"Florence, this is my husband, Karl. Karl, this is Florence. She was at game night."
"Oh, yes," Florence says, "I recognize you."
Unfortunately, that's what I thought. At game night at our church, I told a group of women that my husband had a degenerative brain injury. I showed them pictures of my kids. Florence said she thought she knew my husband.
"He brings the kids downstairs for class? You can kind of tell about him?" Florence said.
Yes, apparently now you can kind of tell that Karl has some cognitive impairments. Until now, I found the phrase "he seems normal" painful. It was painful to have to defend Karl by explaining that he has brain damage. Only now that I see the phrase "he seems normal" slipping away, do I realize what the alternative is. The alternative to "he seems normal" is "something is wrong with him."
Today Karl had an appointment with neuro-psych. He was again told that concussions can't cause long term damage. I did not go to the doctor's appointment and I regret it now. Karl will not argue with doctors when they give outdated information. He just rolls his eyes. I will fight. I also regret not finishing the TBI for Dummies handout yet. I am going to make it a priority this weekend.
At his appointment he was given referrals for chiropractic and acupuncture, both of whom will contact him, and a doctor to give him knee braces, whom he must contact. He was also given a referral to speech pathology, who will presumably contact him, he was a little hazy on that. I am confused by this last referral. Speech pathology is the department that handles TBI. If he doesn't have TBI, just "depression" or "anxiety," then why are they sending him to the department that handles TBI?
Karl also brought me home a metaphorical gold star from the VA. Another one. Routinely when he talks to doctors, he comes home and tells me the doctors are happy with what we're doing. Today the neuro-psychologist was happy about our ways of managing Karl's pain. Instead of narcotics, he uses medical marijuana. However, he is still getting a referral for knee braces, chiropractic and acupuncture... because he is still in constant pain. I don't think narcotics would help, plus they bring their own side effects and pitfalls. Hopefully chiropractic, acupuncture and knee braces will help.
I am glad that we're moving forward with pain management. I am furious that we're moving backwards with brain health. I would say we're at a standstill, but it's more like everyone else is standing still watching Karl careen wildly down a hill in a car with no brakes. I have tons of metaphors for the absolute inaction of everyone else while Karl is sliding downhill. I am the one trying to flag down the train or get a trampoline under a window of a burning building he is trapped inside or find an extra lifeboat. I am the one trying to save Karl while all the doctors stand around slack-jawed, unaware that there is a train heading towards a cliff or a building on fire or a ship sinking. Sometimes I feel like I must be going crazy because I am the only one who sees the crashing train, burning building, sinking ship. Maybe they do not exist.
I am a five time college drop out. I have left community colleges for good reasons and I have left notable universities on a whim. I have finished the semester before leaving and I have withdrawn from all my classes after a week or half the semester. Once I quit Baylor University because I wanted to enjoy my summer. Once I quit McLennan Community College because my roommates moved out and left me in a lurch and I needed to get a job to pay my bills. Once I quit the University of Louisiana, Lafayette to move to California on a greyhound bus for fun. Once I quit McLennan Community College because I was pregnant. Last year I quit Austin Community College because there were no classes that I liked that would work with the time I had available.
I don't think a college education is necessarily an indication that people are smarter than me. Some people with degrees are smarter than me and some are not. That is not the point. The point is, if a five time college dropout can figure out, by googling, that concussions can be cumulative and that a single concussion can cause permanent degenerative brain damage, why can't doctors whose area of expertise is the brain? I am discouraged by the repeated suggestion that I know best and that I am doing better than a doctor at treating my husband. I am furious that a five time college drop out with a laptop is more knowledgeable than someone who spent over a decade in college to become a brain doctor. Those doctors should be furious too. They should be furious that their education left them unequipped to help people who desperately need their help.
And they should learn how to google.
Thursday, October 24, 2013
Wednesday, October 16, 2013
day after day
Everyday I wake up and take my metabolism in a pill. Then, Monday through Friday, I tell the kids to get dressed and eat breakfast. Karl makes coffee. I tell my oldest to pack their lunch. I get the kids' backpacks and make sure their folders are in them. I start my car to warm it up. The kids and I say goodbye to Karl and I drive them to their schools. I come home. There are papers and mail and clutter everywhere - our kitchen counter, our kitchen table, our coffee table. I pour myself a cup of coffee and ignore the clutter. I turn on my laptop, my TV, Netflix and sit on my couch.
