Mum in intensive care, may die - how do you deal with the waiting?

LegacyUser

Hi,

am a registered poster but going unregistered on this. My mum had a massive brain haemorrage almost two weeks ago - she has survived thus far but she is in a coma in intensive care. I am not querying the outcome - we have to wait for that - I just wonder how any people have coped with the not-knowing of now. She could go at any time, she could never wake up, she could have brain damage or she could recover.

Thanks.

AngryBadger

That's heavy, and I'm sorry to hear about this. Idoubt there's any real advice for dealing with the waiting, and the not knowing. Except to try and go about life as best you can. I realise that's going to be nigh impossible, but it's about the only thing you can do. Maybe try to spend more time around the other members of your family, and visiting her, aside from that just try to get on with things as best you can,lie you say, you have no idea of the outcome right now, so best to let it be, and deal with whatever when it happens.

Chin up, I can't even articulate how difficult this must be.

vibe666

my mum was in a similar position 11 years ago, so i know it's not easy. i was 16 at the time and just taking my exams (which i understandably screwed up). it was hard, but we got through it. the only advise i can give is to keep yourself busy, and find someone who you can talk to. it's not easy to open up to people when you're in this sort of position that you can talk to, but it really does help if you can. the worst thing you can do is bottle your feelings up, as much as you'd like to. even if it's just here, it might help you to deal with it.

koneko

Talk to a friend, someone you're close to, confide in them and let them know what you're feeling. Don't bottle it up, it won't help. Go somewhere and shout, scream, punch a wall, whatever will help.

And your family can all support eachother at this time. There isn't really much advise I can give you, except good luck and hang in there, take care of yourself and the people you love.

The Muppet

Sorry to hear your trouble . Everyone copes with thing differently so there is no right or wrong way to deal with this, whatever gets you through is the right way for you. The fear of what could happen is usually worse than the occurance itself.

I would advise you to ensure a family member stay at the hospital if not bedside at all times. Do not expect the hospital to call in time if your mums condition worsens. If the worst happens it will be reassuring to know that there was family with her. If your mum is in a condition to understand make sure you say whatever you feel the need to say.

Apologies if I am being too pessismistic but it's better to prepare for the worst, hopefully it wil not come to that. I hope things work out for you and wish the best of luck to your family and a speedy recovery to your mum.

snorlax

im also sorry to her your trouble. i hope your mom gets better.

its probably a good idea to spend time with family and close friends to comfort you whatever you don't bottle it up and look after yourself.

therecklessone

Ah jaysus, really sorry to hear this, you must be devastated.

koneko wrote:

Talk to a friend, someone you're close to, confide in them and let them know what you're feeling.

Best advice I could give. Find someone you trust, and let them know how you're feeling. It will be such a relief to share your troubles, believe me. I was in a similar situation (found out my dad had cancer 2 months before my finals in college, we were told they had no idea of how long he had to live) and ended up spending the night in a mates place talking stuff through. It helped clear my head and got me focused on what really mattered.

Hope this helps.

bandraoi

You could also try writing stuff down about how you're feeling.
Sometimes it helps to be able to review it again.

Furp

I know what you are going though my own mother was in the same situation just over two years ago but she did not make it as the damage was too bad.

To deal with the waiting I don't know if any words can really help, my own mother was only in ICU for two days before teh machines where turned off.

It is the most difficult time of your life but whatever you do don't bottle it up talk to friends and family, and talk to your mother whenever you are with her try to get soem time alone at her bedside and hold her hand and talk.

The waiting is very hard but no matter what happens and i really hope that she recovers, you may feel like i did that your in some kind of twilght zone that time just seems to not move and you lose interest in everything, just do the best you can. if you want to talk about it feel free to cotnact me, i don't no quite what else to say as it has brought me right back to that time.

Only I really hope that she recovers and i wish you ad your family the best in this difficult period.

Paddy20

I have little doubt but that, you, your family and friends will all be granted the inner strength needed to cope at this dreadful time of suffering.

Have faith.

LegacyUser

Hi all - I just wanted to say thanks to all of you for your kind words.

mycroft

Keep us all posted, be brave, good luck

isolde

It's the waiting and the not knowing that's the hardest sometimes. I don't know how you can make it easier for yourself and the rest of your family.. I really don't think there's a best way to deal with it.. just try get a little bit of sleep every day and eat something to get you through, whether you feel like it or not.

Try to stay as positive as you can. My dad was in the exact same situation as your mam 3 years ago. I had never even heard of a brain haemorrhage before that. But he survived it. People do pull through and can recover to a great extent.

Take each day at a time and know that this is something that you will get through, as hard as that may be to believe right now. At a time like this, you discover that you have huge amounts of inner strength that will get you through. My heart goes out to you.. take care.

