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

[Totallybannanas]

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 They have increased his medication and have withdrawn normal medication.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.

He's got days to live OP, sorry. I doubt it'll be another week.

Thank you for your lovely words. The nurses seem reluctant to say to be honest, they keep telling me he is very strong. They just say they will let me know if anything changes, but I don't know what those changes are. His breathing seems steady and his hands and feets still warm.

Hi @Totallybannanas
I'm sorry your dad is getting to the end of the road.

Please stay with him. From what you've posted, he hasn't got very long now. A few days, if that.
Has he got a syringe driver in situ?

It's never easy to predict when someone will die, but he's likely not taking in enough fluids now, and he's stopped eating. The yellow tinge and sunken eyes are signs that the end is approaching.

You've done your very best, in quite difficult circumstances at times. I remember all your other threads.

It's so distressing to watch as you can see he can't tell you what he wants and he's not comfortable. Seems to be hot and cold. No syringe driver, but they have it in standby. He is still taking things orally and having injectables.

He has a pad on too, I think he is aware when he is going which is causing distress as he is wanting to go to the bathroom.

I would ask for the syringe driver to be started and midazolam and morphine to be included. Midazolam will calm him and morphine will also do this, as well as relieving pain.

My Dad was given 3 to 6 months at the end but died in just under 4 weeks. He got very agitated especially about not using the toilet, couldn't swallow and didn't have any food/drink for 3 weeks. It was slow, painful and cruel decline (liver cancer) and the nursing home he was in couldn't cope at all with his care needs but there were no hospice places available.

Stay with him. I spent hours and hours with Dad in his last 3 weeks, and have never regretted a minute of them. I'm so sorry

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

My Mother was diagnosed with terminal bowel cancer mid January. She lasted until early June in a care home.

About a week before she passed away, she started getting quite confused - up until that point she was absolutely fine - eating, drinking, totally compus mentus.

I mentioned to the care home Manager she seemed more confused, she agreed and kindly suggested all of my sisters and I may want to spend as much time as possible with her. We saw her a few days later and she wasn't eating, sleeping loads and kept saying she was itchy (her kidneys were shutting down). When we said goodbye to her, we held her hand and her hands were very cold - we later realised that it was her body trying to survive by drawing heat from all "non vital" parts of her body.

My sister saw her three days later - she was essentially unconscious and her breathing was apparently "rattly" - she passed away 3 hours after my sister left her.

It was incredibly upsetting - but we were comforted knowing that she wasn't in pain, we'd all told her we loved her and right up until the end the standard of her care was excellent.

Having never had a loved one pass away from cancer, we had no idea what to expect - I found the NHS website quite helpful and could actually tick off most, if not all of the things it suggested happened at end of life as my Mother exhibited all of them.

Right at the end, the care home played music and put all our photos on her bed. Apparently the hearing is the last thing to go? I'd absolutely do whatever you feel will give you peace and if possible, make sure your Father is as comfortable as possible.

I'm very sorry for what you're going through and wish you a lot of strength in the coming weeks.

What we realised when DM passed away, was that death is not a sudden event, it really is a process. It actually took a good six weeks from when we told our GP we needed help, and with carers visiting regularly, we were able to keep her at home. Heart failure not cancer, which probably made it much easier, as pain wasn't an issue.

The professionals expected her to pass a good couple of weeks before she did, but she chose her time.

Wishing a peaceful passing for your Dad and comfort for you.

It really helped me reading material by Dr Kathryn Mannix - she explains the death process really clearly and in an easy way to understand (she's a palliative care Doctor) www.kathrynmannix.com. I learned not to panic about Dad's agitation - he wasn't really aware of what he wanted either as his organs were shutting down. It was however a weird sort of relief when he went onto the syringe driver and went into a deep deep sleep.

Apparently they won't put a syringe driver in yet because he keeps moving and getting up, and likely to pull it out. So they are giving injections.

Goodness. If they put it in and sedated him, he wouldn't be able to pull it out.

It'll likely be the same medication that they're injecting - but I would question if he needs something adding in. I had to fight tooth and nail to keep Dad's medication topped up as he needed it more often than the drug rounds they had in their routine. Don't be afraid to ask them lots of questions and push if you don't feel you're getting answers.

