Mom spent the last week in the hospital; the rehab. sent her back because her white count jumped from 7.5 up to ~20 or so. Turned out to be Vancomycin-resistant enterococcus.
After some serious insanity, she is now back at the same rehab. she was in before.
I came home for three days to work and get some of my shit together, going back down to LI tonight. We need to assess our options.
Monday, July 14, 2008
Tuesday, July 01, 2008
update for those of you who are interested
So. Yesterday I drove back up to New Paltz, and I went over the mountain this afternoon to do some work at my boss’s house. I worked for a few hours, and during the course of the day I saw two mouse families who scurried to safety from under a tarp, several LARGE spiders, many carrying around egg sacs, and a gorgeous, inquisitive snake that was practically fearless, who came right out of a pile of siding and inspected me as I was inspecting it. Tonight I took a short walk and watched a satellite skim across a starry sky and felt the cool night breeze on my skin. It was a way to recharge some rapidly depleting emotional and psychological batteries. I’m going back down to Long Island tomorrow early in the afternoon.
As I have said before on this blog, I generally stray from the really personal stuff, preferring instead to stick to interesting articles related to my field, some brief poems, lots of photographs, and other related stuff. But some of you have caught wind of things that have been brewing over the past months, and I thought that I’d write a little about those happenings both for you, in order to keep those interested and concerned up-to-date with the ongoing situation, and as a sort of process for myself to help crystallize a maelstrom of thought that hasn’t seemed to abate, and in fact, seems to be worsening.
Earlier this year, my father (who recently turned 80) had chest pains and went into the hospital for what we thought was going to be a routine catheterization, and ended up being a triple-bypass with a stay in a sub-acute rehabilitation facility. He managed to get himself back in fine fettle with a little work and a lot of love. This occurred during the Spring semester, and I cannot thank my colleagues and friends enough for their understanding, love and support during what was a very trying time for me, as I was juggling my home issues with teaching a Composition section and taking my own grad. classes. Part of the complexity of the situation was that my father was, in some manner, a care-giver or help-mate or whatever we might choose to call it for my mother, who is in her 70s. My father was fortunate to go to the University Medical Center at Stony Brook, a hospital that I CANNOT RECOMMEND HIGHLY ENOUGH. His treatment, from the moment he went in to the moment he was discharged, was superlative at every level, and so was the treatment offered to me—as a relative, an advocate, and as a person, I was also extended every courtesy, and I will praise them to the heavens given half a chance. More on this in a bit.
A little bit about mom: she has fought with Rheumatoid Arthritis for ~30 years, and I have watched this disease wear her down for all this time. She has had knuckles replaced, ankle fusions, surgery after surgery for many years, and I have witnessed it all. She’s a fighter, and she’s managed to maintain her independence in the face of overwhelming adversity. R.A. is an insidious disease, and its severity varies from person to person, and unfortunately my mother (according to numerous specialists, including two amazing rheumatologists) was dealt a particularly bad hand with regard to the damage it has done to her. She’s been on a cocktail of meds for a long time, including gold salts in the 80’s, methotrexate, prednisone for as long as I can remember, and until a few years ago, a heavy dose of a prescription NSAIDs that she had to discontinue because her liver couldn’t take it anymore. She’s on Enbrel now, along with a TON of analgesics, primarily narcotics, still the prednisone, and some others. All of these drugs have side effects, some worse than others.
She was admitted to a hospital several months ago for cellulitis in her legs, mostly in her shins. She’s had weeping edema in that general area, and the swelling, combined with paper-thin skin from the years of prednisone led to some infections that spread pretty rapidly (also due to her weakened immune system, both from the drugs, her age, and the disease itself, which is a form of auto-immune disorder where the body attacks itself, basically eating one’s own joints away). We managed to get that under control, but frankly, the hospital she was admitted to SUCKED (I’ll give you a hint which one—it’s in Port Jefferson, NY, and it’s named John T. Mather Memorial Hospital. It used to be wonderful, but now it’s shit.) She came out of there worse than she went in. The level of care was terrible, and she left with pressure sores and all sorts of other issues.
The situation now is unrelated to that stay, but I mention it because it is part of the bigger picture. Her stay in that hospital set her back a bit in terms of her overall physical ability—she lost some muscle tone that she never managed to quite recover, and in hindsight, she probably ought to have been sent to a sub-acute rehab. after her hospital stay then. I spent some time taking care of her after she was released from the hospital, because it was at this point that my father went in for his stay.
So, mom went in to the hospital some time in March of 2008, dad went in later in the month. I have everything written down, but I can’t find all the notes right now. They both recovered, mostly, and that was that.
