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My mum is on a ventilator in ITU and it's not looking good.....

(13 Posts)
Twozealotmorethan1 Sat 14-Jan-17 10:09:11

Sorry for the long post.... My dear mum has been in intensive care (ITU) for 12 days and on a ventilator the whole time and heavily sedated for lots of the time. She's 75. She went in with pneumonia but has underlying heart failure caused by years of autoimmune disease, mainly scleroderma (it's quite rare). She was due to have heart valve replacement surgery early this year - a risky operation for anyone but especially so for her. But the pneumonia came along first.
We were told when she was admitted to ITU that it could go either way but they wanted to offer everything they could that may help. We've been living day by day ever since. She improved slightly initially and we were encouraged but then after a few days in there she picked up a secondary infection (she's especially vulnerable to these because of her immune conditions and the immunosuppressive drugs she takes) and had sepsis. We were called to the hospital and told to expect the worst. She rallied and came over the sepsis with a new antibiotic and the pneumonia has improved but the medics are now concerned that she'll not be able to be to be brought off the ventilator..... She is only needing a small amount of support from it but when they try her with even less or none it makes her heart rate go too
high. They are adjusting a heart drug before they try again but are running out of options.

She is more lightly sedated now and awake a lot and able to communicate despite the breathing tube etc. She is saying she's bored, wants to come home, wants a shower, some food etc. And holding normal conversation. It's so hard. I don't think she knows how ill she is. The staff say she hasn't asked. And we have to be 'normal' and upbeat when we visit and cry only when we leave. Should we tell her what is going on? What would it change? Would she want to know?

I'm struggling and heartbroken. So is my Dad and my other relatives.
I'm not ready for this. Are we ever? I want her to see my children one last time but it won't be possible as they're not allowed in the ITU. I would love one more normal day with her. I feel so sad for the many years of ill health she's endured and for everything these awful illnesses have taken from her. She is incredibly brave throughout. I have two small children that I have to carry on some normality for and one is a darling baby who hardly sleeps and I was exhausted even before this, so now....

I can't get my head around how this will most likely end... My mum dying in the ITU with heart and respiratory failure, having been made 'comfortable'. I want to be there when it happens as hard as it will be. But I wish she could come home if that's going to happen. I think it'll be a matter of days. I feel constantly sick and and am visiting her daily as I want to see her. I wish she could stay. I know she's not a young person and everyone dies and it's normal for parents to die before their children...but this is so hard. Please can anyone offer any support or helpful advice?

Wolpertinger Sat 14-Jan-17 10:18:35

flowers

12 days on ITU is a long slog for all of you. She does sound as if she has a lot of medical problems which all combined will make it hard for her to get off the ventilator but that they have managed to wake her up this much is a good thing and at least you can talk together.

She probably doesn't know how ill she is and may not be completely lucid - it's unlikely she remembers anything much of why she's in hospital or the days she was heavily sedated so you can try saying she is too poorly to come home at the moment and see where the conversation goes. If she can't take it in, it probably won't go very far. She might also be talking about things as if she will do them -have a shower, get up and have a walk- when really you know she doesn't do them. This can often be part of being confused as well. Just see what she remembers and go with the flow.

Sorry, it's such a long hard road for you all.

lljkk Sat 14-Jan-17 10:21:22

One day at a time, I imagine is only way I could get thru this.
Try to focus on what I could do not what I can't.
Can you do anything to help with her boredom?
Don't think I would lie but wouldn't tell her any info she didn't ask for.
What are you telling your children? How can you help them?
Wish I could offer something more useful. Hang in there. flowers

Twozealotmorethan1 Sat 14-Jan-17 12:00:03

Thanks both. The uncertainty and ups and downs are agony. Writing is helping me a bit. In some ways I'm grateful to have the chance to tell her over again how much I love her.

Does anyone know of any organisations that offer emotional support to relatives in these circumstances?

Venusflytwat Sat 14-Jan-17 12:07:51

I don't have anything useful to say but I just wanted to let you know I've read your post. It must be so incredibly painful for you. I'm so sorry.

BlueberryGateaux Sat 14-Jan-17 12:12:18

So sorry flowers have you tried the hospital chaplain? You don't have to be a believer to get help from them.

QuimReaper Sat 14-Jan-17 12:55:03

I'm so sorry you're going through this.

