent to my mom about it. She had been using what she could remember to do her own search and suggested that I take a look at what she had. There were several dead ends, but then I found an article about a group that sounded promising. They had changed their name, but under their old name they had released an album under their own record label. They didn't keep using that label, since a bigger label picked them up, so that record company is now gone. It really sounded like it might be them, I just needed to find a way to contact them.
Two nights ago I finally found it. They have a myspace page that I was able to find. I emailed them and described what I was looking for and why, and asked if it had been their project. I also asked that if it was theirs, would they please let me know how to buy a copy.
Last night I got a reply saying that my request was rather unique and if I would send them my address they would send me a copy of the CD that I was looking for. So I sent my address right away, and this morning I got a note letting me know that my CD had been mailed. And all of that was free of charge. I am so excited!
Last Sunday saw me sitting at a hospital with my mom and one of her friends after he fell off of a ladder. On Monday Bob had surgery on his knee, and he'll need another surgery in about 3 months. There's a whole lot of damage to his knee and it's extremely painful. He came through surgery great and is in the process of recovery. Yesterday Bob was released from the hospital, but was unable to go home. (Living in an upstairs apartment and a hostile environment combined to ensure that it would be a bad idea.) So for now Bob is staying with us. He's a really nice guy and I enjoy trading insults with him, so this is no hardship.
On Monday my mother-in-law was moved to a nursing home. She needs a few days in there to get really good at walking before she can go home. She seems to be doing well and making progress on her recovery as well. We haven't been up to see her in a few days because Donny hasn't felt well enough to ride into town. We've tried to call and check in with her, but we have a hard time getting an answer on her phone. We check in with Terry every few days, but I have to admit that I'm not real diligent about it. I feel that mom's being well cared for, so I don't worry about her.
Today has been a good day. I've stayed home all day and enjoyed relaxing. It's my birthday, so grandma's boyfriend bought everybody pizza for lunch. Tonight my parents are taking the family to dinner at the Thai restaraunt to celebrate. My Uncle Doug made me a lemon cake with lemon cream cheese frosting. Bob has generously offered to pay for my mom and I to go see Mama Mia when it comes out as my birthday present. By husband gave me a box full of teddy bears, and my 3 year old nephew came by today to give me a present that he made for me at preschool. I am very spoiled, and very well loved.
Tuesday, July 15, 2008
I saw this on Mielikki's blog and thought that it would be fun to try.
Here then, are the questions, with my answers in parenthesis, and explainations, if needed!
1. Your first name (Jamie, and do you know how many pictures of Jamie Lynn Spears are out there?)
2. Favorite food? (pasta, for today at least)
3. What High School did you attend? (North Salinas High School was the first one I attended, this guy is their mascot)
4. Favorite color (yellow)
5. Celebrity crush? (Winnie the Pooh always has been and always will be my hero)
6. Favorite drink? (root beer)
7. Dream vacation? (Ireland came to mind first, although I really want to travel all over Europe)
8. favorite dessert? (Chocolate)
9. What do you want to be when I grow up? (happy)
10. What do you love most in life? (fammily)
11. One word to describe you? (caring)
12. Your blog name (Jamie's World)
Sunday, July 13, 2008
I got up at 8:30 this morning planning to go to church, get a little work done, and then go visit mom in the hospital. After church Donny called me and asked me to come home before doing my work. When I got here he let me know that Bob, a friend of my parents, had fallen off a ladder and had to be taken to the hospital in an ambulance. He then had me call my sister-in-law, Terry, who told me not to drive all the way into town, to take a day and rest. So I went to work with the idea that afterward I'd go home and relax for the rest of the day.
The only problem with my plan was that my mom was at the hospital with Bob, and I was worried about her. I couldn't stop fretting about the fact that she might not be taking care of herself. I was finally able to talk to her and I convinced her that she needed me so that I had an excuse to go watch over her. But that meant that I was off to the hospital.
