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?
Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.
Life-limiting illness
My mum is on a ventilator in ITU and it's not looking good.....
Twozealotmorethan1 · 14/01/2017 10:09
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.
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.
So sorry have you tried the hospital chaplain? You don't have to be a believer to get help from them.
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!
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.
To comment on this thread you need to create a Mumsnet account.