abusive father dying of cancer and in significant need of care, not sure what to do

hi everyone, i'm 18F and i just got back from my first year of living at uni to stay with my parents over the summer. my dad found out a couple months ago that he has a malignant neuroendocrine tumour in his duodenum, and that there is cancer in his bile duct and liver and possibly pancreas. we don't know the specific details of his diagnosis nor prognosis yet as his oncology appointment is next week. he has been extremely ill for a while however, and had to go into surgery a month or two ago to give him a temporary ostomy bag to reduce all the bile blocked by the tumour and redirect the flow of his bile around it. he developed pancreatitis after this surgery and this has become chronic. he was in hospital for weeks after surgery and we've had to take him back to hospital a couple times because he's been in 10/10 agonising pain and unable to eat anything. we believe this was caused by an infection and he came out of hospital after the course of antibiotics but he is still extremely ill. he can barely talk, sleeps most of the day, vomits most food he eats back up, and just lies there moaning and writhing in pain every day even with oxycodone and other strong pain meds regularly being taken. 

he needs a lot of care and my mum does a really wonderful job looking after him. he's a bit selective on what he can and can't do when he does occasionally have energy to do something, like he can get to the kitchen to get a snack but he won't take the plate he had out on the side through with him etc. between me and my mum we act sort of like a maid cleaning up after him. i do fully understand that there are some things he can't do and that's totally okay, i think it's just the way he's acting towards us that makes it difficult to keep caring for him. my father has always been abusive to me and my mother, and i have both ptsd and bpd which were developed in childhood specifically because of his abuse. he has narcissistic personality disorder that is completely untreated, and the way that manifests in him is that he is very two-faced in his behaviour. sometimes he can be funny, charming, and a good laugh, but he is also very emotionally abusive and has destroyed both me and my mother's self esteem (he is always trying to make us feel inferior so he can feel superior in comparison).

he has been especially awful to us since he became ill. i've learned over the years that my father has "no-go subjects" which is anything involving anyone else's emotions, opinions, beliefs etc. because i've never had the opportunity to go NC with him, i've had to learn to navigate interactions with him and carefully steer conversations away from those subjects. the result of that is a very stilted, closed-off, almost colleague-like relationship with my dad but i've been burned one too many times to even attempt to be remotely open with him. although things got more complicated to navigate when my mother got involved with conversations as a) it's 100% her choice how she interacts with him and b) she's still somewhat in denial about the extent of his abuse, for the most part the system worked. there would be occasional episodes when my mum and him got onto a no-go subject but there was no direct abuse from him to me anymore because of the whole grey rock thing. unfortunately since he became ill however he's actively been hostile to both of us and there's nothing to navigate or steer around anymore. our poor dog is terrified of him because of how much he shouts at me, my mum, her, and he has started throwing things at her too. 

it's a difficult situation because i would not wish his pain and suffering on my worst enemy. as much as i resent the bad parts of my dad and continue to live with very painful mental illnesses because of the damage he's done (and continues to do), i am also really genuinely grieving the good parts of him and the positive memories i do have, more and more as he gets further into the process of dying. but at the same time his actions are not okay. emotional abuse towards your loved ones is never okay, but that's the way my life has always been and i know he developed his npd because he was a victim of childhood abuse himself. doesn't excuse anything but there's a layer of complexity in his abuse towards us. physical abuse towards our animals however is genuinely irredeemable. there's no excuse for throwing heavy objects at a small dog just because it's afraid of you and barking because you're a threat to its safety. before that happened i was quite active in caring for him, making sure his needs were met as much as possible, but with how awful he's been i just don't know what to do anymore. yes, he's dying in an extremely painful way and i do genuinely feel so sorry for him. but he's a horrible, hurtful human being and i feel very little compassion for him because of what he's done. does anyone have any advice on how to deal with this? 

  • Hello bleach070805

    I'm so sorry to hear about the situation that you currently find yourself in. It sounds like it's a really difficult time for you all and understandable that you're experiencing a rollercoaster of emotions. I'm glad that you've had the courage to reach out for some advice and support. 

