My dad has hepatic encephalopathy from end stage cirrhosis. Funny....he's had several heart attacks and we all thought that the heart would be the one to get him in the end. The liver snuck up and surprised us.
I cared for him for 5 years in my home and then one day while I was at work he fell and laid there all day until I got home. He went from the hospital to rehab to the nursing home. We never thought it would be permanent. In the hospital his condition was so bad I thought the only place he had left to go was up but that was not the case.
Six months later. He's dying. He can't walk anymore. He barely eats. He has days where he's barely conscious. We have hospice. For several months he's had hallucinations. Vivid, violent hallucinations. I'd ask him if he was scared but the hallucinations kind of empowered him in a way. He was the only one who knew what was "really going on" so he had all the control. He denied being afraid. He told me about these hallucinations and for him they were kind of adventurous.
Over the last week and a half he's gotten worse. We know his time is coming. He was moved into a suite at the nursing home. A very bright and sunny room with flowers and his own private bathroom.
He's been difficult to converse with over this last week or so. Sentences trail off, if he speaks at all. I spend every waking, non-working minute with him because to him I am still his caregiver. And I guess to me too. A bond was formed over those years he spent with me and it's so much stronger than I ever thought it was.
So I get to the nursing home today. I've come to expect the unexpected when I visit my dad these days and the minute I walked into his room I knew something was wrong. He looked like he was about to spring out of his wheelchair. He was trembling. And when he saw me he was so glad to see me but there was a desperation about him and I sat in front of him and said hello and he grabbed my hand and said something like, "Oh, thank God you're here. They're trying to kill me! They're going to kill me! I survived last night but they're coming back tonight!" He thinks the nursing home staff is trying to kill him. I'm not thrilled that he's in a nursing home and we've had our beef with them over the months but the staff is good, I have no worries where the staff is concerned. He went on like this for a few minutes, collapsing in tears. I thought to myself, "He's supposed to be on Ativan and Morphine, where is the f****** nurse!?" I asked my dad if he was in pain and he said, "Oh yes" and then pointed to his stomach. I told him I was going to talk to the nurse and he said, "But she's one of them!" I said to him, "Dad, do you trust me?" and he replied, "Oh yes, I trust you the most out of anyone!" I asked him to trust me while I spoke to the nurse and I went to find her. I told her (not asked, told) that I wanted my dad to have the Ativan and the Morphine right now. The nurse said she didn't think he needed them. I told her what my dad had been telling me, how terrified he was, and that I am requesting that he be given his prescribed medication. So the nurse came in and quizzed my dad and my dad told her that he had no pain and that things were fine. I followed the nurse into the hall and told her that he's terrified of the staff, that he's not telling her what he's telling me. I finally convinced her and she gave the medication but she told me that she was not going to give it again, that she hasn't seen my dad's distress or fear and that he denies pain when she asks him. I told her of course he's going to say that, he thinks you're trying to kill him! She told me she was uncomfortable giving it because it will hasten his death and I fired back with if she doesn't give it he's going to be suffering, mentally and physically and I won't have that. I told her if she won't give it find someone who would.
I texted my brother what was going on and I put in a call to our hospice and hospice came running. Finally! I thought. Reinforcements. I told the hospice nurse about my dad's fear, his sobbing over wanting to go home, his violent hallucinations and she went and spoke to him and got him to admit that he was scared, that he was afraid he was going to be murdered, that strange people come into his room and go through his stuff, etc. So she charted that (finally, something in the chart about it!) and put in a call to the Dr. to change the PRN on his meds ('as needed') to 'every 3 hours'. In the meantime he's to get the medication. I compromised on the morphine. No morphine, tramadol instead. I figured I had to pick my battles and right now it's about my dad being calm and unafraid.
I'd rather my dad be sedated and semiconscious than crying uncontrollably, begging me to believe him, terrified and in pain. Because of the wheelchair I couldn't wrap my arms around him so I stood up and brought his head to my chest and I stroked his hair until he calmed down.