~ isolde.

LegacyUser

Thanks again for all the posts, they have been very helpful - thank you all.

Mum had a scan today and she is off the critical list - still on high dependency and still in a coma and we still do not know how much brain damage she may have but she is on the slow road to recovery. Is amazing how you will accept anything when it has all been taken away but we still have her - now we can take it day by day. I know that there are going to be speed bumps along the way but at least she is on the pathway to recovery.

Thanks.

Missie Mia

You poor thing, my heart goes out to you.
Was in a similar position with my dad for about 6 -7 months, very seriously ill and doctors couldn't tell us what was going to happen. Absolute hell on earth. Like everyone else here, talking to and being with family and friends is the only comfort. I found that work helped a bit as well, you kind of go on auto-pilot. Try to look after yourself as well, even get out for a short walk every day. And be hopeful, miracles do happen!

LegacyUser

My mum is slowly coming out of her coma - she is trying to speak and moves her eyes but we still do not know what we will get. Sorry for moaning - am very grateful that mummy is still alive but the first while we were running on empty and we almost felt numb at times, now the full realisation of what has happened is sinking in and the emotions are flooding back...we still do not know her prognosis and her recovery is so slow - she is also still at risk of dying at any time as she has more potential bleeds that need further operations but that is risky also.

Sorry again over this rant - delighted mummy alive, just scared of the future and scared that we could still loose her.

mycroft

MumIll wrote:

My mum is slowly coming out of her coma -
Sorry again over this rant - delighted mummy alive, just scared of the future and scared that we could still loose her.

Don't apologise, if for nothing else you've reminded me about how lucky I am and put 99% of the sh*t I moan about in perspective.

Good luck.

LegacyUser

Hi again,

this may be another rant so appologies in advance.

My mum took her feeding tube out last night and today we were hoping that she would be able to swallow and thus not need it again but she is not up to it...is upsetting as I do not know if she will ever be able to swallow again and the tube is making her distressed.

In am working full days again and seeing her in the evening - my mum might have 30 minutes where she is alert enough to look around on a good day but I am not seeing those moments - thus I see her when she is incoherent at best. We are trying to have family with her at most times as with the best wishes in the world the high dependency ward that she is on is not able to cope with her high needs. My mum can not do anything for herself.

In addition - we have seen so many people die from her complaint in the past few days which is very distressing, it makes us realise how lucky we are, but on the other hand there is a sense of comeradery among the families, so it is very tough to see them go.

My father, who is the most sweet, calm and funny man in the world is feeling the strain terribly - they were married over 43 years. We also have to comfort her siblings who are naturally taking it badly and are keeping them informed at all times...sorry, the stress of it.

The thing is, this is long term (we hope) - people were great for the first few days but now it feels as if they expect things to be back to normal - what is normal? If anything I feel like I need people more now but I dont want to impose and I dont want to sound like a moan but this is so tough...in the first few days your body protects you by almost going numb, now I feel all the pain and the fact that this is going to be ongoing so long...argh...

Sorry again for the rant.

daveg

Feel free to rant. Don't feel you have to apologise. Very very sorry to hear about your mum. Our prayers are with her. Best of luck.

Beruthiel

MumIll wrote:

Sorry again for the rant.

please don't apologise
you rant all you need to and for as long as you wish!
this forum is here for anyone who feels the need to vent.
I am truly sorry for your Ma and hope things get better for her soon.
a

josh40

All of us go through something like this at some stage.It's hard because everyone rallies round at the beginning but as time goes on people expect you to go back to normal. Your real friends will always make an effort to listen when you need to rant, the others don't matter anyway.

I hope your mom makes a full recovery but remember even if she ends up with a few problems that she and you will learn to adjust.Try not to think about what may happen next ,at the end of the day none of us knows what will happen Tomorrow.

The best adviceI can give you, as someone who has been there, is try to find the time to take care of yourself too. You won't be much use to anyone if you don't.

therecklessone

MumIll wrote:

Sorry again for the rant.

Sorry if I'm repeating what others have said...

If "ranting" on here allows you to exorcise your demons at what is a very stressful time for you and your family, then you have no need to apologise.

Rant away.

*hugs*

*Page*

i know its hard 4 yrs ago i had a very hard year with waiting illness and saddness
u wake up and you smile you talk about the good things and you hug everyone u see when u see them firsts and everytime after you look right at them and give a liitle smile or a warm hand on the shoulder... it helps wit the wait to at least know your helping someone else wait with you

Emmo

This time last year my mother was very ill, so much so that I was called from work and told by my father that my mam was going to die within the hour and that I should get to the hospital to see her.

