My uncle passed away very young from brain tumours (would have been early to mid 30s) and my parents just decided that (as we knew him well, but weren't especially close) they (my parents) would visit, but the kids wouldn't. We were all under 10yrs old, and they just decided that the oncology ward wasn't the place for us to be, in the interests of us, and him, and the other patients, other patients' their families, and the staff.
If it was our grandparents - who we were very close to - I think they would have brought us one or two at a time anyway.
In terms of support, all I can say is figure out what you can really commit to long term. Lots of people help and comfort when the news lands, and then when the person departs - but so many wane in interest in the middle, and it's just as hard and horrible then.
So my suggestion is to ask them outright what the need, what would help (a meal once a week so there's something for them to eat after the hospital, a coffee and chat or phonecall to debrief, help organising travel, help to find out from him what funeral arrangements he wants (a bit morbid, but practical, if he is likely to have specific desires he hasn't thought through or communicated yet), help organising someone to come do a will and/or medical/general power of attorney (again, if he doesn't have one yet) or whatever.
Ask outright if there's anything specific they need done that you can help with, but more so what longer term things they might like to know you can do from now for the indefinite future - if and only if you think you can commit to something.
So I know that my dad would really like to know that on every other Tuesday, I will 100% be sure to come over after dinner, to talk. He likes to talk, he thinks things through while talking, and that would be helpful to him. For my mum, she would like to know that 100% someone will be at her door at 6pm to take her to the hospital to visit, and she can pick whether they come in with her, or whether they read in the car until she's going to go home. When my grandfather was declining in hospital, his 100% thing was the newspaper. So there might be something that they would like to know he's getting regularly - a weekly care package with a magazine, some fruit and a puzzle or something ... ?
Ask them for some general ideas, and then figure out what you as a family can commit to - knowing this could be for a few months, or a few years.
But big hug and much love as you figure your way through this.
Also, what can we do to support the IL's? They have given so much to help him over the years, even when he has treated them worse than dirt they have never stopped helping him as much as they could and held hope that eventually he could live some sort of normal life. With the diagnoses they are just shattered. They are such good people. Is there anything I can do to help them as they face losing their child?
Arte, I don't think there's too much you need to plan re the information for the kids. I think kids are usually happy to accept a simple but straightforward explanation like 'Uncle is very sick in a part of his brain, it makes him do and say strange things sometimes.' Let them know it's ok to feel confused or strange or sad (or whatever) if/when they witness those behaviours. It's possibly going to be easier to explain now that you know a specific illness is causing it than it was before when it was just bizarre/difficult/hurtful. As the disease progresses, what you need/choose to tell them will depend on how the situation is unfolding, I don't think you can plan that far ahead.
As much as you feel like you want to be able to make a plan, take some kind of action, change the outcome somehow, terminal illness is one of those things that are outside of the family's control. Beyond any practical help you can provide (meals, cleaning, errands, going with them to appts, offering to ring to update other family members so they don't have to tell the same news over and over, helping get necessary paperwork done) this often means just turning up, asking them how they are doing, letting them know you understand and care. But they will probably also want and need some "normal" in amongst everything else, like normal family stuff. It might not seem like much, but that's the glue that holds people together in hard times.
Thanks everyone. I think that having the kids around is a great thing for the ILs, so I guess that would be a huge thing for keeping some normal in their life. They know we are here any time and have already been around for a debrief after they realised it was terminal. On that - the Drs initially gave them false hope by telling them it was the 'good' sort of tumour which they took to mean it could be cured. Turns out good in brain tumour terms is only different from bad in the length of time it takes to kill you.
I hadn't even thought of hospitals. He will hate that . The worst part is that between a head injury when he was 18 and the misdiagnoses years ago of the tumour, he has lived a miserable life. In and out of psych wards the last few years etc, it has been really hard. When he is good he is good, but you are always so cautious with everything said lest it be taken wrong and become a twisted torment for him. His friends gave up on him long ago, he has never worked. He has nothing to lose. He said he just wants to feed the tumour and make it grow faster so he can get on with dying.
Big hugs. I had someone very close to me die last year. Here are some thoughts:
Children are actually a lot better a dealing with death than we expect them to be
Might be an idea to organise a family photo session while he is still relatively well.
In terms of help, I really appreciated the people who just got in and did something. It's really frustrating to get the "if there is anything we can do to help..." line. Most people are very unlikely to say "oh I would love a meal or some help with the cleaning". Much better to unobtrusively help.
Food is always helpful - not having to cook is always a blessing!
Flowers always cheer things up.
As others have said, they need normal too.
Make sure funeral details (don't forget cremation/burial), will, power of attorney etc etc are all sorted well in advance.
Find out what palliative care options there are, especially if he doesn't want treatment. People don't have to be in agony at the end - there are some amazing drugs out there. You also don't want to be in a position where no-one has medical guardianship (or whatever it's called) and so a hospital is obliged to prolong life when it's not what he would have wanted.
Re: Terminal illness in extended family
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. The worst part is that between a head injury when he was 18 and the misdiagnoses years ago of the tumour, he has lived a miserable life. In and out of psych wards the last few years etc, it has been really hard. When he is good he is good, but you are always so cautious with everything said lest it be taken wrong and become a twisted torment for him. His friends gave up on him long ago, he has never worked. He has nothing to lose. He said he just wants to feed the tumour and make it grow faster so he can get on with dying.
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