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.

I think some of the feelings you have articulated here are around the fact that you've all had this massive shock just 8 weeks ago, you are all still 'getting used to' your dad's diagnosis and you're properly in the thick of it. If your Dad is acting aggressively etc I think that sounds like it's one thing (others posters have given more practical insights), but it he's melancholy and down that's different - he's coming to terms with his impending death. You are right, he's not the same person in many ways. Don't feel pressure to distract him, or keep him upbeat, like I say as long as he's not being aggressive, just BE with him, it sounds like it's a comfort to him if he wants to there. This will be hard for you to do, cos how do you relate to someone in such a different way? But you can do it. I just 'was' with my Mum. I mean I cared for her too, but both my brother and I just sat with her literally and metaphorically while she went on this journey - that's what we often do with those we love right? Just be with them while they go on this journey, so they know they're not alone, and they are loved. I know you have lots of hard, practical things to do too, but perhaps this will give your Dad some much needed comfort?

I am so sorry to hear that you are going through this. Your beloved Dad is suffering and so are you. As pps have said, it's a common scenario. I was there some years ago with my Dad; when he went into the hospice, it didn't look as if he'd be there for long. Three weeks later...and it wasn't good for any of us, especially him. Whether it was the drugs, the cancer or a combination of the two, he became restless and irascible. He wanted us there, but our company was too much for him. When we are very ill, the filter between us and the rest of the world that stops everything from being too much is often stripped away. Dad had a short spell at home (with carers) and was back at the hospice very soon afterwards when it became apparent that wasn't a solution either. As a family member on my DH's side said: I hope your Dad isn't stuck for much longer where he doesn't want to be. She was right; death isn't nearly the worst thing that can happen to you. Wishing you and your Dad peace.

She had said that she wished people could be given something to help them sleep forever - that’s what I was referring to

Op hello.I am so sorry you and your family are going through this. I could have written your post as it was almost word for word what we went through with my dad.He had the same cancer. The drugs didnt touch the sides of his pain and he stopped eating and drinking much earlier. My dad begged to go into the hospice for a break and he stayed there for 3 weeks until he died. He felt safe there.The last 8 days of my dads life he slept constantly until he passed away. The hospice enviroment suited my dad and us to be honest, they were wonderful truly wonderful. I don't know that your dad should be moved frankly it will be so traumatic for him. I will be thinking of you and cant offer much advice sadly.It is a terrible time and a terrifying time for some.We had a range of treatments like massages, sound therapy,even pets were allowed to visit and stay in some cases, we had a hippy vicar who was amazing,funny and kind yet warm and caring and it made it all more bearable especially for us as a family. I am so sorry really I am. I only read page one but I am going back to read the thread now in the hope you have found some peace. x

Sorry to hear this OP. My late husband had male breast cancer that came back in his bones, so it was incurable. Towards the end he too got extremely agitated. He would barely rest, constantly getting out of bed all through the day and night. I was exhausted trying to look after him. He'd also say really weird things (eg asking my DD to pass him the toolbox from under the bed - there was no toolbox and he had no use for a tool anyway). Eventually the hospice took him in for some drug management and they ended up having to sedate him due to how agitated and restless he was. He died two days later but we already knew the cancer had travelled to the lining of his brain and was responsible for his behaviour. What's your dad's breathing like? Another sign the end is near (for some, not all) is when their breathing changes and they take longer pauses between breaths. This went on for a week or so with DH, with the pauses getting gradually longer. My DH was also still eating small amounts up until the end. The morning before he passed he had a slice of toast and a smoothie.

My thoughts are with you and I hope your dad's passing is as peaceful as it can be in the circumstances, and soon.

Could he return home with increased carers? Some people have them round the clock i think. Ask to speak to the palliative care doctor. Ask about prognosis.

Can the hospice advise on a nursing home? The hospice advised us on a nursing home they closely worked with who had some beds essentially for those very close to end of life, but who didn’t qualify for a hospice place. My loved one was regularly visited there by a member of the hospice outreach team and was there for months (which would have been too long for a hospice place) even if they were full, beds came up regularly due to the nature of admissions?

Is he being given spiritual support? I don’t mean religion as he obs might not be religious- I mean chance to talk about being scared and what is important to him now and in the last few weeks? What has given him joy and purpose in the past? Non religious chaplains and volunteers can be very helpful here,

I understand he is very unwell but the reality is if he is still eating drinking and walking short distances he could potentially have short weeks yet hence the hospice unfortunately saying he needs a nursing home. I had this all the time as a deputy ward manager in the hospice. It felt awful sayibg people weren’t ill enough to stay when they were at their most vulnerable. It must be unbearable for you as his loved ones.
I would push heavily for a midazolam syringe pump as it’s the same as lorazepam but more potent as given as an injection and he’ll have a constant level of anti anxious med in his system as the pumps are 24/7. this could be managed in a nursing home once he’s stable on the medication. If he doesn’t respond to that there’s another drug called levomepromazine that cAn also be put in a syringe pump and is a fabulous sedative! I would query if he is absorbing the medications as it is common at this late stage that oral meds just don’t work properly so even though he can swallow meds injected into the skin can be really beneficial.i hope you can get Some sense out of someone but honestly i would say he’s not stable enough to move and they need to get on top of his symptoms before suggesting moving him. If he’s not managing moments of peace in a hospice with a much greater number of staff he really won’t in even the best nursing home