She had developed a lump in her breast about five years previous and ignored it for 3 years. When she finnaly got it check out it was cancerous and she had to undergo a mascetomy (removal of her left breast) and undergo caemotherapy.

During this time she became so very tired and sick she was totally run down. She eventually came out the other end, she got stronger and was in recovery. As part of this recovery she had to take a medicine to fight the cancer. This medicine caused blood clots to form insider her this time last year and within the matter of a few days she had been rushed into hospital.

During the next few hours these blood clots travelled around her body and proceded to lodge themselves in her bowel, one of her kidneys and her spleen.

When these organs where starved of blood flow they proceded to die and her body went into shut down. She slipped into a coma and suffered a serious of strokes. We didnt know what was causing the blood clots, there was talk of internal wounds, a form of cancer but eventually it was proved to be the anti-cancer drug.

She was in the coma for 3 weeks and she lost about 7 stone in weight. When she came around at first she couldnt speak, then she coudlnt make sense putting words in the wrong syntax and comepletely wrong meanings, then she was talking about things that hadnt happend or didnt exist like my brothers (I only have 1 sister) and the puppies (we have never had any dogs).

Things slowly got better, she started to make sense. She began to talk, walk and generally more aware and alive.

My advise to you is to just be with your loved ones. Be there for each other and talk about things. If you want to vent then get mad, scream and go bannanas. Dont bottle up these emotions as you will let have to let them out sooner or later and they could destroy you.

I hope that your mother gets better and if you need anyone to talk about tit with then drop me a PM

Emmo

LegacyUser

I'm so sorry to hear about your mum.

I don't really know what to say. My dad had an op for lung cancer just over two years ago. He got infected with MRSA (the 'hospital' bug) which resulted in complications leading him to lose conciousness.

He was out of it for a week before he finally died.

It's heartbreaking to watch someone you love so dearly just lie there when all you can do is hope they are in as little pain as possible. I don't know how 'out of it' my dad was - I do know they had to restrain him at times because his arms flailed about - other than that he may aswell have been in a coma - there was no reaction what so ever.

I'm glad to hear your mum has come too - she's been though a lot so it will take time for her to start to return to 'normal' so if you find yourself taking one step back every now and again be patient... don't focus on what went wrong or how long her recovery is taking - instead focus on how much better she is doing since such a day - how the little things have improved.

Whatever the final outcome I can promise you that your family will change forever - you may or may not grow closer to your family but you will learn a lot about them during this time and you'll also learn a lot more about yourself. I was ill with depression when I was about 17... to the extent that I physically couldn't use a knife and fork. Two years later my dad died - I never imagined I could live though such an ordeal, and yes it feels like hell when you are living it, but now when I look back I'm amazed at how well I coped... and still cope with the grief.

You'll be amazed at the strenght you'll find within yourself - and if you can share some of your burdens with friends or family you'll find your relationships will develop to a deeper and more meaningful level,

I hope everything works out for you,

Love and hugs,

Evie

LegacyUser

Hi all,

just an update - it is almost 2 months now since mum got ill. The great news is that she is still alive. She was fed with a tube down her nose for a while but she kept on pulling it out, she was fed intravenously for a while but it was hurting her arms so we had to get the tube in her tummy - she is still not really able to swallow. She is going for an assesment shortly as she needs another operation - so it looks like she may be back in intensive care over Christmas if she survives this one, but if we still have her that is the main thing. She is able to laugh, she can draw and write a limited amount and they are teaching her how to speak again - she really has to concentrate to do it. The really amazing thing today was when she said hello when my brother gave her the phone...talk about priceless. It has been very tough on all of the family - my brother, father and I. Each of us falls at different times and we pick one another up...we have her siblings and friends who I am sure are sick of us by now - they have been great. I am leaving work to spend more time with her at the moment - has been too much keeping everything going so I didn't have time to give so the job did...is like living in a nightmare, but then she does like she did today or like last Saturday when a friend of mine who is a doctor said that yes, we did get the death speach on the first day and that they would have expected her to die immediatly but she has not. Now we have a goal if she survives the operation - my dad and I have a birthday in March, mum and my brother missed their celebration in September as mum got ill so am starting to hope that we can have a massive celebration then...its still very tough when I can't call her in the morning, at lunch and in the evening and I wonder where the hours are...but we still have her. Thanks for listening.

therecklessone

Thats really encouraging news, and I'm sure that every little improvement from here on in will lift the gloom ever so slightly.

You sound like you're dealing with this in a really positive manner, and thats a good thing. Having family and friends around to share the moments of weakness must be a huge help.

Anyway, hope things keep getting better for you and your family.

