When morning came, I quietly got up, went out to my office, found the information I needed and called the neurologist. Even though DH had just seen this doctor the day before, I felt it was time for another appointment, and as quickly as I could get him one. How could I explain what had happened? How do you describe someone who no longer remembers, much? anything? yesterday? their history? I wasn’t even sure how much he remembered and how much he didn’t. Was it temporary? How do I describe it when I didn’t know?
I made an appointment for early afternoon. We arrived early enough to fill out the normal paperwork. I allowed DH to attempt to fill out what he could. Basically, he didn’t fill out much of anything other than his name and birth date. He didn’t fill out his address, phone number, or much of anything else on the form.
We were called into the appointment room and sat quietly waiting for the doctor. When the doctor came in, the look on his face truly said “I am not amused. Why are you here, I just saw you yesterday.” I could easily understand the look. We had just seen the doctor the day before, and from his perspective and without any additional knowledge, it really didn’t make sense that we should have returned the next day. What could possibly happen in such a short time to warrant an appointment so quickly. The moment he began speaking with DH it became apparent there had been a significant change. The doctor would look at me, as if why didn’t I answer his questions and why wasn’t DH answering these questions. I sat there and let the doctor talk to DH. DH looked at the doctor with complete innocence. As the doctor began asking more questions, it became more and more apparent that DH did not remember the doctor, his office, nor having met him. To DH, the doctor was a mystery. And to the doctor, what had happened to DH was a mystery. DH could not answer any of the doctor’s questions and the doctor was initially at a loss.
One difference the doctor did notice was how DH seemed to sit with his head bowed, as if he was trying to shrink into himself. As DH tried to answer the doctor’s questions, even though he didn’t have an answer, his voice became quieter and quieter. If DH could disappear into himself, it seemed he would have. At least he appeared to be trying to. It was quickly becoming obvious to even the doctor that something had happened in the previous 24 hours that had wrought this significant change in DH.
Through out all the doctor’s questions, I had sat quietly letting him interact with DH. Only when the doctor seemed to understand that something had happened, did I finally chime in. The doctor asked me what had happened since we had last met. I finally began to answer any and all of the doctor’s questions that I could. By that time, DH was like a little boy, maybe in trouble, sitting and waiting for someone to tell him what to do. There was no confidence, but he seemed timid, undecided, unsure of himself.
The neurologist was unsure of what had happened. He really didn’t know what had happened. He didn’t suggest much, there was no medical testing he suggested. He only had a few suggestion. First he suggested DH start on antidepressants, maybe he was depressed. It was a possibility. Also, the doctor suggested that DH begin some counseling and testing. He suggested a place that was close by to where we lived. They could do some cognitive testing to see if they could come up with any ideas.
A mere 24 hours had changed my husband. Now I had a lot to learn, and a new life to understand and deal with.
The next couple of weeks would get worse before it would begin to get remotely better. Over the next few days things began to change. DH wanted to sleep. Since I didn’t know what to expect with these new changes, I let DH sleep what he wanted. I stopped doing that the night then day I left DH to sleep and he slept from 10PM one night until 2 PM the next afternoon. And had I not gotten him up, he would have continued to sleep. I didn’t make that mistake again.
I began to try to make a routine for us. I knew it wouldn’t always be kept, but I had to try something. I made sure DH got up at a regular time, albeit mid morning, not too early. We would eat meals at our table, but sometimes it was not just us at the table. We seemed to be sitting with other people at the table. He “saw” and knew these phantoms or ghosts as I thought of them, they were some of his family members, usually his grand parents. Even the house he saw, the one we were physically in was not the house he saw in his eyes. In his eyes this was a different house, one I didn’t know. But of course, since he thought it was someplace else he would get lost walking around the house. Even looking out the window would make no sense to him. He expected to see a lake that wasn’t there. He expected to see trees that weren’t there. He expected a patio, with a view that wasn’t there, and people there that weren’t even alive anymore. It made for some scary times.
How do you talk to someone when they don’t seem to see you? I wasn’t sure who he saw, but I was pretty sure it wasn’t me. It was as if he saw someone else’s face, someone else period. I wasn’t sure he even knew who I was, or that I was there. He saw others not me. It wasn’t an easy time.
He didn’t want to eat, he seemed to have no appetite, he seemed to often be somewhere between awake and asleep. Given the choice, he seemed to want to stay inside those dreams of his. The dreams seemed to give him some kind of peace, some comfort. He liked his dream world better than the real world. So that’s where he wanted to stay. Looking at it that way, I can understand his desire to stay in a world that feels safe and comforting to him.
My goal – to find a way to make this world, the real world, feel just as safe and comforting to him.