Two hours later, I get up and go pick up my daughter from her half-day kindergarten. Some days I remember to bring her a snack, some days I forget. When we get home, she does 20 minutes of math practice online and then plays 20 minutes of Stack the States, Angry Birds or Where's my Water. Then she throws a fit about not getting to spend more time on my iPad.
Then Karl calls and tells me he's on the way home. He's had an art class and then an exercise class.
After Karl gets home, I leave to go pick up my eldest. When we get home, they do their homework. I either run errands or play games on my phone. Then I make dinner for the kids. After dinner, time speeds up. The kids need to take vitamins, brush teeth, put on jammies (every other night take a bath or shower), then they may read. Then it is time for hugs and kisses. Our eldest reads for another hour or so and our daughter listens to a playlist on my iPad. On Tuesday evenings Karl goes to a sword fighting group. On Thursday evenings, he goes to yoga and then choir at our church.
After the kids go to bed, I eat dinner, with Karl if he's home. Then I watch TV. Then I go to bed.
On Saturday and Sunday, I sleep later. I don't have to take the kids to school.
My life revolves around my ten hours alone a week. Yesterday I called a researcher from the University of Wisconsin. He studies, among other subjects, neuro and behavioral genetics. While looking for studies to include in my upcoming TBI for Dummies guide, I found an article wherein this man was quoted as calling TBI "neuro-degenerative." So I called him to ask where he got that information. He was, it turns out, primarily referencing CTE, which is a form of TBI.
My life revolves around my ten hours alone and my ten hours alone revolve around brain injuries. Karl goes to school and creates. He sings and exercises and plays with swords. I take vacations with friends or alone. I cut out at bedtime some evenings, driving aimlessly or talking for hours to friends on the phone. I take breaks from my work, but my life is my work and my work is my life.
Two hours later, I get up and go pick up my daughter from her half-day kindergarten. Some days I remember to bring her a snack, some days I forget. When we get home, she does 20 minutes of math practice online and then plays 20 minutes of Stack the States, Angry Birds or Where's my Water. Then she throws a fit about not getting to spend more time on my iPad.
Then Karl calls and tells me he's on the way home. He's had an art class and then an exercise class.
After Karl gets home, I leave to go pick up my eldest. When we get home, they do their homework. I either run errands or play games on my phone. Then I make dinner for the kids. After dinner, time speeds up. The kids need to take vitamins, brush teeth, put on jammies (every other night take a bath or shower), then they may read. Then it is time for hugs and kisses. Our eldest reads for another hour or so and our daughter listens to a playlist on my iPad. On Tuesday evenings Karl goes to a sword fighting group. On Thursday evenings, he goes to yoga and then choir at our church.
After the kids go to bed, I eat dinner, with Karl if he's home. Then I watch TV. Then I go to bed.
On Saturday and Sunday, I sleep later. I don't have to take the kids to school.
My life revolves around my ten hours alone a week. Yesterday I called a researcher from the University of Wisconsin. He studies, among other subjects, neuro and behavioral genetics. While looking for studies to include in my upcoming TBI for Dummies guide, I found an article wherein this man was quoted as calling TBI "neuro-degenerative." So I called him to ask where he got that information. He was, it turns out, primarily referencing CTE, which is a form of TBI.
My life revolves around my ten hours alone and my ten hours alone revolve around brain injuries. Karl goes to school and creates. He sings and exercises and plays with swords. I take vacations with friends or alone. I cut out at bedtime some evenings, driving aimlessly or talking for hours to friends on the phone. I take breaks from my work, but my life is my work and my work is my life.
Monday, October 14, 2013
TBI for dummies
"Do you think I'm getting worse?"
"I don't know. Do you think you're getting worse?"
How would I know? I don't even have the test results from Karl's neuro-psych testing three years ago. I have a few notes from his appointment for testing, but about halfway through the recording physician started referring to him by someone else's name. The notes indicate that his test results will be attached, but they aren't. Karl is scheduled for new neuro-psych testing but I have no way to compare the results to his previous results.
A year ago, I gave Karl some Alzheimer's assessments. This afternoon I repeated the tests. Yes, he is definitely getting worse. It is such a slow slide that it is hard to tell from day to day how much worse he is, but year to year you can tell. One of the Alzheimer's assessments involves counting how many fruits and animals the patient can name in two minutes. Patients with Alzheimer's typically name between 10 and 15 of each. Neuro-typical adults can name between 20 and 25 of each. I don't know how many of each Karl named last year but I know it was close to 20. This year, Karl named 11 animals and 13 fruits.
