Hey, all! I know I haven't posted in months, but I'm back! And this will be a kinda long post to make up for the time I've spent away. Happy Cinco de Mayo! I understand that doesn't really mean very much, but we have a fun Cinco de Mayo tree up at work, with chili pepper lights, and a margarita glass full of dark chocolate Hershey kisses. But Cinco de Mayo will always mean something to me. It's the day, back in 2002, when I nearly died.
Let me explain. On May 4, 2002, I had a class to go to for my job. It was an all-day class, and I had fun (pretty much). Several people from my base went to the class with me, and a good time was had by all. The class was about an hour and 15 minutes away from my home base, so we stopped for a few things on the way home. One of those things was food. Some of us ate, others didn't, and then we went on our way. We got back to base without incident, and went our separate ways.
I didn't feel all that well when I got to my house, but I figured it was because I was a bit wound up from the class. I'd been a little stressed over this particular class, and I imagined I hadn't really realized how stressed I'd been, and that was why my stomach wasn't feeling right. I had some antacid and felt a little better. Later I ate dinner, and it seems maybe I went to bed a little earlier than usual.
I woke at about 2:30 AM, needing to go to the bathroom. This was somewhat unusual for me, but you gotta do what you gotta do. I got back in bed and had just drifted off again when I realized I was quite nauseated. I ran back to the bathroom and threw up. That was the start of it. For the rest of the night, I was up about every 45 minutes, running back and forth to the bathroom with a variety of tummy troubles. Didn't get much sleep, as you might imagine. Finally, at about 6:30, I went downstairs and mentioned to my mom that I was sick. I thought perhaps it was some mild food poisoning, possibly from the meal I'd had the afternoon before. I realized that, because it was Sunday, my only options were to either wait it out, or to go to the hospital for some treatment. But I was so tired, I thought from lack of sleep, that I decided to have a bit of a lie-down on the floor and see how things went. It was so hard to move, to do anything at all that required even a little bit of effort. I didn't realize it at the time, but even though I thought I was just taking a little nap, I was really losing consciousness for varying periods of time. My mom and brother kept asking if I wanted to go to the hospital, but I kept putting them off, thinking I'd get to feeling better after a little nap. The nausea had subsided, but I just couldn't get out of my own way. I decided to take a shower.
The shower wasn't the best idea in the world. I stood in the stream of water, just stood there, for I don't know how long. At times I would sit down in the tub and pass out. I finally turned off the water, got out of the tub, and laid down on the bath mat. I passed out again. I was out for probably 45 minutes, and my brother finally banged on the bathroom door, which brought me around a bit. I struggled a bit more, then got dressed, went downstairs, and finally, at about 3 PM, my mom and brother talked me into going to the hospital. He drove, Mom sat in the front of his Jeep Wrangler, and I got put in the back seat. I couldn't stay awake. And my abdomen was starting to hurt a bit, but not like when I was nauseated.
The hospital is an hour away. Now, I think I've mentioned before, I work for an ambulance service, so obviously I didn't want to take the ambulance to the hospital. I didn't really think I was ill enough for an ambulance; they're for really sick people, or really hurt people, not somebody with a little tummy pain who needs a good night's sleep. I realized much later that I would have been much, much better off if I'd taken the ambulance. But medical people make the worst patients, so my brother and mother humored me and transported me by private vehicle. We finally got to the hospital, and somehow I managed to walk in. The triage nurse saw me walk in, recognized me, and took me immediately into triage. I guess I looked pretty ill. I know I was walking somewhat bent over, holding my tummy. She told me I was very pale, did her triage routine, and sent me to the waiting room. It's a community hospital, very good for what it does, but it's not a huge emergency department, and it looked somewhat busy. I sat down next to my family and waited.
A few minutes later, another nurse called my name, but when I went to stand up to follow her, I almost fell to the floor. I screamed out in pain. They got a wheelchair, and there was a flurry of activity. I was put in a room immediately. As my mom and brother watched (they were allowed into the room, and stood in a corner, to keep out of the way), I got an IV, an EKG, a blood draw, an abdominal ultrasound, and I don't remember what else. One of the physician assistants came in to get my history. I was in and out of consciousness. Unconscious was best, because when I was awake I was screaming in pain. I'm pretty tolerant of pain, but this was unlike anything I'd ever experienced. We ask people to rate their pain on a scale of 1-10, with 1 being almost no pain, and 10 being the worst pain the patient can imagine. When they asked me, I rated the pain at 20, and I meant it wholeheartedly. This was pain beyond what I could even start to imagine. This was beyond Stephen King's or HP Lovecraft's wildest, most horrific dreams. It felt like a huge, red hot ice auger was drilling through my upper abdomen. Absolutely dreadful.
At some point, I apparently passed out for an extended period.. When I woke, my family wasn't there. I asked one of the nurses, and she told me that they'd gone home. I was to be admitted. They were waiting for a room to be readied for me on the appropriate floor. I asked her what was wrong with me, and she said they weren't positive, but it looked like pancreatitis. Oh, great. Pancreatitis has terrible press, and it's all completely deserved. And the thing about being a medical provider is, you know this stuff. And I'm one of those crazy people who reads medical textbooks for kicks, so I knew quite a bit about pancreatitis. None of it was good.
I'll have to stop there for now. I have a lot of things to do before bed, and I have to be in a town two hours away by 9 AM tomorrow for a training session. Part II will be posted soon... I hope.
Showing posts with label personal. Show all posts
Showing posts with label personal. Show all posts
Saturday, May 5, 2012
Tuesday, September 6, 2011
Freddie
I have always been a Queen fan. That's Queen, as in "Bohemian Rhapsody" and "Another One Bites The Dust", not as in Elizabeth II of England, or whoever. Yesterday would have been Freddie Mercury's 65th birthday. For those of you who just crawled out of the cabbage patch, Freddie Mercury was the lead singer of Queen, who died of HIV/AIDS in November of 1991. A more magnificent frontman you couldn't ever find. Just look at the official Queen channel on YouTube, at the concert clips, and you'll see what I mean. FU, Justin Bieber. Oh, and Vanilla Ice, for that stupid "Ice, Ice Baby" bullshit. If there's a hell (and there isn't), you deserve to burn in it for ripping off Queen. And denying it. Asshole.
In any case, Google's doodle for yesterday (the rest of the world) and today (US), is dedicated to Freddie. They also have a blog post written by the guitarist for Queen, Brian May, who is also an astrophysicist. Yeah! It's here: http://googleblog.blogspot.com/2011/09/happy-birthday-freddie-mercury.html, and it's wonderful.
Happy birthday, Freddie. You are sorely missed.
In any case, Google's doodle for yesterday (the rest of the world) and today (US), is dedicated to Freddie. They also have a blog post written by the guitarist for Queen, Brian May, who is also an astrophysicist. Yeah! It's here: http://googleblog.blogspot.com/2011/09/happy-birthday-freddie-mercury.html, and it's wonderful.
Happy birthday, Freddie. You are sorely missed.
Thursday, July 7, 2011
Personal revelations WARNING: not a nice story
This won't be an easy post. It's all come about over the past few days, as a result of something that has happened in the skeptical blogosphere. Rebecca Watson, one of the Skepchicks (probably the person everyone thinks of as "the" Skepchick) was in Dublin recently for a conference. At the end of the evening, after she had spent some hours stating that she didn't like to be hit on, that it creeps her out, she got hit on in an elevator. It has been established that Elevator Guy, as he is now known, was in a position to have heard Rebecca say that being hit on like that creeps her out. He was also in a position to have heard her say that she was going to her hotel room, alone, to sleep. It was 4 AM. She posted a video on Skepchick about this (at http://skepchick.org/2011/06/about-mythbusters-robot-eyes-feminism-and-jokes/). The video is just over 8 minutes long. The part where she starts talking about Elevator Guy is at 4:30 into it. She talks about the incident for about a minute and 15 seconds.
Another blogger had something to say about how Rebecca may have jumped to conclusions about the situation. Rebecca subsequently mentioned this at a conference held by CFI, where she was a keynote speaker. I don't know precisely what she said, having not been there, but the blogger she mentioned was there. Then all hell broke loose. From what I've been reading, some people side with Rebecca, that Elevator Guy was creepy and possibly a threat. Some side with the other blogger, that the situation was somewhat overexaggerated. Some say... well, you can see for yourself. Greg Laden has a link farm over at his blog, detailing all the relevant posts (it's at http://scienceblogs.com/gregladen/2011/07/elevators_and_privilege_a_lett.php ). Just click on the different links; you'll get the idea what a storm this has caused.
For purposes of this post, I have nothing to say about Rebecca mentioning names in her speech. I do, however, have something to say about Elevator Guy. I have to agree with Rebecca; being propositioned in an elevator, whether in a strange country or not, whether early in the morning or in the middle of the day, is creepy as hell. It doesn't really matter what was said, whether you were invited for coffee or what. There is something unspoken there, whether real or imagined. It is this: "Come to my hotel room with me. We'll have 'coffee'. And I will feel justified in putting my hands on you, because you consented to come to my room with me." The other unspoken implication is this: "If you don't come to my room with me, if you say no, then maybe I'll pretend that what you really said is yes, and I will take you now, by force if necessary." And that's what frightens many of us.
