I’ve been seeing a lot of social media posts lately about what to expect for your loved one if they are scheduled for a neuropsychological exam. How to prepare? How your significant other will be feeing afterwards? What can you, as a caretaker do to help?
John has had four of these exams. They are horrible. We dread them. Hopefully John won’t need to take another one for a long time. Each time he mentions that he is scheduled for one, I get a sinking feeling in my gut and I visibly deflate. After a deep breath, I compose myself, look at John and ask him for the details – when it is, where it will be – then reassure him that we’ll get through this one too.
Neuropsych testing (henceforth referred to as NE or NT) might be done before the 1-year mark (post-accident) because they give the doctors and the care team a lot of necessary information about the injured person’s brain, what may or may not be wrong, what parts of the brain may be effected, and possible treatment plans. https://www.brainline.org/article/guide-neuropsychological-testing
For insurance, retirement, workers comp, or legal reasons NE’s are not considered valid until at least 1-year post injury. So, the injured person may have to take another even if they have a valid report that’s less than 1-year old. Further exams may be administered at later points and for varying reasons but typically they are not repeated unless there is a reason someone wants to challenge the diagnosis or a doctor believes the person is recovered significantly. In John’s case, he was battling with Veteran Affairs on TBI’s received in service. They put him through the wringer and as he says, “He was rode hard and put up wet.”
In each of John’s experiences with NE’s, they are wholly exhausting. The first exam, John went to alone. We were both unaware of the toll it would have on him. At that first exam appointment, his neuropsychologist had to break up the test over multiple days. After that first day, alone, he somehow made it back home, after pulling over repeatedly to throw up and have a few moments to sit in his car trying to get his exhausted brain to function properly. The second day, I took off from work and went with him. I served as his driver these days and treated him as if we were heading home from a surgery or as if he were very ill, which essentially, he was.
Since that first test, we make sure that I am free to transport him home from the appointment and accompany him. After many exhausting trips to doctors appointments, John early on decided to buy a slide in truck camper. This would allow him to take a nap in the parking lot of the doctors office and rest after appointments, before driving home. Most of the time John has no problem driving but when he is fatigued, it can be quite trying. Even with that, the NT exams so thoroughly exhaust him that he’d have to spend days recovering in the camper before feeling well enough to drive.
John begins to get anxious for an NT days before it occurs. He wants to do well on it. Because he generally manages his symptoms well, he will go days before having a fuzzy or bad brain day so he begins to think that maybe he is getting better. He begins to hope that maybe he will do well on the NT this time and be able to get back to his old normal and back to work.
He also worries that he may have gotten worse or, even more concerning, that he may be accused of malingering. Merriam-Webster defines malingering as, “to pretend or exaggerate incapacity or illness (as to avoid duty or work).” His difficulty trusting other people increases these worries. Now that he’s been through four of these exams he also begins to dread what is coming, full on bad brain days for days until the test is completed and he has time to rest.
I believe the test covers areas on memory, cognition, verbal skills, and motor skills. I do not know the details. I do know that John begins the testing doing pretty well but then he begins to slide downwards and then rapidly plummet to the point he cannot continue the test. These tests are meant to be done in one sitting but his are usually broken up into multiple days. This helps somewhat but by the second day, he is already having a bad brain day so he begins to test poorly immediately and plummets quicker.
As someone who loves him and doesn’t want to see him in pain, it is awful to watch. It’s hard to suppress feelings of anger and a need to shield and protect him from the doctor. I know the doctor is doing their job but it’s hard not to start feeling some animosity.
John emerges from the appointment looking shell shocked, a glassy, wide-eyed look. His eye lids will be dropping and blinking at different paces. His speech is slurred and he has a hard time with word recall. He walks a little unsteady so that I hold his hand to walk him out to the car. I speak in quieter, soothing tones. When we get to the car and he gets settled into the passenger seat and we start driving, he will talk a little bit but more so sits and rests. He is in such physical pain that he will moan or comment on the throbbing of his head. I want to know how it went, what happened, how he is feeling but I let him rest. I don’t try to engage him in conversation. I don’t listen to music. I try to avoid big pot holes or routes home that will be longer or involve a lot of traffic.
There is really no preparing for these tests. John is rested when he arrives day 1 and tries to be rested the subsequent days. We used to wonder if he should show up to the test being already slightly fatigued, to show the doctor what he is like when he isn’t well rested, but have not done this. There is no need and may actually increase the chances of being accused of faking it. By accident, this occurred with one of his tests. It was one in which a lot was riding on the results. It was scheduled to take place an hour or so away from our house. The drive was bad getting there and, because it was important John was even more amped up than normal and fatigued himself before arriving to the appointment because of it all. On top of that, we later learned that the doctor who administered the test was not qualified to do so. She actually accused John of malingering during the appointment and said some nasty comments about the fact that I was pregnant at the time.
This experience was unique and I hope doesn’t happen to many people. This doctor actually ended up having a hearing with the medical review board and I think was no longer allowed to administer NT’s anymore but did not lose her license. The experience was so traumatizing for John that he actually refuses to meet with certain doctors alone because he does not trust them and doesn’t want to be caught in a he said/she said situation.
As a caretaker, how can you help? Do your best to make sure your partner is rested. Take time off from work to go to the appointment with him/her. Make arrangements to have kids or pets looked after. The exam takes 1-3 or more hours, excluding drive times. Prepare yourself not to ask questions of him/her afterwards. Try to be calm, quiet, and patient. Have a book or something to do while you’re waiting. Be prepared to stay on site for the appointment. Take some food and water for yourself and partner. Make sure your partner has dark sunglasses which can be used inside, for the fluorescent lights, and outside. Take some ear plugs or noise cancelling headphones. Make sure the passenger side seat of your car, or wherever he/she plans to sit on the way home, is cleared and ready for them afterwards. Be ready to walk with them, at their pace. Have the house ready for them when you get back home so that they can easily crash in a comfortable location. You may want to meal prep or have a plan to order delivery for dinner that night. Check on them but let them tell you about the experience in their own time. Don’t expect them to be useful to you or the family until they are rested. This could take a few days. If you have kids or pets, try to keep them quiet and to not bother or check on daddy/mommy.
I hope this post is useful. Let me know if you have specific questions. Feel free to share your experiences as well.
TBI Spouse (and Others) 