Agent Smith

thats Great news! i'll be honest, the reason why i didnt post earlyer is because i've recently had a loved one die.

The fact that she will be having another operation is, in a way, a good thing. The Doctors must think she is strong enough to have another operation. which must be a good thing.

Give her all the love and surport you can. not only from yourself, but from everyone here on Boards.

RossFixxxed

agent smith wrote:

Give her all the love and surport you can. not only from yourself, but from everyone here on Boards.

Damn right! Great to hear that things are improving. Your strength in all this is quite amazing.

Hope things keep on getting better.

Ross

Hagar

I'm delighted for you.

Furp

Thats Great to hear that your Mum is improving, I'm really happy for you, and it is a good sign that the doctors think she is well enough that they can operate.

I'm glad that you are getting through this difficult time and you sound like you are in much better spirit and optomistic than when you last posted.

isolde

hey,

so glad to hear you sounding much more positive than before.. and so, so glad that things are beginning to look okay again. believe me, it's hugely encouraging that they're operating again, they wouldn't if they didn't think she can handle it.
you all have a long road ahead but it's something you really seem able to cope with.. and she'll get through it in time. the occupational and physiotherapy parts of the recovery process can be very frustrating at first.. but the difference afterwards is life-changing.
it's amazing how resilient people can be.. and i don't just mean the people who fall ill.. this is one of the hardest tests of character ever. you'll get through it, stay as strong as you can, you're doing great.. but remember everyone's entitled to their moments of weakness.

*hugs*
~ isolde.

Private Joker

It's great to hear your mum is getting better,believe me I know how hard it is for you and your family. My dad just passed away last month he was in intensive care for many months, I don't really want to say much about the illness and such because i don't think that's appropriate. But we were told a month before he died that they had done al they can for him.

At times like this you really know who your friends are, it's importatnt for yourself to get away from it all, go off for a weekend and don't feel like your being selfish, it's only natural that you''ll be worrying about things but you just got to forget about things every now and again and have some fun.

If you need some one to talk to you can pm me any time

CathyMoran

Hope that it is OK to post reg on this - have let some of it slip on some of my other posts so I do not see any point in hiding any more. OK - well, mum is doing great at the moment - she started to talk 3 weeks ago, started to eat 2 weeks ago - now she is eating waffles, omlettes and winegums. We were even allowed to take her out of the hospital room for the first time in almost 11 weeks since last Friday (in a wheelchair with special adaptations) and today she went outside the hospital for the first time since "it" happened, it was only for 30 seconds but she loved to see the outside. Now the scary stuff - she is due to go for the assesment on Friday (there were some delays) - she is there enough that we may have to tell her about the next operation - how do you tell someone that they have a 1 in 20 chance of dying if they have the operation, that they may suffer more permanent brain damage - who decides? Does my dad? If she does not have the operation she has two walking time-bombs in her head. She will be at a high risk of dying until 15th September next year - I have to always live with the phone on - when it rings I get afraid that it is "the call"...sorry for the rant. I had the last two weeks to spend most of my time with her and now I have to start a new job tomorrow...what do I do?

CathyMoran

Err, sorry that I am in such a bad mood about this thing with mum - I just never saw it happening...you can't always be happy and upbeat about it. Was at the beer last night - my first night out since it happened - was great to get out but I didn't have my sparkle - here am I ranting about this when mum is in hospital - I had to leave her this afternoon as I had to get ready for the big day tomorrow. Was crazy - mum seeing the outside world for the first time in such a long time was a teary moment for me - she wanted to look at a garden that is in the center of the hospital - amazing what we take as normal. I'm not looking for pity or sympathy - but it is nice just to let it out. I just hope that I do not become a mum bore, but it is hard not to think every second about her at the moment. Sorry again about the rant.

CathyMoran

An update more than anything else:

My mum is still alive, when I look back over the past 10 months I could never have imagined how far she could have come. Mum is walking with the aid of a walking stick, though she still uses the wheelchair occasionally. She is still not "mum" in so far as she has experienced a brain injury but she can still act like my mum when she wants to! Her sense of humour is far more prominant than in the past, she still loves fashion but is getting into internet shopping now. She does need to be looked after full time though and that it particularly tough on my dad who is her main carer. We still live with the knowledge that she could still be taken from us at any moment as she has further anyursms to be clipped, though the other risk factors have been minimized, she is due to be checked to see if they should go through with further surgery yet in the next few days/weeks, though being checked in itself carries a risk of further brain injury.

Just sometimes it can be very upsetting, a memory to the past or thinking too much, you really have to live in the present which is not always easy, but we still have her for now.

DawnMc

Going thru it at the mo girl and been there before. PM me if u like