My brother-in-law was diagnosed with stage 4 pancreatic cancer in July and at the time we were told his prognosis was probably only a couple of months.
In September he spent three weeks in hospital because his pain had become so severe that they were struggling to get it under control. He eventually came home, but two weeks ago he was admitted to a hospice because his wife could no longer manage his care safely at home.
I’m posting because I would really like to hear from people who have been through the final stages of pancreatic cancer with someone they love. I know everybody is different and nobody here can tell me exactly how long he has, but I feel as though we need to prepare ourselves for what is coming.
His pain has been very difficult to control. He has been on high doses of medication through a syringe driver. He was previously receiving morphine through the driver, as well as up to five additional subcutaneous top-ups a day, but the morphine was no longer controlling his pain adequately. They have now changed the opioid in his syringe driver to oxycodone.
He is also receiving clonidine through the syringe driver and haloperidol for nausea, vomiting and hallucinations. The hospice continues to adjust the medications to try to keep him comfortable.
Since Friday, however, his hallucinations and delusions have become increasingly vivid and disturbing.
This morning was particularly awful.
At around 5am he became convinced that his wife had married the man next door. He said she had actually arrived at the hospice wearing a wedding dress to rub it in his face. He could see her there and said he could see someone's hand hiding behind the door.
None of this happened, obviously, but to him it was completely real.
He then telephoned members of the family, including his daughter, his estranged son and us, making accusations. He told us he could never forgive us because we had been hiding things from him about his wife.
There is absolutely no reasoning with him when this happens. He says these things with complete conviction.
What makes it particularly strange is that we can then telephone the hospice and ask a nurse to go into his room. When they do, he can suddenly appear completely normal. He is calm, takes his medication and says please and thank you. The nurses can walk away thinking he's absolutely fine, while minutes earlier we've been on the phone with someone who appears to be living in a completely different reality.
These episodes have been happening since Friday and seem to be becoming more intense and more upsetting each time.
The hospice has now done blood tests and neurological observations, so we are waiting to see whether they identify anything that could be contributing to the confusion.
The other major change is his eating.
He is barely eating anything now.
Yesterday, for example, he had perhaps one spoonful of his main meal and one spoonful of pudding. Then he says he's full, doesn't want it or doesn't like it.
Food has to be very soft or mashed for him, although a speech and language therapist has assessed his swallowing and apparently his swallowing function is still okay. He can also still swallow his tablets.
He is drinking water and will drink the protein milkshakes they give him, but actual food intake is now almost nonexistent.
He is also increasingly sleepy.
The hospice has said they believe we are looking at a few weeks, but when I look at how little he is eating, how frail he has become, the amount of medication he requires and these increasingly severe hallucinations, I find myself wondering how his body can continue for weeks.
I suppose what I'm really asking those of you who have sadly been through this is:
Did your loved one experience vivid hallucinations or delusions towards the end?
Did they have periods where they seemed completely confused with family but could suddenly appear perfectly normal with nurses or other people?
When they virtually stopped eating but were still drinking, how far from the end were they?
Did you see a gradual deterioration, or did things suddenly change very quickly?
And perhaps most importantly, looking back, were there signs that you now realise meant the person had moved from having “weeks” to having “days”?
I'm not looking for anyone to predict how long he has. I know nobody can do that.
I just want to understand other families' experiences because I feel we need to be prepared, particularly for his wife. She is finding the hallucinations and the things he is saying incredibly difficult, even though we know intellectually that this is his illness talking.
Thank you to anyone willing to share what the final weeks or days looked like for your loved one. I know these aren't easy memories to revisit.
