Dad dying - how do we support him?

[RagingDisposition]

My lovely Dad has been given a terminal cancer diagnosis. He's only just retired and should have had twenty years of travelling and fun family times ahead of him, after working so hard his entire life. My mum, siblings and I are devastated.

I have so many questions and worries that maybe some people can answer on here, based on their own experiences (for which I am so sorry, I wouldn't wish this on anyone) and many more that probably can't be answered, but I'll ask them anyway purely to get them out of the swirling maelstrom of rage and upset and sadness going on in my head right now.

They said he has "months" - what does this even mean? Two? Eleven?

I'm pretty sure he has bucket list items - things he wanted to see and do - but I don't think he'll be well enough to travel. Can people with terminal cancer even get travel insurance?

How do we help him emotionally? Talk about it? Keep him company? Give him space? He's my dad so I should know what he would prefer, but I don't.

Can pain always be controlled? Because I can't bear the thought of him suffering or dying in agony.

How do we support my mum? They're best friends. I can't imagine one without the other.

When do we start planning his funeral? Even the thought of it makes me feel nauseous. Should we ask him?

Yeah I can see that these questions can only really be answered by my dad . . . but any advice or words of wisdom would be appreciated. My DH has incurable cancer (currently stable) and when I contacted Macmillan etc. they were useless so I feel like that's not a support option.

OP - sorry to hear about your Dads diagnosis. I have some personal and professional experience here so will just offer the following:

Can you ask your Dad to make an appointment with his consultant or GP which you can go along to, so you can get a better idea of what "months" means? Basically this often means less than a year but more than a 8 weeks - to be honest though no one can ever say for sure, but the doctor should be able to say what the average is for someone with your Dads diagnosis. Bear in mind your Dad may not want to know this and you would have to have his permission to discuss this with medical staff.

Now is the time to start difficult conversations with your Dad if there are things he wants to still do whilst well enough then you can organise these. Again though this can only happen if he is willing to discuss it. It will probably be very difficult to get travel insurance - some people choose to travel without but there are obviously risks with that.

With good palliative care yes, pain should be able to be controlled - does your Dad have a Palliative Care Clinical Nurse Specialist? If not ask about this as they will be able to inform and guide you re symptom management. Do you have a hospice where you live, usually you can self refer for support from them.

You know your Mum and Dd best so I'd say be brave enough to initiate the conversations which are needed (including the funeral plans) then take it from there, they may or may not wish to discuss it but it's definitely worth trying.

I'm sorry Macmillan weren't helpful, they do seem to be a bit hit and miss. Do you have siblings to help with all this? You will need to look after yourself too as it is an emotional time.

The main focus now needs to be on quality of life - I wish you well OP it sounds like you are a lovely daughter.

Travel insurance with cancer is very very expensive.

My dad died recently and was unable to do the travelling he wanted but he did have holidays in this country with the people he loved before he died.

It's so shit, I really feel for you. My dad should have had another 2 years but it all went wrong and he ended up dying very quickly in the end

And agree with PP please have funeral conversations and password ones too! It did make an awful time slightly easier

Sorry you're going through this OP. I lost my Dad in May this year. The most helpful thing he did was to leave all relevant paperwork in a folder for us, it made things so much easier. If you can (and I know it's an awful conversation to have to have) ask your Dad for details of pension plans, investments, etc.

We found the hospice nurses to be an absolute lifeline when his GP was useless - we wouldn't have coped without them. Maybe try ringing again. Ours were St Peter's Hospice though - depends where you are in the country as to who you get I think.

You'll get through this and find strength you didn't know you had

Thank you, @talkingheadz - I will follow your advice and talk things over with them, and do the things you're suggesting as far as possible (and as far as my parents are comfortable with it). I do have siblings, thankfully, and they're great so I know we'll pull together. We're a strong family so in that, we're lucky.

@teacoffeeorpassthegin I'm so sorry you lost your dad even earlier than expected - that must have been so tough, to lose even the short amount of time you had left with him.

Passwords . . . gosh yes. The practicalities.

Thank you, @NooNakedJacuzziness - and my sympathies on losing your dad. I can't even imagine asking him about paperwork . . . maybe once things sink in a bit more.