Here's where the personal revelation comes in. And this won't be easy.
Some years ago, my family moved from our home state to the state where we (my brother and I, at least) now live. Before we moved, I had been involved in my first physical relationship ever, and I left that to move here. We remained very close friends. In the first few months here, I met a few people. Construction started on our new house. Because I wasn't working, I got to know the construction crew. I saw them every day, interacted with them, and started to feel comfortable with them. One day, in October, one of the guys invited me to a Halloween party. He said he'd introduce me to some people, and that people I already knew would be there. Normally, I don't like situations like this, and he wasn't my type at all, but I was still unhappy (very) after the move, and I felt like I needed something to do, so I said yes to his invitation.
A few days before the party, this guy told me that he didn't really have a costume to wear. I'd been a bit of a punk chick back home, and I had a lot of pieces that I knew would fit him, so I offered to help him pick out something to wear. We decided on a few pieces, and he thanked me. He seemed like a nice guy.
The evening of the party, I put on my favorite punk dress, and he picked me up. He was using the construction foreman's pickup, as he didn't have his own transportation. We went to the party, which was at a bar that had been closed for the occasion. It was kind of a "locals only" party. There really wasn't anyone there that I knew, so I spent most of the evening sitting at a table with my date, or standing in a corner feeling really uncomfortable with so many strangers around me, while he made the rounds. He kept getting me fresh drinks, which tasted very watered down. There were pitchers of vodka and orange juice all around, and you could see the melted ice water sitting on top of the orange juice. I didn't really think twice when he took my drink, which was only half gone, to get me a new one. Repeatedly. I was very naive.
A few hours later, he decided it was time to go. We left the party and got into the truck. It was a cold evening in late October, so I was hoping to get home quickly, since the heater wasn't working in the truck. I wasn't real sure where we were, and I was equally unsure of the way home, since I hadn't really tried to scope out the area since moving. I hated it here. I am positive, though, that the way my date chose to take me home was not the most direct route, and it certainly wasn't the route we'd taken to the party. I was starting to feel the effects of the alcohol. I realize now that my date had been taking my drinks back to the bartender, who was adding more and more vodka to my drink, and just enough orange juice to make it look like it had been sitting in the pitchers, like the rest of it. All along the way home, my date kept trying to touch me. He'd try to pull me over to him on the bench seat. He'd put his hand on my thigh, or my breast. He even stopped the truck once at a particularly scenic view and tried to make out with me. Each time, I said that I wasn't interested, please stop, and I just wanted to go home. I was trapped in a vehicle with someone I now didn't trust all that much, but the alcohol was getting to me, and I wasn't really feeling very well.
He finally seemed to get the message, because he said that he would take me home after he changed his clothes. He said he wanted to give me back my costume items, because if it waited until the next work day (this was a Friday or a Saturday, and he would have to wait until Monday), he would forget them. What was I going to do? He was driving, so I was kind of under his control. We stopped at his apartment, which was in the basement of a house owned by the construction foreman's family. There was nobody else in the building. He told me to come inside and get warm, and he would just be a minute. I didn't want to go inside, but it really was freezing ,and as I said, the alcohol was screwing up my judgement. So I went inside.
Once inside, he left me in the living area, while he went to the bedroom to "change". And change he did. The person I knew while building my family's new house turned into a monster. He came out of the bedroom, grabbed me by the wrist, and pulled me into the room. I fought, I yelled at him, I said no, I pulled back, but he was bigger and stronger than me. He forced me to my knees, and held my head down while... I can't. I just can't write that part. But I couldn't breathe, I couldn't move, even though I fought with everything I had. And when he'd had enough of that, he pushed me back onto the bed, ripped off my underwear, and... once again, I just can't. I'm feeling sick all over again, just going over this.
When it was all over, he handed me my costume items, took me out to the truck, and took me home. Like nothing bad had happened. And it hadn't, as far as he was concerned. To him, "no" and "I just want to go home" clearly meant "yes" and "fuck me now, against my will; you know I'll love it". Only I didn't. I hated every microsecond of it. I hated feeling so violated, and incapable of defending myself. Nothing really bad had ever happened to me before, because my family and friends had protected me from badness. Now I'd had this evil act committed upon me, and I was completely incapable of doing anything about it.
Did I tell anyone? No. This is the first time I've told the whole story. A very few people actually know that I was raped; in fact, I've only ever told 3 people, and none of them knows the whole story. Two of those people have been not only my physicians, but very close friends. One of them, the first person I told, was the one to whom I gave my virginity. And I didn't even really tell him. I said that something horrible had happened, and he knew from the look on my face and the tone of my voice what it was, and he offered to "take care of it" for me, which essentially meant that he would pay $50 and travel expenses to someone in the city who would "take care of it". I told him no.
Did I tell the police? No. For one thing, at that time, date rape wasn't really considered a "crime". The perception was that I had consented to go out with this guy, and he'd paid some money to buy me drinks (not really; they were sitting out on the counter, and we're not counting the extra alcohol he had the bartender add), so obviously I owed him. For another, the local police force was comprised of a chief who had retired from somewhere else, and therefore wanted to do as little as possible, and one other officer who had also retired from somewhere else, and also wanted to do as little as possible. The Sheriff's dept. stayed away from this town as much as possible, so they wouldn't have been any help at all, either. And like I said, date rape wasn't a crime, remember?
Did I tell anyone in my family? No, because I didn't want to have to visit my dad in prison after he killed my rapist. And even though my brother and I weren't getting along all that well at that point, I was pretty sure that he'd inflict some damage on the guy, too. Mom? No, because she would either kill the guy herself, or tell my dad.
Being raped was bad enough, but maybe the worst part of it all was that I had to see the guy every single fucking day after that, except weekends, because he was still on the crew that was building my house. And I had to be nice to him, because if I didn't, someone in my family would catch on, and he'd end up stripped naked, tied to a tree, and covered in some sweet, sticky substance that the bears would like. Not a bad idea, actually, but I probably would have added a disemboweling. And cut his nuts off. At least. Also, a few weeks after the incident, he caught up to me alone outside the house we were living in, and asked me if I was sure I wasn't pregnant. Well, thanks for asking, asshole. No I'm not, but thanks for caring. Now fuck off and die.
Do I know where he is right now? No, but I hope he's at the bottom of a swamp somewhere, rotting. The statue of limitations on prosecution for rape in my state has long since passed.
This is why I feel so strongly about incidents like Rebecca was relating. For ten years after I was raped, I didn't go out with anyone who had a Y chromosome. At all. Not unless I was accompanied by at least one other female. There was one guy I could be alone with, and I'm really not sure why I was more or less comfortable with him. I kinda had a little crush on him, I guess, but I was pretty certain nothing would ever come of it. And I was desperately lonely. It sucks when you're as lonely as I was, but really too scared to do anything about it, because you're afraid you might get raped again. It took working with someone, getting to know him, beginning to realize that a relationship with him might not be such a bad thing, before I even thought about dating again. That ended not well, but after 17 years.
And now I've just screwed up another friendship. I've hurt someone who I care very deeply about, and I can't do anything about it. I feel terrible. I don't really know what to do, except punish myself some more. Hence, this blog post. I fear this was my last chance to be happy, because I'm still - STILL - afraid of dating, still afraid of being anything close to alone with people, men actually, who I don't know really, really well. Life sucks. Hopefully I'll get over this. I need to go snuggle my bunnies.
Another blogger had something to say about how Rebecca may have jumped to conclusions about the situation. Rebecca subsequently mentioned this at a conference held by CFI, where she was a keynote speaker. I don't know precisely what she said, having not been there, but the blogger she mentioned was there. Then all hell broke loose. From what I've been reading, some people side with Rebecca, that Elevator Guy was creepy and possibly a threat. Some side with the other blogger, that the situation was somewhat overexaggerated. Some say... well, you can see for yourself. Greg Laden has a link farm over at his blog, detailing all the relevant posts (it's at http://scienceblogs.com/gregladen/2011/07/elevators_and_privilege_a_lett.php ). Just click on the different links; you'll get the idea what a storm this has caused.
For purposes of this post, I have nothing to say about Rebecca mentioning names in her speech. I do, however, have something to say about Elevator Guy. I have to agree with Rebecca; being propositioned in an elevator, whether in a strange country or not, whether early in the morning or in the middle of the day, is creepy as hell. It doesn't really matter what was said, whether you were invited for coffee or what. There is something unspoken there, whether real or imagined. It is this: "Come to my hotel room with me. We'll have 'coffee'. And I will feel justified in putting my hands on you, because you consented to come to my room with me." The other unspoken implication is this: "If you don't come to my room with me, if you say no, then maybe I'll pretend that what you really said is yes, and I will take you now, by force if necessary." And that's what frightens many of us.
Here's where the personal revelation comes in. And this won't be easy.
