The last time I picked hubby up at the hospital I had told the social worker I wouldn't 'warehouse' him until I looked in his eyes and didn't see him there.... Well, yesterday I called in time to catch the doctor. I asked how he was doing and if I could pick him up. Instead of the usual yes, he's ready, come and get him I heard Come on up and evaluate him to see if you want to bring him home. Uh oh.
I figured OK - new ward, different doctors, not familiar with him. Maybe they just weren't sure what his baseline behavior was and were worried. So I packed sweat pants (easy on, comfortable for a long rife), socks, sneakers and a t-shirt. Loaded them into a small backpack that could hang from the handles of the wheelchair for ease of transport, and off I went.
When I checked in at the nurse's station I realized I had been wrong about one assumption - it was, in fact, the same ward he'd been in the last two times he'd been kept. Then the nurse, one I had spoken with on previous visits, told me again that I needed to assess whether I could handle him. Still optimistic I said OK and trotted on down to the room she told me. There was, as last time, a 'watcher' on duty - usually this has been to avoid falls. This time it was more urgent. He had apparently ripped out his IV, so they were now giving him his antibiotics in pill form. He was lying partially sideways on the bed, legs hanging off the edge. When he saw me he barely reacted except to say "OK, let's go!". For a long, hopeful moment I thought it was his usual anxious desire to get out of the hospital, but it quickly became obvious he was not right.
He couldn't focus on my face when I tried to talk to him - his eyes were constantly flicking here and there. I asked if he knew who I was. I had to ask three times before he finally said my name, and even then he couldn't hold my gaze. He wanted to know when we were going to leave. I said he had to get dressed first - he didn't want to leave in pajamas, did he? He said "I don't give a shit!".
I said "But I do!" and gave him the socks I had brought. I was already having serious doubts at this point, but I told him if he could get dressed we would go. Five minutes later he finally finished putting on the first sock, in between bouts of laying on his back repeating his mantra 'OK, let's go!". Apparently he had been saying that all morning, not just since I arrived. I asked to speak to the doctor. I was left alone with him for about ten minutes while the watcher went off to find the doctor and nurse. During that time he asked me to come closer. When I did he grabbed my arm hard enough to leave a bruise. I jerked out of his grasp, but resolved to keep my distance after that. I tried to help him with the other sock, and accidentally hit his foot in my crotch. That set him off on a round of 'inappropriate' talk - demanding that I drop my pants. When I declined he repeated it several more times, and when I still refused he said that maybe he'd 'get the black nurse to drop hers too'.
When the doctor and nurse finally arrived I told them what had been happening. He was worse now than he had been when I brought him in! The doctor said maybe it was partly the environment - some encephalopathic patients improve more quickly in familiar surroundings. However, he admitted that they wouldn't demand that I take him if I felt it wouldn't be safe. I explained that I couldn't possibly spend 24/7 watching him - I have a business to run, sometimes needing to be away for anywhere from a few minutes to a couple hours. How could I possibly handle him considering they didn't dare leave him unattended? They understood, and called the social worker I had met last time.
She explained that he would have to be kept there at the hospital until they could find, possibly, a sort of half-way house, a real rehab where he might have enough stimulation that his mental status would improve, unlike in the tiny room with a watcher. If he improved sufficiently I could still take him home. If he didn't they would find a long term facility.
It is one thing to know 'that day will come' but you always keep hoping it won't, or at least not yet. As they said, they are going to up the dosage of the meds to bring his ammonia down, and maybe in a few days he will be improved enough to bring home... However, it is guaranteed that he has suffered still more brain damage, and even if he gets better, each time this happens he loses more of what makes him himself. Clearly the normal dosage has not been helping enough, or he wouldn't have been so bad when he arrived - so obviously his liver is doing worse than ever. What scares me is that he is worse now than when I brought him in! I had told them he had been on a regular dosage except for the couple days he was short because their pharmacy didn't deliver on time. Why didn't they raise the dosage immediately?
There had been talk about a liver transplant, but as I said to the social worker - what is the point of a transplant now, if his brain is so far gone? What kind of quality of life is that? Her response; that's a decision you'll have to make. I know, but it sucks! We had discussed the choices of being kept on life support - NO! Somehow the idea of being basically brain-dead but relatively healthy physically never came up. We never arranged a health care proxy, or power of attorney. If he doesn't improve radically in the next few days it is going to get a bit complicated, as well as heart breaking.
I feel numb. Yesterday I didn't dare cry until I got home, but even then I only cried briefly. I guess I still feel it is too soon to go into mourning... he isn't dead yet...