Another test Karl took today was the clock test. Karl has taken the clock test several times. It is a standard dementia test. Karl has taken this test at home and with physicians. Today Karl messed up the clock for the first time. He switched the six and nine on the clock face. There are errors that mean nothing on the clock test and errors that mean something. Any mixing up of numbers is an error that means something.
So, Karl is worse. I know it. He knows it. What I don't know is what to do about it.
"If we can tell, shouldn't someone else be able to tell?"
Well, yes. Someone else, a medical professional, should be able to tell. Unfortunately, Karl continually sees medical professionals who do less brain research than I do. One neurologist told Karl that if he hadn't been in a coma, he couldn't sustain long term damage from a blast. I was aghast and didn't reply. A neuro-psych professional told Karl there is no cumulative effect of multiple blasts. I joked with Karl that I should print some studies for her. Another neuro-psych professional told me that TBI is not degenerative. I provided him with a study tracking the degenerative effects of TBI.
This evening I have been floundering, frustrated with Karl's decline, unsure of what the next steps are. I have been researching when to limit daily living activities of people with dementia and Alzheimer's. There is a lot more advice about caregiving for people with dementia or Alzheimer's than about caregiving for people with degenerative TBIs. I am not sure how to care for someone with a TBI. I am making it up as I go and I feel alone.
Being constantly told by doctors and nurses that I am wrong is isolating. Even though I know that recent brain research backs me up, it is emotionally exhausting to be told that what I'm witnessing is medically impossible. Tonight I realized I can put together a binder of recent brain research. Even if I cannot attend Karl's appointments, he can take the binder with him. I am going to print out every relevant study on TBI I can find and put together a TBI for Dummies guide. If I can educate medical professionals, maybe I can stop other caregivers from feeling so isolated and emotionally exhausted.
Alzheimer's home assessment
Instructions for the fruit/animal assessment
"I don't know. Do you think you're getting worse?"
How would I know? I don't even have the test results from Karl's neuro-psych testing three years ago. I have a few notes from his appointment for testing, but about halfway through the recording physician started referring to him by someone else's name. The notes indicate that his test results will be attached, but they aren't. Karl is scheduled for new neuro-psych testing but I have no way to compare the results to his previous results.
A year ago, I gave Karl some Alzheimer's assessments. This afternoon I repeated the tests. Yes, he is definitely getting worse. It is such a slow slide that it is hard to tell from day to day how much worse he is, but year to year you can tell. One of the Alzheimer's assessments involves counting how many fruits and animals the patient can name in two minutes. Patients with Alzheimer's typically name between 10 and 15 of each. Neuro-typical adults can name between 20 and 25 of each. I don't know how many of each Karl named last year but I know it was close to 20. This year, Karl named 11 animals and 13 fruits.
Another test Karl took today was the clock test. Karl has taken the clock test several times. It is a standard dementia test. Karl has taken this test at home and with physicians. Today Karl messed up the clock for the first time. He switched the six and nine on the clock face. There are errors that mean nothing on the clock test and errors that mean something. Any mixing up of numbers is an error that means something.
So, Karl is worse. I know it. He knows it. What I don't know is what to do about it.
"If we can tell, shouldn't someone else be able to tell?"
Well, yes. Someone else, a medical professional, should be able to tell. Unfortunately, Karl continually sees medical professionals who do less brain research than I do. One neurologist told Karl that if he hadn't been in a coma, he couldn't sustain long term damage from a blast. I was aghast and didn't reply. A neuro-psych professional told Karl there is no cumulative effect of multiple blasts. I joked with Karl that I should print some studies for her. Another neuro-psych professional told me that TBI is not degenerative. I provided him with a study tracking the degenerative effects of TBI.
This evening I have been floundering, frustrated with Karl's decline, unsure of what the next steps are. I have been researching when to limit daily living activities of people with dementia and Alzheimer's. There is a lot more advice about caregiving for people with dementia or Alzheimer's than about caregiving for people with degenerative TBIs. I am not sure how to care for someone with a TBI. I am making it up as I go and I feel alone.
