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My mum is critically ill...

93 replies

willow2 · 15/01/2006 18:57

Excuse the rambling post, but my head feels as though it is about to implode.

We were away over Christmas and NY (Oman, staying with friends, unreal holiday). Spoke to my mum on New Year's Day - she had a bad cold but was otherwise ok. The next day we went camping in the desert, so were completely uncontactable until the 4th. As we drove back I turned my phone on to find various rambling messages about my mum. Finally, I managed to get through to my brother and found that my mum was now in intensive care. Fortunately, we were flying home that night anyway - so I went straight from Heathrow to the hospital. And I've been there every day since. Mum was heavily sedated and on a ventilator - she'd burst her lung through coughing and the other lung had collapsed - but still in a terribly distressed state. Spent the first two days trying to stop her pulling her ventilator out. Then they operated on her lung to seal the holes. She made it through the operation but the surgeon found her lungs were in a terrible condition - turns out her "asthma" is really emphysema, but then that's probably not something you admit to your family when you are a heavy smoker who has tried everything, including Zyban, to give up but, actually, don't really want to stop. Plus she had double pneumonia. Plus she had another infection.

For about five days she was out cold - heavily sedated, ventilated and, at one point, on dialysis because her kidneys failed too. (They seem to be working again, but who knows what's around the corner.)

Now, nearly two weeks after being taken ill, she is still in intensive care, still on a ventilator, still not free of pneumonia or the other infection and still in a terrible state. She is now conscious - well, kind of. She's very confused and, I imagine, absolutely terrified. I know I am.

Yesterday, because she'd had been intubated for so long and was having such a dreadful time coping with the tube going through her mouth, they did a tracheotomy - so now she has a sodding tube going into her neck to make sure she can breathe. Supposedly, it's temporary. I bloody hope so - apart from anything else, she's not the sort of woman to enjoy doing Darth Vader impersonations. Not that she can even do that yet, she still doesn't even have the strength to breathe, let alone speak - and that's getting to her too, understandably. To be honest, she was in a foul mood today - annoyed that we couldn't understand what she was trying to say (she can't write anything yet - she's too weak plus she has such dreadful odoema that she can't really hold a pen as her hands are too puffed up) annoyed that I wouldn't let her guzzle down glasses of water (because if she drinks too much, too quickly, she'll be sick. Not a good idea when there's half a yard of garden hose down your throat.)

I understand that this is all part of the "healing" process - if she wasn't getting upset and depressed it would be more worrying - but it is so hard to see her going through all this. I know that she is making small improvements in the right direction - but she is still so terribly ill that I can't relax for a second or take any strength from these tiny steps. Everything happened so fast two weeks ago and I'm just petrified that she'll get another infection or something. (Die, I suppose.) She's only 64 - and she's a massive part of my life. We are best mates and I'm terrified for her (and for me) that if she does make it through all this that she will be a pale shadow of the person she used to be - hooked up to a bloody oxygen tank or worse.

I'm spending all "school hours" at the hospital. I'm not alone - my lovely step-father is there as are my aunt and uncle. Plus my brother, sisters and step-sister are in and out too. We kind of have this shift system going where we take it in turns to sit with her. But I daren't voice my worries to them, least of all my step-father who would be lost without my mum. So I'm going to put them here - if that's ok with you lot.

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unicorn · 16/01/2006 09:09

willow, really sorry that you and your family are going through this.
Try and look after yourself, as you'll need all your strength too.
If there is any help you need, from any of us, just shout.

ggglimpopo · 16/01/2006 09:21

Message withdrawn

fairyjay · 16/01/2006 09:24

Willow -
Look after yourself, so that you can stay strong.
My mum had a major heart attack at 68 - around the time my dd was due. She was so poorly, and it was vile seeing such an energetic person lying there, looking so old. BUT....12 years on, after all the worrying, she's still going strong! It can be a slow process though, and at the end you will wonder where you got your strength from. Thinking of you all.

Miaou · 16/01/2006 09:48

JUst seen this willow, how awful for you all. Please use us as a sounding board when it all gets too much and we can be your listening ear.

winnie · 16/01/2006 09:57

Willow, am thinking of you. I am so sorry you are going through this. I do have some understanding of what you are going through.
Take care of yourself (I know easier said than done). Winniex

willow2 · 16/01/2006 14:45

Day 14 in the Cromwell Hospital household...

Well, at least she's in one of the best hospitals in London (apparently). Everyone very nice, place is clean, can get a decent cuppa when I need one and crash out on the sofas in reception when it all gets a bit too much.

She was a bit more with it today - but still so ill and tired. She hasn't got the strength to talk, write or point at letters at the moment - but my lip reading skills are pretty crap so frustrating for us both. Trying not to get worn down by the fact that she always seems to be nicer to other visitors - think it's a similar scenario to the kid who always behaves worst with its parent, only reversed. I'm her non-verbal sounding off board because she knows I'll take it - pretty certain she mouthed "fuck off" when I tried to stop her drinking her water too quickly. Think this is a good thing as a) it's important for her to be able to sound off, albeit in silence and b) her choice of language was very much in character - so maybe not so doolally after all?