    We know from many posts here on the forum that people's behaviour can deteriorate after a cancer diagnosis. This often seems to worsen further after a terminal diagnosis. It's sad to hear that you've grown up in a household where this kind of behaviour wasn't unusual and it's likely that your's fathers condition is now exacerbating what is for him, normal and acceptable behaviour towards his family. However, this does not excuse the abuse that he is directing towards you, your Mum or your family pet. 

    As you are now home presumably for the next few months, I'd really encourage you to have a frank and honest conversation with your Mum about this situation. You will be better able to support each other if you know where you both stand and make a plan for how you want to try and move forward with caring for your Dad. Whilst your Mum may be in denial about his behaviour, what you've described is domestic abuse and neither of you should have to live in fear. If either of you would like to talk with a domestic abuse charity for some support and advice then you could contact Refuge as a starting point. 

    In terms of your father's care, what support are you getting with managing his pain etc? Are the community palliative care team involved? Please speak with them about his pain levels. It's also worth trying to talk with them about your father's behaviour. I'm presuming that at some point in the autumn, you will be returning to University and it may benefit your Mum to have support from the team especially if they are aware of the dynamics at home. 

    I don't know if you have support from family and friends around you back at home. Don't be afraid to lean on them during this difficult time. It's important when caring for someone who is dying from cancer to make time to look after yourself as well. And particularly so given all that you've shared in your post. 

    Hopefully, some of our community members will reply to share their advice and support with you soon. If you want to talk with one of our nurses at any point you're welcome to call them on 0808 800 4040, Monday to Friday 9am to 5pm. 

    Keep in touch and let us know how you're doing. We're here to listen and offer any help and support we can. 

    Best wishes, 
    Jenn
    Cancer Chat moderator 

  • I won't parrot what Jenn said because the simple fact is, cancer doesn't give anyone a free pass to abuse or to continue to abuse others.

    What i will add, his previous, makes this extremely difficult to separate his current behaviour from his past behaviour. Pain, especially chronic pain, can make anyone cranky, and until you're in that position, it's difficult to fully put into words how much pain can lead to someone having a short fuse. Then there's the fact, some medications can add yet another layer of **** on top of the layer that's already present. Steroids being the most infamous culprits. My wife was an absolute nightmare when on them. But because she wasn't like that previously, I knew it was the steroids, and not really her. So it was easier to brush off, but it's easier to type that than sit through it because i found it very difficult at times to understand her behaviour at times when she was going off on one.

    None of this is said to excuse your dad's behaviour, more so his pre cancer behaviour, but it could be a factor in his current aggressiveness.

    Regardless of his state, if it gets too much for you or your mum, I'd touch base with his medical team and explain the healthcare system can deal with him because you aren't willing to put up with threats etc. No one should stay with anyone out of blind loyalty if their life is being made utterly miserable by the person they are caring for. There's this weird mindset in society that you as the carer and your wellbeing comes a distant second to any serious illness. Also remember, NET cancers can act differently from normal cancers, and the patient can live considerably longer than had it been an adenocarcinoma cancer. There's been a few people with NET cancers that the short term outlook has looked bleak, only for them to regain some normality after medical intervention. The most famous being the story of Chris Rea. My uncle also looked on death's door when he was first diagnosed with NETs, then after his initial treatment, he lived considerably longer than had it been a non NETs cancer. So there's all that to consider too.

