DF end of life hospice trauma. Please advise

[Totallybannanas]

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.

@TotallybannanasThere’s so many good responses here. I hope they are useful to you.

I'm replying to give you big un mumsnetty hug. I’ve been where you are. It is so very very hard. Please take time to look after yourself. Do the bare minimum on the work and home front. And look after yourself - what does that look like? Fresh air, chocolate, a movie on Amazon prime? Or eating some m and s sandwiches in a layby and having a nap. I’ve done all of those. And more. Nothing makes it better. But it takes the edge off it all, sometimes.

You are all in my thoughts. Bless you.

This night be helpful: https://www.mariecurie.org.uk/information/end-of-life/pre-death-signs

it sounds like it has been a huge shock for your dad, though? Would he be open to talking to someone about it?

If he qualifies for CHC it is very unlikely that he would be accepted in a residential home as by definition he is in need of nursing care.

I found that I had to be quite forceful and assertive to get what was needed. When you ring to make an appointment to see a nursing home you need to be clear with them that you wish to discuss in detail the care on offer for someone with your father's problems and that you will be sending a preliminary email detailing the areas you wish to cover. Be clear that you need to speak to the manager or to a qualified member of the staff. If they offer you a receptionist to show you round then ask him/her to make a new appointment when the manager is available.

They should know that you wish to learn about the exact care plans they might be able to put in place and you are not just there to look at the decor .........

It is I know very hard to be assertive when you are in such emotional distress over a loved one, but it really is the only way. Do you have anyone who can share these visits with you?

I really feel for you OP - what an awful time for you 😔. It might be worth exploring whether he has delerium as a result of the UTI. My DF had a UTI in October last year and his delerium lasted a good number of weeks after the infection cleared. It was really distressing to see - severely agitated, couldn’t sit still, he was frightened too. So you might be seeing those symptoms rather than a permanent mental change iyswim. I hope it settles for you soon. x

If his UTI is active he will be driven to distraction. He should be on antibiotics surely. It's not to prolong his life, but for comfort. It can present like dementia.

At the very end, if people are in a great deal of physical pain, or restlessness, midazolam infusion will be used which often leads to unconsciousness and a peaceful death.

I'm not an expert OP, but he doesn't sound quite there yet, physically, do see if his UTI has resolved..

I’ve sadly experienced this with a relative who was dying, it’s called terminal agitation and it absolutely can be managed through the right medication but you might have to be the “squeaky wheel” OP.

Whatever you do, do not say you’ll take him home as it will be even more traumatic for you both. Sending love and strength.

I agree with all of this.

Do lobby for stronger meds for him@Totallybannanas

Dad died of stage 4 cancer earlier this year. It's a horrible time.

I think the very end is normally a rapid decline. In dads case his mobility and strength reduced over 6 months with greater amounts of sleep during the day, reduced appetite and then in the last few weeks he lost control of almost all his functions and couldnt walk unaided, his calorie intake was less than 400 a day most days. The final few days were bed bound mostly asleep/semi conscious, constant pain, morphine and speaking was an effort, he could only swallow if we put the bed up so his neck was raised.

I'm not an expert and my knowledge is limited to what I have read (relating only to prostrate cancer) and my father's experience but your father sounds like he has more strength at the moment than someone who has had the rapid decline which I believe is normal at the very end.

We recorded Dad's voice in the last month (when he was able to concentrate) asked him questions about his childhood and said what we needed to say to each other. Use the time you have carefully, you will never get it back.

I'm sorry you're going through this. It's horrific and callous.

The hospice and GP are failing your dad and you.

You need to be pushy until they get their act together.

You've said you wish it was over and you're in the dark because of their careless and crap communication. If that's how you feel as a witness, imagine how he feels knowing he's dying, terrified and people who are supposed to be caring for him can't even be bothered to communicate like decent human beings. He has no control and that is so utterly terrifying it can explain the behaviour you describe.

One poster cautioned you against being rude. The hospice and NHS behaviour is the height of rudeness; worrying about whether you are being sufficiently polite in holding them accountable is the last thing you need to worry about.

They are failing you both here and you should feel no guilt whatsoever about being as firm as necessary to push them to sort it out. The people who politely wait for the care they deserve and are apologetic about not wanting to push for anything are almost always neglected like this - you have to be pushy if you want anything approaching half decent care.