I spoke with my mom on Thursday, 6.5.2008, and she told me she felt sick; she didn’t feel like talking. She had gone out to dinner with my dad and his brother, who they hadn’t seen in a while, and she thought she might had gotten food poisoning. I told her to call me when she felt better, or I’d call in a day or two.
My parents live in an “Independent Senior Living Community,” which is ~150 apartments under one roof, and they are provided a continental breakfast and a sit-down dinner everyday, as well as organized activities, entertainment (they just purchased a Nintendo Wii a few months ago for what amounts to Senior Wii parties), and other activities like outings and excursions to the mall, etc. Each apartment has a refrigerator, stove, and other amenities, and there are laundry facilities on each floor—two washers, two dryers, an ironing board, an iron. It’s pretty well set-up, with a small library and ten or twelve internet-connected terminals, movies on a giant-screen projection-type television, and other things to occupy the residents. There’s a feeling of community there, and a great deal of social interation. I’m happy for my parents that they managed to find such a nice place to live, after they sold their house. There are support staff there all the time, cleaning, keeping tabs on residents, and notifying family members of issues that need to be addressed. They are all wonderful, committed people, and I’m thankful that they are there as well.
Friday night, I was doing laundry at a local 24-hour Laundromat; I had waited until later because the daytime temperatures were in the high 90s. At 11:30pm, I got a call from a staff member that my mother had taken a fall, and that they had requested “lift-assistance.” What this means is that they called the fire department—despite having support staff on site, they don’t deal with issues like this. Further, the paramedics that came determined that my mother was “unresponsive,” and needed to go to the hospital. Fortunately, I was able to direct the parameds to take my mother to the University Hospital I spoke so highly of before.
The story is VERY long, but the short version is this (not like this whole story hasn’t been long enough as it is . . .). When my mother was brought in, she was in septic shock from a massive internal infection, and she stayed in the hospital from the seventh of June to the nineteenth. Her care was amazing, just as my father’s was when he was there, and again, I am truly thankful that there are such proficient, talented, and caring people over there. This time she was recommended for sub-acute rehab upon discharge, and that’s where she is now. She has been there since the 19th.
Her major issues were/are: no control/lack of muscle tone on the right side (which unfortunately is her dominant side) to the point of flaccidity, weakness on her left side, and profound weakness in her legs. Prior to all of this new stuff, she had been working once or twice a week with a physical therapist, but all of the time spent in bed undermined any gains she had made.
The biggest problem though is that once she got into the rehab, things seemed to be getting better. Then the Physical Therapists got to her and fucked her up. Apologies for the vulgarity, but that’s exactly what they did. They were a bit overzealous, and they worked her left wrist a bit much, which became inflamed and agonizingly painful, and I’ve been at her bedside with icepacks trying to fix the damage they did. I’m also feeding her, as she’s lost the ability to do ANYTHING with her hands—she can’t really even push the call button for an RN or a CNA, so her roommate (who is wonderful by the way) calls for her.
It’s sad, because she’s sharp as a tack mentally, and it must be hellish to be aware and watch your body melt down around you. I’m trying to be with her all the time, but there’s only so much that I can do—I’m trying to be her advocate (although the staff at the rehab is pretty good, the only problem is getting everyone on the same page; a lot of the staff are per diem workers, and so don’t have a chance to become familiarized with the individual patient’s situations.) I’m also trying to make sure that my father is okay by himself—he is, mostly, but he’s slowing down and there are a bunch of things that he either won’t do or doesn’t know how to do, and so I’m trying to maintain all the finances and the bills and the mail and all that.
In the midst of trying to be my mom’s emotional and physical support, as well as my father’s, I’m also serving other masters—I’m committed to doing some editorial work over the summer, and I’m an assistant to a woodworker/restorer who depends upon me to keep our shop running smoothly. I’m trying to make everyone happy, and I’m going to snap if I can’t figure out a way to juggle all of this stuff. Did I mention I’m an only child? Yeah, there’s that too. I’m not going to get all “poor me, poor me,” but it is a rough road.
I know this is long and rambling, and if it doesn’t cohere, I apologize, but it’s a way for me to vent, to update those of you who weren’t aware of what was happening, and a way of keeping up with those of you who were aware. There’s SO much more to this story, but perhaps I’ll post more later. This is all surface that I’m speaking about right now—there’s so much more running under the surface that I want to address, stuff that I perhaps ought not to post on a public weblog, and yet . . . I really want to say some of it out loud. Some of it needs to be said, and some of it I suppose must remain private, occult, away from those who cannot know what this is like. I've been up and down and up and down (both emotionally and geographically) and most of the time I don't even know what day it is anymore. There have been other, smaller sub-dramas, like the car breaking down and stuff like that, but all that pales in the face of what the overall situation is. I have a small support network, and Malorie has been amazing--AMAZING, but I can't help but feel alone in this in many ways. Perhaps more on this in the coming days, as I am able to continue processing what's happening.