I took some food with me, since neither my mom nor Bob had eaten since breakfast. Bob was astounded when I pulled some tuna salad and a loaf of bread out of my backpack. Then came the fresh fruit, followed by some bottles of water. I also had my cross-stitching and a book with me. They both laughed about my level of preparedness for the ER, but they were grateful to get something to eat.
It turns out that Bob tore the ligament behind his knee, or something like that. He has to have surgery tomorrow to get the damage repaired. Then he'll be in the hospital for a few more days. Since they were admittiong Bob we decided that we should stay with him until he got settled in his room. The only bad thing is that he's at a different hospital than what Donny and his mom use, so I wasn't able to go check on mom while we waited.
At shift change the nurses hurried up and got Bob moved, to simplify giving report. As he was being wheeled into his room a nurse was passing by and she stopped, looked at me, and then came over and gave me a big hug. She asked if the patient was my dad, so I explained that he was just a friend of the family. She told me that she would be on until 11:00 and Bob would be one of her patients. After she walked away my mom asked me who she was and I had to admit that I didn't kbnow her name, just that she had been Donny's nurse previously. (He stayed in that hospital 1 time and decided that he likes the other one better.) My mom just laughed at the fact that every hospital that she goes to with me I wind up running into a nurse that remembers me and/or Donny.
I feel the need to add that the reason that this nurse remebers us is actually a good one. (For a change.) When Donny was staying at that hospital he had a very difficult roommate. The day that Donny went home his roommate got upset at breakfast time. He threw his tray hard enough that his cup dented the floor. The nurse that I ran into tonight came in and was trying to take care of this man and he started hitting and kicking her. Now, this kind of behavior is never okay, but this lady is only a few years from retirement, so it really got to Donny. Although the nurse hollared for help, no one came in. That's when Donny got up and helped this lady get away from the patient so that he couldn't hurt her. For that reason she absolutely loves Donny, and by extension, me. She's probably the only nurse in the area that actually likes Donny, but at least one does.
Today (or is it more accurate to say yesterday?) everybody went up to see mom right before surgery, around 11:30. A little after 12:00 the nurse let folks know that surgery had been bumped back to 3:00. At this point we were all getting a little tired of playing this game, since this was the third time that her surgery had been rescheduled. Around 3:00 my sister-in-law, Terry, called the hospital to see what was going on with mom. The nurses told her then that mom had not been taken for surgery yet, that it would be closer to 4:00. Around 4:45 Terry called again to check on mom and was told that they had just wheeled her down to surgery. At this point frustration levels were very high.
When it got close to time for mom to be coming out of surgery we went to the hospital to wait for mom to get done so that we could talk to the doctor. It was around 7:00 when he came out to let us know that he was done. He had a couple of xrays in his hand. He showed Terry the xrays and explained that because he was able to set the hip well with pins he decided not to do the hip replacement. He didn't want to put an 86 year old woman through such a traumatic surgery unnecessarily. He went on to explain that her origional xrays had been read by the radiologist as there being no sign of fracture. According to this doctor the other surgeon had come to him for help yesterday and that's when he had ordered the CT scan. Because it was late in the afternoon before the radiologist read the scan they had been unable to operate yesterday. He was a really nice guy, and he gave the 2 xrays of mom's hip to Terry. When Terry asked about the ever changing surgery schedule he said that he had changed mom's surgery to 4:00 when he came in at noon, because of an emergency surgery that he had to do. For some reason he also made a point of telling us about some piece of paper that mom's PCP had forgotten to sign, and that he had gotten another doctor to examine her and sign it. I walked away happy with the report that he had given us.
That happiness has faded as I've thought things over. I now have a couple of questions. If the other surgeon had asked for his help, and , according to this guy, was there when the CT scan was ordered, why did he seem so put out about it later? He really came across very strongly as seeing the CT scan as an unnecessary test. Also, why did the surgeon not discuss with us his decision to put pins in instead of the hip replacement? We had been told that while pins could be used, there was an increased risk of needing surgery in the future if they were used. Because of mom's age the other doctors had strongly recommended going ahead with hip replacement to avoid the risk of her needing another operation in the future. Shouldn't decisions like this at least involve the patient and her caregiver?
