Sunday, June 29, 2008

A new kind of question.

It's been a long couple of days. Donny hasn't been doing well, and taking care of him has me feeling ran down. The air quality has been bad enough to really mess with Donny's breathing. A few days ago (probably a week or a week and a half ago) he started having a really bad cough. I'm talking about coughing so hard that it's hard to breathe, and it lastging for 15 - 20 minutes at a time. He would cough until he puked. It was awful. So I started giving him some cough syrup. It sometimes helped a little.

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

More Questions

Donny saw the GI doc yesterday. He said that Donny's bloodwork looked good. He also said that if Donny would take care of himself he could live for several more years. He talked a lot about the need for Donny to quit smoking. He talked to Donny about how the various systems in your body are all linked together and when one is doing poorly it puts additional strain on the others. It all made sense, but we'll see if Donny actually quits smoking.

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

Anniversaries & Tightropes

Yesterday was mine and Donny's fourth anniversary. In some ways it seems like the time has flown by, and in others it seems like we've lived a few lifetimes in that time. So much has happened in our lives that it doesn't seem possible that we've fit it all into four years.

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

My Mother-In-Law

I'm worried about my mother-in-law. Her mind has been slipping, but we've all shrugged it off as a sign of her age. She's in her late 80's, she had to start repeating her stories at some point. And the fact that she claims to have done just about every job imaginable seems harmless enough. It may be highly annoying to sit and listen to stories that you know aren't true, but we love her so we listen. All of that is stuff that's part of aging and something that we can deal with.

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 and I just got home from spending a couple days on the coast. We didn't do anything overly exciting, in fact, we slept the first day away. We saw some pretty scenery, went to a gorgeous park, and basked in the lack of anything to do. He had my undivided attention, so Donny was happy. I had no errands to run, no places to go, no people to see. It was wonderful!

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

Small Town Life

There are a lot of reasons that I love living in a small town. Tonight was just further proof of why it's so great. My parents went to dinner at our local Thai restaraunt. The food is great and the owners are really sweet people, so we eat there quite a bit. My mom was unable to finish her food so she asked for a container to take it home in. After they left the restaraunt they went to a friend's house for a couple of hours. On their way home my mom realized that she had forgotten her leftovers at the restaraunt. Since the restaraunt was closed already there was no way to go back and try to get them, even if they wanted to. When they got home they were surprised to find that my mom's leftovers had arrived before them. My parents payed with a credit card, so the owners had their name. They then looked the number up and called to get the address. Once my uncle gave them the address they had their busboy/dishwasher run the food over to our house. How many places offer that kind of service?

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


This last weekend has been crazy. On Thursday night we had dinner with a guest from Washington (state). That same day Donny's friend who lives in Nevada arrived. On Friday my daad's friend from Montana got into town. Thankfully, most of the visiting friends didn't expect to stay with us. If they had we would have had to start assigning sections of floor to people.

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?