Some of my past blog posts have been about the journey my husband was on after a cerebellar hemorrhage in 2019. I will be getting back to those but we had a curve ball thrown at us this year that we didn’t expect.
Early in 2021, my husband started having issues when he watched television or read. He would feel like he was being pulled into whatever he was watching or reading, like he was in it. Most of the times it happened, we would turn the TV off or close his IPad and it would stop.
Along with these new issues, there was some increased confusion that I couldn’t explain or help with brain work. So, I made an appointment with his stroke neurologist thinking he may have been having more strokes. The PA he saw felt it was seizures and said it was common after having a stroke. She ordered an EEG and started him on Keppra. Keppra made the issues worse…so we stopped it.
So, now how do we help him? A new PA saw him this time and asked some questions because there was some added anxiety attacks now. One of the questions she asked was if he cried. I told her when he had an anxiety attack he would cry but that was the only time. She consulted with the doctor and came back in the room saying they felt it was Pseudo Bulbar Syndrome and ordered Nuedexta. This med required a pre-authorization and also a very high co-pay of $436 for us. I felt if the medication helped, we’d figure out how to pay the copay every month. He started with one pill a day for a week and then to two pills a day. Once he started the second pill, he got worse again. Increased confusion and anxiety. Life was pretty difficult.
Third try…they gave him Lexapro for the anxiety and thought maybe that would help the confusion as well. Worth a try…or not! We were on a train trip to New York City. He got extra tired one night after a tour of Central Park, Uber rides, etc. He was laying in bed staring at a spot on the wall and wouldn’t move his eyes or his head when I talked to him. Something was wrong and I was scared enough that I almost called 911. Thankfully I was able to get him to fall asleep and when he woke up, he seemed better. So, we stopped the Lexapro.
We still were seeing issues and the doctor was stumped. But new issues, like anxiety if I wasn’t in the room with him or left the house was a huge issue. One thing I should mention is that all along I was asking if this could be the start of dementia and every time was told No. Anxiety kept getting worse, confusion kept getting worse and he was sleeping more. I am thankful for Ativan and Chamomile tea. They were my saving grace for a while.
I finally wrote down all of the specific things that were happening and emailed the doctor. I asked for a CT scan or something to tell me if he was having more strokes or something was wrong with his shunt. They called and asked to see him the next day. The doctor was stumped but ordered and MRI to see if there was increased disease from the stroke and make sure the shunt was working properly. This showed no new issues. They also ordered a neuropsych exam to check for dementia.
Getting a NeuroPsych exam scheduled quickly is impossible. The soonest I could get one was 2 months away. Over the holidays I checked for any cancellations because we now had a new problem….hallucinations and delusions!! The doctor asked to see him two days later, on a day he was going to be closed. I was able to sit through the exam and watch Todd and see, first hand, how bad he really was.
Diagnosis – Advanced Stage Vascular Dementia
Although this is what I suspected all along, it was now confirmed. My next post will describe the next steps and where we are now.