OP, your posts brought me to tears and awakened emotions I thought I had buried long ago. After much reflection, I have so much I want to express.
I'm really sorry you're going through this. What you're describing sounds incredibly tough—both for your dad and for you and your family. Just know you're not alone, and sadly, much of what you're experiencing is quite common at this stage of illness.
The agitation, restlessness, and confusion you're seeing can definitely be part of the dying process, especially with certain cancers and medications involved. It could also be related to something called terminal delirium, which is so hard to witness. Sometimes adjusting medications (like adding midazolam or haloperidol) can help, but that depends on the care team and the situation. If his current meds aren’t managing the symptoms, don’t hesitate to ask the palliative care doctor for a review. You have every right to ask for clearer communication and better support—and you absolutely should.
It’s okay to say, “I don’t understand what’s happening—can someone explain what to expect and how we can keep him comfortable?” You deserve honest answers. Being an advocate for your dad is incredibly important and loving, even if it doesn’t always feel like enough.
Considering a nursing home is such a difficult decision. Hospices don’t always have the capacity for long-term stays, especially if the patient isn’t immediately at end-of-life (which can sound harsh but is often about bed availability). A good nursing home with end-of-life experience can still provide compassionate, dignified care, but I completely understand your concerns.
If he moves, try to ensure it’s to a place with strong palliative care connections, so he isn’t shuffled around unnecessarily.
And most importantly, take care of yourself. Caregiving takes an enormous emotional toll, and it’s okay to step back if you’re feeling overwhelmed. It’s okay to feel helpless, and it’s okay to grieve even before he’s gone. All your feelings — anxiety, guilt, sorrow — are completely valid. You’re doing your best in an incredibly difficult situation.
If you haven’t already, consider reaching out to the hospice about talking to a family support worker or bereavement counselor. They’re there for you too.
Sending you strength and support — you’re doing far more than you realize.

Have they mentioned Continuing Healthcare?
I used to be an End of Life carer. We went in to patients who had been in hospice but rallied, or who had chosen to stay at home, or where the hospice didn't have a bed yet. They had however much care was needed, 12 hour shifts, overnights, whatever was required. It was funded the same as hospice care would have been. There is a fast track assessment process too.
"Fast-track assessment for NHS continuing healthcare
If your health is deteriorating quickly and you're nearing the end of your life, you should be considered for the NHS continuing healthcare fast-track pathway, so that an appropriate care and support package can be put in place as soon as possible – usually within 48 hours."

https://www.nhs.uk/social-care-and-support/money-work-and-benefits/nhs-continuing-healthcare/

A home might be better for him. Hospices are really focused on nursing patients through a comfortable passing. If your dad is mobile, eating etc, it sounds as if he is not at the point of hospice care. A home will have a broader knowledge of medical conditions and may have more answers and options to help.

My dad also passed away in a hospice and he frequently asked us to help him to die. It is a horrific time for both your dad and the family around them. I hope that you get some answers and this mania subsides. I would speak to someone with authority to find out how and when you can speak to a doctor as a first step.

I will never know what happened to my dad as we weren't there when he passed, (it was during covid time so we were restricted to hour long visits). On the day he died, I had spoken to a doctor, I sobbed as I relayed to them how desperate he was to die and how traumatic it was for my siblings and I. I left and a few hours later he died. I often wonder whether they upped his morphine to speed things along, knowing that both my dad and his family were ready for him to pass. Maybe it was just a coincidence but I'd like to hope that they helped him.

I am so sorry you have to go through this. Let's hope for others who are faced with this hell in the future will have the option of a more dignified and less traumatic death.

I'd go in armed with this and ask the hospice staff about this care

I'd advise you ask them to contact the local cpn, psychiatric nurse, he could have some medications to keep him calm which would help him.
At end of life theres no answers as to how long he will have left it's best to help remove this agitation so he can live in peace at least.

OP says CHC funding is in place. It's actually unclear whether he's on palliative (assisting with comfort) or hospice (end of life) care just now actually, nor which would be most appropriate..

The doctor in the hospice has equal access to every medication which is generally used for agitation in terminal care.

I think it's actually palliative care. Apparently dad said the doctor said this could go on for days or weeks. So I don't know.

So anybody can be under the palliative care team, terminal or not, if they need a greater level of comfort measures. Palliative care can be indefinite.

I really do think the UTI may explain quite a lot of this..

This sounds really tough.
Arrange to speak to a doctor. Ask them to explain the change in behaviour, is it the cancer or meds? If neither, make sure they k ow that his behaviour has changed, it could be due to infection.
Ask for a mental health assessment, there may be additional meds that will help calm him.
Ask for Social work support if you need to look for a nursing home.
Take care.

I'm so sorry you’re having to go through this, it’s truly horrific to see someone you love almost morph into a stranger. I watched my dad die of cancer and to be honest I wish I could offer better words of wisdom than I have. Your dad is still in there, he’s terrified and confused and if it’s like my situation you’ll take the brunt of it. He doesn’t mean to scare or confuse you he simply can’t control it. It won’t get any easier but you sound like an amazing daughter who is doing everything they can in an awful situation. If I have any advice it’s to try to remember the man he was and is, it’s the pain and meds that are altering his behaviour, I’m sure he loves you and somewhere deep down he knows your there for him. If he’s in a hospice he is slipping away but you’re there for him as difficult as it is, and that one day will give you comfort. He knows you love him x

This.

I’m so sorry for your loss.
Isn’t this what the assisted dying bill is for? I really must look more into this but I thought the bill had now been passed.

I'm struggling to find a decent nursing home, anything decent is full. I'm worried about choosing the wrong one.

@Tetchypants my apologies - it looks like 2029 before it might actually be through.

It will take a few years to be put into action,?2028? And not appropriate for all.