Some years ago, my family moved from our home state to the state where we (my brother and I, at least) now live. Before we moved, I had been involved in my first physical relationship ever, and I left that to move here. We remained very close friends. In the first few months here, I met a few people. Construction started on our new house. Because I wasn't working, I got to know the construction crew. I saw them every day, interacted with them, and started to feel comfortable with them. One day, in October, one of the guys invited me to a Halloween party. He said he'd introduce me to some people, and that people I already knew would be there. Normally, I don't like situations like this, and he wasn't my type at all, but I was still unhappy (very) after the move, and I felt like I needed something to do, so I said yes to his invitation.
A few days before the party, this guy told me that he didn't really have a costume to wear. I'd been a bit of a punk chick back home, and I had a lot of pieces that I knew would fit him, so I offered to help him pick out something to wear. We decided on a few pieces, and he thanked me. He seemed like a nice guy.
The evening of the party, I put on my favorite punk dress, and he picked me up. He was using the construction foreman's pickup, as he didn't have his own transportation. We went to the party, which was at a bar that had been closed for the occasion. It was kind of a "locals only" party. There really wasn't anyone there that I knew, so I spent most of the evening sitting at a table with my date, or standing in a corner feeling really uncomfortable with so many strangers around me, while he made the rounds. He kept getting me fresh drinks, which tasted very watered down. There were pitchers of vodka and orange juice all around, and you could see the melted ice water sitting on top of the orange juice. I didn't really think twice when he took my drink, which was only half gone, to get me a new one. Repeatedly. I was very naive.
A few hours later, he decided it was time to go. We left the party and got into the truck. It was a cold evening in late October, so I was hoping to get home quickly, since the heater wasn't working in the truck. I wasn't real sure where we were, and I was equally unsure of the way home, since I hadn't really tried to scope out the area since moving. I hated it here. I am positive, though, that the way my date chose to take me home was not the most direct route, and it certainly wasn't the route we'd taken to the party. I was starting to feel the effects of the alcohol. I realize now that my date had been taking my drinks back to the bartender, who was adding more and more vodka to my drink, and just enough orange juice to make it look like it had been sitting in the pitchers, like the rest of it. All along the way home, my date kept trying to touch me. He'd try to pull me over to him on the bench seat. He'd put his hand on my thigh, or my breast. He even stopped the truck once at a particularly scenic view and tried to make out with me. Each time, I said that I wasn't interested, please stop, and I just wanted to go home. I was trapped in a vehicle with someone I now didn't trust all that much, but the alcohol was getting to me, and I wasn't really feeling very well.
He finally seemed to get the message, because he said that he would take me home after he changed his clothes. He said he wanted to give me back my costume items, because if it waited until the next work day (this was a Friday or a Saturday, and he would have to wait until Monday), he would forget them. What was I going to do? He was driving, so I was kind of under his control. We stopped at his apartment, which was in the basement of a house owned by the construction foreman's family. There was nobody else in the building. He told me to come inside and get warm, and he would just be a minute. I didn't want to go inside, but it really was freezing ,and as I said, the alcohol was screwing up my judgement. So I went inside.
Once inside, he left me in the living area, while he went to the bedroom to "change". And change he did. The person I knew while building my family's new house turned into a monster. He came out of the bedroom, grabbed me by the wrist, and pulled me into the room. I fought, I yelled at him, I said no, I pulled back, but he was bigger and stronger than me. He forced me to my knees, and held my head down while... I can't. I just can't write that part. But I couldn't breathe, I couldn't move, even though I fought with everything I had. And when he'd had enough of that, he pushed me back onto the bed, ripped off my underwear, and... once again, I just can't. I'm feeling sick all over again, just going over this.
When it was all over, he handed me my costume items, took me out to the truck, and took me home. Like nothing bad had happened. And it hadn't, as far as he was concerned. To him, "no" and "I just want to go home" clearly meant "yes" and "fuck me now, against my will; you know I'll love it". Only I didn't. I hated every microsecond of it. I hated feeling so violated, and incapable of defending myself. Nothing really bad had ever happened to me before, because my family and friends had protected me from badness. Now I'd had this evil act committed upon me, and I was completely incapable of doing anything about it.
Did I tell anyone? No. This is the first time I've told the whole story. A very few people actually know that I was raped; in fact, I've only ever told 3 people, and none of them knows the whole story. Two of those people have been not only my physicians, but very close friends. One of them, the first person I told, was the one to whom I gave my virginity. And I didn't even really tell him. I said that something horrible had happened, and he knew from the look on my face and the tone of my voice what it was, and he offered to "take care of it" for me, which essentially meant that he would pay $50 and travel expenses to someone in the city who would "take care of it". I told him no.
Did I tell the police? No. For one thing, at that time, date rape wasn't really considered a "crime". The perception was that I had consented to go out with this guy, and he'd paid some money to buy me drinks (not really; they were sitting out on the counter, and we're not counting the extra alcohol he had the bartender add), so obviously I owed him. For another, the local police force was comprised of a chief who had retired from somewhere else, and therefore wanted to do as little as possible, and one other officer who had also retired from somewhere else, and also wanted to do as little as possible. The Sheriff's dept. stayed away from this town as much as possible, so they wouldn't have been any help at all, either. And like I said, date rape wasn't a crime, remember?
Did I tell anyone in my family? No, because I didn't want to have to visit my dad in prison after he killed my rapist. And even though my brother and I weren't getting along all that well at that point, I was pretty sure that he'd inflict some damage on the guy, too. Mom? No, because she would either kill the guy herself, or tell my dad.
Being raped was bad enough, but maybe the worst part of it all was that I had to see the guy every single fucking day after that, except weekends, because he was still on the crew that was building my house. And I had to be nice to him, because if I didn't, someone in my family would catch on, and he'd end up stripped naked, tied to a tree, and covered in some sweet, sticky substance that the bears would like. Not a bad idea, actually, but I probably would have added a disemboweling. And cut his nuts off. At least. Also, a few weeks after the incident, he caught up to me alone outside the house we were living in, and asked me if I was sure I wasn't pregnant. Well, thanks for asking, asshole. No I'm not, but thanks for caring. Now fuck off and die.
Do I know where he is right now? No, but I hope he's at the bottom of a swamp somewhere, rotting. The statue of limitations on prosecution for rape in my state has long since passed.
This is why I feel so strongly about incidents like Rebecca was relating. For ten years after I was raped, I didn't go out with anyone who had a Y chromosome. At all. Not unless I was accompanied by at least one other female. There was one guy I could be alone with, and I'm really not sure why I was more or less comfortable with him. I kinda had a little crush on him, I guess, but I was pretty certain nothing would ever come of it. And I was desperately lonely. It sucks when you're as lonely as I was, but really too scared to do anything about it, because you're afraid you might get raped again. It took working with someone, getting to know him, beginning to realize that a relationship with him might not be such a bad thing, before I even thought about dating again. That ended not well, but after 17 years.
And now I've just screwed up another friendship. I've hurt someone who I care very deeply about, and I can't do anything about it. I feel terrible. I don't really know what to do, except punish myself some more. Hence, this blog post. I fear this was my last chance to be happy, because I'm still - STILL - afraid of dating, still afraid of being anything close to alone with people, men actually, who I don't know really, really well. Life sucks. Hopefully I'll get over this. I need to go snuggle my bunnies.
Thursday, June 16, 2011
Sorry, this is a long one
I was just going through the comics I usually read online, and I came across this one from Jesus and Mo. It's especially timely, considering what my brother and I have been going through. It's at http://www.jesusandmo.net/2011/06/14/death2/. It encapsulates pretty accurately what I've come across from some of the more religious of my encounters, up to and including one of the hospice workers.
My mother was suffering. She wasn't in pain, at least not what you'd really call intractable pain. It was more like the pain she usually had with her arthritis, and she said acetaminophen helped her, right up until the time we started her on the liquid morphine. The liquid morphine was actually used more for the calming effect it had on her than for any pain issues. When she'd have some difficulty breathing, usually because she was panicking, we'd give her some liquid morphine, and she'd calm down and breathe better. Toward the end, if she had some pain from the skin lesions she'd developed from sitting in her chair so long or lying in her bed all day, because she hadn't been able to walk since the end of October 2010, we'd give her some liquid morphine. Her pain was pretty much well-controlled. No, she was suffering from something that morphine couldn't control: the loss of ability, and the loss of dignity.
My mother had always been an active woman. She had 4 brothers, both older and younger, and an older sister, who had contracted polio at the age of 2. My aunt was one of the lucky ones; she avoided the iron lung. The polio merely made her legs completely useless, and she used crutches to walk for the rest of her life. But with a large family like that, my mom really had to keep on her toes. She, along with her brothers, helped her father work in the cranberry bogs her father owned. When she got old enough, she went to work for herself, but brought much of her paycheck home to help out the family. She lived at home until she got married the first time, then went to live with her new husband. They had to travel, because he was a military pilot, and it was World War II. He was shot down over the Pacific Ocean; his body was never found. So my mother found herself a widow in her early 20's.
