some advice on a colleague's impending bereavement

[CUNextTuesday]

One of my members of staff, let's call her Sonia, has a 25 yr old son in the late stages of a brain tumour. I won't go into detail as I'm sure anyone in a position to advise me can understand what a dreadful and traumatic situation it is. He (let's call him John) has started yet another round of palliative chemo today, combined with a huge dose of steroids to try and reduce some of the swelling, but the tumour is v extensive throughout one of the hemispheres with all the terrible symptoms that brings with it. He is, however still at home with Sonia, and as far as I know is not on pain relief as yet.

John has had the tumour for close on 7 years so I have always been 'managing' Sonia with this situation (I mean in a work sense, not that it is difficult or onerous IYSWIM). In the last year things have started to really deteriorate but there have still been elements of hope from Sonia's perspective - new treatments, new research, etc. She, for the most part blocked out any idea that he was going to die, and although she knows it's terminal she's always held out hope of one more year, one more year, and I totally understand where she's coming from.

(As an aside I lost my darling dad last March so I can completely understand the emotional side of what she is feeling and the eternal hope).

What I need advice about, if anyone can help, is this: I have always joined Sonia in taking the positives out of each stage of treatment, and trying to draw out the bright side of various things the docs have said/haven't said - taking my cue from her really. She has now accepted that John is deteriorating by the day and is obviously having to come to terms with the inevitable (reading between the lines, I think it may only be weeks away). I still want, and must, support her through this but now I find I can't be positive about anything because obviously it's now all negative and it's clear it would be fake positivity and I don't want to come across as patronising. I found myself on the phone to her about an hour ago saying things like 'oh bless him', 'god you must be exhausted', 'oh that's awful Sonia' and when I put the phone down I felt so stupid and like I wasn't being very helpful.

When my dad was dying he was basically in a morphine coma in hospital so we didn't have to 'cope' day to day with the deterioration and the treatment side effects etc. I can't put myself in her shoes about what would be helpful to hear or be comforted with. I've done what I can from a manager's point of view - she's able to work from home if she wants but if she doesn't then that's fine too, v flexible on her working hours etc. It's just that I'd like to be a little bit more than managerial if you get me.

Does anyone know what I can say/do that would help?

CUNextTuesday , it sounds like you are doing all the right things at the moment , especially taking cues from her as to how she is seeing things . Just carry on doing more of the same , it will be a huge comfort to her to know that she doesn't have to worry about her work situation on top of everything else . So many people do not have this luxury and are treated appallingly by work when these things happen .

I can see that you want to do the best for her, but the one thing she wants is the one thing that nobody can do for her . So I would say just being there for her as you are now is and will be a great help to her .

CUNextTuesday, having been on both sides of this situation I can totally understand how you are feeling. The truth is nothing you say is going to help as such. All you can do is try to help take off any pressure/worries. Don't know if your employers has a support service if so reminding her that they are there plus some of the cancer oragnisations. The main thing you are already doing which is listening.

btw try not to take this home with you, it can be hard but certainly won't do you any good.

Thanks guys - I know you are right, just my heart breaks for her and her situation. I know there's nothing I can practically do, but everything that comes out of my mouth just sounds trite and rubbish

The fact that you are saying something and not ignoring the situation will mean I lot I promise you . As LBaM says it is hard on you too so make sure you are being kind to yourself as well .

It sounds like you are doing ok to me.

You are still talking to her. I can bet quite a few of her friends have backed right off.

The only thing I can really say that upset me terribly was when people said things like

'you mustnt give up hope'
'you have to pray for a miracle'
'you have to be strong for her'
'oh no dont tell me that' (when I told people who asked how she was - how she was)

I was very upset by those who seemed to be saying that I didnt care enough about DD to keep her alive, like I had given up because I had accepted she was dying. Those comments stick in my head and yet the rest of that time is mostly a blur.

As you say your friend has accepted that her DS is not going to get well IMO its for you and others to accept it too.

You cannot make this better for her. It is what it is, the worse thing in the world. But she will remember you being there and listening to her.

I am so sorry for your friend.

Thanks chegirl and I'm so sorry for your loss. And how awful to have to subconsciously hear those sort of comments - there is a world of difference between 'giving up' on someone, and letting them go with dignity

In a way I'm 'happier' now she has accepted it as it's something we've known is on the cards for ages, but of course we never would have expressed that to someone who clearly wasn't in a place to hear it. And to be honest I still wouldn't say anything that bluntly acknowledged the inevitable, unless she gave off signals that this was how she wanted the conversation to run.

I appreciate you saying what sort of thing is upsetting - I know I've said to her in the past about her being strong (as in needing to keep her strength up) so I will think twice about going down that line again.

The others have given you brilliant advice, and they know how it feels to lose a child. You sound like a fantastic manager, and I wish my mum (and I) had had you when my brother died. I agree with the others - don't say meaningless, 'comforting' things, but give her the flexibility she needs. And always ask her how he and she are today - ignoring the situation is the worst worst worst thing any manager can do, in my experience.

The comment about being strong is one that upsets me also. But don't stop checking she is looking after herself.

Someone said this to me once after I had helped them through something like this....You'll never remember what people said to you but you will always remember how they made you feel.

