Life after ICU

[Pookyal]

My dad was rushed into hospital before Xmas with pneumonia and ended up on a ventilator in ICU. He was fully intubated and sedated for two weeks and for the last week and a bit has been on a trachy. I know it's a long road ahead and although he is weaning off the ventilator slowly, he is in a better place than 4 weeks ago! My mind is now (tentatively) turning to the future and when he gets out. Although he can't speak, he is already displaying psychological and emotional changes. I guess my question is for those that have been through this. What can we do to support him emotionally? Is there anything we can look into to help him when he's home? Was counselling offered (by the NHS)?

[Sepsur]

It may not be permanent - some changes become less pronounced over time and many you may not notice - recovery is hard and long winded but what is the alternative? I hope your father progresses well.

We run two drop-in on line a week - these offer emotional & practical support for starters.

[FamilyHistorian]

I think the first thing you need to do is take care of yourself. There is along road ahead.. as Sepsur said talk to others who have experienced this journey Critical Care Support Network run a weekly drop in on z zoom on a Tuesday night at 8 pm especially for relatives. I had a tracky and once out of my coma I had a voice box which I was allowed to use for short periods of time. Recoverers both mentally and physically was / is a long journey and as to support from the nhs it is a post code lottery

[Copse77]

delerium can cause people to behave differently when someone is waking up from an induced coma Sepsur has put some links to ICU Delerium that are worth reading. It can take weeks for people to work through this as when someone has been critically Ill their organs like kidneys and lungs take time to get back functioning. Everyone is an individual and differ in their response and recovery so don’t be disheartened. Patients lose muscle mass every day they are lay in bed so there is a lot of recovery for patients to get through. I know as my brother spent 2 months in ICU and this was pre CoVId. I was with him every day seeing first hand that physio sitting in a chair for a short time is physically exhausting for him. I hope your father continues to make good progress.

[Pookyal in reply to Copse77]

Thanks. Seeing this myself too. He is still in ICU (for now), and the physio moved him to a chair today for the first time. He was totally exhausted. Everytime they do something with him, his O2 level plummets! However, the staff seem really pleased with his progress so I have to trust in that I guess.

[Lifeafterthat]

after coming out of my coma emotionally I was completely different to pre coma, but it slowly got better with time and support from my loved ones, being intubated and everything that comes with it can be absolutely mind blowing, I remember waking very abruptly the first time and I ended up managing to rip out my NG and catheter instantly and luckily didn’t manage my tubes because they were tied on, in time hopefully the emotional impact will get better and become more them again, with the care you have I’m sure it’ll get easier as long as you stick together ❤️ If you need to chat feel free to send me a message

[Lux95]

I hope your dad has improved since the last posts here. I had a similar experience to his - pneumonia, 2 weeks on a ventilator, then tracheotomy, etc. Just lifting my arm was a challenge at first, then physical therapy came daily to get me to just stand for a few seconds, then take a step or two, etc. O2 levels would plummet and several times I thought I would pass out. I dreaded those days , but slowly, day by day, my strength and lung capacity improved.

At least for me, that alone created a sense of fear of physical exertion that has taken many months to work through, and it still lingers on a year later. But life gets better with determination and patience - it just takes time. I still have a residual cough, and my lungs are scarred to the point a radiologist thought I still had double pneumonia weeks after my release.

It takes time to regain the strength lost during those weeks/months. It's been a year, and physically, I may be 95% recovered, but nowhere near the shape I was in before my illness - physically, psychologically or emotionally.

When the time comes, encourage him to be diligent with physical therapy, doing something everyday to work on regaining strength, no matter how small. And above all, be patient but don't give up. Also, if possible, find a way to give him time to heal without feeling the need to jump back into work. I jumped into a stressful, demanding new job 4 months after going into the ICU, and it didn't work. I now know that was a mistake. There is simply too much for an ICU survivor to deal with to expect life to return to normal in less than a year, and sometimes longer. Despite all of the challenges, this is a time that can bring families much closer together, and that may be the most valuable part of recovery. I could not have made it without the support of my wife and kids.

[Pookyal in reply to Lux95]

Thank you. So helpful to hear your experience. Since my posts, dad has been discharged (as of yesterday!). We are all happy he is home but brings with it a while host of other anxieties! Your comments on strength and the effect on oxygen and bp definitely ring true! But he has built up strength so well over past couple of weeks and hopefully can do that now in comfort of his own home.