Being constantly told by doctors and nurses that I am wrong is isolating. Even though I know that recent brain research backs me up, it is emotionally exhausting to be told that what I'm witnessing is medically impossible. Tonight I realized I can put together a binder of recent brain research. Even if I cannot attend Karl's appointments, he can take the binder with him. I am going to print out every relevant study on TBI I can find and put together a TBI for Dummies guide. If I can educate medical professionals, maybe I can stop other caregivers from feeling so isolated and emotionally exhausted.
Alzheimer's home assessment
Instructions for the fruit/animal assessment
Saturday, October 12, 2013
war
Some days I feel like I am trying to consume war and other times I feel like it is consuming me. This morning I awoke to the news that a friend of mine's husband attempted suicide last night. He is a veteran, of course. Tonight he is in inpatient care at the VA. I am relieved for him and his wife. He has needed inpatient care for a long time. When he was ready for treatment before, the VA wouldn't admit him. When the VA was willing to admit him, he was unwilling to go. Now, finally, he is getting the help he desperately needs.
I hope it helps.
I was raised liberal and anti-war. I am still, generally, anti-war, but I understand there are more shades of gray than I could possibly see and I am glad I am not in charge of making decisions about war. So it is bewildering that my life revolves around war. It is exhausting that my life revolves around war.
I hope it helps.
I was raised liberal and anti-war. I am still, generally, anti-war, but I understand there are more shades of gray than I could possibly see and I am glad I am not in charge of making decisions about war. So it is bewildering that my life revolves around war. It is exhausting that my life revolves around war.
Wednesday, October 2, 2013
MY BIRTHDAY MONTH!
My favorite holiday is my birthday. It always has been. A few years ago for my birthday, I woke up early to go the gym. When I got home, my husband had planted three rose bushes for me. They had been hidden for days on the side of our house. I was completely surprised. It is the only time Karl has ever gotten me a good present for my birthday.
Typically what happens when my birthday comes around is that Karl has done nothing. I complain or tell Karl exactly what to get me. Karl goes and gets exactly what I said. He has said the reason he does nothing for my birthday is because he is scared of doing the wrong thing. There may be some validity to this. When Karl waits until the last minute and then buys exactly what I told him to, I am disappointed that he didn't put any thought into a gift. I am even more disappointed if he waits until the last minute, I tell him exactly what I want and then he gets a variation of what I wanted instead of exactly what I wanted. I feel like not only was he not willing to put any thought into getting me a gift but then when I told him exactly what to get me, he ignored it.
So, Karl sucks at gift-giving. If you're at all familiar with The 5 Love Languages, you could guess that maybe one of my love languages is gifts. If you're unfamiliar with The 5 Love Languages, it is a book, website, quiz, built around the idea that there are five ways people express their love: gifts, service, words, touch and quality time. My primary "love language" is "words of affirmation" and the one that means the least to me is "physical touch." Karl is the opposite. We're quite a pair. Over the years we have found ways to make things easier on each other.
"I love you, don't touch me!" is one of my catchphrases and I've taught Karl to say "blah blah," if what he really needs is touch. Sometimes when I've done something impressive and Karl comes to hug me to express his admiration, I will stop him and say "speak in my language!" Words are especially difficult for Karl because of his cognitive problems, but he will try because he knows that I need to be told that he likes me and thinks I'm pretty. Luckily for both of us, I have no problem saying "tell me you like me! tell me I'm pretty!"
In fact, every year on my birthday, I tell my Facebook friends to please tell me something they like about me instead of posting 50 "happy birthday" messages. I want words and I want meaningful words. I cannot give up my need for words. I can, and did, give up my need for thoughtful gifts. I decided that for my birthday I would do something for myself. Last year when I turned 30 I went to Vegas with six of my closest friends. I had an amazing time. I fell out of an elevator. I wore false lashes. I took a bath in the biggest tub I've ever been in in my life. I made my friends play Girl Talk. Actually, when I turned 29 I had a sleepover and we played Girl Talk, the original 1980s version complete with zit stickers. This year for my birthday I am going to Texas to spend a weekend with a close friend and her kids. (Maybe I should bring Girl Talk?)
I'm taking my kids to Texas with me. My eldest's birthday is exactly a week after mine and their present is the trip to Texas. My daughter's ticket was bought by my mom instead of her coming to visit us this fall. So my husband gets a weekend home alone. I'm actually a little jealous of him. I love time home alone.
