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No change after 5 months

Hey all

Been here b4 hope everyone is getting on better I really do.. hubby came out 4 months ago and although physically he is getting there (maybe not AS strong as b4 but pretty much no concerns) mentally he is worse and worse.

I assumed after my last follow up that this is to be expected.. but after an episode the other day I called the ICU they said no he needs to be referred to mental health.

He basically only seems OK when really staring into a programme on the TV. You can see him fidget and physically shake when you bring up a conversation or tell him we need to attend an appointment.

He says he still feels numb even as numb as he did when he first came out of hospital.

He can feel anger, sadness, the odd note of a smile when our boy says something funny. But these are in very small droplets. He finds it hard to go further than a 1 out of 10 on the anger /sadness/happiness scale if that makes sense?

Tried anti depressants etc but my main question I guess (and I still remember responses from the last time I messaged asking if he would ever get the old him back) is have anyone of you known after a year or 5 months however long that the person in question was mentally worse or the same as discharge? He was only in 10 days not months and I have been expecting a hard recovery but it is killing me to watch him. It's like he's a vegetable and not even a shadow of his former self and the thing is he is aware of it all. Will talk and say stuff that makes me so sad for him

Please do let me know and good luck to all xxx

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I am 3 years out of coma (2 weeks in coma) and I am still in recovery. Your expectations are too high... I’m sorry it’s a really harsh message but you need to go at his pace. If you push him, it is unlikely to end well. Don’t let him wallow of course, but as a survivor, I can only tell you that being in a coma for me, was a living hell and at times I wish I had not experienced this. Yes I do know what that implies, but it’s not just laying there asleep, it’s terrifying, it’s scary, you are fighting for your life against the very people trying to help you, your body is trying to help you but it is killing you. We are in our own personal war zone and the nightmares will haunt me forever.

He is perfectly normal in his recovery cycle, it varies for everyone but for me it went physical recovery, mental recovery, emotional recovery, brain recovery in that order.

It is wholly normal to need counselling after this, and or medication. Post ICU delirium, PTSD are common, really common.

I know this sucks, but imagine what he is going through. I spent 3 months out of hospital thinking I was dead, having spent what appeared to me to be 80 years trapped in a nightmare. I didn’t know what was real and what wasn’t. Everything was futile and didn’t matter as I was dead. I’m 3 years older now and feel I’m still looking at life from the other side of a Perspex lens, watching it pass me by. All my husband can do is look on, support me, let me rest at the weekends, hold me when I cry, give me space when I’m so angry I worry I’m going to hit him/throw something at him, it’s so hard being the spouse I know.

I don’t have kids, which is a blessing as this is unfortunately a massive recovery curve. Get along to Icu steps support group if you can, that’s the only thing that helped manage my expectations and my family’s.

Good luck, it’s not easy, but he fought to get back, give him time

D xx

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Hiya Thanks for reply

If I could have had expectations I would! I have none apart from what seemed to be guidelines from here and the specialist who have said things about recovery times. I knew a week ago that I could throw those out the window. I think I'm more worried because he is aware of what's going on I worry that he will think it's forever. I'm always looking to reassure him and stuff but on the other side of the spectrum I wonder on certain days am I making it harder for him we have 2 kids and I now have 2 jobs so as you can imagine I can only be Mary poppins 99 percent of the time. I have bad moments, bad days sometimes it's very tricky

My mum suffered with the worse metal health problems I've ever experienced and as I can start to see similarities I know I will be able to support him but I guess I wanted to be able to tell him about others and show him it's not just him. On the other hand I really am scared to do that now. Don't want to tell him it could be years and years don't think he'd cope. Been to all the groups he get anxious leaving the house and even more anxious talking about it xx thanks so much I've got a little perspective now thanks xxxxxxxxx

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So most importantly for you and kiddies and husband, you MUST look after yourself. Remember in flights they say put your mask on first? This is the same.

My husband has anti depressants and EMDR, about 5 months off work to nurse me, and he tried and failed to go back to work in that time.

Speak to the CAB and get any and all financial help available. If you have Bupa, they pay for when you use nhs per night, if you have family with money, lean on them.

You will get through this. Go to support groups on your own if needed. Are you in UK?

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Hiya

Yes UK have looked into benefits but I really needed to get another job while that was happening and obviously that's all very complicated as to what's best to do job vs benefits etc. I am juggling ok I haven't needed anti depressant as I have an ability to deal maybe after mums problems that I grew up with. I feel more guilt than anything even getting out with a friend to get away for a few hours I feel guilty. He is physically good it's all his mental health sometimes I wish it was the other way around just don't know how to make him feel any better I guess it's just going to be time x

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Hi there,

The supposed norm is 10-14 days to recover from every day you are in ICU. I know that it took me at least 18months to physically get back to normal. I didn’t suffer much emotional withdrawal. My family, on the other hand, fell apart & needed professional help to overcome what they had been through. I have no idea what the symptoms of PTSD look like, I know it is a common side effect of critical care. I believe that my family suffered more 18 months after my discharge. CBT did help. There is also EDMR.

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Thank you. He's physically really good I'm proud of him. It's all mental. That's really tricky to deal with x

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The other thing is this 10 to 14 days thing seems like rubbish , so many people have said that and get consultant said a year (he was in coma 10 days) looks to me like a year is not gonna be realistic. I do wonder all the time whether a brain scan should happen after his brain was starved of so much oxygen when I found him... I don't know I think I will chat to the mental health people when they get in touch and maybe push a few tests will look into everything xx

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10-14 is the measure for his entire time in hospital. Cognitive dysfunction affects loads of people too.