By the way, I don't know if you or she are religious, but if you are, please don't say anything like 'He is going to a better place' or 'God has a plan for all of us' (both of which have been said to me). It made me so angry I wanted to hit people, and it showed a complete lack of understanding of who my brother was.

If she's religous she'll work through that her own way. If you are, please keep it to yourself!

With you on that one Miss M. I always like to think of my dad turning up in spirit when times are tough or there's something I'd have wanted to share with him (let's say a crunch Man Utd match I'll sense him sat on the sofa next to me!) but that's a difficult subject to address with anyone else, or to sell to someone as it's so personal, and of course she may not feel like that.

I'm sure in time she'll find her own comforting thoughts/feelings. I know feeling like Dad is close by brings me immense comfort but equally some people may find that just too spooky!

It has really brought home to me that it's such a difficult area to get right, despite death being an inevitability (I know the circumstances are always different and people react in different ways) but you can so easily get it wrong and end up making things worse despite best intentions .

I think just the fact that you're thinking about how best to help her and being so sensitive to how she might be feeling is so much more than the average manager or person might do. I'm sure it is helping her immensely, even if she has no awareness of how at the moment.

Of course the problem with an bereavement is that epople feel like thay have to say something and then it comes out wrong.

True. But then they get scared it'll come out wrong and say nothing at all, and that's worse in my experience, like they're pretending it's not happened.

I believe in God and heaven and get a lot of comfort from knowing where DD is. But I didnt appreciate strangers telling me that DD was in a 'better place'. What better place than with her mum?

It was always people who didnt know her!

I think you will be fine because you are thinking about what you are saying.

I knew people were trying to be kind. I didnt get offended easily and realise that people were desperate to say the right thing.

I had to go to the supermarket whilst DD was very ill. She only had a few days left. I obviously looked awful and a very young man at the checkout asked me what was wrong. I told him that my DD was terminally ill (always one for being honest!). He was clearly a religious person but the way he almost dismissed my pain by saying I shouldnt be sad because of where she was going, made me want to punch him!

He was only about 19 and had no clue.

My husband died two years ago from an inoperable brain tumor. You sound great from a work point of view, my employers were okay but not fantastic, and certainly didn't phone me up and say supportive things (they even tried to change my working hours when he was very ill).

In this situation, part of your brain knows this is hard for people talking to you. So be careful and kind, but try not to get too stressed about saying the most perfect supportive thing all the time (easier said than done I know). It is more important that you are communicating with her and being sympathetic.

Things that helped: friends saying: "you are doing really well, you are fantastic the way you have coped". That didn'd feel patronising, I felt acknowledged. From what you have posted, and I know everyone is not the same, I would find talking to you helpful.

If in doubt say: "I'm so sorry to hear that."

My husband died from a brain tumour 20 months ago, i found things were made much much wrose by people ignoring things or the number of people who told us that they were someone who knew someone who had survived GBM4 (not possible) the worst was when people said that if steve was positive or battled hard then he would beat it, course then it makes you feel like you didnt try hard enough so it was your own fault.
the things that were helpful................
macmillan nurse and the online mac brain tumour forum.
mumsnet, we had loads of support from people here.
i found it best when people asked questions that allowed me to say how i felt, so like............... how do you feel about that, that must be sad, what can i do to help.
in our case steve was confused his family were in denial our kids have autism so i felt like the only person in the world that knew what the situation was and i needed to share, if you do a search on my name you will find loads of stuff, do shout me if you think i can be of any help.

OP you sound like an amazing manager, Sonia is lucky to have you. All the above is very sensible, I think the only thing that occurs to me is if you want to know how she is, don't just take "fine" or "alright" as an answer - follow up with "well you're not fine are you, how are you doing really, I can only imagine that you must be very tired / sad / numb" (delete as applicable).

also there will be a lot to think about once her son does die as in how she wants to manage coming back to work - she may desperately need another focus and want to come in rather than being told that she must stay at home for x no of weeks. when she comes in she may last all of 10 mins before having to leave, or have a break or a walk, or she may throw herself into work for weeks and then be very down again and unable to cope. this is another subject really, but wanted to raise it. I am sure you will be managing the coming months brilliantly as you have done the last few years.

so for them.

'Sonia' is really lucky to have you as her manager & friend. You are doing really well and it's something, that for the rest of her life, she will remember.

I found being asked if I was 'holding up' easier than if someone asked 'how are you' - because automatically you say 'fine' when you are anything but and 'fucking awful' is just not that acceptable nor really is 'how do you think I am' - but if someone said 'are you holding up' I could say 'yes, just about'...

However, as many others have said, just having someone outside of the immediate situation that calls to say they are thinking of you means a lot. I know you will, as you are clearly a very caring person, just make sure that calls keep on coming for a long time - the worst thing is to feel like everyone else has gone back to their life.

What else helped? People bringing simple food, real friends who ran the hoover around, stuck a load of washing on, pegged it out - all without asking what we wanted them to do. But it depends if you are comfortable with that or not....

If not, you are doing so much already - don't beat yourself up about what else you can do - just continue being there for her x

You are being a fantastic manager and friend.

When in doubt, could you just say "Sonia, I just don't know what to say that could help you, but I am here for you". I think if I were in her shoes, I wouldn't mind hearing that someone had no earthly clue what to say, but was trying and could be relied upon.