Now that I've had a few hours to think things over I'm really upset about how this surgeon handled things. There's a part of me that wants to accuse the surgeon of purposely getting mom bumped to today so that he would be the one doing her surgery, that way he could do it the way that he thought best. And maybe his way was best, I just think that he should have let us know that he was changing the plan before going ahead and doing the surgery. Especially since, from what he said, he knew when he walked into the operating room that he wasn't doing a hip replacement.
Wednesday, July 09, 2008
A little after 8:00 tonight I called the nurses station for her unit to check on how she was doing. Her nurse had just been in with her and seemed to think that she was rather amusing. Apparently my mother-in-law and her roommate decided that they want their pain medicine to be on the same schedule, that way they'll both get to sleep. Leave it to mom to think of organizing the schedules at the hospital. She is such a character.
My sister-in-law, who takes care of mom, did talk with mom's PCP for a few minutes today. He says that mom will probably be in the hospital for 3 or 4 days after surgery, and then will need to be in a nursing home for 2 or 3 weeks. He also said that we need to be aware that because of her age there is a 30% chance of complications, either before, during or after surgery. We are all well aware that old people with broken hips often don't recover well, but it seems that surgery really is the best option.
Please keep my mother-in-law in your prayers as she goes through this.
Ex-rays were done and it was discovered that mom has a broken hip. If it were me with the broken hip it wouldn't be such a big deal, but I've seen this be the top of the slippery slope for some elderly people. Tomorrow mom's supposed to have hip replacement surgery to repair the break. Recovery from that is going to take quite a while. I hope that mom has that much fight left in her.
I worry mostly because I'm not convinced that mom does have that much fight left in her. Several times lately mom has gone on and on to me about how she's tired of living, tired of burying loved ones, and she just wants to die. She doesn't want to outlive another child, and Donny seems intent on dying soon. I'm just not convinced that she'll try to recover, I believe that her lack of will to live is what's going to kill her.
Monday, July 07, 2008
It wasn't until I camped out in Donny's room on Tuesday, July 1, that I finally got to meet a doctor. A resident came in to see Donny that he hadn't seen before. One of the first things I did was point out that they were giving him too low a dose of lactulose. The doctor hadn't checked what dose he was on at home, so they gave him the standard dose of 2 tablespoons three times a day. The problem being that he needs 3-4 tablespoons three times a day. I had asked his nurse the day before to point this out to his doctor, but it hadn't been resolved. So the new doctor now feels the need to defend what the other doctor was doing, after a few minnutes we got it cleared up and the dosage was corrected.
The new doctor also was trying to discuss what was going on with us while tiptoeing around the fact that Donny was hallucinating in tghe ER. She said sometrhing about him being sleepy when he came in and I just looked at her and said, "No, he was hallucinating when we came in." She said something to the effect that she was trying to put it nicely. That's when I told her that we've dealt with the encaphalopathy enough times now that there's no more need to put things nicely and she could just be blunt with us. It wasn't until a few hours later that I realized it was her first day of residency. Poor lady. She really was just trying to be nice, I hope I didn't burst her bubble.
Today was Donny's follow up with his PCP. The doc said that all the tests that the hospital ran looked good. I asked him about what to do if the hospital won't keep Donny, but I didn't get an answer. The only thing that I got out of him was that if the ER doc wants to admit Donny and the resident won't then to ask for his attending. But what about if the ER doc says that Donny doesn't need to be hospitalized? And why am I borrowing trouble from gthe future? I suppose that if I ever feel backed into a corner I could try saying that I can't keep him safe at home. I don't know if it'll help, but I feel better if I tell myself that those are the magic words that mean that they have to help. It's not that I want to dump my husband on a poor, unsuspecting hospital, but I worry about not being able to care for him. I worry about a lot of things.
