Helping dad to accept his diagnosis

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My dad has been diagnosed with stage four cancer and has been told he only has a few weeks/months left to live. He didn’t comprehend this when he was told (his English is excellent but not his first language and in moments of stress he can struggle to understand) and I had to phone the nurses to find out what had been said. I had to tell him this news again and break it down for him. He’s refusing to meet with any doctors and has refused any appointments with the nurse. He accepted a phone call the other day and is (very reluctantly) “allowing” them to visit this week. He doesn’t want my mother to know - she has Alzheimer’s- but won’t let me arrange to have her go elsewhere for the appointment. He says the nurse “doesn’t need to be specific“. Except she does need to be specific. She needs to explain what will happen in the future and how we care for him. He says we can “cross that bridge when we come to it”. But we’re at the bridge now.

I don’t know what to do.

I don’t want to be cruel or force him but he has to face up to things at some point and I want him to have what I think he wants: a good ending at home as much as possible without too much pain. He loathes hospitals and doctors and all of that. He would hate to be in hospital.

What if he runs out of time to make decisions? How do I help him?

The macmillan nurse is excellent and really supportive but I’m sure she’s really busy. I don’t want to waste her time coming out if he’s not going to be receptive to any discussion.

Who can I speak to for advice about how to manage all this?

I’m so sad and tired and frustrated and at a loss. So, so sad.

I’m so sorry, this sounds really tough,

Try to explain to your Dad what you’ve said above. You need to know his wishes and preferences so that you can advocate for him and support him appropriately.

Does your Dad respond to doing more practical things? Making sure his will is up to date, you know any passwords, where his paperwork is kept (insurance, car, utilities etc). If he feels those practicalities are taken care of, perhaps he’ll be able to move on and think about himself more.

How much support does your Mum need too? It might be worth doing a referral to social services for her so that her care needs are met. And while you’re at it, get a carers assessment for you.

I wish you well

This sounds very hard, and also sounds like he could do with a bit more time to process things.

You know your DM best and how able she'll be able to retain information, but could he be worried that she'll forget she's been told he has terminal cancer and it'll be easier not to be worth telling her or getting her to disrupt a routine as she'll forget?

It sounds like it might be worth you booking in an appointment with the MacMillan nurse.

The number of arrangements that will need to be done must seen overwhelming although will depend on how organised your DF is - is it worth having a big list and splitting it into things that have been done, things that urgently need to be decided/dealt with and items that can be left for a while?

Also, I'd make sure both your parents have a bag packed in case they need to go to hospital/hospice or respite care in a hurry, with things like a phone charger, change of clothes etc, snacks etc and do the same for yourself.

Will he allow you to be at the appointment?

I would try to be there, and to express some of your fears. It may be that the appointment won't be as you wish it to be - the nurse might focus on getting to know him. But if you can get hid permission either to be there or to contact her separately, that could only help.

can you be there when the nurse comes. Can you arrange for your Mum to be out for a walk or a drive around or busy upstairs with someone else when the nurse comes so you can focus on the nurse and your Dad

then if you dad isnt able to listen to the nurse, suggest that your Dad goes for a quick walk to ‘clear his head’ and you talk to the nurse.

then you can explain that he wants to be supported, nursed and die at home and what needs to be done to set this up. Ask lots and lots of questions about palliative care and meds to help manage anxiety and pain in the home. Ask about how to have these strong meds on hand so you dont have to wait for prescriptions and chemists and fuss as it always ramps up in the middle of the night

write everything down as you wont remember details later

hugs

I don’t know what needs sorting. My mother managed all the bank stuff and insurances and since she hasn’t been able to my siblings and I have managed all of that. I don’t know what happens if one of them dies though. Does it change things? Is there a list anywhere online of things to think about and check? Which website do I go to? I don’t know anything about pensions or whether there are other savings accounts that will need to be accessed. We’ve just dealt with immediate practical stuff like food, bills, car etc. Dad is massively impractical in regard to written things. He’s more worried about lambing and painting the tractor just now. He’s absolutely not dealing with any of it.

I’ll definitely be at the appointment. If he had his way I would be there by myself and just deal with it all. He doesn’t want to be part of it.

