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End of life care-how long and what can I expect?

54 replies

Totallybannanas · 19/09/2025 17:25

My df has stage 4 oesophagus cancer. The last week he has declined massively. His bowels were impacted and he was vomiting faeces and then he had fever, I encouraged him to take laxido and then he managed to pass a stool and perked up. They did query sepsis but this was ruled out by the doctor. He was brighter the next day, but never recovered and was agitated the following day. He hasn't eaten since Monday, taking small amount of fluid but still passing urine. His mouth has been very dry. They have increased his medication and have withdrawn normal medication. They did wonder if the pain he was having was his liver. His eyes are sunken, and I swear they have a yellow tinge but they seem very unfocused. His hands and feet still feel warm and amazingly they found him walking down the corridor earlier! I can hear secretions on his chest now and then, and him trying to clear his throat. They said he is very strong, probably because he has always been active. I haven't been to work the last few days, as it's been so distressing and I'm mentally exhausted. And I don't know if I can face it next week. He is currently in a nursing home, and they are doing hourly checks but unable to sit with him. I've had a lot of time off all ready as was caring for him before he went into the home. Would you take time off now? I work term time so taking leave isn't an option.

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Totallybannanas · 19/09/2025 23:17

Thank you everyone for your advice. The worse thing is having to put my trust in the nursing home especially when I am not there. I'm trying to be there as much as possible, and be his voice when I can see he in distress. But sometimes I don't even know what he needs. The hospice nurses have visited, so I'm grateful they are keeping an eye on things. It just seems so cruel to put them through this, he's losing control and his dignity 😔

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DaysofHoney · 20/09/2025 04:26

Totallybannanas · 19/09/2025 23:17

Thank you everyone for your advice. The worse thing is having to put my trust in the nursing home especially when I am not there. I'm trying to be there as much as possible, and be his voice when I can see he in distress. But sometimes I don't even know what he needs. The hospice nurses have visited, so I'm grateful they are keeping an eye on things. It just seems so cruel to put them through this, he's losing control and his dignity 😔

It was at exactly this point that I pushed the hospice team and district nurse for the syringe driver. Presumably at this point they have told you his passing is fairly immiment? I don’t think they give any of those meds (even without the driver in place) unless it’s imminent - and so prolonging things is cruel.

We were lucky to have a fantastic district nurse who, when she saw dad, took firm control and said “we know he’s dying, now is the time to make it as dignified and peaceful as possible” - I would start pushing them.

MrsLizzieDarcy · 20/09/2025 10:03

Don't be afraid to say this isn't good enough, and say it loudly.

I made such a racket when I caught a nurse trying to forcibly medicate Dad with soluble paracetamol that the Consultant from the hospice who Dad was under brought in the community palliative care specialist nurses who then went in daily and made it very clear to the nurse on duty what time/what type of medication Dad needed. Even when they told them Dad needed the syringe driver, it took from Monday morning to Wednesday afternoon to get this done - and in the end, the community nurses did it as they were furious when I rang in tears to say Dad still wasn't on it. We had a very poor relationship with the nursing staff by the end, safe to say but the care staff were worth their weight in gold.

It's not the kind death that you want for your beloved parent Sad

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Totallybannanas · 21/09/2025 14:33

I'm still confused about their reluctantance to put in a syringe driver. They said because he gets up and walks this seems to be first thing, he would pull it out. They said they would put it in if they couldn't manage the pain or if having too many injections. One nurse said he was in the transitional phase between being awake and sleeping, another nurse said he is fighting the sleep and other nurse said he isn't quite there for a syringe driver. Yesterday he was out of it like he was very drunk and trying to move in the bed to get comfortable, pulling at the blankets, pulling his pad and trying to move his bottom which I think is hurting. He seems restless but struggled to verbalise what he wanted, his speech is very mumbled and I find him hard to understand. It takes all his mighty to say something loud and clearly when he can. He wasn't in a deep sleep and kept making faces and just looked uncomfortable, despite them trying to move him and checking his pad was dry. I wasn't sure if he was in pain or agitated, so the nurse got some medication, oxycodone and midazolam. She then asked if he was in pain but he struggled to answer and as she gave managed to so no pain! He fell asleep not long afterwards and now I feel awful that maybe he didn't need or want the pain relief. Wasn't he trying to tell her no pain or that he wanted no pain 😢

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TheBroonOneAndTheWhiteOne · 21/09/2025 14:42

Midazolam is like strong valium, so it will calm him.
I still think he needs the driver. It gives continuous medication and they can increase the dosage of everything so that he isn't agitated.

Totallybannanas · 21/09/2025 18:59

Thank you he seems so restless and wants to get up and walk but he's not great on his feet. He's also over 6ft tall and heavy despite his weight loss. He's so hard to tell what stage he is at.

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Kelly1969 · 21/09/2025 19:07

Totallybannanas · 19/09/2025 18:15

Thank you, I feel so helpless as he can't tell me what he wants 😔

While its impossible to know what he wants, I would guarantee he is taking great comfort from you being there x
hopefully your employer understands, I work term time too and had to have about 9 months off due to my daughters anxiety, I hope your employers are as kind.
You won’t regret being there for him but I’m sure you’ll regret not being there x

Totallybannanas · 22/09/2025 07:40

They out a syringe driver last night, but don't seem to have got his medication right. He was hallucinating, trying to get it of bed, very confused and talking alot of gibberish. In pain and discomfort with his bottom and back as he's not stuck in bed. Even when he was asleep he was talking all night, restless and touching things around it was heartbreaking. It made me cry and laugh at some of the things he said. I had to laugh and even smiled. I still understand why this is happening and what causes it.

