Mum is dying and I feel so helpless...

[Mo2]

This isn't perhaps technically the right place - but it felt most appropriate... just wanted your collective thoughts and experiences to help me through the next few weeks and months, as I feel at a bit of a loss...

My Mum is very ill with secondary cancer. She's 74, and has managed to fight it, with some success, for the last 6-7 years (or perhaps even more - it seems ages).
In the past month or so she has suddenly deteriorated rapidly. She is now in hospital, and although she is having some chemotherapy the consultant has more or less told me this is a 'last ditch' attempt. She is breathless, using oyxgen, can no longer even walk to the bathroom, and appears to be fading fast.
My Dad is with her, visiting her, getting her anything she needs, and generally being the fantastic, supportive soul he has always been throughout her illness.
Meanwhile I am 350 miles away with two young children and a full-time job, and I feel so helpless. I've spoken to her consultant and the hospital to make sure I understand her condition etc, and in 2 days time I am going there for the weekend (on my own - not with dh & kids - we felt it would be too much...)

My mind is just so full of thoughts and Qs though, and I can't sleep for worrying about it all:

• while she's in this condition and in hospital how often should I be trying to get to see her? What's fair to her/ DH & kids and also my Dad (in terms of giving him my support)
• what can/should I say do? Given the distance, every visit has the potential to feel so 'final'
• what could I do to help, make this final period more bearable?
• if, and when, the final hours are near, will I have time to get to her?

And then at the same time I feel guilty that i'm not closer (geographically) and also guilty about thinking so negatively - if they are still treating her, perhaps we should still be hoping for some possibility of success?

I also have an elder brother, who is about 150 miles away. I'm not particularly close to him (for all sorts of reasons not relevant here) and he is also causing me anguish at the moment. Although he is in touch with Dad and aware of the situation he seems to be completely in denial as to the seriousness of Mum's condition. When I asked if he was going to visit she gave me some crap about how he couldn't just 'drop' his work (he's a freelancer) and how I didn't understand, and how he didn't have a partner to support him or pay the bills blah, blah, blah. He also kept talking about "when Mum came home" and how we'd have to find her things to do etc. When I suggested that she might not be coming home he just accused me of being negative. The final straw was when he suggested that Dad was trying to persuade Mum to stay in hospital as he couldn't be bothered to keep visiting (which is absolute rubbish - the fact is, Mum cannot even get to the bathroom, and is having blood tests everyday).

Sorry for rambling - this just all feels so unreal and new to me, as it is the first time I've been so close to a dying relative

Mo2 how terrible for you, I'm so sorry to hear about your mum Sounds like she has been very brave.

I suggest you talk candidly to the doctors when you go to the hospital about the realities of the course of the illness so that you can plan accordingly. I'm sure your work would give you some time off for compassionate leave if you need to get to her suddenly.

As for what you can do to make it more bearable, I have never been in this situation, but I should imagine just being there and talking to her would be fantastic, maybe take in some photos of when you were young and remind her of happy times you all spent together etc.

Best of luck xxx

I've read this twice now to try and say something that will help you - but all I can add is just make sure your mum and dad know you are there for both of them by keeping intouch by phone. It is hard when you are so far away and I am sure they would both appreciate anytime you may get a chance to go down and visit - as they are aware of how far you are and that you have your dh and children to think about - try not to feel too helpless. I wish I could say something more - but be strong and I wish you and your family all the best during this difficult situation. Take Care of yourself. Xxx

Oh God Mo2, wish I could add something but words fail me. Just want you to know I'm so sorry and so sad for you. Mumsnet I'm sure will be a great source of comfort and support. I know that nothing could help Beetroot as such when her friend was dying and then passed away but I'm sure she would agree that the words and support she received from mumsnet did help if only a bit and if only for a moment. Perhaps Beetroot would be a good person to talk to at this time if she feels able?
Lots of love to you Mo2 -
Thomcat xxx

Mo2 I've read your post several times. I don't have any suggestions except please DON'T feel guilty either for where you live, or indeed for 'thinking negatively' - alas, you're only being reasonable. And please ask us for all the support you need.

I wish I could hug you in person. MIxxxx

Oh what a rough thing to be going through. All I can do is to send you cyberhugs, and to listen to you.

Firstly Mo2, I am so sorry for what you are going through, my thoughts are with you. I would second what ks says. Definitely make sure the hospital staff know to keep you informed if anything changes for the worse. Does your mother's hospital have a palliative care team? They are the best people to talk to as they are there to help people to die with dignity and also with loved ones there. They will do their best to let you know when you should come. They also understand about pain relief and so on and how things like that might affect your mother. Re visiting - this is very hard. After my father died, I felt that I hadn't been with him enough in his last few weeks (I am only 45 mins from his home/hosp), but then dd was only 9 weeks old when he died and I think I was in post-natal denial and didn't really fully understand that he was going to die. However, he was told that things were bad a few days before he died and although I was with him, he chose not to say anything "significant" and I have to respect that. He didn't want a big deathbed scene, and said so. I am lucky in that he was a wonderful father and I know he loved me, and I also told him how special he was after my mother died, so even though I would have liked one last chance to talk deeply to him, it was not really neccessary. You sound like you have a good relationship with your parents, so I would take the lead from your mother. I'm sure your father will be happy to see you whenever you are able to be there.