She worked at the telephone company for some years, as an operator, until someone told her that the local physician was looking for office help. She applied, and got the job pretty quickly. She worked in the doctor's office for a number of years, making appointments, doing some lab tests, acting as nurse, and just generally keeping things running. When the doctor got divorced and asked my mother to marry him, she said yes. They were married soon after, by a judge, in his courtroom. By the time I was born, my mom was 40 years old. Then she started having miscarriages, and was worried that she'd never have another child. My brother was born when she was 42. She was ecstatic. She'd waited all her life for children, and she finally had exactly what she wanted: a loving man, and two "wonderful" (her words, not mine) kids.
My parents took very good care of us while we were growing up. We took family trips all over, and every Sunday that my dad wasn't working, we'd go for a drive in the woods. We had everything we ever wanted, and my mother, especially, made sure we got to include our friends in things we did. Ice skating in the winter, swimming in the summer, trips to the beach, just about everything a kid could want. And the best parents we could imagine.
And so it went. Mom was the pillar of the family. My dad was always there when we needed him, but his job was an important one, and I was proud to be the daughter of a well-respected doctor. I didn't think it was at all unusual when we'd discuss accident scenes or suicides or murders or drug overdoses at the dinner table. And sometimes there were photos. But my dad talked about everything so matter-of-factly that nothing seemed wrong about it. And it wasn't wrong. He was teaching us very important lessons. Mom was there through all of it.
Life continued, and when my dad retired, we moved north. All four of us. Yes, the kids stayed with the parents, just like in the old days, when you only moved out when you got married. We were here eleven years before he died, of the double whammy of a subdural hematoma and kidney failure from diabetes. Nothing easy about that one, because mom and dad had both decided to keep the fact that he was dying of kidney failure away from us kids. My brother and I thought he'd just gone into the hospital because he'd fallen, struck his head, and had a bleed in his head. Oh, no. Even though they fixed the hematoma, he still died. He'd been in the hospital for about 3 weeks, right through Christmas, and died on December 30. But Mom took it all in stride, even though you could see she was grieving. She'd had some time to come to terms with it, because she knew of the kidney failure.
Did she decide, after my dad died, to leave the place he'd decided to live in after retirement, and go back home, back to where she still had family and old friends? After all, she hadn't really made many friends here. No, she decided to stick it out, and my brother and I stayed with her. We had good times, walking in the woods, shopping, watching birds. She loved life. She missed my dad, but you'd only catch on to that once in a while, when she'd start crying in an unguarded moment. She rarely talked about his end, but would talk about all the good times we'd had. "Do you remember when...", or "When I was working in the office..." Good times.
It was the physician I was working for at the time who suggested that Mom might have Parkinson's disease. She'd gone in to see him for some reason or another, and he noted a tremor in her leg. Just a little one, one she could stop without any effort, and just in one leg, but he thought it was a sign of trouble. He started her on an anti-parkinson medication, but she stopped it after a few weeks, saying it wasn't doing anything for her, and just made her feel not good. "I don't have time to be sick," she'd say.
A few years later, I got sick. Very sick. I was in the hospital for weeks, and came out better, but still unable to work. Mom worried about me the whole time, but tried not to show it. She was always cheery when she talked to me on the phone, or when she came to visit me in the hospital. I didn't see her every day, of course, because the hospital is an hour away from our home, and I told her she didn't need to make the trip every day. But she did call, every night, just when I was getting ready to watch Batman reruns on TV Land. When I finally got out of the hospital, I ended up having to go to another hospital three hours away for a procedure to try to fix a problem. About a week before I had to go for the procedure, Mom fell and broke her hip. I had to drive myself back home the day after my procedure, stopping long enough to spring her from the nursing home she'd gone to for rehab, because they were treating her very badly. It's never nice when you have to threaten to call all the licensure boards you can think of, plus the police to file an assault report, in order to get your loved one out of a bad situation. I'd never before seen my mother cry in front of someone who wasn't family; I didn't ever want to see it again. I made myself as obnoxious as possible and kicked a few asses around, but finally got her out. She had her rehab at home, but we realized she wasn't progressing as we'd hoped, so we consulted her primary care physician, who set her up for a neurology appointment. That's when we got the diagnosis: Parkinson's disease. That was October of 2002, just before I went back into the hospital for major surgery. This hospital was three hours away, so she only visited me once during the three weeks I was there.
I took her to her neurology appointments every 3 months, then every 6 months, when it didn't seem like the Parkinson's was progressing much. The neurologist would tweak her meds every once in a while, but otherwise pretty much just left her alone. She'd occasionally get a "tune up" at physical therapy, but that was about it. She would get frustrated on occasion, especially in the later years when she got tired of using the walker, or of asking us to help her get down the stairs, but she was usually pretty upbeat.
I'd noticed for a while that she had been getting a little forgetful, but I first realized something was very wrong in December 2009. We'd gone to one of her doctor's appointments, and I asked her if she wanted to go to my favorite garden center to look at the poinsettias. She said she did, so we took the side trip, then stopped at the supermarket we usually used about an hour from home. It was a long day for her. I asked her if she wanted to come in with me, because I'd brought her wheelchair (it had gotten to be too much for her to walk for long periods, so I just put her in a wheelchair so she could get out). She wanted to sit in the car, even though it was cold, so I told her I'd be out as quickly as possible, and left her in the car. Naturally, things didn't go as planned, the store was more crowded than I'd expected, and I spent much longer than I'd wanted. I was worried about my mom, and was glad to finally be at the front end, checking out. That's when I heard them calling my name over the store intercom, asking me to come to the front end. I'd just paid for the groceries, so I looked around to see what they were calling me about. I saw a group of people clustered around the bench at the front of the store, and my mother in the middle of it. No walker, no wheelchair, just my mom, with a bunch of people around her. WTF? I went over and asked what was going on, and was told that some ladies found her walking around outside in the parking lot, holding onto cars, so they brought her inside. She didn't know who I was. She didn't want to go home with me. She wanted to talk to my brother. A store employee was there, trying to keep the situation calm, and trying to figure out a way to help. I'd been in the store at least once a week for the previous 20+ years, frequently with my mom, so it wasn't like they didn't know me. I called my brother on my cell, and he tried to talk her into coming home with me. She wouldn't listen to him. The employee, who'd had a grandmother with Alzheimer's, did an excellent job of talking Mom into going home with me, and she, somewhat hesitantly, got into the car with me for the one hour trip. About half an hour into the ride, Mom reached over and patted my leg. I think she knew something was wrong, but didn't know what, but she knew I was upset.
It got really bad last May. That's when she decided we were trying to poison her, and she pretty much stopped eating. She was especially suspicious of me, telling me she'd called the United Nations on me, and the FBI knew all about me. She could still walk at that time, and there were many times when she tried to get out of the house and walk "home". It didn't matter that "home" is actually about 500 miles away, she was sure she was going to walk there. Or her brother was going to pick her up. Or someone from the FBI, or some other law enforcement agency. I didn't know who I was going to be, in her eyes, from one minute to the next. Sometimes I was myself. Sometimes I was my evil twin. Sometimes I was my mother's sister (who had died several years before, and she didn't remember). Sometimes I was her sister-in-law. Sometimes my brother was her brother. We never knew who we were going to be. She called us from sleep once, at 1:00 in the morning, in order to argue with us for the rest of the night, because she wanted to go home, and we wouldn't let her. She got violent sometimes, throwing things and lashing out. We were keeping her prisoner. She was seeing things, people who were trying to keep her a prisoner in what she didn't believe was her own home. It just went on and on. Her doctor, who is a good friend of mine, finally suggested that she might be a candidate for hospice services, because it sounded like it wasn't just Parkinson's she was suffering from, it was also a dementia that can come with and/or mimic Parkinson's, called Lewy Body Dementia, and we clearly needed help. We accepted the offer, and hospice services were started.
She had her hospice intake on a Thursday, by a nurse who was filling in for what would be her regular nurse. The following Tuesday, Mom became unresponsive. My brother was home alone with her at the time, and he called me at work. He also called her doctor. I got my work partner, and we came home, arriving just before the doctor. The doc suggested we call the hospice nurse and see what she had to say, so we did. Her regular hospice nurse, who we'd only met the day before, suggested a trip to their hospice house, a lovely facility that only takes care of hospice patients. She wasn't sure what was going on, not being at the house and all, but she thought that maybe this was "it". She got Mom a room at the hospice house (there are only 17 beds there, so that was quite a feat), and while we were on the phone with her, Mom came out of it. She hadn't been taking her Parkinson's meds correctly, and had a "freeze-up" episode. But she was pissed! She was yelling, throwing things, really throwing a tantrum a 2-year-old would be proud of. We decided that the hospice house trip was still the best idea, because the nurse suggested that maybe they could work on getting Mom on some meds that would help her out. I tried to give her some medication to calm her for the trip, because my partner and one of my coworkers would be taking her down in our ambulance. They wanted me to go off duty and be with my mother at the hospice house. I tried to give her the medication, but she spit it out at me. Good thing she didn't have very good aim, or range.
