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