My post got long but I’m sending all the support and strength I can from afar

I'm sorry you and your Dad are going through this. We are starting on a similar journey with my Dad and it is so scary and upsetting. All we want is for our loved ones to be comfortable and pain free and hopefully have a gentle transition. I really hope the hospice can do this for your Dad xx

Poor soul, I really feel for you all.

Of I had some prognosis it would help me plan my life. I've had to drop hours at work with a sick note but the pressure to work more hours is already starting. I went sick for 8 weeks to care for dad when he was in hospital and then came home. I then suffered with grief and burn out so toke more time off. I just want to pause my life so I can deal with df.

Do get them to check to see if your father still has the UTI . My mother had one while in hospital and it was like she developed dementia overnight. Apparently it's common in the elderly and she was fine after a course of antibiotics.

I realise this obviously isn't the main part of his illness but he may feel less agitated once it's treated .

My DSis died last year while in a hospice. Initially she was very ill and not expected to live very long when admitted but rallied a little and arrangements began for her transfer home. She was very much like your DF, agitated and drifting in and out of lucidity.
Eventually we advocated for sedatives which helped her get some sleep, it seemed the kindest move, but does mean they are likely to be asleep a lot of the time. Some families want to be able to spend time talking and interacting, we are a family of HCPs and preferred that she was comfortable even if it meant that she wasn’t able to talk to us. To be honest she was so confused and distressed by her inability to communicate clearly, due to the secondaries in her brain, it was a relief for her to zone out on the drugs.

End of life is very unpredictable and after having her home assessed and arrangements for beds and care put in place she took a downturn and died within a couple of days.

Terminal agitation comes and goes but it is exhausting for everyone. We were allowed to stay with DSis overnight and the hospice put a bed in her room. We stayed with her in a rota so she was never alone. She was very frightened, a result of the secondaries in her brain and was very confused. Having one of us next to her 24/7 settled her so she could relax and eventually died very peacefully.
I thinking that having a familiar face there with them allays the fear. DSis was totally confused about where she was and what was happening. We just reassured her and explained what was happening and she was able to relax knowing we were there.

Once the pain meds were upped the staff put a hold on the transfer. It is generally an indicator the end is not far away.

If you are spending a lot of time with your DF please remember that you can advocate for him. The confusion and agitation means they can’t always ask for adequate pain relief. Don’t be afraid of asking for top ups. Even if he has a pump fitted, if he is experiencing break through pain you can ask for more to be given. At end of life you don’t have to wait for scheduled painkillers. It also gives the staff a better idea of the level of pain they are experiencing. Most of us are used to waiting until it’s time for the next dose, this doesn’t apply in palliative care. But it’s worth remembering that it isn’t the drugs that kills them it’s the cancer.

I did initially care for him at home, he lost 2 stone after being unable to eat and drink. He then got admitted to hospital twice and eventually had a stent fitted to help him eat. It was also During this time he had been diagnosed with terminal cancer stage 4. During that time he was severely malnourished and I thought I was going to lose him. I fed him and got him to the best I could and then it all came crashing down. We both realised this would be the best he would be and that he wasn't going to get better. I stayed for a week and visited daily, but he struggled emotionally then too. He's just waiting for death, and this type of cancer tends to happen fast. He was constantly ringing the nurses and palliative team daily, complaints about symptoms. He had me convinced he was on his way on a few times. It was a nightmare. I don't want to do that again.

@Totallybannanas My grandpa was nursed at home for 3 mths with end stage bowel cancer. Towards the end, in addition to morphine as he became totally agitated, he was prescribed Largactil. It calmed him enough to enable him to have some quality of life in the last week and he passed painlessly and peacefully. Perhaps worth suggesting this to the doctor in charge. So sorry you are going through this with a loved one.

Just read your post and it’s resonated. Do you have any support from MacMillan or similar? They may be able to give some advice

Wishing you courage OP. We lost my mum to cancer years ago and although we were lucky in her state of mind and her care, that horrible place of waiting and not knowing how much your loved one is going to suffer before the end resonates. There was a lot of just putting one foot in front of the other. I hope you can get a proper conversation with a doctor to get a bit more information ti help work out some next steps.
I do think that while it might feel like you can’t help, being brave enough to be there with him is a lot. I sometimes wish I’d been mature enough to give my mum permission to express her fears and sadness more. But we do what we can.
Have you had some carer’s leave? Is you work able to give more unpaid leave if you can afford it? That sounds like a huge extra stress. x

I just don't know how long he is going to go on for. He's losing weight, he's become incontinent. He's spitting up saliva. He's fatigued, confused, agitated and short tempered. But he is also talking, eating and drinking and mobile. His mobility isn't great though. His face looks hollow. And his lips looked a bit bluish to me. I almost wish rh was asleep and bed bound 😥

So sorry to read this OP. My uncle had the same cancer and was in a nursing home for a while before being transferred to hospice care. The staff in the nursing home were great and he could still manage to eat and drink there for a while. They arranged transport for him.