Her stay at the hospice house lasted about a month, and when she came home, she was much calmer, even though she thought I was someone else, and that my brother and I were getting married. That went on for a little while, but after a while it all settled down, and she finally figured out who we were, and that she was home. But over the months, you could tell that things weren't right. She'd have lapses, and there were times she was so frustrated with not being able to think of something, or remember how to do something, and she would just sit and cry and say "Just let me die!" Here was a woman who'd been independent all her life, and now she can't even recognize her own kids, or make herself a sandwich. And she'd been losing weight. Three years before, she'd been about 120 pounds. Now, she was 80 pounds.
Then at the end of October, I got a call at work from my brother, who wasn't sure if she'd had a stroke or not. I brought my work partner and my work truck home, and we checked her out. If it was a stroke, it sure was a weird one. I tend to believe it was more of a Parkinson's thing. But she suddenly couldn't walk. I ended up having to go on an emergency call that night, then another one, so I didn't get home until 1 AM. That's when I found her, on the bedroom floor, in a twisted heap, with a dislocated hip. So back to the hospital I went, with my mother, in the ambulance, with my brother following in my car. She dislocated the same hip a total of 4 times over the next few months, and each time she ended up in the operating room, under anesthesia, making things worse with her dementia, and with the hospitalists and the orthopedist trying to tell us that she needed to be in a nursing home. No thanks, we told them, she's a hospice patient, and she's coming home with us. We'd promised our dad we'd keep her home as long as we could, because we knew she wouldn't last 2 weeks in a nursing home, and it would be a really bad 2 weeks. So she came home.
Over the months, she got worse. She didn't eat much, and lost more weight, and got much more demanding, maybe because she was bored, or lonely, or who knows. Her falls got more frequent. It finally got to the point where my brother and I needed more help, and hospice jumped in, giving us aides 5 days a week. They helped Mom get dressed, helped her get cleaned up, changed the bed linens when she wet them. From a woman who hated to ask her daughter for help in the personal care area, to a woman who relied on strangers for all that, because her kids couldn't do it all. And finally, a complete loss of dignity: a woman who couldn't even turn herself over in her bed, who couldn't even get herself out of her bed to use the commode.
This is what I'm talking about. Sometimes it's not the pain you want to go away. Sometimes there is no pain. Sometimes it's the fact that you can't fucking do anything you want to do. Sometimes it's the fact that you can't recognize your own kids, and you know something's wrong, but you can't puzzle it out for yourself, and when your daughter points it out to you, during one of your few moments of clarity, you cry uncontrollably and actually say that you want to die. People focus on the pain, and how we can control pain, we have great drugs for that, but you can't control the fact that someone you love feels completely, absolutely useless, and a burden, and no longer has ANY quality of life, and is just working on quantity of life, which is clearly not what they want. And you know they feel guilty because of what they're doing to their loved ones, and sometimes they feel guilty because they know they're taking up resources that might be better spent somewhere else. I couldn't do that to someone I loved. I wish I'd been able to help my mom.
Sorry for the length of this post, but holy fuck. My poor mom suffered greatly before she died, and I couldn't do anything about it. And the fact that there are some numbnuts out there who actually see that as a good, godly thing pisses me right the fuck off. OK, fine. YOU do the Christlike thing, and take her suffering on yourself. I would've done it in a heartbeat, if I could. And I'll bet you godly people would just put your loved ones in a nursing home. Assholes.
My mother was suffering. She wasn't in pain, at least not what you'd really call intractable pain. It was more like the pain she usually had with her arthritis, and she said acetaminophen helped her, right up until the time we started her on the liquid morphine. The liquid morphine was actually used more for the calming effect it had on her than for any pain issues. When she'd have some difficulty breathing, usually because she was panicking, we'd give her some liquid morphine, and she'd calm down and breathe better. Toward the end, if she had some pain from the skin lesions she'd developed from sitting in her chair so long or lying in her bed all day, because she hadn't been able to walk since the end of October 2010, we'd give her some liquid morphine. Her pain was pretty much well-controlled. No, she was suffering from something that morphine couldn't control: the loss of ability, and the loss of dignity.
My mother had always been an active woman. She had 4 brothers, both older and younger, and an older sister, who had contracted polio at the age of 2. My aunt was one of the lucky ones; she avoided the iron lung. The polio merely made her legs completely useless, and she used crutches to walk for the rest of her life. But with a large family like that, my mom really had to keep on her toes. She, along with her brothers, helped her father work in the cranberry bogs her father owned. When she got old enough, she went to work for herself, but brought much of her paycheck home to help out the family. She lived at home until she got married the first time, then went to live with her new husband. They had to travel, because he was a military pilot, and it was World War II. He was shot down over the Pacific Ocean; his body was never found. So my mother found herself a widow in her early 20's.
She worked at the telephone company for some years, as an operator, until someone told her that the local physician was looking for office help. She applied, and got the job pretty quickly. She worked in the doctor's office for a number of years, making appointments, doing some lab tests, acting as nurse, and just generally keeping things running. When the doctor got divorced and asked my mother to marry him, she said yes. They were married soon after, by a judge, in his courtroom. By the time I was born, my mom was 40 years old. Then she started having miscarriages, and was worried that she'd never have another child. My brother was born when she was 42. She was ecstatic. She'd waited all her life for children, and she finally had exactly what she wanted: a loving man, and two "wonderful" (her words, not mine) kids.
My parents took very good care of us while we were growing up. We took family trips all over, and every Sunday that my dad wasn't working, we'd go for a drive in the woods. We had everything we ever wanted, and my mother, especially, made sure we got to include our friends in things we did. Ice skating in the winter, swimming in the summer, trips to the beach, just about everything a kid could want. And the best parents we could imagine.
And so it went. Mom was the pillar of the family. My dad was always there when we needed him, but his job was an important one, and I was proud to be the daughter of a well-respected doctor. I didn't think it was at all unusual when we'd discuss accident scenes or suicides or murders or drug overdoses at the dinner table. And sometimes there were photos. But my dad talked about everything so matter-of-factly that nothing seemed wrong about it. And it wasn't wrong. He was teaching us very important lessons. Mom was there through all of it.
Life continued, and when my dad retired, we moved north. All four of us. Yes, the kids stayed with the parents, just like in the old days, when you only moved out when you got married. We were here eleven years before he died, of the double whammy of a subdural hematoma and kidney failure from diabetes. Nothing easy about that one, because mom and dad had both decided to keep the fact that he was dying of kidney failure away from us kids. My brother and I thought he'd just gone into the hospital because he'd fallen, struck his head, and had a bleed in his head. Oh, no. Even though they fixed the hematoma, he still died. He'd been in the hospital for about 3 weeks, right through Christmas, and died on December 30. But Mom took it all in stride, even though you could see she was grieving. She'd had some time to come to terms with it, because she knew of the kidney failure.
Did she decide, after my dad died, to leave the place he'd decided to live in after retirement, and go back home, back to where she still had family and old friends? After all, she hadn't really made many friends here. No, she decided to stick it out, and my brother and I stayed with her. We had good times, walking in the woods, shopping, watching birds. She loved life. She missed my dad, but you'd only catch on to that once in a while, when she'd start crying in an unguarded moment. She rarely talked about his end, but would talk about all the good times we'd had. "Do you remember when...", or "When I was working in the office..." Good times.
It was the physician I was working for at the time who suggested that Mom might have Parkinson's disease. She'd gone in to see him for some reason or another, and he noted a tremor in her leg. Just a little one, one she could stop without any effort, and just in one leg, but he thought it was a sign of trouble. He started her on an anti-parkinson medication, but she stopped it after a few weeks, saying it wasn't doing anything for her, and just made her feel not good. "I don't have time to be sick," she'd say.
A few years later, I got sick. Very sick. I was in the hospital for weeks, and came out better, but still unable to work. Mom worried about me the whole time, but tried not to show it. She was always cheery when she talked to me on the phone, or when she came to visit me in the hospital. I didn't see her every day, of course, because the hospital is an hour away from our home, and I told her she didn't need to make the trip every day. But she did call, every night, just when I was getting ready to watch Batman reruns on TV Land. When I finally got out of the hospital, I ended up having to go to another hospital three hours away for a procedure to try to fix a problem. About a week before I had to go for the procedure, Mom fell and broke her hip. I had to drive myself back home the day after my procedure, stopping long enough to spring her from the nursing home she'd gone to for rehab, because they were treating her very badly. It's never nice when you have to threaten to call all the licensure boards you can think of, plus the police to file an assault report, in order to get your loved one out of a bad situation. I'd never before seen my mother cry in front of someone who wasn't family; I didn't ever want to see it again. I made myself as obnoxious as possible and kicked a few asses around, but finally got her out. She had her rehab at home, but we realized she wasn't progressing as we'd hoped, so we consulted her primary care physician, who set her up for a neurology appointment. That's when we got the diagnosis: Parkinson's disease. That was October of 2002, just before I went back into the hospital for major surgery. This hospital was three hours away, so she only visited me once during the three weeks I was there.