Months can mean not a year… what kind of cancer does he have? And has he been allocated a clinical nurse specialist? They’re often better than Doctors and deffo better than GPs to talk to in terms of this stuff.

It is very hard but be led by your dad in terms of talking about it, as if he is comfortable to do so- it’s the best thing to do. Ask him if he had any wishes like where he would prefer to die, what his concerns are, things he’d like to do… yes travel insurance can be arranged at a price but that might be a small price to pay if it’s his dream holiday… or could there be a safer option?

Pain free is very much possible and I work with people who are dying on a weekly basis and know that pain relief is very efficient and the care from palliative nurse teams and district nurses can and will support him well for this. He needs to be prepared early though and not be all “strong and suffering” about it as earlier intervention really helps a lot. Medication can be prescribed to have at home on a “just in case” basis which is beneficial…

Just talk and take time to listen to each other and don’t avoid it. It will hurt and upset you all, but this is painful either way and least you have the comfort of knowing what he wants of you have these discussions.

OK, so.. months can mean anything between 1 and 12, but they don't expect it to be a year. Don't put too much emphasis on this though, everyone is different and some live far beyond their initial prediction, some far less. Go by how he is and how much and fast he is deteriorating. Basically the quicker the decline, the less time he has left. And be prepared for things to go downhill very quickly towards the end. Sorry.
Travel depends very much on how he is in himself. As pp has said insurance is expensive to go abroad, but if he is well enough go away in this country and make the most of the time he has where he is well enough to enjoy it.
Emotionally everyone is different, my partner didn't want to think about it at all, be led by him. Don't be afraid to broach the subject, just be sensitive if he shuts it down.
Pain - really important, and yes it absolutely can and should be controlled. Stay on top of it, and the palliative care team are the best at getting it under control. I can't stress this enough - He should not be in pain.
Your mum, again is very dependant on her, but ask and go by what she says. And check in regularly, so when it's rough she doesn't feel like it's just because you feel sorry for her (not saying she would feel that way, but grief is unpredictable), she may grieve for him before he dies.
Plan the funeral now. It's easier to have the conversations before they become an immediate problem, and trying to deal with everything after the death is awful. Be as prepared as you can be, then set it aside and enjoy the time you have.
I am so sorry you've had this news and I'll be thinking of you.

I think you just need to be led by him. If he feels ok to talk about funeral plans etc then do it. It's also important to try to talk about things like where he wants to die, would he want to be at home if at all possible etc, and also limits of care, would he want any treatment available to prolong his life etc, would he want an infection treating ?. My dad does not have a terminal illness but he has paperwork stating he would not want any life prolonging treatment etc in the even of a stroke or similar.
Palliative care is good in many areas but hospice beds limited. Find out what is available in your area. As others have said he should be allocated a palliative care Nurse and most symptoms can be controlled.
I'm sorry you are going through this and that you feel Macmillan have not been helpful, they can usually advise on travel insurance.
If money is an issue then make sure you apply for the appropriate disability benefits under special rules.

I am so sorry to hear this. I too lost my father when he was 66, to a brain tumour. I was told he had about 6 weeks, but in fact he lived for another 10 months. It is very difficult for the doctors to predict life expectancy, so it is better to take and enjoy each day as it comes.

Your father is probably still adjusting to the diagnosis. Once my Dad had accepted it, he was relaxed and cheerful, which was lovely for us.

As others have said, your best friend is your hospice nurse. S/he will have the contacts and experience, as well as the dedication, to look after all of you at this time. They will manage pain and work with your doctor and occupational therapists. They will get things done so that you don't need to worry, and will provide emotional support for you too.

Do talk with your father about his diagnosis and end of life. Take the lead from him, but give him every chance to share his wishes for his funeral. He may also wish to share stories about his life, and this is a good time to write it down.

My parents had their paperwork in order. Whether your father is organised or not, you will need to have those conversations about where to find the information.

I hope this last stage of your father's life is a peaceful one where you can build good memories for the future.

Thank you so much for taking the time to respond, I'm very grateful to you, especially since it must bring back tough memories for you all.

I'm still processing, I think. Hence being wide awake at 3am.