My friend's husband asked why I wasn't bringing my husband. Karl and I spend almost all of our time together. Actually, he just started attending college again. He has been out of school for nine months, which means we're spent 99% of our time together for the past nine months. The other reason I'm not bringing Karl is because Karl doesn't care about going. I bought myself a plane ticket for my birthday and now Karl doesn't need to do anything except tell me Happy Birthday. I'll buy my own tiara (yes, I'm serious) and take myself out to a birthday dinner and get my own cake or cake substitute.
I will have a much better birthday than I would if I was waiting for Karl to get me a meaningful, thoughtful gift. Karl and I will have a much better relationship. I know what I can spend because I do all our banking. He doesn't care what I spend (because I do all our banking!) and he is off the hook. I get to be as above-the-top ridiculous as I want to be because IT'S MY BIRTHDAY!!!!!!
Next year I'm hoping to go to Alaska for my birthday. Maybe I'll even take Karl with me.
Typically what happens when my birthday comes around is that Karl has done nothing. I complain or tell Karl exactly what to get me. Karl goes and gets exactly what I said. He has said the reason he does nothing for my birthday is because he is scared of doing the wrong thing. There may be some validity to this. When Karl waits until the last minute and then buys exactly what I told him to, I am disappointed that he didn't put any thought into a gift. I am even more disappointed if he waits until the last minute, I tell him exactly what I want and then he gets a variation of what I wanted instead of exactly what I wanted. I feel like not only was he not willing to put any thought into getting me a gift but then when I told him exactly what to get me, he ignored it.
So, Karl sucks at gift-giving. If you're at all familiar with The 5 Love Languages, you could guess that maybe one of my love languages is gifts. If you're unfamiliar with The 5 Love Languages, it is a book, website, quiz, built around the idea that there are five ways people express their love: gifts, service, words, touch and quality time. My primary "love language" is "words of affirmation" and the one that means the least to me is "physical touch." Karl is the opposite. We're quite a pair. Over the years we have found ways to make things easier on each other.
"I love you, don't touch me!" is one of my catchphrases and I've taught Karl to say "blah blah," if what he really needs is touch. Sometimes when I've done something impressive and Karl comes to hug me to express his admiration, I will stop him and say "speak in my language!" Words are especially difficult for Karl because of his cognitive problems, but he will try because he knows that I need to be told that he likes me and thinks I'm pretty. Luckily for both of us, I have no problem saying "tell me you like me! tell me I'm pretty!"
In fact, every year on my birthday, I tell my Facebook friends to please tell me something they like about me instead of posting 50 "happy birthday" messages. I want words and I want meaningful words. I cannot give up my need for words. I can, and did, give up my need for thoughtful gifts. I decided that for my birthday I would do something for myself. Last year when I turned 30 I went to Vegas with six of my closest friends. I had an amazing time. I fell out of an elevator. I wore false lashes. I took a bath in the biggest tub I've ever been in in my life. I made my friends play Girl Talk. Actually, when I turned 29 I had a sleepover and we played Girl Talk, the original 1980s version complete with zit stickers. This year for my birthday I am going to Texas to spend a weekend with a close friend and her kids. (Maybe I should bring Girl Talk?)
I'm taking my kids to Texas with me. My eldest's birthday is exactly a week after mine and their present is the trip to Texas. My daughter's ticket was bought by my mom instead of her coming to visit us this fall. So my husband gets a weekend home alone. I'm actually a little jealous of him. I love time home alone.
My friend's husband asked why I wasn't bringing my husband. Karl and I spend almost all of our time together. Actually, he just started attending college again. He has been out of school for nine months, which means we're spent 99% of our time together for the past nine months. The other reason I'm not bringing Karl is because Karl doesn't care about going. I bought myself a plane ticket for my birthday and now Karl doesn't need to do anything except tell me Happy Birthday. I'll buy my own tiara (yes, I'm serious) and take myself out to a birthday dinner and get my own cake or cake substitute.
I will have a much better birthday than I would if I was waiting for Karl to get me a meaningful, thoughtful gift. Karl and I will have a much better relationship. I know what I can spend because I do all our banking. He doesn't care what I spend (because I do all our banking!) and he is off the hook. I get to be as above-the-top ridiculous as I want to be because IT'S MY BIRTHDAY!!!!!!
Next year I'm hoping to go to Alaska for my birthday. Maybe I'll even take Karl with me.
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