I took her to her neurology appointments every 3 months, then every 6 months, when it didn't seem like the Parkinson's was progressing much. The neurologist would tweak her meds every once in a while, but otherwise pretty much just left her alone. She'd occasionally get a "tune up" at physical therapy, but that was about it. She would get frustrated on occasion, especially in the later years when she got tired of using the walker, or of asking us to help her get down the stairs, but she was usually pretty upbeat.
I'd noticed for a while that she had been getting a little forgetful, but I first realized something was very wrong in December 2009. We'd gone to one of her doctor's appointments, and I asked her if she wanted to go to my favorite garden center to look at the poinsettias. She said she did, so we took the side trip, then stopped at the supermarket we usually used about an hour from home. It was a long day for her. I asked her if she wanted to come in with me, because I'd brought her wheelchair (it had gotten to be too much for her to walk for long periods, so I just put her in a wheelchair so she could get out). She wanted to sit in the car, even though it was cold, so I told her I'd be out as quickly as possible, and left her in the car. Naturally, things didn't go as planned, the store was more crowded than I'd expected, and I spent much longer than I'd wanted. I was worried about my mom, and was glad to finally be at the front end, checking out. That's when I heard them calling my name over the store intercom, asking me to come to the front end. I'd just paid for the groceries, so I looked around to see what they were calling me about. I saw a group of people clustered around the bench at the front of the store, and my mother in the middle of it. No walker, no wheelchair, just my mom, with a bunch of people around her. WTF? I went over and asked what was going on, and was told that some ladies found her walking around outside in the parking lot, holding onto cars, so they brought her inside. She didn't know who I was. She didn't want to go home with me. She wanted to talk to my brother. A store employee was there, trying to keep the situation calm, and trying to figure out a way to help. I'd been in the store at least once a week for the previous 20+ years, frequently with my mom, so it wasn't like they didn't know me. I called my brother on my cell, and he tried to talk her into coming home with me. She wouldn't listen to him. The employee, who'd had a grandmother with Alzheimer's, did an excellent job of talking Mom into going home with me, and she, somewhat hesitantly, got into the car with me for the one hour trip. About half an hour into the ride, Mom reached over and patted my leg. I think she knew something was wrong, but didn't know what, but she knew I was upset.
It got really bad last May. That's when she decided we were trying to poison her, and she pretty much stopped eating. She was especially suspicious of me, telling me she'd called the United Nations on me, and the FBI knew all about me. She could still walk at that time, and there were many times when she tried to get out of the house and walk "home". It didn't matter that "home" is actually about 500 miles away, she was sure she was going to walk there. Or her brother was going to pick her up. Or someone from the FBI, or some other law enforcement agency. I didn't know who I was going to be, in her eyes, from one minute to the next. Sometimes I was myself. Sometimes I was my evil twin. Sometimes I was my mother's sister (who had died several years before, and she didn't remember). Sometimes I was her sister-in-law. Sometimes my brother was her brother. We never knew who we were going to be. She called us from sleep once, at 1:00 in the morning, in order to argue with us for the rest of the night, because she wanted to go home, and we wouldn't let her. She got violent sometimes, throwing things and lashing out. We were keeping her prisoner. She was seeing things, people who were trying to keep her a prisoner in what she didn't believe was her own home. It just went on and on. Her doctor, who is a good friend of mine, finally suggested that she might be a candidate for hospice services, because it sounded like it wasn't just Parkinson's she was suffering from, it was also a dementia that can come with and/or mimic Parkinson's, called Lewy Body Dementia, and we clearly needed help. We accepted the offer, and hospice services were started.
She had her hospice intake on a Thursday, by a nurse who was filling in for what would be her regular nurse. The following Tuesday, Mom became unresponsive. My brother was home alone with her at the time, and he called me at work. He also called her doctor. I got my work partner, and we came home, arriving just before the doctor. The doc suggested we call the hospice nurse and see what she had to say, so we did. Her regular hospice nurse, who we'd only met the day before, suggested a trip to their hospice house, a lovely facility that only takes care of hospice patients. She wasn't sure what was going on, not being at the house and all, but she thought that maybe this was "it". She got Mom a room at the hospice house (there are only 17 beds there, so that was quite a feat), and while we were on the phone with her, Mom came out of it. She hadn't been taking her Parkinson's meds correctly, and had a "freeze-up" episode. But she was pissed! She was yelling, throwing things, really throwing a tantrum a 2-year-old would be proud of. We decided that the hospice house trip was still the best idea, because the nurse suggested that maybe they could work on getting Mom on some meds that would help her out. I tried to give her some medication to calm her for the trip, because my partner and one of my coworkers would be taking her down in our ambulance. They wanted me to go off duty and be with my mother at the hospice house. I tried to give her the medication, but she spit it out at me. Good thing she didn't have very good aim, or range.
Her stay at the hospice house lasted about a month, and when she came home, she was much calmer, even though she thought I was someone else, and that my brother and I were getting married. That went on for a little while, but after a while it all settled down, and she finally figured out who we were, and that she was home. But over the months, you could tell that things weren't right. She'd have lapses, and there were times she was so frustrated with not being able to think of something, or remember how to do something, and she would just sit and cry and say "Just let me die!" Here was a woman who'd been independent all her life, and now she can't even recognize her own kids, or make herself a sandwich. And she'd been losing weight. Three years before, she'd been about 120 pounds. Now, she was 80 pounds.
Then at the end of October, I got a call at work from my brother, who wasn't sure if she'd had a stroke or not. I brought my work partner and my work truck home, and we checked her out. If it was a stroke, it sure was a weird one. I tend to believe it was more of a Parkinson's thing. But she suddenly couldn't walk. I ended up having to go on an emergency call that night, then another one, so I didn't get home until 1 AM. That's when I found her, on the bedroom floor, in a twisted heap, with a dislocated hip. So back to the hospital I went, with my mother, in the ambulance, with my brother following in my car. She dislocated the same hip a total of 4 times over the next few months, and each time she ended up in the operating room, under anesthesia, making things worse with her dementia, and with the hospitalists and the orthopedist trying to tell us that she needed to be in a nursing home. No thanks, we told them, she's a hospice patient, and she's coming home with us. We'd promised our dad we'd keep her home as long as we could, because we knew she wouldn't last 2 weeks in a nursing home, and it would be a really bad 2 weeks. So she came home.
Over the months, she got worse. She didn't eat much, and lost more weight, and got much more demanding, maybe because she was bored, or lonely, or who knows. Her falls got more frequent. It finally got to the point where my brother and I needed more help, and hospice jumped in, giving us aides 5 days a week. They helped Mom get dressed, helped her get cleaned up, changed the bed linens when she wet them. From a woman who hated to ask her daughter for help in the personal care area, to a woman who relied on strangers for all that, because her kids couldn't do it all. And finally, a complete loss of dignity: a woman who couldn't even turn herself over in her bed, who couldn't even get herself out of her bed to use the commode.
This is what I'm talking about. Sometimes it's not the pain you want to go away. Sometimes there is no pain. Sometimes it's the fact that you can't fucking do anything you want to do. Sometimes it's the fact that you can't recognize your own kids, and you know something's wrong, but you can't puzzle it out for yourself, and when your daughter points it out to you, during one of your few moments of clarity, you cry uncontrollably and actually say that you want to die. People focus on the pain, and how we can control pain, we have great drugs for that, but you can't control the fact that someone you love feels completely, absolutely useless, and a burden, and no longer has ANY quality of life, and is just working on quantity of life, which is clearly not what they want. And you know they feel guilty because of what they're doing to their loved ones, and sometimes they feel guilty because they know they're taking up resources that might be better spent somewhere else. I couldn't do that to someone I loved. I wish I'd been able to help my mom.
Sorry for the length of this post, but holy fuck. My poor mom suffered greatly before she died, and I couldn't do anything about it. And the fact that there are some numbnuts out there who actually see that as a good, godly thing pisses me right the fuck off. OK, fine. YOU do the Christlike thing, and take her suffering on yourself. I would've done it in a heartbeat, if I could. And I'll bet you godly people would just put your loved ones in a nursing home. Assholes.
Saturday, May 28, 2011
I'm back... sort of
I see I haven't posted in a while. Life has been conspiring against me. My mother, who is suffering from advanced Parkinson Disease and dementia, has taken a significant turn for the worse. A little over a week ago, the hospice nurse told us that she thought Mom had maybe a month before the end. I think she overestimated. Mom has been pretty unresponsive for the better part of a week. She woke up this morning and asked for something to eat. She hasn't had any actual food since May 9. Her fluid intake has been declining quickly. Lately she has been drinking only just enough to swallow her medications (thankfully, she is still able to do that). Today she had a large glass of chocolate milk, but that was this morning, and she's been "asleep" (unresponsive) in her chair since she finished it.