Sunday, June 29, 2008
And then a few days a go things got worse. On top of the cough Donny's mental function started to decline, he started hallucinating even worse. I kept on trying to treat him at home because I was afraid that the hospital would just send him home if I tried to take him in. Friday night things got really bad. Even then I was afraid that my last hope for help would turn me away, so I didn't take him in. I kept saying that if he wasn't better in the morning I'd take him in.
Around 10:00 on Friday night I was in the office when I smelled something burning. I decided to go investigate, but there was nothing cooking in the kitchen. So, following my nose, I went to the garage. I opened the door to discover that there was a considerable amount of smoke in the garage, and Donny was just sitting there. I hollered at Donny, since he was just sitting in the middle of all that, and then I went looking for the cause. It took me less than 10 seconds to realize that the microwave was running, and appeared to be the source of the smoke. When I opened it up, there sat my favorite mug, once full of coffee, now a smoky mess. It took 2 days of cleaning, but the mug is okay.
Donny obviously couldn't be trusted on his own, so I sat with him for quite a while. He was hallucinating really badly and was quite obviously out of it. Around 2:00 on Saturday morning my mom told me to go sleep, that she'd take a shift sitting with Donny. During this time he came in and tried to wake everybody up because he was sure that my grandma had said somebody had died and he couldn't remember who. He also woke me up to tell me that there were people in my car and I needed to go make them leave. There were a couple other times that he woke me up, but I can't remember what for. Around 5:00 my mom woke me up because she just couldn't deal with him anymore. He had left and had to be chased down the street 3 different times. At one point he had a lit cigarette that he was trying to put in his recliner. When my mom tried to take the cigarette away he hit her.
So yesterday morning I took Donny to the hospital. At 8:00 on a Saturday morning the ER isn't nearly as busy as I'm used to seeing. We waited for less than half an hour for triage, and he went straight to a bed from there. The ER staff wanted to know who had tested Donny's ammonia levels since I knew that they were high. I had to explain that I had said that, based on past experiences, I suspected high ammonia levels. That's when I got the sympathetic smile and understanding nod. It's a universal gesture that reeks of pity. What really shocked me was when his ammonia level came back at 64. That's barely elevated, it in no way is high enough to account for what was going on with his brain. But the ER did find pneumonia in the lower lobe of his right lung, so he was admitted for that. And I came home and slept.
So now we face the tough decisions. At what point can we no longer care for him at home? What resources are available if I can't keep him safe at home? At what point will the hospital take him? What do I do now?
Wednesday, June 25, 2008
Of course even if Donny does quit smoking he'll never quit drinking. I really thought that he would after the scare he got last year, but it only lasted about 6 months. Of course, the doctors don't know that, they all think that he's still on the wagon. I know that it's wrong to let Donny get away with lying to his doctor's, but if I speak up he simply won't allow me tyo talk to his doctors in the future, not to mention what it would do to our relationship. So I go on covering for him and hating myself for it.
And now, since he'd been back to drinking for a while when these tests were ran, he sees the bloodwork as proof that the drinking isn't really hurting him. There will be no convincing him otherwise. And since he sees the drinking as a nonissue it will just get worse. There are times when I wish that I had listened to my friend when she warned me not to marry him. Being married to an alcoholic is not easy.
The thting that I can't help wondering is if these tests could be misleading. I know what Donny's like day-to-day and I don't see how he could be in as good of shape as this doctor says. A few years ago Donny saw a doctor who told us that the numbers on the liver test don't really mean a whole lot. She said that somebody's tests could come back barely off and they could have severe liver damage, whereas somebody else's tests could come back way off and they could have barely any liver damage. She said that all the tests really told them was whether or not there was damage to the liver. But she was a resident, and no other doctor has said that, so I wonder if it's really true.