It's so difficult to know whether she wants you to talk to her or not, though. She looks so tired that don't want to stop her grabbing some sleep but feel a bit daft just holding her hand in silence in case she does want me to talk. But also feel a bit daft just rabbiting on inanely. Not as if I have a huge deal to talk to her about at present: "well, for the past two weeks I've been sat here or been looking after DS or been asleep - how about you?" Have asked if she'd like me to read to her but no real response. Not sure how much is registering with her and how much isn't. And it's not like I can busy myself sorting out her flowers, re-arranging cards or just helping with her nursing. She can't have the first two and we're not allowed to touch a thing - which is good as I don't have a clue what all the tubes are. One bit of good news is that they are removing the last drain from her lung (she had three after the operationg) as surgeon thinks it has healed - so that's one less length of tubing to worry about treading on.

God this is shit.

OP posts:
willow2 · 16/01/2006 14:45

Thanks for all your kind thoughts though. (Mustn't forget my manners.)

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Dinosaur · 16/01/2006 15:00

willow2 I've only just seen this. I'm so sorry .

If it were me, I know I would just rabbit on to my mother, but then she and I do have kind of a rabbiting on to each other relationship anyway. I think that if you feel like doing it, do it and if not, then there's nothing wrong with companionable silence and hand-holding. How about maybe gently reminiscing about stuff from when you were younger - or would that just be too upsetting?

CountessDracula · 16/01/2006 15:00

oh god it sounds awful

I know this may sound off, but do you think she could do with time on her own? I remember when my dad had had his bypass he felt exhausted and under pressure to try and seem vaguely ok (when he wasn't) whenever anyone was there. When they weren't he could just get on with being ill and getting better.

Maybe you should take a book, sit in the relatives room (or local coffee shop) and then just go in every so often?

Just a suggestion....

FrumpyGrumpy · 16/01/2006 15:06

I bet both of you are just looking for some signal that she's progressing, even a tiny bit. Its hard to see but I hope that when she does start improving it comes in big leaps.

Then you'll get excited about tiny things. I texted everyone I knew saying "DD SMILED, SHE SMMMIIILLLED!!!" and then a couple of weeks later "SHE ATE AN EGG, SHE ATE A BLOODY EGG!!! YAHOO!"

You're doing great if you blab away about bog all, she'll drift in and out of the bits she wants to hear and you're doing great if you don't blab on, just being about is enough. Sometimes dd was just happy to lie her hand on top of mine(it hurt her too much to cuddle). Really, just being there is great but remember to have time away or you'll feel so frustrated.

I put up a picture of dd in her nativity play the week before she got ill, next to the bed. She looked so fantastic in it I would look at it and (a) get upset at how she looked at that moment but also (b) it gave me focus to how she would look again. The nurses were interested too, they could get to know the real person.

I'm blabbing (shut up FG).

winnie · 16/01/2006 16:54

Willow, I think you should take the fact that she is herself with you as a sign that she trusts you and doesn't have to put on a show of being ok when she very obviously is not. It is extremely hard work being a patient and dealing with concerned visitors. Believe me I do understand how heartbreaking it is for you and you feel so impotant... but you are there for your Mum and she knows it. Take each day as it comes, and if it is possible, get a chance to divert your attention from time to time too. I found forcing myself to do something with the children meant I had to concentrate on them.
Best wishes Winnie

PrincessPeaHead · 16/01/2006 17:52

willow, have you got a radio in there? if she is someone who is used to eg radio 4 being on she may enjoy it - put it on low and it becomes sort of background noise and fills in the silence, but she can listen to it as well. And you can sort of comment on the bizarre programmes that theyhave on sometimes.

I don't know,might just add an air of normality to the room, just a suggestion...

Blu · 16/01/2006 17:58

Willow - just to say I'm listening, too.

trefusis · 16/01/2006 18:28

This reply has been deleted

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bubble99 · 16/01/2006 18:43

Willow. Sorry to hear about your mum. Look after yourself. XX

LadySherlockofLGJ · 16/01/2006 18:43

Oh Willow, thinking of you.

WideWebWitch · 17/01/2006 09:43

Willow, when my dad was dying he kept saying 'you'll never know how much this (us being there and holding his hand) means, it makes a big difference' so don't think you aren't doing anything by just being there, holding her hand. x

willow2 · 18/01/2006 21:10

just to say she's really bad at the moment - taken a turn for the worst, put a hole in her lung again through coughing - either an old one or a new one, don't know - chest drain is back in, now heavily sedated again. Surgeon says her lungs are knackered and it's up to her now, there's not much else he can do. We were all called in to hospital this morning as she was in such a bad way but they stablised her during the day so we've come home as there's not much we can do - she's out cold and that's the best thing for her at present.

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Marina · 18/01/2006 21:17

willow, I've only just seen this. I am so sorry, and so sorry she is critically ill again. Hope it helps a bit to know that lots of us are thinking of her and you.

willow2 · 18/01/2006 21:34

It does - thank you xx

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WideWebWitch · 18/01/2006 21:42

I'm sorry willow. Is there somewhere for you to stay there? Or did you want to come home? Thinking of you x

ScummyMummy · 18/01/2006 21:47

So sorry to hear this, willow.

Flossam · 18/01/2006 22:03

Willow I've only just seen this I am sorry. I work in ITU, not an expert by any means but if I can help please ask.

RE talking to her, just tell her about normal day to day stuff if you can. Like your childrens school results, mundane everyday things. When you are lying in a hospital bed for hours on end it is just nice to hear something. I hope she becomes more stable again soon. I'm around if you need any help. x

FrumpyGrumpy · 18/01/2006 23:13

Aw sweetheart, a difficult day. Hoping tomorrow is a better one for you. Hope you can sleep a bit, love to you all.

willow2 · 19/01/2006 18:38

She had an ok night, but no real change.

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