When she was at the local hospice facility in March, they tried to weigh her. It's not easy to weigh someone who can't stand on her own, but they came up with a guesstimated weight of 72 pounds (less than 33 kg). I'm pretty sure she's below 70 lbs. now, probably closer to 60 lbs. She's very frail, which is not at all like her. It's probably a good thing she's so small to begin with (4'10"); otherwise, it would be much more difficult for my brother and me to take care of her without help. Hospice has been a wonderful resource, but they can't be here all the time. It would be easier to put her in a nursing home and forget about her, but we made a promise to our dad and to Mom that we would do everything we could to keep her out of those places.
She's always been a little powerhouse, but not now. I think she's given up. And that's not necessarily a bad thing. She's had no quality of life for some months now. Her decline has been what is frequently described as "downhill on roller skates". I hate watching what this disease has done to her, but as much as I want my mother back like she was, I know this isn't possible, and I just wish it was over for her. She's not in any pain; the medication takes care of that. She doesn't seem to be having any scary hallucinations; different medication takes care of that. And she knows my brother and me, which is comforting.
She had a bad Parkinson lockup the other night, in which she folded up (chest to knees in her chair, like she was trying to pick up something from the floor), and she couldn't sit up again. I tried for about an hour and a half to help her by giving her the Parkinson medication, her pain medication, a heating pad to her back, massage, anything I could do to try to help, and it was all useless. My brother and I finally put her to bed, figuring that if she could lay on her side, she could at least breathe a little easier, and maybe the Parkinson med would kick in sometime during the night. She was less stiff in the morning, but unresponsive, and she cried out like an injured animal when the hospice aide tried to get her washed up. She came to a little that evening, and spent about 45 minutes in the living room with my brother and me, but that was it.
It's weird, but the hospice nurse tells me it's not unexpected, to see her go from being unresponsive one day, to being up and alert the next. It almost gives me a little hope that maybe this isn't "it", but I know better. I see her slipping away a little more all the time. It tears me up, so much that I can't keep the tears away, and I know it distresses her when she sees me crying. I make an excuse, but I think she knows. One one of the nurse's most recent visits, she claimed she wasn't in any pain... yet. I don't want her to have pain. She cried a lot that day. I think it was the day she realized what was happening.
OK, enough of this. I need to try to think about something else. I will do my best to try to post more often, and hopefully about happier things, like what the bunnies have done lately. But now I have to go. My mother just woke up, and she wants more chocolate milk.
When she was at the local hospice facility in March, they tried to weigh her. It's not easy to weigh someone who can't stand on her own, but they came up with a guesstimated weight of 72 pounds (less than 33 kg). I'm pretty sure she's below 70 lbs. now, probably closer to 60 lbs. She's very frail, which is not at all like her. It's probably a good thing she's so small to begin with (4'10"); otherwise, it would be much more difficult for my brother and me to take care of her without help. Hospice has been a wonderful resource, but they can't be here all the time. It would be easier to put her in a nursing home and forget about her, but we made a promise to our dad and to Mom that we would do everything we could to keep her out of those places.
She's always been a little powerhouse, but not now. I think she's given up. And that's not necessarily a bad thing. She's had no quality of life for some months now. Her decline has been what is frequently described as "downhill on roller skates". I hate watching what this disease has done to her, but as much as I want my mother back like she was, I know this isn't possible, and I just wish it was over for her. She's not in any pain; the medication takes care of that. She doesn't seem to be having any scary hallucinations; different medication takes care of that. And she knows my brother and me, which is comforting.
She had a bad Parkinson lockup the other night, in which she folded up (chest to knees in her chair, like she was trying to pick up something from the floor), and she couldn't sit up again. I tried for about an hour and a half to help her by giving her the Parkinson medication, her pain medication, a heating pad to her back, massage, anything I could do to try to help, and it was all useless. My brother and I finally put her to bed, figuring that if she could lay on her side, she could at least breathe a little easier, and maybe the Parkinson med would kick in sometime during the night. She was less stiff in the morning, but unresponsive, and she cried out like an injured animal when the hospice aide tried to get her washed up. She came to a little that evening, and spent about 45 minutes in the living room with my brother and me, but that was it.
It's weird, but the hospice nurse tells me it's not unexpected, to see her go from being unresponsive one day, to being up and alert the next. It almost gives me a little hope that maybe this isn't "it", but I know better. I see her slipping away a little more all the time. It tears me up, so much that I can't keep the tears away, and I know it distresses her when she sees me crying. I make an excuse, but I think she knows. One one of the nurse's most recent visits, she claimed she wasn't in any pain... yet. I don't want her to have pain. She cried a lot that day. I think it was the day she realized what was happening.
OK, enough of this. I need to try to think about something else. I will do my best to try to post more often, and hopefully about happier things, like what the bunnies have done lately. But now I have to go. My mother just woke up, and she wants more chocolate milk.
Tuesday, March 22, 2011
A short update
Well, my mother is home from the hospice facility. They changed her medication around a bit, and not for the better. We've changed them back to her pre-hospice state, which seemed to work better for her. She seems to be sleeping more lately, which could just be a phase, or it could be a decline. She fell again this morning; that makes it every day but one since she came home that she's fallen. She's such a tiny thing, less than 5 feet tall and just over 70 lbs., and she's got bruises and abrasions and skin tears all over her poor body from the falls. It tears us up.
Tuesday, March 15, 2011
Sad Stuff
So I've been in an unpleasant mood all day. Not angry, just very, very sad. I hate when I feel this way.
It's like this. My mother has atypical Parkinson's disease, with associated dementia. This first really manifested last May, when she apparently decided she hated both my brother and me, and we were trying to kill her by poisoning her food. She told us she'd contacted the United Nations about this, and her mother as well (my mom is 89 years old, and her mother has been gone since I was about 8). She wanted to call the police. She wanted to go home. She got me mixed up with her sister-in-law, and my brother suddenly became her brother. This all happened over a period of about 2 weeks. We talked to her primary care physician, who is also a good friend, who suggested that maybe we could get her into hospice care. She checked into it, and found that Mom qualified for hospice. Yay! Maybe some help for my bro and me. Mom, too.
A hospice nurse came up on a Thursday to do the intake interview. By the following Tuesday, Mom's situation was so untenable at home that we contacted her regular hospice nurse, who had only met her the day before, and asked her what we could do. She suggested we try to get her into the hospice facility associated with her organization, about 2 hours away from where we live. She looked into it, and found that there was a bed available, and so Mom was transferred by ambulance to the hospice house. She was not happy about it.
She spent about two and a half weeks at the hospice house, getting her meds tweaked, and it seemed to have worked. We got her home, and she was much happier. Haloperidol is a wonderful drug. The rest of the summer was much easier on all of us. Then came October.
At the end of October, Mom lost the ability to use her left side. I don't think it was a stroke. My brother called me at work and asked me to come home early, because she wasn't able to use her left side, so I brought my paramedic partner home in the work truck, and he evaluated her. We both agreed that it didn't look like a stroke, because by this time she was able to move, and there were no other "strokey" symptoms. Because Parkinson's disease is such a strange thing, we decided that it was probably an odd manifestation of her PD. Of course, she didn't want to go to the hospital, and we didn't really see a reason for taking her, being on hospice and all. So we decided to watch and wait. Well, things happened after I got off shift, and I ended up having to go on 2 other EMS calls, and when I finally got home at 1:30 in the morning and went to check on Mom, I found her on the floor of her bedroom, with her right leg in a strange position. Back in 2002, when the PD was first starting out, she fell and broke her right hip, and eventually (long story) had to have it replaced. Well, when she fell this night, she dislocated her replacement hip, and because there was no way I was going to be able to do anything with it at home, we had to take her to the hospital by ambulance. Yay.
She had to go to the operating room to have the dislocation reduced. We were at the hospital all night and most of the next day, and a few days later we finally managed to get her home. The doc at the hospital kept talking about long-term care (i.e., a nursing home), and we kept telling him that she was a hospice patient. We finally had to get hospice to call and tell him that she was going home with us. Not fun, especially when I work for the hospital.
Over the next few months, she dislocated that same hip a total of four times, with three of those dislocations needing an OR visit for reduction. An OR visit that needed anesthesia each time, which really screws with people with dementia. She managed to get through it pretty well each time, though. But over the past few months, we've noticed changes. Not anything that most people would notice, but we do, since we've been living with it for so long. She's been getting more demanding, and the dementia seems to be progressing. She talks about seeing her parents, like they're going to walk through the door any minute. She talks about her siblings like they're all still alive, especially her only sister, who died some years ago. She's forgotten that she no longer is able to walk, and that my brother and I have been moving her around for months. She's been falling daily, sometimes multiple times. And she doesn't really know where she's living. She still thinks she's in her hometown in NJ, when before she knew she was in a different state.
We'd been talking about this with her hospice nurse, and with the chaplain (yeah, I know), and the nurse especially could see changes. She could see the toll it was taking on my brother especially, and on me. She made a case to get her into the hospice facility again, which happened about a week and a half ago. The doctor didn't really know what they could do for her, but he agreed to try and help.