With regard to your own family, I would take all the time you need, even if it means a short time of slight neglect to dh and kids. This is a very significant time of your life and you cannot shield them totally from it, families have to share good and bad. I agonised about juggling ds/dd and my dad's illness, dragging the kids in and out of hospitals, but now I realise what a comparatively short time it was for them and I wish I had just asked for more help so that could have been with my father. If you can, arrange for friends or neighbours to help out and maybe slot in a few more visits that way.

Sorry - deleted this bit by accident:

Above all don't feel guilty and don't take on resposibilty for your brother - everyone deals with these things in their own way. Let him do what he feel is best and you do what you feel is best for you, your mum and your family.

Gosh - thanks everyone - in less than an hour I've already had some wonderful support here!
Although I'm a 'regular' I've never really posted about anything so deeply emotional before - now I understand why people DO, and the support they receive.

(KS- I think I remember the thread when you were going through this, but I searched and couldn't find it - has it been archived now?)

I think the bit I am finding most difficult is almost the 'expectation' that there should be some kind of 'deathbed scene' as Wilbur rightly puts it. However although we get on fine, my family has never been big on sharing our emotions, and to start doing so now would seem so 'false' and perhaps a bit 'foreboding' or even hypocritical? However, sitting talking about the weather and what the kids are doing also seems wholly innappropriate. I feel like I'd like to talk to Mum about our childhood, how happy it was, what a good Mum/Grandma she is, but like Wilbur's father, I'm not sure that's what she would want. I guess I have to find a more indirect way of getting that stuff across.

Fortunately both DH and my work are being highly supportive about giving me the time I might need to visit. Thanks for the thought about the palliative care team - I am sure there is one.

You are absolutely right about my brother - I shouldn't feel repsonsible. I just have this fear that he really doesn't understand, and will later say "why didn't you tell me?". I personally would hate to be in that position, but then as you say, everyone deals with these things in different ways.

Thanks again for all your support.

Mo2, so sorry to hear your news. I lost my mum almost 5 years ago in v similar cirumstances. I would be happy to talk to you via contact another talker if you want to. Very best wishes to you.

Mo2 - my thoughts are with you too. Just a suggestion and might not be any good but do you think that you could take current photos/artwork from your children and hope that might lead to a discussion of your own childhood etc. You can compare things or discuss events without getting too emotionally heavy but hopefully that would be between the lines.

Mo2 - am so sorry to hear your news. You've had some really good advice here. A couple of things I wanted to add. As people have suggested here, once a person is in the final stages of illness, the medical staff have a very good idea about how long they are likely to have. From my recent experience (sister and sister in laws losing a parent-in-law in very similar circ.s) the medical staff were able to give them the information they needed to be able to make choices about when to visit. The people who wanted to be there at the end were able to be. So I think you will be able to be there for your mother, when the time comes.

My father died very suddenly a couple of years ago. He had a 'condition' but no-one expected him to die so soon. I guess what I wanted to say is that you have a chance to say all those things to your mother you mentioned in your second post. So my advice would be - say them. My thoughts are with you.

MO2, I read this yesterday but didn't have time to post. I'm so sorry to hear about your mother. I agree with Wilbur's last paragraph, do what feels right to you and if you need to see your mum and leave your family to their own devices for a few days then I think you should do it (if it's what you want to do). I left my ds, who was 3 at the time, with my mum for 3 weeks while my dad was dying (they'd been divorced for 30 years so not as odd as it sounds) and I don't regret it at all. It wasn't easy but I think I would have regretted not being there for my dad and ds doesn't remember it as a bad thing (being left with my mum, not my dad dying) 3 years on. Everyone's different though and maybe this isn't what you want to do. Could you write your mum a heartfelt letter saying all the things you feel you can't say in person for fear of being 'false'? You don't even have to be there when she reads it, you could give it to her as you leave. I'm so sorry to hear this, it must be awful. Thinking of you and your family.

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I'm very sorry to hear about your mum mo2. All the advice on here is great - jimmychoos is especially right in saying that staff do know when the end is getting near.My mum wanted to be at home so she was sent home knowing that she only had a few days - my dad called me and I was able to fly home. I too had to leave 3 young children with my mother in law but she managed and I shall be eternally grateful to her for givingme that time with my mum.We aren't great "talkers" in our family but we made sure that one of us was with mum continuously those last few days - she was never alone. Don't worry about your brother he will deal with everything in his own way. You must do whatever you feel is necessary for you. Best wishes grmum

Mo2 - I'm so sorry to hear about your mother. I don't have any advice to offer you but just wanted to let you know that I'm thinking of you. xxx

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Mo2, sorry to hear your mum is so ill. I've been there myself. I went through awful times of guilt, feeling I wasn't with my mum enough, because I lived too far away to visit her every day. One of the best pieces of advice I was given was to pace myself. If your mother is ill in hospital for months, then you will have lots of visiting to do. Don't exhaust yourself at the beginning and accept that you will never feel you are covering everything all the time. You have a family and a job and you simply can't be in two places at once.