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It's incredible how badly it effects everyone I really wasn't prepared for it at all had no idea and hadn't known anyone that had been through it

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I too thought that my husband would return back to his former self within a few months. He was in a coma for 14 days and in hospital/rehab for another 2.5 months. Physically he is absolutely fine but although his habits, speech and mannerisms are the same, he’s not. We’ve taken him off of the anti-depression and anti-seizure medication which seem to have improved his energy levels and engagement. He will still watch tv endlessly, however he will wash dishes or want to go out without me initiating. This is a long and hard road and I’m not sure that the man I married will ever come back fully but we’ve been blessed that they survived and weren’t left in a vegetative state. I know how incredibly lonely, frustrated and isolated you feel but just try to remind yourself that things have gotten better and God willing, they will continue to improve.

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Thanks you xx how long had it been now since he was in the coma ? X

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He fell into the coma on June 1, 2019 at age 49 from a stroke/ brain hemorrhage, so we’re going on nearly 10 months. He was non verbal and immobile for the first 1.5 months after waking up and then one day he started to turn a corner. To the average observer he’d present as fine but I notice the subtle changes. It’s hard to articulate to others but there’s definitely a personality change. I met a young woman who also suffered a stroke but no coma who seems to have made a full recovery. She told me that she still struggles with short term memory, as does my husband but she finds ways to cope such as notes and lists. I just miss him if that makes sense but I’m hopeful that he’ll continue to improve.

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Oh I'm sorry to hear that. Yes I understand to the average person especially someone who doesn't know my husband thy would think he's fine if a bit quiet. To friends he's not quite himself but ok. To me a completely different man. I have my fingers crossed for everyone and good luck and thanks for your help

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The 14 days to each day recovery estimate refers to physical recovery I was told,and applies to time spent in intensive care. No one can generalise about mental recovery as it depends on so many things ,but it is really early days, and your husband might be reassured to know this ,because it takes the pressure off him and gives him time to recover at his own pace .Talking about my feelings helped me a lot ,its almost a year and I still question my family about events during my illness, it's taking me a long time to slot it all into place,I still have nightmares and hallucinations but I know it's a side effect of my illness so I accept these feelings as they won't last forever. Everything passes, things will improve for you both, encourage him to talk about his feelings and just hang on in there .Wishing you both all the best .

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Thanks xx it's a tough one for sure I do encourage him to talk but he said after a minute he's done he don't want to it makes him anxious you can see him disconnecting or fidgeting if it's someone other than me talking to him

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I think men find discussing their mental health and feelings hard as they sometimes consider it "unmanly " or a sign of weakness. What he has been through is huge, I never ,until recently, understood just how much my illness has affected me .Good wishes for the future x

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He's only able to open up if I encourage it..better than nothing though so I encourage it without too much pushing xxx thanks so much

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My heart goes out to you. It sounds like your husband does need some mental health support but I wonder if something like counselling would be beneficial for you too? I was on a ventilator, in a medically induced coma for only 6 days but the effects have been much longer lasting. In some ways, the physical recovery was easier to work with but the mental recovery was much harder. It was invisible and people only asked how my body was when it was my mind that was struggling the most. I was either angry and agitated or very depressed in a zombie-like stare. I had zero enjoyment in life. Well, that’s was what it looked like, to others but inside; I was terrified of what had happened, worrying if it would happened again, shocked, having nightmares and flashbacks. I finally got some mental health help and was diagnosed with PTSD. I started on sertraline and had trauma focused Cognitive Behavioural Therapy. I am better than I was in terms of the anger and numbness but I struggle a lot with flashbacks, nightmares and fear of anything medical. I have to pull over in the car if I see an ambulance because the noise and lights reminds me of that terrible time, even though, I am not sure how much I was taking in because I was so ill. It’ll be 2 years in June and every month, I see little improvements. Sometimes, I take a few steps back but on the whole, I am moving forward.

As most of us here know, being in ITU means you were at risk of dying, it’s terrifying for everyone involved. Your husband must be struggling to process it all. I will say, however, that you may also be at risk of PTSD and you mustn’t be forgotten about. You have to look after yourself and your children too. I admit, I was very selfish in the initial few weeks, believing it happened to me so I was the one who felt the most scared. Now, I am able to see how it was much worse for my loved ones, who sat with me and on 2 occasions, were told I was not expected to survive. I was sedated for that and have no memory.

It’s not just mental health that can be affected. I was told your cognition, basically your memory and other processing can be affected in the long term. I would say I’ve massively improved in this respect but I have been left with some very mild cognitive deficits which are probably only noticeable to those who know me really well.

It does get easier, even if it doesn’t feel like it right now. Xx

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You got it spot on. Yes I know I may have ptsd I've kind of got my head round that.. funny what a family of loud and distracting boys and your job can do to.dotract ya... if you know what I mean xx but him yeah same as. Really likes me to just control appointments especially medical... really is mental rather than physical. Good to hear from others because I don't think anyone is ever prepared for this . So sorry you also are going through what you have. I wish the best for you and you family. Your pretty much spot on though . But regardless of diagnosis you kind of have to just live with it. Fingers crossed xxx thank.you xx

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