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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