I also wonder if I should try to demand that a liver biopsy be done. One's never been done and I've been reading that it's the only way to have any definitive answers about what condition the liver's in. I asked about biopsy one time before and I think that I was told that they only do that if you're trying to get on the transplant list. I don't know if that's an insurance issue, standard practice, or erroneous thought. I'm just not sure. And of course I don't come up with all these questions until after his appointment, and he doesn't see the GI doc for another 6 months. I could ask his PCP, but I'm pretty sure that he'll tell me that I need to take it up with the GI doc. I'll probably ask the PCP anyway, because I find it easier to talk to him.
I wish that there was a handbook for liver disease. I wish that somebody could say that it starts at symptom A and in 6 months to a year progresses to symptom B. And then we'll see symptom C, which is an indicator that symptom D isn't too far off in the future. I do much better when I know what's coming. I need to know what to expect next so that I can prepare for it. When I look online I can find a list of symptoms, but does everybod always get all the symptoms? And at what point can you be fairly sure that you've skipped one? Does the fact that Donny hasn't had anymore problems with fluids draining off his liver mean that it's not going to happen? Because what he went through was very light compared to what we were told to expect for that. Or is that yet to come? Does the fact that it hasn't happened yet mean that I'm being overly dramatic in my assessment of how bad he is? I thought that the ammonia levels being this much of a problem was something that just happened at the end. Am I wrong? Where are all these answers? Why can't anybody tell me?
Friday, June 20, 2008
A few months before we got married Donny was at the doctor to get the results from some tests. The doctor had said that he thought that Donny might have testicular cancer, so we were rather worried. The doctor came in and let us know that there was no sign of cancer, but the news wasn't good. That's when we were told that Donny had cirrhosis of the liver. The doctor then asked us how long until the wedding. I told him a few months and he looked at me and said, "You'll have a very short marriage." I don't think that he thought we would make it this far.
The road has been very rough, and there were times that I thought we wouldn't make it, but the journey is worth it. Donny's a pain and hard to live with. He's also the most giving person that I've ever met. And you couldn't ask for a more loving husband. He has an odd sense of humor, but he loves to laugh. And if you want to tug on his heartstrings just mention a child or a senior citizen. He would rather go without his mostg basic needs than see a child in want. He has got the biggest heart that I've ever seen.
That's why this disease is so hard. My husband is turning into a grinch. He sees less and less of the heartache, and the joy, in the world. He's become self-centered. He's downright mean at times. He pushes kids away and does his best to cut himself off from the world. A man who once was the male version of a social butterfly now avoids going into public because he doesn't want to talk to people. Even on a good day he doesn't want to sit around and shoot the shit with his buddies anymore. He just doesn't have the energy or the drive. This disease is taking my husband and leaving me with a stranger.
I often wonder if the doctor's understand what this is like for the families. Do they know the tightrope that we walk trying to carry out their orders? Donny is having visual hallucinations all the time now. (That, or he really does see ghosts.) His mind is clear otherwise and he takes his medicine like he's supposed to so I don't bother going to the doctor about it. What would he do? What could he do? I'm constantly on the edge trying to keep an eye on Donny and live my life. Do the doctors know what it's like when the patient goes home with you? I would ask if they care, but I know that my doctor does. I just think that he doesn't have a clue.
Donny needs me 24 hours a day 7 days a week. He needs somebody by his side monitoring his medicine. Not only do you have to make sure that he takes it, but you have to make sure that he doesn't take too much. And if anybody has stray pills laying around he'll take them to see if they help. He's a grown man and wants to be treated as such, but he often requires the same care that you would provide for a toddler, including picking him up when he falls.
I love my husband dearly, I just want him back.
Saturday, June 14, 2008
We've even learned to deal witgh the fact that mom is a bit of a hypochondriac. She's actually very healthy for her age. She has to take medicine for her blood pressure and her cholesterol, but in your late 80's that's pretty darn good. Her legs aren't quite as steady as they once were, so she needs to usa a cane when she walks. Still pretty good. She tires easier than she did when she was young, and she just doesn't have it in her to do as much as she once did, but still, for her age that seems pretty good to me. And yet she insists that there's medical problems that don't exist. She'll swear up and down that she had a stroke about 7 or 8 years ago, but it's not in her medical records. She says that she has heart problems, but the cardiologist can't find anything wrong. But all of this we can set aside as the behavior of an old lady who longs to be with her husband.