Apparently the injection they gave had oxycodone, madazolam and something else to dry up the secretions. They are amazed that he still manages to get up and about at the minute with what he having.

The syringe driver is a much more efficient way of giving this medication. It provides a steady and continuous dosage. There are no peaks and troughs as there are with i/m injections.

Ok, I will ask. I did speak to my hospice social worker and they said not everyone has a syringe driver but they have signed one off for the home when he needs it. It's all very confusing, maybe they don't think he's quite there yet? I don't know. They have upped his pain medication, I know that but I worry when I'm not there he isn't getting it when he's asleep and then he's getting breakthrough pain.

Mum went very quickly in the end. She'd been frail for a number of years (heart and lungs not working well). I visited her in hospital on Thursday, my sister went on Friday and was told Mum had about 36 hours left.

Me and adult child went straight away. Mum wasn't conscious, but seemed comfortable.

Mums other two grandchildren joined us.

After a couple of hours, one of her grandchildren thought Mum was in pain, doctor was called agreed and said they'd give her paracetamol, as morphine would"depress her breathing". We agreed as a family, that her breathing was not an issue (she was dying, for goodness sake) and the doctor agreed to give her morphine.

she died so very peacefully at six hours later.

my advice? Do what you think is right, whatever that is. And accept the consequences. Your parent may die without you being there (I understand that some people do wait until they are alone) or you may miss work while your parent hangs on for a limited period.

neither option is right or wrong. Your parent has to go through this alone, our presence may help, but it may be immaterial. As yet, no one has the answer to that conundrum.

best wishes

Hi OP,

So sorry you’re going through this. My poor dad passed away in July with mouth cancer, and so couldn’t communicate either - that felt the cruellest part of his whole cancer.

His last few days were pretty textbook I think, but he did keep going a few days longer than anticipated. Here’s what happened:

• increased sleeping almost 24/7
• increased confusion/agitation (including sheet gripping, raising arms in the air, moaning). Dad was immobile though so couldn’t get up like your Ddad is doing
• Rattly, agonal breathing - this started about 4 days before he passed. It got bad one night and sounded like he was choking on secretions, syringe driver was started the next day.
• from that point he was mostly very peaceful and unconscious
• on the last day his breathing became much shallower/quicker
• his hands and feet never really got colder, but his skin did look a little mottled
• in the last hours his eyes were sort of half open - I understand the muscles aren’t working at that point to keep the eyes fully closed
• he passed quietly an hour after I left to collect my children. I’d played some very special music and rested my head on his pillow and told him how loved he was - I think I knew he would be gone very soon

Do push for the syringe if you feel it’s in his best interests - I was a little surprised at the reluctance of a few nurses - it took a very firm district nurse to take control.

As PP has said - it is definitely a process. My dad was actively dying for almost three weeks. But the last few days were very peaceful.

Do try to be there if work allows - it’s a privilege to be with them at the end, and has changed so many of my fears and worries about death.

Sending you lots of strength and courage.

With my mum, lung cancer, she stopped eating & drinking. Then started sleeping almost all the time. Meds were constantly increased.

4 days after she stopped eating and peeing, her face changed, like it had lost all the fat under the skin. The nurse pointed it out to me so I knew the end was near.

The nurse then asked me if anyone has told mum it was ok for her to go, and I knew no-one had. Mum woke up briefly and I told her it was ok to go, she had people waiting for her.

She passed about 2 hours later.

Once someone stops producing urine, stops eating and drinking, it's close.then

I'm very sorry, I hope your dad's passing is peaceful.

Someone else mentioned Kathryn Mannix and this short clip explains a lot in a very simple but lovely way.

My mum passed in days but it was dementia, she chose to stop eating and drinking as it was the only thing she could control I think
from going into hospital it was 48hrs. I went back at 10pm as I had a weird feeling, sat with her for a while said to the nurse (out of her hearing) “not long now” and the nurse disagreed
she went 15 mins after I said it and it was very peaceful, she just stopped breathing