DF’s diagnosis and denial

[SociableAtWork]

I wondered if anyone could help please. My DM and I recently found some Consultant’s letters my DF had put out of sight - DM has very limited mobility, they were out of her reach, but I saw them whilst visiting.

We knew he was having tests after a positive FIT but he insisted on going to all appointments alone. I am several hours away and DM would only be able to go with him if he got her ready / in the car etc.

He has been diagnosed with cancer (blood and stomach and/or bowel) and refused treatment. The Consultant states that they feel he has capacity to make the decision to ‘end his days peacefully at home’ and has discharged him. There’s a couple of other letters from the GP signposting support groups / McMillan etc.

We’ve had a chat with DF about the diagnosis, but apart from saying he doesn’t want to do anything about it, he has mostly dismissed it and won’t talk about it.

I fully respect this and privately thought he wouldn’t want any treatment so am not surprised. DM swings between upset and anger - DF is my mum’s primary carer, although they’ve recently agreed to a carer coming in the morning to get DM ready for the day. We’ve spoken about increasing this as DF cannot manage but they are reluctant to.

DM cannot get herself in or out of bed, dressed or undressed etc. She is pretty much housebound and relies on DF for food, drinks, fetching and carrying all day. He cannot cope any longer - they should have had help years ago but, well… Many reasons which many of you will understand.

However, I don’t know what to do to ensure DF is comfortable, not in pain, nor how long ‘end his days peacefully’ means - weeks, months?. I don’t live locally but am visiting and terrified of going back home and something happening, and it being too late; I’d like to be here to look after / look out for him and DM and try to arrange things.

DF seems much more confused since my last visit, is talking about the past a lot - things I’d never have known - and showing me his stuff, whereas he’s always been intensely private. He’s sleeping loads - I don’t know, it feels like he’s getting ready to go, if that makes sense.

DF is 85, with other health concerns in addition to the cancer.

I don’t really know what I’m asking TBH. No one has a crystal ball. Just some tips from people who’ve had similar experiences please.

Thanks for reading, I’m sorry it’s so long.

Have you contacted macmillan? He will need some care and support even if he chooses to stay at home until the end.

Call his GP. They can’t discuss your dad’s health with you but you can flag up your concerns. You can get your mums consent to speak on her behalf at least. It sounds like there is the potential for safeguarding to be involved if he doesn’t allow extra carers in but can’t help himself especially if he is confused. The GP probably have an older persons nurse who will visit her and the district nursing team should have been made aware of your dad’s diagnosis and st the least be ringing to check in regularly on your dad.
i would try and have a chat about how you feel. Explain that you find his unwillingness to accept help a worrry and that if the situation hits a crisis both he and your mum may end up in hospital/ care homes or both and in a crisis he won’t have any control or choice. He can express all his wishes and fears now while he has capacity (we assume). This will help you and your mum and his medical team make decisions if he lacks capacity in the future. Hope this help and I’m thing of you

• GP
• Macmillan
• Social Services
• District Nurses
• Organise more care in the home
• Try to speak to his Consultant. They might tell you nothing but they also might be able to give you some sort of idea

I second this. He may well have been given a specific contact at the hospital. but you can get general advice on their website
Macmillan Cancer Support | The UK's leading cancer care charity

They also have an online community which includes forums for specific types of cancer and for carers, friends and family - there will be people who have been or are going through something similar. And you can call or have an online chat with support nurses.

You have to insist you go with him to his next appointment. Say this isn't fit him this is for you so you can be clearer about how you will manage your mum as well as him when he gets worse. You have to be the adult now he wil be reluctant but he know

Thank you all @BabyCatFace @BeagleHound1@Maddy70@chatgptsbestmate@P00hsticks so much for the detailed replies and advice for going forwards, I can’t tell you how much of a relief it’s been to read through, and will act on the advice immediately.

Thank you again 🩷

Is your mum generally reasonable and well apart from physical frailties?
I ask because DF had a caring role before his diagnosis- only in that she was high maintenance and he waited on her hand foot and finger.

She was very angry at his diagnosis and didn’t treat him well. It was awful. I just wanted to warn you, in case you face that on top of everything else.

At my late parents surgery they had a form which my parents could fill in and sign that gave consent for the doctors to discuss their affairs with me. I'd suggest you get that done for both of them if you can. Then look into hospice stuff for your DF for when/if he needs it. Then obviously at some point it's likely your DM is going to need someone to take over more of her care, ideally sooner rather than later so he can conserve what energy he has for himself.

Hmmmm, she’s pretty awful. DF also waits in her hand and foot and doesn’t get a second’s peace. The minute he looks as though he’s ’doing nothing’ she finds him ‘a little job to do’. Sometimes I feel like she’s punishing him for not having been a better husband when they were younger (he wasn’t a bad one, just not up to her exacting standards).

She can be very nice to outsiders but can also be vicious - which feels an awful thing to say about such a frail, old lady. She is annoyed he’s ill TBH.

I’d ask the GP about a referral to the community palliative care team. My FIL refused cancer treatment and managed at home with contact from the community palliative care team until the nurse and he agreed he needed a respite stay in a hospice. They are very good at the emotional side as well as the practical side and know all the possible ins and outs.

Ok, this doesn’t surprise me. The social workers will be familiar with the dynamic. Don’t be afraid to tell them he may become very vulnerable due to this. They got my dad early access to a hospice for respite because of it.

DM shouted at DF, the man with a piece of language processing brain missing due to surgery on a brain tumour, because he’d brought her the wrong kind of coffee.

She alternated between various controlling behaviours that superficially appeared to be for his well being. It led to her not always letting him have meds he was prescribed, because she’d read the contraindications/didn't think he needed them.

It can get rough. Better to know and be braced for it. 💐 And yes. She is also a frail and vulnerable old woman. Both things can be true.

She'd do well in a care/nursing home, I reckon
She'd be on her best behaviour and everyone would love her. She'd lap it up

Why don't you get Social Services to suggest a few weeks respite for your Dad. Get your Mum into a home to be looked after and get carers in a couple of times a day for your Dad. The break will help him

@SociableAtWork denial is a common response to a cancer diagnosis…but denial when your father is a carer is not going to help anyone. He may well deteriorate acutely which will leave both your mum and you in a crisis situation. He is perfectly entitled to refuse treatment but he is probably eligible for community palliative services and / or hospice input….and they can be very helpful in this sort of situation. I would be trying o explain why this could help. Either way you can refer your mum directly for an social work assessment of her own needs, if she’s not had any social care input before. I’ll attach an example of a “Planning Ahead” document
https://www.mariecurie.org.uk/globalassets/media/documents/how-we-can-help/living-with-a-terminal-illness/planning-ahead.pdf. At least it will give you and your mum some ideas about things to consider/ persuade him to consider.

@SociableAtWork Ps . as you’ll find , palliative care/ hospice services vary widely as there’s a postcode lottery ,seeing as most are provided by charities. It’s also good practise for GP’s to hold a palliative care register for patients, so I would be writing your concerns to the GP and highlighting that your Mum is in a vulnerable situation if he dies or is hospitalised suddenly.