I’m not asking for much, just maybe send me (and mom) some healing energy or white light, or something.
More later, I suppose.
As I have said before on this blog, I generally stray from the really personal stuff, preferring instead to stick to interesting articles related to my field, some brief poems, lots of photographs, and other related stuff. But some of you have caught wind of things that have been brewing over the past months, and I thought that I’d write a little about those happenings both for you, in order to keep those interested and concerned up-to-date with the ongoing situation, and as a sort of process for myself to help crystallize a maelstrom of thought that hasn’t seemed to abate, and in fact, seems to be worsening.
Earlier this year, my father (who recently turned 80) had chest pains and went into the hospital for what we thought was going to be a routine catheterization, and ended up being a triple-bypass with a stay in a sub-acute rehabilitation facility. He managed to get himself back in fine fettle with a little work and a lot of love. This occurred during the Spring semester, and I cannot thank my colleagues and friends enough for their understanding, love and support during what was a very trying time for me, as I was juggling my home issues with teaching a Composition section and taking my own grad. classes. Part of the complexity of the situation was that my father was, in some manner, a care-giver or help-mate or whatever we might choose to call it for my mother, who is in her 70s. My father was fortunate to go to the University Medical Center at Stony Brook, a hospital that I CANNOT RECOMMEND HIGHLY ENOUGH. His treatment, from the moment he went in to the moment he was discharged, was superlative at every level, and so was the treatment offered to me—as a relative, an advocate, and as a person, I was also extended every courtesy, and I will praise them to the heavens given half a chance. More on this in a bit.
A little bit about mom: she has fought with Rheumatoid Arthritis for ~30 years, and I have watched this disease wear her down for all this time. She has had knuckles replaced, ankle fusions, surgery after surgery for many years, and I have witnessed it all. She’s a fighter, and she’s managed to maintain her independence in the face of overwhelming adversity. R.A. is an insidious disease, and its severity varies from person to person, and unfortunately my mother (according to numerous specialists, including two amazing rheumatologists) was dealt a particularly bad hand with regard to the damage it has done to her. She’s been on a cocktail of meds for a long time, including gold salts in the 80’s, methotrexate, prednisone for as long as I can remember, and until a few years ago, a heavy dose of a prescription NSAIDs that she had to discontinue because her liver couldn’t take it anymore. She’s on Enbrel now, along with a TON of analgesics, primarily narcotics, still the prednisone, and some others. All of these drugs have side effects, some worse than others.
She was admitted to a hospital several months ago for cellulitis in her legs, mostly in her shins. She’s had weeping edema in that general area, and the swelling, combined with paper-thin skin from the years of prednisone led to some infections that spread pretty rapidly (also due to her weakened immune system, both from the drugs, her age, and the disease itself, which is a form of auto-immune disorder where the body attacks itself, basically eating one’s own joints away). We managed to get that under control, but frankly, the hospital she was admitted to SUCKED (I’ll give you a hint which one—it’s in Port Jefferson, NY, and it’s named John T. Mather Memorial Hospital. It used to be wonderful, but now it’s shit.) She came out of there worse than she went in. The level of care was terrible, and she left with pressure sores and all sorts of other issues.
The situation now is unrelated to that stay, but I mention it because it is part of the bigger picture. Her stay in that hospital set her back a bit in terms of her overall physical ability—she lost some muscle tone that she never managed to quite recover, and in hindsight, she probably ought to have been sent to a sub-acute rehab. after her hospital stay then. I spent some time taking care of her after she was released from the hospital, because it was at this point that my father went in for his stay.
So, mom went in to the hospital some time in March of 2008, dad went in later in the month. I have everything written down, but I can’t find all the notes right now. They both recovered, mostly, and that was that.
I spoke with my mom on Thursday, 6.5.2008, and she told me she felt sick; she didn’t feel like talking. She had gone out to dinner with my dad and his brother, who they hadn’t seen in a while, and she thought she might had gotten food poisoning. I told her to call me when she felt better, or I’d call in a day or two.
