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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.

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You Did A Good Job, 'Lass!
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So glad you got his meds switched to being administered regularly. So frustrating when the nurses demand that the patient request the pain relief. Especially when the end is near and their pain is constant.
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Eyerish,

I finally got signed in. It seems to me hallucinations just come with the territory. Mom got them real bad on and off during our ordeal. In the beginning they were from UTI's, but as she progressed she would have them even after the UTI had been treated. I never really figured out how to deal with them very well, she just could not be convinced otherwise, so I would just have to go with whatever she thought was going on. She did seem to go in cycles, where she would stay awake for around 36 hours with hallucinations and then sleep for 12 hrs or more and when she woke up she would ask me if what had happened in her hallucinations was real. She had some that were very scary for her, thinking the house was on fire or if she was in rehab she would think the curtains were on fire. She had some pleasant ones where she talked to many of her dead relatives. I even pretended to fix some of them food.

At least they have your Dad up in a wheel chair, Mom didn't leave the bed for 4 months. I hate that you and your Dad are going through this. I too, had to get stern with the rehab and hospice staff from time to time. They need more individualized care but I doubt that will ever happen.
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It sounds like you handled this situation well, eyerishlass! Got those darn nurses to listen to you and give your Dad some relief!! Good for you. So so sweet about stroking your Dad's head. Brings tears to my eyes.
Would bringing your Dad some pictures of you to look at -maybe in cardboard frames or just large copied photos of you , laminated, that he could hold at night- help? Or would it confuse him at this point? Would he think it was you?
Also they say smell is a powerful sense. Maybe bring in some soothing potpourri to over power any hospital smells? But make sure he likes it and is not bothered by it. Some people hate fragrances. Lavender is supposed to be soothing. And music? Can you bring in a cd player and have the nurses play soothing music at night? If he likes it? To override the chatter of the nurses?
Can you ask hospice if they have a heavy blanket? I have no idea if they would or even could have one but we use it to calm our daughter. It is a specially made blanket filled with beads/sand evenly distributed . It weighs about 10lbs I think. It helps sooth troubled sleepers. It is very calming. It just makes one feel more secure. It weights them without straining them. It is a sensory thing. Maybe they use it in hospice, I am not sure. But may be worth an inquiry. It would be hard to buy one as they need to be special ordered. Cozy calm hospital blankets is one co. You could google it just to see what I am talking about.

Just tossing out some ideas. Prayers to you an your Dad. (((hugs))))
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You're an amazingly strong woman Eyerishlass, and such a fierce and loving advocate for your dad. I pray you both find peace.
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The video is a great idea and I wish I had thought of it. I don't think I could have pointed my phone at his face but I could have turned it on and at least recorded his voice telling me how scared he was, that he was in pain. And you're right, most of his hallucinations come from somewhere and that was fine before they turned malevolent. Now he's terrified of them.

There's a disorder called ICU Psychosis. It's occurs when being in the ICU affects you mentally. The beeping machines, alarms going off, people in and out of your room all day and night....it makes people nuts. And our elderly are so vulnerable to so many things. I think it's a version of that. His room is right off the nurses station and all the nurses gather there and they're loud, they carry on, and instead of walking up to a coworker to say something they shout down the hallway. But this is the 'death suite' that my dad is in (they don't call it that--we do). It's right there at the nurses station because he needs monitoring. I'm there about 8 hours a day on my days off but I work 12 hour shifts and by the time I get off work he's asleep. As long as he gets his medication as scheduled we won't have anymore problems so I plan on calling there every 3 hours to make sure he's getting it.
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Oh how awful for you! Does your cell phone have a video cam that you can activate without looking? I would record at least one episode of the fear stuff, just so others take you seriously enough to get him meds (and of course you do NOT tell your Dad you've taken video ---he doesn't need that "betrayal" ).
It IS hard, since our family trust us & not the "strangers". Are you or your brother able to sleep over with him to be able to ground him at night? It sounds like the "hallucinations" are a mix of fact (nurses SHOULD be in his room at night!), things misunderstood, processed by a failing brain. I've dealt with this several times in the past 18 mos, where the normal hospital activity turns sinister. In one case the nurses were supposedly running a political telephone "call out the vote" campaign from the other side of the room, a TV reality show was being filmed in the ER, and the walls of the room were being constantly moved to change the size of the room (My guess would be bright lights+consults/rounds in the ER, the adjacent patient's family were many & chatterboxers (they WERE loud! and many!), & the "moving walls" were probably the curtains, misinterpreted. All of this was all extremely "real" to the patient, with his interpretation unshakable. (another time it was less sinister - the room was an elevator, the walls were moving, and had I seen the bunny rabbits that were wandering around the room??? just out of surgery meds...).
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