My dad is currently in a hospice receiving care for stage 4 oesophageal cancer. He was admitted two weeks ago, and while there have been slight fluctuations in his condition day to day, overall he has deteriorated rapidly.
He is very frail and thin, though still eating, drinking, and mobile — but with increasing fatigue and weakness. He now has incontinence and wears a pad. They attempted to catheterise him recently, but he was too distressed to tolerate it.
One of the hardest parts is the extreme agitation and confusion. He often seems overwhelmed and doesn't know what to do with himself. He barely sleeps at night, gets up frequently, paces the room, and is visibly anxious and restless. He’s often angry, short-tempered, and frightened — especially of the dying process — and he says things like he wants it to be over.
He’s been very demanding with staff, constantly ringing the bell for medication and complaining about things. He’s receiving lorazepam and oxycodone orally. Even though he wants us there often, he sleeps through much of the visit or hardly speaks. I took him for a short drive today — he got out of the car, walked a few steps, and then immediately asked to go back. Once inside, he rang the bell repeatedly until he was given more medication.
This experience has been emotionally traumatic. No one has clearly explained what’s happening, and I feel like I’m guessing what's normal and what isn't. He had a UTI earlier this week, and we hoped that might explain some of the behaviours, but his distress and mental state haven't really improved.
We’ve now been told to begin looking for a nursing home. He hasn’t specifically said he doesn’t want to go, but I honestly think he will find it deeply frustrating and depressing. I don’t think he’s safe to live alone, but I also don’t know how he’ll react if the hospice stay ends and he’s moved. I'm also unsure whether his current behaviour is due to the cancer, the medications, or the general decline in his condition. We're not getting updated scans or clear information on prognosis.
I feel emotionally drained and anxious every time I go to see him. Today, he screamed so loudly the nurses thought something terrible had happened — it terrified my brother, who called me afterwards visibly shaken. My dad told the nurses he wanted to put his head through a window. He also asked my brother to help change his pad. His sense of dignity seems to be gone, and it’s heartbreaking to watch.
I don’t know what to do anymore or how to help him through this. Has anyone been through something similar? I feel like I’m watching him slip away and there’s nothing I can do.