Hi all, I am new here and I'm not sure where to look for help. Apologies for what will be a long post. My dad has primary hepatocellular carcinoma, diagnosed this year and what we thought was secondary lung cancer but is actually also a primary tumour. He is terminal, they won't treat him at all due to his age, co-morbidities and general lifestyle.
Our current problem is that dad seems to have given up. He was hospitalised about 6 weeks ago with respiratory issues and AKI due to dehydration. He was in for almost a week having medications and a nebuliser and they kept him in until his kidney values normalised.
Since coming home, he hasn't been eating and drinking properly, constantly complains of stomach issues and nausea and is basically refusing to get out of bed or leave the flat. Mum doesn't make him do anything so he has just got worse and worse and has lost loads of weight.
This isn't his cancer currently killing him, he is doing this to himself which I am struggling with big time as I just think he is being selfish. When we go to see him, he seems jovial enough, he almost seems to find it funny at times and we did wonder if it was just for attention but he is obviously damaging his body in the process.
My brother and I went to the hospital and spoke to the Macmillan nurse and tried to speak to his doctors but they wouldn't speak to us (he had a consultant appt that day but refused to go). We do have legal power of attorney which we are putting into place with his GP as well so we can get more iinformational make decisions if possible. His liver team were supposed to be seeing/speaking to him once a month but this hasn't been happening and we just don't know what to do. We are wondering if he is depressed? His GP doesn't do home visits anymore so we can't get a doctor to come and see him at home. A wheelchair has been sent to him so we can hopefully get him out and about more.
In 2 days time, he is supposed to be going on a cruise with mum and my brother and his fiance (booked before his diagnosis) but there's no way he can go as he can't physically get up and move around as he is too weak from malnutrition. We have Fortisip for him but he won't drink it. We were all just with him at the flat now and his blood pressure is ridiculously low - but from the malnutrition or something else? We are worried as mum is still going in the cruise (as we all agree she should) but it means dad will be on his own and we don't know if he will take care of himself. I work, and can't get holiday, as does my other brother and there isn't really anyone else who can check on him.
I am planning on going to his GP tomorrow to see if they can send someone to see him at home, they have sent a paramedic before so they know him already. I feel like it would be a good thing for him to be hospitalised if he needs to be (as I suspect he will because of his low blood pressure and the fact he has probably messed his kidneys up again) but we are all scared if he goes into hospital this time, he may never come out.
It's just hard to deal with. I hate how selfish he is being, I would understand if it was his actual cancer that was causing this but at the moment, it isn't, it's like this is his choice and I am struggling with how much I dislike him for that. I struggle to be around him when he is currently capable of helping himself but just won't. And I feel terrible saying that here as well. We just don't know where to turn - out next step is self referral to Myton to see if they can help us.
Does anyone have any experience of anything similar, a relative just giving up? How did you get through it?
Thank you if you got this far!
Hi Mo83 and a warm welcome to the Macmillan Community but so sorry to hear about your dad.
A cancer diagnosis in the family like this can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' support challenges can help you a lot……. I have a completely different type of cancer and treatment journey.
This New to Community area is like our reception desk where we try to direct you to the best part of the Community for you to get support.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting your dad and indeed yourself you may benefit from joining and posting in our……
Supporting someone with incurable cancer
……. support groups where you will connect with a wide range of members navigating the exact same support challenges.
To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
It is an emotional time supporting family so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support or just a listening ear.
Do get back to me if you need further help navigating the community.
