Terminal illness in extended family

A family member has been diagnosed with a brain tumour. He has been given 1-10 years but is declining treatment so will most likely be at the lower end of the range.

This is the first time we have had to deal with anything like this. I am unsure of what we do in regards to the children. They know the uncle, but are not close. He has had many issues over the years and we have carefully picked when they could be around him and when it was unwise to do so. We have now moved close to the IL's and so they have more contact (his behaviour permitting) when he is visiting. His tumour is in the area of the brain responsible for logic and emotional control and hence explains the illogical/paranoid/delusional and over the top reactions to minor things at times. Unfortunately he is only going to get worse - the personality changes and eventually progressing to partial paralysis, vision impairment, seizures and migraines. As he declines I imagine he will end up back at home with the IL's. This is where it is going to get harder because the children spend a lot of time there and we won't be able to hide the fact that either they can't go there or that he is there and very ill.

I don't think we need to do anything atm, but I would feel better with some sort of a plan for when it becomes necessary.

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?

My heart goes out to you. Seriously, this is a terrible situation for everyone involved. But you are right in trying to have some sort of plan in place before something happens. What a wonderful daughter in law you are! It wont be an easy time for anyone, but it may be something that you will have to explain to the kids that uncle isn't well and that he may be a little strange. Kids are pretty accepting. Although with brain tumours the behaviour can be pretty out there in an instant! So it might just be a play it by ear and see what happens. I am sure that your ILs will tell you if they think that the kids should stay away.

As for helping your ILs. Be there for them. Allow them to talk, give them your time. When things become more difficult, you could always help them out in more practical ways, such as with meals for them, and perhaps looking up some services for them, such as respite care, so that someone can come in for a couple of hours to allow the ILs to have some time out. Its those little things that really help. Just an hour or so break to go out for a coffee and a chat can be a god send. Looking after someone who is terminally ill is really hard.

There's a whole heap of other things that I cant really think of right now but I will come back when I think of them. I work a lot in palliative care, so I know what its like for the families and how much they appreciate the little things.

Just don't avoid the subject though, a lot of people do. But wait for them to bring it up. Hugs to you and your family xxx

Love and hugs. What a horrible thing to happen.

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.

:hug:

Sending love to you all xxx :hug:

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.

I hope he has a dignified journey. :(

Sending you love and light xox

Our family is going through the exact same thing at the moment. I'll come back to this when I'm on the laptop :)

DPs dad is dying of lung cancer. It's really hard for him.

Our kids are bigger though - and his kids have been through a lot of death. Mine haven't.

We spend a lot of time telling them (in a child friendly manner) what is going on and what to expect. My kids don't visit the hospital but his kids do.

Sending you Much love and strength.

Thanks everyone. I know IL's already have medical power and I think power of attorney has been a plan for a while now. It wouldn't be my place to ask about funeral preferences, but I could nudge IL's towards thinking about it and asking.

Sorry to everyone else who is currently or has already been though it :(

Had a little vent, over it today :)

still much love :hug:

Oh Arte - sorry this was weighing on you before Christmas. Much love. I don't think any part of this situation is easy, so keep venting. :hug:

It isn't anything new really. He is back visiting his alternate reality. Sigh. He was going well for a bit but of course he can't stand anyone else getting attention so he refused to go to FIL's 60th birthday then did the annual christmas backslide complete with the half assed/fake suicide attempt.

I am just p'd off that DH saw fit to bring him to the house when we had agreed that he wasn't to know where we live.

BIL is now living back with the IL's. I am standing strong on the kids not visiting when BIL is there - under advice from DS's psychologist and just general common sense. The kids are far too young to deal with the unpredictability of the disease. It is hard enough for the adults to deal with how quickly he sways from being fine to being very not fine.

FIL was around the other day and asked me to reconsider my stand on keeping the children away. He said that BIL is going really well and that it isn't fair to write him off. I pointed out that he said the exact same thing a couple of months ago, then BIL attempted suicide in the back yard while we (kids included) were eating Christmas dinner.

I can see a really stupid family falling out happening because this is something I will not back down on. I would not expect anyone to have their small children around someone who is mentally unstable. Thankfully DH is on the same page which makes it easier.

As for the kids, they are pretty disappointed they can't go to the IL's anymore but I was pretty straight up and told them that Uncle has a tumour sickness growing on his brain and it makes him act in unsuitable ways sometimes. They seemed to accept that.

That's pretty rough to put it on you like that. You have to protect the kids 100% and possibly putting them in the situation of witnessing a suicide attempt is not in their best interest, so why can't the IL's see that? The IL's can always come and visit you, or meet up somewhere else if they want to see the kids.

I'm totally with you on this one. Thinking of you xoxo

Totally agree with you on this. Stick to your guns on this one. Xo

Thanks. It helps to know I am not overreacting.

Yeah, not sure where FIL is coming from. As soon as things are going well he seems to completely forget about how awful it was a few weeks before, and that the good patches have only ever lasted a few months at most. I think part of it is him just wanting everything to be normal happy families, but the reality is that BIL has a tumour the size of an egg in his frontal lobe and normal just isn't going to happen for him.

I totally agree with you, keep the kids away, they are the most important people here and what happens in front of them will stay with them forever! You know that you are doing the right thing for your family! As for FIL, he will probably be going through phases of wanting to play happy families when things are going well, even though he knows that it can change in an instant, he is in denial! They can always visit you if they want to see the children. Stand your ground!

Hugs xxx

Getting p'd off with FIL now - he managed to drop in to conversation the other day that BIL is spending heaps of time at a friends house with his wife and kids. Obviously implying that BIL is fine around kids and I am being silly. I felt like saying that perhaps their view would change if BIL tried to kill himself out the back while their kids were home.

He also keeps asking despite us repeatedly refusing for DS to go in the front seat of his ute. I don't understand his views - I had a huge car accident a couple of months ago and anyone, particularly a child would have been in serious danger if they had been in the front seat. Everyone commented on this. Yet for some reason he thinks it is alright if DS goes in the front with him?! So irritating.

It sounds like he is trying to lay a guilt trip on you, and you are right, he is trying to make out that you are the one that is being silly about this! You are not!! You are doing what is right for you and your children and your futures! Don't let him get to you.
As for sitting it the front of his ute, well, that is totally your call! You are the parents and you make the rules, he doesn't get to make them for your kids, and if he cant stick to them, then he doesn't get to take them in the car! Plain and simple!!
Stick to your guns babe, and whenever he annoys you, come and vent in here, we are always here for you xxx