Spouses on Life Support

[Robynnlynn]

My husband has Triple Strep Pneumonia with Kidney Failure and a secondary pneumonia. He had dialysis for about a month and his kidneys are working again. He is still in ICU, on life support, out of the coma, that he was in for 18 days. He's been in the hospital since July 1, 2014 and I have no real support team. I've been told he will be in the hospital for the better part of a year or more.

[Kulta]

Hey, I'm so sorry to read what you are both going through. I may only listen from a patient's perspective - often experiences are very different between sides of the bed - but please find your 'support team' right here on this site, any time of the day/night.

I had dialysis and ventilated sedation and stayed in two ICUs consecutively. Thankfully, one had a follow-up team and I found this site. Please don't think you are bothering medical teams by asking for support as visitors, relatives are just as important. I'm not sure what other services are available inside your particular hospital but have you seen information posted about Patient Advice and Liaison Services (PALS) - it may be worth an ask? Please keep trying and talking. All the very best to you and your family at this challenging time x

[Robynnlynn in reply to Kulta]

Thank you for responding. I'm not real comfortable with the hospital he's in now, this is his third and we are waiting for a transfer to one closer to home. My family's not very supportive. They gave up on him at the beginning and said their good-byes because one doctor said it didn't look good. I always knew he'd pull through. I'll ask about PALS.

[Robynnlynn]

Thank you Friz.

[ellie2014]

Hi Robynnlynn, my mum has been in ICU in London for 7 weeks in induced coma with pneumonia, ARDS then a hospital infection, lung collapse and god knows what else! She was then transferred back to her local hospital and has been in a further 5 weeks and still unable to eat or drink . She caught another infection but is just about over it. She has severe muscle weakness and one doc said will take her 2 years to get bsck to normal. I have visited her everyday through all this . I also found some family members not wanting to talk about it which is very hard when you are going through such a life changing and difficult time and you need to talk about it each day . I have posted on this site everytime I felt stuck and no where to turn and have found the lovely people on here so supportive . It has totally helped me through. Also Patrik at intensive are.com has been a huge help with all the questions I have and keeping me sane. Please write to us when ever you need to . Ellie xxx

[Robynnlynn in reply to ellie2014]

Thank you, Ellie. My family doesn't want to talk about it either. If Rex has a bad day and I tell my mom. Her response is, "So he's gonna die, well crap happens." I never said he was going to die neither did the doctors. She's just a very negative person. He will make a full recovery, we all have our off days.

[ellie2014 in reply to Robynnlynn]

I think it's so remote And unreal for people that are not in that situation and environment. yes keep believing and having faith no matter what anyone says.

[CriticalCareNurse]

I can see you have already received some very good advice and supportive comments from others on this site. The support on intensive care units varies massively - so there isn't a standard system I can advise you seek out. However, I do think you should ask the staff what support there is for families - there may be a local support group as some units have these.

I would strongly advise you to keep a daily journal of event and your experiences and feelings. In our unit we give this advice as routine. We have had very positive feedback. Patients have massive gaps in their memory and sometimes find it distressing not knowing what happened - or trying figure out what was real and what was hallucination. Also when they have gone home and questions start to form in their minds - as they attempt make sense of it all - they can't ask the healthcare professionals who cared for them. So a daily events diary helps fill in the gaps. It also helps the patient understand what the relative (e.g. spouse) was going through - sitting at bedside everyday - seeing the ups and downs and wondering if their loved on will survive.

I hope things work out well for you.

Best wishes

Lee

[Robynnlynn]

Thank you, Lee. I'll start a journal today.