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Totallybannanas · 22/09/2025 07:41

They out a syringe driver last night, but don't seem to have got his medication right. He was hallucinating, trying to get it of bed, very confused and talking alot of gibberish. In pain and discomfort with his bottom and back as he's not stuck in bed. Even when he was asleep he was talking all night, restless and touching things around it was heartbreaking. It made me cry and laugh at some of the things he said. I had to laugh and even smiled. I still understand why this is happening and what causes it.

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TheBroonOneAndTheWhiteOne · 22/09/2025 15:21

They don't sound very competent @Totallybannanas

He clearly needs a higher dose of the morphine and midazolam.
SMH.

Totallybannanas · 22/09/2025 18:09

They have been giving too ups with injections, and looking to review with GP to adjust it based on how much he is now needing. I've not stopped crying all day today after staying the night. It's the most upsetting I have even seen.

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MrsLizzieDarcy · 22/09/2025 18:31

If I remember correctly, once the syringe is dosing, that is set for 24 hours. So with the 1st dose, they didn't give my Dad enough but on the 2nd day he was much better.

My heart aches for you, I can honestly say watching my Dad die before my eyes nearly broke me. I'm 2 years on and still having nightmares. You're not alone.

Mirrorxxx · 22/09/2025 18:34

so sorry you are going through this. My grandfather recently passed from stage 4 cancer. He was diagnosed 6 months ago but went down hill very quickly in the last 3/4 weeks. The waiting is really awful. Best wishes to you both

ajandjjmum · 22/09/2025 18:46

Sending you love and strength @Totallybannanas .

If it is any consolation, this is probably the hardest thing you will ever go through. I hope that it will eventually bring you some comfort to know that you could not have done any more for your Dad.

Saz12 · 22/09/2025 19:19

I'm so sorry for the situation you're in. I found the dying process of my DF really traumatizing; its something few people want to hear or acknowledge.

I hope both he and you move to a more peaceful situation soon.

Oikoi · 22/09/2025 19:34

Im so sorry to read about your DF. I went through similar with my DF 2 years ago. My DF was trying to get out of bed even though he was on a syringe driver, he was hallucinating and talking gibberish. I've worked in care for a long time and seen many people at end of life I didn't somehow see the signs when it came to my DF.
Remember to look after yourself as well

BigHouseLittleHouse · 22/09/2025 19:51

I’m so sorry to read your thread. My dad died of cancer of the oesophagus, with secondary mets in his brain and elsewhere which meant he lost the power of speech.

It is very hard to be so helpless, and not being sure how much pain your relative is suffering makes it so much harder. Exhausting and emotionally draining. Sometimes people can hang on and on, and then somehow even when they die you’re not ready, you feel guilty for being slightly thankful that the suffering is over, and you have to then start the grieving process.

I hope the nursing team find a way of controlling his pain, and that you give yourself permission to take a break and rest. Best wishes.

Catsolitude · 22/09/2025 20:24

Sending you much sympathy and strength. Been there with both parents and there are no words for the fear and emotion. Trust your instincts as another poster says. At the end of the day, work is not important in the grand scheme of things. I remember fretting over taking too much time off in the “no man’s land” before death and ultimately now I have no idea how many I did take but I didn’t get sacked and the work world didn’t end. One more point- this might not be you but I was so worried that all I would remember was the last days of my parents. It was so traumatic and they looked so awful. I thought the images would never leave me. But they did and while I can never forget the hospital and their final days, it’s all a bit hazy now and I can remember them as they were when they were well. Be kind to yourself OP.

WickWood · 22/09/2025 20:27

I'm so sorry. I hope he goes as smoothly and painlessly as possible x

MyElatedUmberFinch · 22/09/2025 20:30

My thoughts are with you, I was totally unprepared for my DF’s death. I didn’t know about the distress and anger, this lasted a day before they sorted the morphine out. He died a week later but was almost dead apart from breathing for about four days before with a fixed stare, rattling and unable to move or respond to anything. When he died it was actually easier than the week leading up to it.

Totallybannanas · 22/09/2025 22:03

Thank you everyone. The gp had given the wrong dosage but the hospice nurse has sorted he is restless but more settled if that makes sense. He knows I'm there and gave me a lovely smile in-between talking gibberish. It's very strange, but I'm trying to take the positives that he isn't in pain and can still acknowledge me. They have him a suppository which has also helped. I wasn't prepared for be terminal agitation. I have had to laugh at some of the things he said or I would have cried all night.

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TheBroonOneAndTheWhiteOne · 22/09/2025 23:04

The GP had given the wrong dosage but the hospice nurse has sorted it

Thank goodness.

TheBroonOneAndTheWhiteOne · 24/09/2025 09:20

How are you and your dad today @Totallybannanas

Totallybannanas · 24/09/2025 22:38

TheBroonOneAndTheWhiteOne · 24/09/2025 09:20

How are you and your dad today @Totallybannanas

They have upped his dose again and he seems a bit more settled. Hands still moving and his poor bottom is hurting/aching as he keeps lifting up. He is more sedated now, I hope this is the kinder option for him 🥹

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DaysofHoney · 02/10/2025 19:05

How are you @Totallybannanas - I hope everything has been peaceful for you and your dad.