Dad in pre-active death… how long and how to cope?

My dad has metastatic lung and liver cancer (so two primary cancers). He was diagnosed 18 months ago. He’s been supported daily in the most amazing way by my wonderful mum. But its now got to the stage that i think is termed pre-active death. He’s currently in hospital as we couldn’t cope with his delirium (we had to hold him to his chair at night as he thought he was being chased and when he got up to try and get away he would fall over). 

He’s not near to death enough to be accepted by the hospice. He’s confused and hallucinating (sees smoke and snow) and talks of trying to get home (by escaping, or by taxi, or by bus) but never asks us to take him home. 

He is very aggressive towards my mum. She cannot say anything right to him in his eyes. He often says to her she’s f’ing useless and f’ing clueless about the most mundane things. The look in his eyes towards her could be described as hate or evil - but i keep telling her its the disease that has reached his brain. They’ve been together since they were 15 (currently 66).

The hospital are attempting meds to sedate him overnight to make it manageable for us to take him home before active death starts and the hospice will accept him (he’s clearly stated throughout that he doesn't want to die at home for mum’s sake).

I will move in with them and take on the primary carer role. But i also want my mum to come out of this not fundamentally damaged by this aggression towards her. 

Has anyone been through this type of situation? How long did it last? How do i deal with aggression and confusion? I feel like the hospice and doctors should answer these questions but they’re not really communicating with us.

Thank you in advance. I know anyone reading here is suffering and is looking for insight too. And many are here after their experience to help others out - i appreciate and send love to you all  

  • Hello Yogisendingloveandlight

    I'm sorry to hear about your Dad's diagnosis and that things are so very difficult for you all at the moment.

    Unfortunately, I know from other posts that I've read here on the forum that your Mum is not alone in being on the receiving end of bad treatment from a loved one. It is a horrible situation and it's important to try and remember that this isn't your Dad who is behaving like this but the disease. I hope that the hospital team will be able to make your dad more comfortable and help to better manage things for you all. 

    As I mentioned, I know we have members who have been in similar circumstances and hopefully some of them will post to share their experiences and words of advice and support with you but in the meantime I'd encourage you to give our team of nurses a call. I'm sure they will be able to offer some advice and support. If you'd like to speak with them they're available Monday to Friday 9 am to 5 pm on 0808 800 4040. 

    We have some information here on our website which you may find helpful and you may also want to have a look at Maggie's website. Your Mum may want to think about contacting your local centre for some support over the coming weeks and months. 

    I know that this is a difficult time and I do hope that the hospital team are able to put proper support in place for you all when your Dad is discharged. If you struggle to manage things then please do get in touch with his GP or the palliative care team if he has been referred to them. They will be best placed to see if there is further support or care that can be accessed to help you all. 

    Sending my best wishes, 
    Jenn
    Cancer Chat moderator 

  • Hi. I am so sorry for your situation. As far as I was aware hospices accepted patients before agitation etc set in - I don't think the pre active and active stages of dying can be that clearly defined. Some people can be thought to have weeks but pass very suddenly. My father in law and another family member only became agitated approx 3 days before passing so it may be worth ensuring the hospice definitely has the full picture? My step nan became paranoid and hostile - would only trust one of her children and thought the rest were trying to poison her. It must be incredibly difficult not to take it personally but you have to keep telling yourself it's the disease. I really hope you get a care plan in place soon.