I got the call this morning. She's being released tomorrow. They didn't see the agitation there that we've been seeing at home. She's ready to come home.
This is going to sound really awful, but it's been nice with her being away. I've actually slept pretty well, not waking at every little sound and lying in bed to see if I can tell if she's fallen out of bed, or if she's throwing things at the imaginary people who are trying to imprison her. I feel almost free, for the first time in my life. And now she's coming home. And a black cloud has been following me all day, dreading what I fear will happen when she gets home.
This is where I get on my soapbox. I suspect this will not be a popular opinion, especially with the more religious people in this country, but I really don't give a fuck. But unless you've lived with something like this, watching a beloved parent/relative/friend waste away, seeing them struggle with things that used to be so easy for them, losing their identity, losing all function, especially when they were so active previously, you really don't know what this is about. She has no pain. She has no other medical problems; only the Parkinson's disease and the dementia. But that's enough. She has looked at me enough times, in her rare moments of clarity, when she is unable to do anything for herself, and has told me, "Just let me die!" I wish I could help you, Mom. It would be the kindest thing. I love you, but I hate seeing what has happened to you. And these images, and the experiences of the past year, will cloud all the memories I have of you, just like the memories of Daddy's last days cloud the memories I have of him. This totally sucks. And anybody who says that this is god's way of testing us/her, I say this: Fuck off.
It's like this. My mother has atypical Parkinson's disease, with associated dementia. This first really manifested last May, when she apparently decided she hated both my brother and me, and we were trying to kill her by poisoning her food. She told us she'd contacted the United Nations about this, and her mother as well (my mom is 89 years old, and her mother has been gone since I was about 8). She wanted to call the police. She wanted to go home. She got me mixed up with her sister-in-law, and my brother suddenly became her brother. This all happened over a period of about 2 weeks. We talked to her primary care physician, who is also a good friend, who suggested that maybe we could get her into hospice care. She checked into it, and found that Mom qualified for hospice. Yay! Maybe some help for my bro and me. Mom, too.
A hospice nurse came up on a Thursday to do the intake interview. By the following Tuesday, Mom's situation was so untenable at home that we contacted her regular hospice nurse, who had only met her the day before, and asked her what we could do. She suggested we try to get her into the hospice facility associated with her organization, about 2 hours away from where we live. She looked into it, and found that there was a bed available, and so Mom was transferred by ambulance to the hospice house. She was not happy about it.
She spent about two and a half weeks at the hospice house, getting her meds tweaked, and it seemed to have worked. We got her home, and she was much happier. Haloperidol is a wonderful drug. The rest of the summer was much easier on all of us. Then came October.
At the end of October, Mom lost the ability to use her left side. I don't think it was a stroke. My brother called me at work and asked me to come home early, because she wasn't able to use her left side, so I brought my paramedic partner home in the work truck, and he evaluated her. We both agreed that it didn't look like a stroke, because by this time she was able to move, and there were no other "strokey" symptoms. Because Parkinson's disease is such a strange thing, we decided that it was probably an odd manifestation of her PD. Of course, she didn't want to go to the hospital, and we didn't really see a reason for taking her, being on hospice and all. So we decided to watch and wait. Well, things happened after I got off shift, and I ended up having to go on 2 other EMS calls, and when I finally got home at 1:30 in the morning and went to check on Mom, I found her on the floor of her bedroom, with her right leg in a strange position. Back in 2002, when the PD was first starting out, she fell and broke her right hip, and eventually (long story) had to have it replaced. Well, when she fell this night, she dislocated her replacement hip, and because there was no way I was going to be able to do anything with it at home, we had to take her to the hospital by ambulance. Yay.
She had to go to the operating room to have the dislocation reduced. We were at the hospital all night and most of the next day, and a few days later we finally managed to get her home. The doc at the hospital kept talking about long-term care (i.e., a nursing home), and we kept telling him that she was a hospice patient. We finally had to get hospice to call and tell him that she was going home with us. Not fun, especially when I work for the hospital.
Over the next few months, she dislocated that same hip a total of four times, with three of those dislocations needing an OR visit for reduction. An OR visit that needed anesthesia each time, which really screws with people with dementia. She managed to get through it pretty well each time, though. But over the past few months, we've noticed changes. Not anything that most people would notice, but we do, since we've been living with it for so long. She's been getting more demanding, and the dementia seems to be progressing. She talks about seeing her parents, like they're going to walk through the door any minute. She talks about her siblings like they're all still alive, especially her only sister, who died some years ago. She's forgotten that she no longer is able to walk, and that my brother and I have been moving her around for months. She's been falling daily, sometimes multiple times. And she doesn't really know where she's living. She still thinks she's in her hometown in NJ, when before she knew she was in a different state.
We'd been talking about this with her hospice nurse, and with the chaplain (yeah, I know), and the nurse especially could see changes. She could see the toll it was taking on my brother especially, and on me. She made a case to get her into the hospice facility again, which happened about a week and a half ago. The doctor didn't really know what they could do for her, but he agreed to try and help.
I got the call this morning. She's being released tomorrow. They didn't see the agitation there that we've been seeing at home. She's ready to come home.
This is going to sound really awful, but it's been nice with her being away. I've actually slept pretty well, not waking at every little sound and lying in bed to see if I can tell if she's fallen out of bed, or if she's throwing things at the imaginary people who are trying to imprison her. I feel almost free, for the first time in my life. And now she's coming home. And a black cloud has been following me all day, dreading what I fear will happen when she gets home.
This is where I get on my soapbox. I suspect this will not be a popular opinion, especially with the more religious people in this country, but I really don't give a fuck. But unless you've lived with something like this, watching a beloved parent/relative/friend waste away, seeing them struggle with things that used to be so easy for them, losing their identity, losing all function, especially when they were so active previously, you really don't know what this is about. She has no pain. She has no other medical problems; only the Parkinson's disease and the dementia. But that's enough. She has looked at me enough times, in her rare moments of clarity, when she is unable to do anything for herself, and has told me, "Just let me die!" I wish I could help you, Mom. It would be the kindest thing. I love you, but I hate seeing what has happened to you. And these images, and the experiences of the past year, will cloud all the memories I have of you, just like the memories of Daddy's last days cloud the memories I have of him. This totally sucks. And anybody who says that this is god's way of testing us/her, I say this: Fuck off.
Monday, March 7, 2011
Hello
So, I guess this is my first blog post, and I should introduce myself. I am The Skeptical Bunny, which obviously isn't my real name, but who really cares, right? I chose this name for myself because I am a skeptic, and I love bunnies. Odd how that works.
I'll talk about the bunnies first. I have, at present, 16 of them. Sixteen bunnies, two guinea pigs, two cats, and a new dog. I'll probably post photos at some point. All the buns are litter box trained. They live in my bedroom, in their own condos. Some of them I've raised by hand, some have been given to me by friends who can no longer take care of them for one reason or another, and some have been rescued from either the local animal shelter, or from a local pet supply store. During the day they're mostly free-range, and they generally get along pretty well. Occasionally they have little spats, but it never amounts to much, just some pulled fur. I love them all. Weird, I know. Maybe obsessive. I don't care. They keep me sane most of the time.
The skeptic thing will have to wait for another post. It's kind of a long story.
Now about me, personally: I am, at present, living in the family home with my mother and my younger brother. Yes, I am over 40, so it's somewhat strange, but once again, I don't care. We have always been a close family, with a big sense of duty to each other. My father died some years ago, and my brother and I both promised him that we would take care of our mother, and that's what we're doing. Mom has Parkinson disease (PD) and associated dementia, which sucks mightily. She is on hospice care; we don't know how much longer she'll be around. Once again, this will have to wait for another post, because I have very strong feelings about this.
I guess that will have to be it for now. Feel free to contact me, and I hope you enjoy my stories!
I'll talk about the bunnies first. I have, at present, 16 of them. Sixteen bunnies, two guinea pigs, two cats, and a new dog. I'll probably post photos at some point. All the buns are litter box trained. They live in my bedroom, in their own condos. Some of them I've raised by hand, some have been given to me by friends who can no longer take care of them for one reason or another, and some have been rescued from either the local animal shelter, or from a local pet supply store. During the day they're mostly free-range, and they generally get along pretty well. Occasionally they have little spats, but it never amounts to much, just some pulled fur. I love them all. Weird, I know. Maybe obsessive. I don't care. They keep me sane most of the time.
The skeptic thing will have to wait for another post. It's kind of a long story.
Now about me, personally: I am, at present, living in the family home with my mother and my younger brother. Yes, I am over 40, so it's somewhat strange, but once again, I don't care. We have always been a close family, with a big sense of duty to each other. My father died some years ago, and my brother and I both promised him that we would take care of our mother, and that's what we're doing. Mom has Parkinson disease (PD) and associated dementia, which sucks mightily. She is on hospice care; we don't know how much longer she'll be around. Once again, this will have to wait for another post, because I have very strong feelings about this.
I guess that will have to be it for now. Feel free to contact me, and I hope you enjoy my stories!
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