Free weekly newsletter for caregivers navigating brain injury, CTE, dementia, Parkinson's, and PTSD. Real information. Peer-reviewed. From people who've been where you are.
He didn't believe me. For years.
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FROM THE NEST | Issue 13 He didn't believe me. For years. And his brain was not lying to him. That is the part nobody tells you. ROB'S CORNER Trust was everything in my world before this. In special operations you trust the man next to you with your life. Not because you like him. Because you have verified him. You have watched him perform under pressure. You have seen what he does when everything goes wrong. Trust in that environment is not given. It is earned through evidence. And then the disease started doing things. And people started telling me things about myself that I absolutely could not believe. Would not believe. Things I would never say. Things that were not in my character. Not who I am. Not who I have ever been. So I did what any operator does when the intelligence does not match what he knows to be true. I rejected the intelligence. What changed it was evidence. Video. Audio. Recordings of things I said that I had no memory of saying. And even then, the first response was not acceptance. The first response was to find another explanation. It was your fault. Something you said made me say that. The whole cycle. But you cannot argue with a recording forever. And slowly, baby steps, I started to build something I did not expect to build with my own wife. Trust. Not the kind of trust that comes easy. The kind that comes from watching someone stay when they had every reason to leave. Watching someone tell you the hard thing over and over without using it against you. Without taking anything from you. She was not trying to hurt me. She was trying to help me. And my brain spent years telling me otherwise. That is probably the thing caregiving built in me that I did not have before. Not trust in general. I have always had that in the right context. But trust in the one person standing in the room with me every single day, telling me the truth about myself when my own brain could not. That did not happen overnight. But it happened. -- Rob Robbins HEATHER'S TRANSLATION There is a specific kind of loneliness that comes from being the only person in the room who can see what is happening. Not because you are smarter. Not because you have some special insight. But because the person you love has a brain that is structurally unable to accurately report its own condition. And you know this. You have read the research. You understand the neurology. And none of that makes it easier to be called a liar by the person you are trying to keep alive. Caregivers of people with anosognosia, which is the clinical term for what Rob was experiencing, are routinely told by the person they care for that they are wrong, manipulative, controlling, or cruel. Not because that person is a bad person. Because their brain has lost the capacity to see what you see. The damage is structural. The denial is not a choice. I knew this. I had read every paper. And there were still nights when I sat in my car in the driveway and wondered if I was the problem. What the research does not fully prepare you for is the length of it. The years of presenting evidence, absorbing the blowback, and choosing to stay steady anyway. Not because it felt good. Because the alternative was abandoning someone who needed the truth even when he could not accept it. What Rob described today stopped me. Not because it was news. But because hearing him say it out loud, that I was not going to hurt him, that I was not going to take anything from him, that the trust built slowly through evidence and time, meant that the years of staying steady were not invisible. They landed. Even through a brain that was fighting the signal the entire time. That is the thing nobody tells caregivers. The work you are doing right now, the work that feels like it is disappearing into a void, is landing somewhere. It may take years. It may require a recording on a phone and a very long night. But it is landing. Stay steady. -- Heather Robbins THE MEDICAL FACT Anosognosia is a neurological condition in which a person is genuinely unaware of their own deficits or illness. It is not denial in the psychological sense. It is not stubbornness, resistance, or a coping mechanism. It occurs when the brain regions responsible for self-monitoring, primarily the prefrontal cortex and areas of the right hemisphere, have been damaged by injury or disease. The person is not choosing to disbelieve you. Their brain has lost the structural capacity to accurately report its own condition. Anosognosia affects approximately 40 percent of people with traumatic brain injury and up to 81 percent of people with Alzheimer's disease. In veterans with blast-related TBI, high-functioning individuals frequently develop sophisticated compensatory behaviors that mask the deficit entirely, sometimes for years, until the system around them collapses. This is why trust between a caregiver and a person with anosognosia is not just an emotional achievement. It is a clinical one. Research on therapeutic approaches for anosognosia consistently shows that confrontation is counterproductive and damages the care relationship. Approaches that build safety, consistency, and evidence over time, exactly what Rob described, produce significantly better outcomes for both the patient and the caregiver. The caregiver who stays steady is not just being patient. They are delivering the most effective intervention available. Sources: Prigatano, G.P. and Schacter, D.L. Awareness of Deficit After Brain Injury. Oxford University Press, 1991. Orfei, M.D. et al. Anosognosia in Neuropsychological Syndromes. Journal of Neurology, 2007. Flashman, L.A. and McAllister, T.W. Lack of Awareness and Its Impact in Traumatic Brain Injury. NeuroRehabilitation, 2002. WANT TO GO DEEPER? If this landed somewhere close to home, these resources are here when you are ready. Watch: What We Become | Post-Traumatic Growth and the Caregiver's Hidden Transformation Caregiver Support at Robbins Nest Alliance Brain Injury 101: Start Here Browse the RNA Shop Robbins Nest Alliance provides free, peer-reviewed caregiver education across neurological conditions. If someone in your life needs this, forward it. That is how we grow. robbinsnestalliance.com |
Heather at Robbins Nest Alliance
Free weekly newsletter for caregivers navigating brain injury, CTE, dementia, Parkinson's, and PTSD. Real information. Peer-reviewed. From people who've been where you are.
FROM THE NEST | Issue 16 The glue was dry. All of it. ROB'S CORNER She came upstairs and it only took one look to know she was mad. I was still waking up. I had no idea what had happened downstairs. I asked her what was wrong. She told me. I did long blinks. I want to be clear that I understood every single word she said. I also understood that laughing would have been the worst decision I had made in recent memory. And I have made some bad decisions recently. She hobbled out. I did more long...
FROM THE NEST | Issue 15 We did become someone else. Here's who. ROB'S CORNER I want to tell you something about the Veterans Expo. I said yes. Not because I am back to what I was. I am not going to pretend that. But I have spent enough time hiding behind what I used to be, and it has not helped anybody. Not me. Not the guy in the back of the room who came but does not want to be seen. I know that guy. I was that guy. For years. He is not going to be reached by statistics or by someone...
FROM THE NEST | Issue 14 Your brain is still working. So are you. ROB'S CORNER World Brain Day. I have a complicated relationship with that phrase. When you spend your career in medicine, when you teach at the doctoral level, when your entire professional identity is built on a brain that performed under conditions most people will never encounter, being told your brain is the problem is a specific kind of loss. But here is what I have learned, and I did not learn it easily. The brain that...