  • hiya, thanks so much for the response. it's a little hard to find a place to talk about this so openly and I worry if I bring it up to support networks etc I'll be met with hate for not wanting to care for him. it feels a bit like "dying of cancer" is a bit of a trump card for all other problems at the moment, even abuse. I know that's not right, it's just how it feels. 

    thank you as well for the signposting, I have talked to my mum about a few things but unfortunately she's extremely ill with covid in addition to her usual difficulties with fibro and cfs so she's not really been well enough to have a proper talk. she is beginning to accept that he is abusive after reminding her of how he's treated me however (it was out of sight out of mind for her).

    honestly i have no idea about anything to do with external care. i've never even heard of the community palliative care team. his medications are being prescribed and monitored by our gp but there's not really any other medical professionals in the picture at the moment. maybe that's something that will change when we access oncology? the appointment next week will be his first one. i've never had a close family member go through cancer before so there's a lot that I just have no idea how it all works medically. we are also in wales which sometimes affects the services available, i'm not sure if that's the case here too.

    unfortunately i'm not really close to any family that isn't my parents but i do have good friends who i've told about the situation and they've been very kind to me about everything. once again thank you for the support and it's a huge help :)

  • thank you for your advice and kind words. it's been a little difficult just to know how to feel about everything to be honest. obviously he's been like that forever but he had a life changing accident in 2021 that pretty much took him from a marathon runner to about as injured as you can be without being permanently dead. he became very abusive after that too, and it was extremely difficult for both me and my mum to deal with that + the ptsd from the accident itself. this feels like the same thing, just worse. I don't think there's a single good answer as to what to do, I guess it's just about finding the balance between the situation and my own mental health (physical too - I'm disabled myself and can barely walk). 

    I mentioned this briefly in my reply to Jenn's comment but at the moment he doesn't really have a medical team as such? His meds are being managed by the GP but there's not really anyone else in the picture to mention anything to at the moment, but maybe this will change when we get to oncology. 

    thank you as well for the info about NETs, i've been told they're quite a rare type and so there's not been much info from the doctor about it yet. they've said it responds well to chemo, but my dad doesn't know if he wants to do chemo yet because it is definitely terminal. he's said that extending the quantity of his life if the quality is not there (certainly isn't right now) is not something he wants. but obviously it's very early doors yet as to what his life might look like, just like you said. what we've been sort of told behind closed doors by the doctors is that if the cancer is not in his pancreas, that's a good sign of a fair few years yet but if it is, the prognosis will probably look quite bleak. so that's something we might find out a bit more about next week as he gets to oncology. 

    thanks so much for the reply :)

  • Here's a link to the official NETs site in the UK https://www.neuroendocrinecancer.org.uk/

    They don't have forums, but they do have a facebook page, and it's supposedly quite active with people in your dad's position. But not been on it for a few years.

  • Hello

    How are things now a few days on?

    Have you connected to the community nurse team yet?

    Regarding your own mental health Mind are good place to start you deserve support and you will find others with similar life experiences Also your uni should have mental health team even in summer break that you can reach out to. Also if you have not already consider sharing with your tutors you will be entitled to an extension on hand in dates for your assignments if you need them. Also do you have disable student support for your ptsd bpd ? You can apply for this ask your student support team...

    Take all the help you can get you are carrying a lot. Also regarding your little dog speak to Rspca they may be able to help get a foster space for the interim..

    Also womens aid for both your mum and you can help with all these. You don't have to go through this alone. And if you are in danger get out stay out

    Take care of yourself you are worth it

  • hiya, thank you for reaching out even though this post is a little old. my dad passed away on the 30th of June, apparently the cancer had spread to his pancreas which is why it happened so quickly (8 weeks from diagnosis to death). it means a lot of what I was worried about in my post doesnt really apply anymore. it's a relief that the difficulties and abuse his cancer as well as his own mental health issues even before that caused in my family is gone now. I'm still in deep grief for the parts of my dad that I loved very much and the good qualities he did have, and the presence he had in my life however. im in therapy and ive just contacted mind, going to have a few counselling sessions with uni as well so hopefully I'll have lots of support. im taking a gap year out of uni too, between his death, my disabilities meaning i can barely walk at the moment and my plans for accommodation falling through lastminute there were just too many signs to do something else this year for my own health, both physical and mental.

    again thank you for the message, I really appreciate it <3

  • Hello once more

    It is very hard when we lose a parent. i send love to you and your mum and doggie. I think you are wise to give yourself the space to grieve and to look after your physical and mental health. Be kind to yourself you are worth it