I wouldn't tell her anything about her condition unless she asks, and if I'm honest I'd leave it to the doctors to explain. It sounds like she's in good spirits and the truth is likely to distress her. My approach would be to keep upbeat and agree how boring it is and let her talk about normality and coming home, even though it's all looking so unlikely. It's probably helping her to think about having a shower etc., and keeping her spirits up will be good for all of you.

Whatstheproblem2 Sat 14-Jan-17 13:13:57

There's a charity called ICUsteps founded and run by former patients of ICU and their families.

You have my sympathies and understanding as I'm going through something similar atm.

On the day my df was to be discharged from hospital (20th December), he crashed and almost died. He was in the ICU for 12 days in a coma. They tried several times to wake him, but to no avail as his heart rate would rocket. At the time, not a single doctor thought he would survive as he had sepsis/septicaemia, e-coli infection, ongoing heart issues, etc.

The 4th time they tried, on the 12th day, it worked and, although he's still very ill, he's now out of the ICU.

Due to his age and the severity of his problems (he had to have multiple surgeries and blood transfusions, etc), he's now suffering from delirium, which is hard to deal with as he's normally so 'with it'.

I think the hardest thing is the not knowing and the trying to act normal in front of the children, etc.

If you ever just want to chat (or someone to listen) you could always pm me.

I really hope that your mum improves; don't give up hope! flowers

Whatstheproblem2 Sat 14-Jan-17 13:23:34

My df has no idea where he is or what's going on and he sometimes doesn't recognise us, as well as forgetting that we've visited previously.

The advice we were given is to try and keep things as normal as possible. So you could bring in photos and favourite things (eg, cushion or blanket), music that she likes, read her the newspaper (if she likes that) and try to have people there that she knows as often as possible. Reassure her that your taking care of things if she asks (as I'm sure you're already doing) and let her talk about the future. I'd avoid telling her what the doctors have said as it won't help her and could make her give up.

You're doing a fab job and it's okay that it sometimes feels like too much/it's too hard.

Twozealotmorethan1 Mon 16-Jan-17 12:47:14

Thank you for your replies.

Whats so sorry for your situation too.

I'm really struggling. I'm trying to keep hope but it's looking less and less likely that Mum will come out of intensive care alive. I can't imagine the alternative as much as I want to prepare. If they say there's no more they can do and recommend withdrawing treatment it just feels to me like taking a sick animal to the vet to be euthanised....
I feel sick at the thought. So sad that this is how it may end for her and us.

user1480434796 Mon 16-Jan-17 15:40:37

So sorry to hear what you're going through. I went through a very similar situation with my Grandad ten years ago.

The most important advice I would give is to really look after yourself, take breaks from the bed (are they allowing you use of the relatives room?) drink and eat (I know it sounds impossible)

I second bringing in photos, although my Grandad never regained consciousness it was a comfort to know he was 'surrounded' by his loved ones. I also read to him, it passed the hours and helped me feel connected to him, perhaps some stories she has treasured or read with the Grandchildren may help?

With regard to withdrawing treatment I would like to help assure you (in my case + most) its a very peaceful process which is done gradually, the Doctor explained its not a case of withdrawing all at once as such, for us it actually took at least a day with no machines for the end to come. They remove machines etc one at a time and surprisingly it was actually very peaceful and natural when the time came, the nurses and doctors withdrawal and leave you with the relative until the time comes.

I also found it best when asking questions to write them down if possible, I know its a pain but I think it helps to take things in more. Also on a more practical note do ask about a parking permit, this is usually available for intensive care patient relatives and can also let you park alot closer (sometimes staff parking) which although it sounds a small thing can be a great help if your turning up at odd times eg in the middle of the night as we were.

I really do hope things turn out well for you but also want you to feel assured that if the worse does happen its withdrawing treatment is not as clinical as it may sound. I too thought of the animal being put to sleep scenario but it really doesn't feel like that at the time because of the diligence of the staff etc.

Any questions please do ask.

Take care x

Twozealotmorethan1 Sat 21-Jan-17 13:00:33

Sadly my mum died yesterday in the ITU. She was unable to survive once off the ventilator due to her underlying heart and lung issues. She was made comfortable and passed peacefully surrounded by her closest family. We are bereft and broken
Thanks for your helpful post user and sorry for your loss.

ImperialBlether Sat 21-Jan-17 13:02:08

I'm so sorry. I'm really glad she died peacefully and her family was with her. That'll bring you a lot of comfort in the months to come.

flowers

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