What I can't set aside is what my sister-in-law told me two weeks ago. Mom lives with her and we had gone to visit with gthem for the day. My sister-in-law and I got a chance to talk on our own and shye was venting some of her frustrations about living with her mother-in-law. (Randy and Terry inherited mom when Bobby, the oldest son, passed away. When Randy passed away mom continued to live with Terry.) Apparently mom has started to become mean, especially towards Nicki (Terry and Randy's daughter). I know of one time that mom yelled at Nicki for being mean to her dad before he died. Even if it were true, which it's not, that's not something that you say to a teenage girl who is devastated by the loss of her father. Terry told me that there have been several more episodes of mom verbally attacking Nicki. This is not at all acceptable as a livingt situation for my niece.
All of that is not what worries me the most though. Terry told me that although mom straightens and dusts her own room, Terry likes to go in and do a deeper cleaning every now and then. The last time that Terry did this she was working on the floors in the closet when she noticed a cardboard tube in the corner. When she went to move the tube it was wet, so she decided to look inside of it. That's when she realized that mom hadd been using the tube as a toilet. Terry discarded the tube and cleaned the carpet, then she put down some absorbent pads so that if mom had problems and needed to use that area it wouldn't get into the carpet. Terry also put absorbent pads under the throw rugs next to the bed in case of an accident. Then she decided to take the bedskirt off and launder it to get rid of dust. When she went to remove it where it was up against the night stand at the head of the bed she found that the bedskirt and the side of the nightstand were covered in feces. After cleaning that mess she put the room back together and made it obvious that she'd been in there hoping that mom would come talk to her about what she'd found, it didn't happen. Terry started checking the pads daily, but there was never a mess on them. However, mom has replaced the cardboard tube with a plastic one and continues to use it nightly. Terry knows this because she can hear mom empty it in the mornings, and has even peeked out her bedroom door a couple times to see mom carry it in there.
When mom moved in with Randy and Terry they put her in the room closest to the bathroom to trfy and make nighttime easier on her, it's less than 10 feet from her bedroom door to the bathroom door. If that's too much for her then Terry is willing to put a bedside potty chair in mom's room. The only problem is that she doesn't know how to approach mom about it without making her feel bad. I know my mother-in-law well enough to know that pride would stop her from admitting to needing it, and asking her about could actually make the problem worse. But in the meantime this is becomiong more of a problem than I feel it's righht to ask Terry to take on. I suggested that she talk to mom's doctor about it and see if there's something that he could suggest. I also told her that she should ask about getting mom tested for demetia, because it sure sounds to me like there might be a real medical problem under all of this. For Terry's sake I hope that she follows through with the doctor, that way we can come up with a plan for how to take care of mom without putting it all on Terry.
Friday, June 13, 2008
Donny did decide that I had finally gone over the edge though. The first place we went (besides the motel) was to our favorite beach. We parked in the parking lot and I got out to take pictures. (Donny didn't feel well so he rarely got out of the car at our stops.) Donny noticed a little plastic man that a child had set on a log and then left behind and he insisted that tghe little man should go with us, so he did. I have photographic evidence that he went with us. My loving husband thinks that it's certyifiably insane to take pictures of a little plastic man everywhere you go. If I remember I'll post some of them later.
Overall it was a fun trip and I'm glad we went. When we got home we found out that the AC went out today and the repairman can't get here until Tuesday. It's 10:30 at night and I'm sitting here with a fan blowing dirfectly on me, the window open, drinking a huge glass of icewater. It's almost bearable. And last night we had to run the heater. I wish I was back on the coast.