My parents live in an “Independent Senior Living Community,” which is ~150 apartments under one roof, and they are provided a continental breakfast and a sit-down dinner everyday, as well as organized activities, entertainment (they just purchased a Nintendo Wii a few months ago for what amounts to Senior Wii parties), and other activities like outings and excursions to the mall, etc. Each apartment has a refrigerator, stove, and other amenities, and there are laundry facilities on each floor—two washers, two dryers, an ironing board, an iron. It’s pretty well set-up, with a small library and ten or twelve internet-connected terminals, movies on a giant-screen projection-type television, and other things to occupy the residents. There’s a feeling of community there, and a great deal of social interation. I’m happy for my parents that they managed to find such a nice place to live, after they sold their house. There are support staff there all the time, cleaning, keeping tabs on residents, and notifying family members of issues that need to be addressed. They are all wonderful, committed people, and I’m thankful that they are there as well.
Friday night, I was doing laundry at a local 24-hour Laundromat; I had waited until later because the daytime temperatures were in the high 90s. At 11:30pm, I got a call from a staff member that my mother had taken a fall, and that they had requested “lift-assistance.” What this means is that they called the fire department—despite having support staff on site, they don’t deal with issues like this. Further, the paramedics that came determined that my mother was “unresponsive,” and needed to go to the hospital. Fortunately, I was able to direct the parameds to take my mother to the University Hospital I spoke so highly of before.
The story is VERY long, but the short version is this (not like this whole story hasn’t been long enough as it is . . .). When my mother was brought in, she was in septic shock from a massive internal infection, and she stayed in the hospital from the seventh of June to the nineteenth. Her care was amazing, just as my father’s was when he was there, and again, I am truly thankful that there are such proficient, talented, and caring people over there. This time she was recommended for sub-acute rehab upon discharge, and that’s where she is now. She has been there since the 19th.
Her major issues were/are: no control/lack of muscle tone on the right side (which unfortunately is her dominant side) to the point of flaccidity, weakness on her left side, and profound weakness in her legs. Prior to all of this new stuff, she had been working once or twice a week with a physical therapist, but all of the time spent in bed undermined any gains she had made.
The biggest problem though is that once she got into the rehab, things seemed to be getting better. Then the Physical Therapists got to her and fucked her up. Apologies for the vulgarity, but that’s exactly what they did. They were a bit overzealous, and they worked her left wrist a bit much, which became inflamed and agonizingly painful, and I’ve been at her bedside with icepacks trying to fix the damage they did. I’m also feeding her, as she’s lost the ability to do ANYTHING with her hands—she can’t really even push the call button for an RN or a CNA, so her roommate (who is wonderful by the way) calls for her.
It’s sad, because she’s sharp as a tack mentally, and it must be hellish to be aware and watch your body melt down around you. I’m trying to be with her all the time, but there’s only so much that I can do—I’m trying to be her advocate (although the staff at the rehab is pretty good, the only problem is getting everyone on the same page; a lot of the staff are per diem workers, and so don’t have a chance to become familiarized with the individual patient’s situations.) I’m also trying to make sure that my father is okay by himself—he is, mostly, but he’s slowing down and there are a bunch of things that he either won’t do or doesn’t know how to do, and so I’m trying to maintain all the finances and the bills and the mail and all that.
In the midst of trying to be my mom’s emotional and physical support, as well as my father’s, I’m also serving other masters—I’m committed to doing some editorial work over the summer, and I’m an assistant to a woodworker/restorer who depends upon me to keep our shop running smoothly. I’m trying to make everyone happy, and I’m going to snap if I can’t figure out a way to juggle all of this stuff. Did I mention I’m an only child? Yeah, there’s that too. I’m not going to get all “poor me, poor me,” but it is a rough road.
I know this is long and rambling, and if it doesn’t cohere, I apologize, but it’s a way for me to vent, to update those of you who weren’t aware of what was happening, and a way of keeping up with those of you who were aware. There’s SO much more to this story, but perhaps I’ll post more later. This is all surface that I’m speaking about right now—there’s so much more running under the surface that I want to address, stuff that I perhaps ought not to post on a public weblog, and yet . . . I really want to say some of it out loud. Some of it needs to be said, and some of it I suppose must remain private, occult, away from those who cannot know what this is like. I've been up and down and up and down (both emotionally and geographically) and most of the time I don't even know what day it is anymore. There have been other, smaller sub-dramas, like the car breaking down and stuff like that, but all that pales in the face of what the overall situation is. I have a small support network, and Malorie has been amazing--AMAZING, but I can't help but feel alone in this in many ways. Perhaps more on this in the coming days, as I am able to continue processing what's happening.
I’m not asking for much, just maybe send me (and mom) some healing energy or white light, or something.
More later, I suppose.
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