Agree that Macmillan nurses might be able to offer advice, they have an advice line you could call x

💐

I'm so sorry you're going through this. It's horrific. It's unfair to your dad and to you and your family. You have done so much for him, and even though he isn't quite himself now, I'm sure he knows what you've done for him and appreciates you being there even if he can't say so now.

I've been through similar twice now, and though at the time it feels unbearable, like you have the weight of world on your shoulders, you will get through it.

They won't give much of a prognosis because 1) they can't say for sure and 2) they know he is dying so normal scans and tests will not be done at this stage.

It will not get easier but it will be over soon.

Macmillan were fantastic for me and help to get the appropriate medication to control pain and the struggle to breathe (which is the part personally I found hardest to witness). If you don't have a contact with Macmillian reach out to them now.

If you can, I would suggest you ask your dad what he wants you to do to do.

When he talks about wanting to die or jumping off a cliff etc (which is incredibly common for people to say when they are suffering) talk about what you can do to make it easier.

It's a tough conversation, and most people are horrified and try to change the subject or tell the dying person they don't really mean it.

You can advocate and push for medication like midazolam and morphine, but that will mean he is out of it most of the time. You can ask him if that is what he wants you to do.

It will likely hasten his death. If that is what he wants, you can ask Macmillan and ask the doctors to help keep his agitation under control. If you can have that conversation now, it will help because when the time comes you'll know you are advocating for your dad and doing what he wants.

I have no idea about nursing homes, that must be another added stress on top of everything else for you. Can you ask your GP for help there? Have you had the "gold/"just in case" medications?"

My mum died in the hospital. My dad died at home with help from "hospice at home", but there were three of us to take care of him along with the district nurses and the hospice staff coming by to treat and administer the drugs. Even so it was terribly upsetting when the drugs wore off and he couldn't breathe - actually being in a hospice means you don't have to wait as long for someone to come and administer the drugs, but the panic and struggle to breathe even happened in the hospital with my mum and we ended up having to call Macmillan who overruled the doctor and gave a higher dose of the drugs.

It's so awful and stressful when a parent is dying and I'm so sorry you are all having to go through this.

I’m a palliative care professional, and just wanted to say that there are a lot of unhelpful inaccuracies posted. OP, I would urge you to speak to the medical team at the hospice. It’s usual for patients to have a medical review on a daily basis in the hospice, and I would expect their priority would be managing your dad’s levels of distress. They would usually be very keen to discuss your concerns with you.

Ask for his calcium levels to be tested? Elevated calcium levels can cause this type of behaviour and happens if cancer has spread to his bones. It happened to a close member of my family. Once they brought his calcium levels down he was more normal again. Sending a lot of hugs x

OP my heart goes out to you, having been through this situation myself with my Dad it is horrific.
There has been a lot of practical advice on this thread. Please could I reiterate you need to speak to the doctor in charge of your Dad's care, please book in an appointment.
Please also contact Macmillan as they should be involved and they will be able to give practical advice.
In terms of care what does your Dad want to happen? I would ask him if he wants to go home with carers or if he would rather go to a nursing home. Let him have the choice but be very clear if he returns home you won't be able to provide the level of support you have been doing. You will also need to insist on a minimum of 3 carers visits a day.
If you would rather your Dad went to a nursing home could you sell it to him on the basis of temporary respite care with a view to returning home in due course (whether or not this happens is another thing) but it would perhaps solve the issue in the short term.
When I was going through this I ended up being physically ill, I just couldn't cope anymore and my mental health has not been the same since.
Can you get POA for your Dad in terms of his health?
You don't need to drive your Dad to the nursing home, the hospice will do so if the decision is for your Dad to go to a nursing home.
With hindsight I should have gone to my GP, when I was going through this, and got signed off from work with stress, I would urge you to do so.
You are understandably finding it difficult to cope and who wouldn't? It sounds like you don't have a support network in place for you.
This time will be beyond horrific, it is impossible to make sense of anything and there is too much information to process and make sense of.
I still look back and don't know how I coped, it is heartbreaking and yes my Dad's personality totally changed, it was unbearable.
Just concentrate on getting through one day at a time and please speak to the doctor in charge of your Dad and also your own GP.
I cannot tell you how much I feel for you OP 💜.

I’m confused. Does hospice mean something else in the UK?

Here it is the service that manages your palliative care when you are dying OR the final facility you move into to die.

moving from hospice to a nursing home doesn’t make any sense.