Saturday, June 07, 2008
The other benefits of small town life include being able to shop with my mom's credit card (since it's known that she regularly has me run errands for her). If I'm a little short when I go to pay for my purchase at the liquor store the owner will tell me to just give it to him next time. Last year the post office delivered a birthday card that just had my name and the city that I live in on the front, no street address. But my favorite part is the fact that I'm forever running in to people that I know when I'm out and about. I love that smile and quick chat inbetween errands, it really brightens the day.
Tuesday, June 03, 2008
So the schedule went something like this: On Thursday we spent the day getting the house ready for company. When Donny's friend arrived they went to another friend's house to hang out. That evening Doug and his girlfriend (the one from Washington) cooked a really good dinner for us. I had just finished eating and was enjoying visiting with Gracie when Donny called and asked me to come get him. I went over there and about an hour and a half later I convinced Donny that we should go home. By the time we got there Doug and Gracie had left. Of course, since Donny was hanging out with his drinking buddies he was rather drunk. A little after midnight I got him settled, and somewhere around 1:00 a.m. I got to bed.
Around 5:00 a.m. on Friday morning Donny woke me up to complain about how I don't do enough to take care of him. I was PISSED. This was not a good start to my day. I got Donny going and finally got him over to visit with his friends so that I was able to start my day. I ran to the grocery store because my mom had reminded me that I was to be in a chili cook off the next day. I got home and got my chili going, and then did some last minute stuff to the house to prepare for my dad's friends visiting. Of course this was all between Donny's calls to complain that I wasn't doing enough to take care of him. That afternoon I wrapped our gift for his friend's son who was graduating that evening, and I had the distinct pleasure of trying to figure out how to wrap the sword that our other friend was giving him. I went to pick Donny up to come home and get ready for graduation, only to find that he was in no shape to go. So I got myself ready and went alone. As I was leaving graduation tghe boy's mom told me that there was to be cake at her house in his honor and they'd like for me to be there. That was when I realized that I hadn't had time to eat all day. So after I grabbed a quick burger I went and had cake and then came home. By then Donny was up and wanting my attention. Somewhere around midnight I got him settled and went to bed.
Saturday morning I was up bright and early yet agaqin, but this time Donny was in a good mood. We went and grabbed some donuts and then went to his friend's house for a visit. I sat with them for a little while, but then I had to go to work and finish up the stuff that I was supposed to have finished the day before. That afternoon was the chili cook off. When I was ready to go I went to give Donny a kiss goodbye and found him lying on the floor. He had fallen, but he didn't seem to be hurt. I got him up and settled and then I took off. At the chili cook off I took second in the category of hotness and first in taste. Afterwards I came home and spent what was left of the evening trrying to pacify Donny.
Sunday I was finally able to relax. I went to church and then we went to visit my mother-in-law and my sister-in-law. I enjoy our time there so much, I really love going to visit. Because it's Donny's family I don't feel the need to act as a buffer between him and everybody else. I get to relax and enjoy visiting and I let his family deal with who he is. It's the most relaxing time that I have anymore.
That's my weekend in review, how was yours?
Tuesday, May 20, 2008
I need a little help here. Next month Donny and I are supposed to drive up to Lake Tahoe, spend the night, and then go on to Carson City. We're currently debating what route to take. We're looking at 80, 50, or 88. We're more interested in scenery and stuff to do on the way than we are in making good time. If anybody out there knows any of these routes I'd appreciate a little inside info.
This is not necessarily a trip that I'm looking forward to, but Donny has been begging to go for a long time. And his best friend, whom we're going to visit with, has offered to pay for our trip. He's even giving us a night in Tahoe to ourselves as an anniversary present. I had to agree to the trip sometime.
Sunday, May 18, 2008
I wish that I could write that Donny's doing well, but this is the one place where I try to force myself to be honest. This last week has been really hard. As his mind goes he becomes more and more hostile. He yells at me a lot and spends a lot of time telling me how bad of a job I do with taking care of him. I know in my head that it's the disease talking, but my heart still takes it hard.
It's worse because angry at him for being an ass, and then I feel guilty for getting angry at him. And there's always that part of me that says to just shut up and take it because he's sick and doesn't have a lot of time left. Talk about conflicting emotions.