Focus only on the practical things. Do not force him to face or accept his diagnosis. If he wants to ignore it, that’s his way of coping and there’s nothing wrong with that.

Do you or your siblings already have PoA for your mum? If not, probably now is the time to apply to the Office of the Public Guardian for deputyship. It takes time to get in place and if he is that unwell, time may not be on your side. Maybe focussing his energy onto making sure she is looked after will help him recognise reality.

I am sorry that this is happening. It is a lot to deal with.

I just wanted to say I’ve been through a similar thing with my dad. Try and be at any appointments, they never relay all the info to you, and look into local hospices, as some provide care at home in a really unmedical way, out local one just became like friends that popped in. Age UK are also fantastic with advice.

I’m so sorry you are dealing with this. It will be a shock to you too. It sounds as if your father may be still in shock which is understandable and it may be that he won’t talk about it because it’s his way of dealing it. Try and be at any appointments he does have, talk to the MacMillan nurses and keep that appointment he has made, look into any hospice at home services locally - these are usually charities and are a godsend but you need to be in touch to arrange care. Unfortunately, even if your dad doesn’t make decisions, managing end of life care gets to the point where help has to be accepted so it’s best to find out what is available locally.

I'm so sorry. You may find that although you think you're at the bridge, your Dad isn't ready to cross it. The best thing to do would be to have all the information gathered, so that when he decides he's ready (and that next week, or it may be tomorrow - people are all so different), you can do what you need to do. It sounds like his brain just hasn't caught up yet.

you can't force him to engage with the diagnosis, just let him take things a day at a time.

if he meets the nurse and begins to trust the medical team, then he may be ready to talk and listen at the second or third meeting.

What a terrible shock. My heart goes out to you, it really does.
I was so struck by you saying that all he wants to do is think about lambing and painting the tractor.
And how unimaginable to have this diagnosis when you are on a farm and surrounded by things coming back to life.
I hope other posters have practical advice.

Please don't be thinking that you are wasting the nurses time , how could any other circumstances be more important than this?
And they will have experienced people not being ready to accept things before.

Thank you for all your thoughts and suggestions.

I’m not forcing anything. Trying to be normal. We planted potatoes and sowed carrots today and spoke of what else we were putting in the ground in the next few weeks.

The nurse will come tomorrow. My mother will have to be there. I can’t do anything about that and we’ll just have to figure it out as we go. I don’t know how she will react if she understands what is being said.

Can anyone signpost lists of things (documents, policies etc) to check or organisations that can tell me what I need to do to provide practical support to them? We have PoA for Mam but not for him. I just don’t know what stuff is important and what we need to do.

You might find Age uk helpful, they have lots of different sections on the website about care, PoA etc

I think you’re taking the right approach. Continuity of ‘normal life’ is important to him, and any farmer will be thinking about the jobs to be done in the season. But no doubt he’s processing in his mind his diagnosis, even if he doesn’t appear to be engaging in the care conversations. He will default to familiar family roles until he’s ready to relinquish his, Do you have a family solicitor who could come to have a chat with him? My dad was able to listen to ours as someone removed from the immediate family circle, and the solicitor (to be fair, also a family friend) quietly said ‘look, I’ll draw up xyz, I’ll get started on a letter to the bank’ etc.

Id stress to you it’s important to keep a communication line with all siblings, maybe a WhatsApp group; shock can put strains on families, and hopefully all the siblings pull together. Communication is key.

Really sorry for you and your poor dad.

I've been through this, it's a horrible roller coaster you can't get off and it feels as if you are lurching from one crisis to another. It's shit and I feel for you.

One of the things they'll want to talk through is DNR. We weren't allowed to be in the room when this was discussed, but we were told about it afterwards. He will be eligible for fast track benefits either PIP or Attendance Allowance depending on his age. The nurse/doctor will know about this. You can use it to pay for things that help. Speak to your local Hospice to see if they have an outreach service. Macmillan for advice and support on everything, they will probably be your biggest source of info.

My parent was adamant about staying at home and took to their bed. Then decided they didn't want to die at home after all so I had a mad scramble to organise a nursing home and transport over a bank holiday weekend. They died the day after. Nothing prepares you for it. You must look after yourself too, you can't do everything much as you want to and it's a hard road you are on.