You are lucky your work and dh are being supportive - it might help to decide on a regular routine for visits, so everyone knows where they stand.

Do take photos to your mother. I found this prompted all sorts of happy memories and made a natural opportunity to tell her how much she meant to me. It didn't sound too morbid this way, whereas if I'd just come out with it, my mum might have though I was expecting her to die the next day. I have seen both my mum and an old friend become terminally ill with little hope of recovery, but neither of them wanted to talk about their death or openly accept that this was final. They seemed happier when we talked about things we'd do together later on.
Ks will bear witness to this - denial seems a common reaction. The thread link someone gave here will show you this.

I didn't write notes and letters to my mum, becasue she lacked the concentration to read them. But if your mum is reading, this is a lovely idea.

I think you could also write to your brother, stating the facts about your mother's condition as you know them ( after you have spoken to her doctors).Then you know your brother has something in writing, so if he chooses to deny the seriousness of your mum's condition, it is not through ignorance.

Another thing you possibly could do for your mother is to contact any friends or relatives of hers. First ask your mother who she would like to see.Tell these people her hospital address so they can also write or phone. Your father might be doing this already, but check this just in case.

And keep phoning, tell your mum your day to day news, let her share your life. And while your are doing this, you could ask for her opinions and advice on small things to give her something else t think about and show her that she's 'with' you even when she's not there.

I have to go now, but wishing you lots of love.

Mo2, I'm sorry to hear your sad news. I was in a similar situaion with my dad (even had the brother in denial, as well). I haven't read all thse replies in detail but I'll echo the bit about not being afraid to leave your dh/children to their own devices for a few days. They really won't come to any harm.

My dad didn't want to talk about intimate stuff, but he was still compose mentis enough to talk about the news (Monica Lewinsky featured large at the time!) and I was able to slip in little bits about my childhood, taking cues from what was going on around us. Eg another patient had some dahlias and I was able to talk about the days when dad grew them himself on his allotment and I would 'help' him. Just little things like that. Because of distance I was unable to visit all that often so I'd pop little things in the post for him. A postcard with a short message saying what the children were up to or a comment about the lovely sunny day; if your children are old enough to draw/paint/write, a message from them would be cherished, I'm sure.

As for 'being negative' - that is something other people wouod say is 'being realistic' so don't feel bad about that.

Thinking of you, Sue

I have been in this situation with my Dad, and I think that my family sound exectly the same as yours with regards to communication. When he was towards the end of his illness, I didn't change the way that I talked to him or said things that had never been said before, I didn't tell him that I loved him or that he was the best dad/grandad that anyone had ever had. And although this is going to sound quite strange/hard to people I don't regret it and wouldn't change it. I loved him very much and he knew it, exactly as I knew his feelings for me and if either of us had started changing the way we talked if would have been so upsetting for both of us. So we did talk about the children and the weather and sport and loads of other little crap things. But Dad also changed from being a total chatterbox to someone who was very quiet andn withdrawn. The staff will know when the end is coming. I went to visit Dad at around 7pm one night, the sisiter asked if Mum was coming, when I said no, she asked me to get her, and Dad died at three the next morning, but he was unconcious the whole time. I do wonder what I would have done/said if he had woken up for a moment.
My thoughts and prayers are with you and your family, this will be a tough time for you all, you will get loads of support from the people on here, they're not a bad lot really
hugs xx

Mo2 - don't have any good advice for you - other than do what feels right and treat your mum as you always have.

I am sorry that you are going through this and send you all of my love XXX and a big cyber hug ()

Hi, so sorry to hear about your Mum. I posted on here last year a few days before I knew my Dad was going to die and the messages of support were so wonderful so keep posting whatever happens.

I first posted on the Sunday and my Dad died on the Thursday, the hospital said they "weren't expecting him to die". It was very obvious to me so why not to the professionals? I am still bitter that his last days were not more comfortable.

It sounds to me that you need to be with your Mum, get some compassionate leave from work and go to her.

Forget about your brother and what he's up to, he's a grown man capable of making his own decisions and you have your own family to think of now.

I saw my Dad a couple of days before he died and for the last couple of hours, it was horrendous but he has no more pain now. He suffered terribly for 5 years, something you wouldn't put a dog through.

As for taking the children to the hospital , don't know how old they are but I wouldn't take them. My Dad didn't want to see my children and I didn't take them and they have no hospital memories and in hindsight it was the right decision as I thought about it for ages as my 8yr old was vey close to my Dad.

Sending you positive thoughts, where are you, can any of us help you?

Mo2, I'm sorry to hear about your mum and what you're going through, I don't have any advice either, but also wanted to let you know you and yours are in my thoughts. pie xx