The part of me that I try to deny exists wants to know just how much longer this is going to take. When things are really bad and he's yelling at me I find myself wishing for a guide that tells me how long this will last. Is this just a phase and things will improve again? From what I've read I think that it's just going to get worse. And how much worse will it get? Will he become physically abusive? And if a disease causes your husband to be abusive how much should you put up with? I normally have a zero tolerance policy when it comes to abuse, but what about when it's caused by a disease?
As I was writing this just now Donny woke up and came to get me. He's recently developed a problem with wetting the bed and I needed to change the bed again. Fortunately I have a lot of sheets and blankets. This time my sheets didn't even have a chance to get dirty from being slept on. I guess this means that I need to go get a plastic cover for the bed this week.
These are some of the issues that I'm wrestling with right now. My head is not a fun place to be. On top of everything that's going on with Donny there are always family problems as well. My mom's going through a tough time right now. I suspect that a new memory is about to surface and she could really benefit from some loving support from her daughter.
My sister, who lives in Arkansas, is getting a divorce. There's a part of me that wants to say it's about time, but she doesn't need to hear it. We've all seen this coming for a while now, but they did last longer than we thought they would. Her and her husband have been separated for a little while now, which is why I wasn't surprised to hear that she's already got the next husband picked out. My mom said that from what my sister says he sounds like a really nice guy, but I haven't talked to her about any of this yet. I know she could use a call from her sister, but I just don't have it in m e right now.
Right now my heart is breaking for my niece. She's really going through a tough time, and there's nothing that I can do to fix it. She's 18 and getting ready to graduate high school. We also recently found out that when she was 14 she was raped. Her attacker told her that if she told anyone he would kill her and her family, so she kept it a secret. She was only a 14 year old kid, but she had the presence of mind to take the city bus to a clinic and get a pregnancy test and tested for STDs. She even had follow up testing done. All of this only came out because her mom found out that she was behaving a little too wildly. My sister-in-law wrote my niece this long letter about how disappointed she was and how if her dad was still alive he'd be really disappointed too. (He died of cancer about a year and a half ago, when my niece was 16.) My niece wrote back to her mom and let her know what was going on. Because this niece is from Donny's side of the family I haven't known her long, which makes it hard for me to know how to help her. I really love her and I'm very worried about her. I just don't know what to do to help her. Please pray for her, it's all I know to do.
Okay, I think that just about covers all the garbage running through my mind right now. It's amazing how helpful it is to just write it all down.
Friday, May 02, 2008
These boys, no, men now, are the ones that I used to babysit. They're the ones who were like really annoying little brothers at one time. They're two sets of brothers, and I have a lot of great memories with them. Even if we haven't done a good job keeping in touch, I love them.
The one set of brothers were like little brothers when I was younger. They stayed with an aunt of ours for a while and when they lived with her family my family was there a lot too. I can remember being so annoyed at the little nerds who just wanted to be considered cool by the only other boy in the group. (Of course that meant declaring war on the girls.) We used to joke about if you set them loose on a town they would have it leveled in a few days. Now one of them is training to be a demolitions expert. I tease him mercilessly about how fitting the job is.
The other set of brothers are the ones that I remember babysitting when I was a teenager. They tried to convince me that a good game to play would be to tie me up and put me in the closet and then time how long it would take me to get out. (I never fell for that.) The youngest also tried to tell me that his mom fed him 5 pounds of sugar every night before putting him to bed. I can remember them deciding that it would be fun to start calling me mom when we were out in public. Even when we went to get icecream at the diner that my latest crush worked at. They loved to embarrass me. The youngest ended up guarding President Reagan's remains during the viewing at the rotunda. He's now somewhere in Africa. The oldest took a post closer to the front lines because he was put in charge of that camp (or whatever it's called).
I don't talk about them much, but I worry about them. It just doesn't seem possible that the little terrors are old enough to fight and die for our country. Please pray for our military members, they need it.