Wife in turmoil

[Buggly]

Hi. My husband had a burst aneurism on 13th May, 2018. He is now out of danger and has been moved to the local hospital Since moving his communication skills seem to have deteriorated and has become vacant and doesn't seem to acknowledge any questions being asked of him. It's so difficult trying to get anything out of the medical team as their standard strap line is everybody is different. I do appreciate this, but as a bystander with no experience of the recovery of somebody who has had an aneurysm, is this deterioration normal? On Saturday he was cheerful and picking up on things, but the last two days he has been like a shell. It's heartbreaking and nobody seems to be able to answer my questions. I just wondered if there was any one on this forum who has been through this with their partner and seen the stages of recover? Thank you

[treetate]

Hey Buggly and so sorry to hear about your husband. My husband suffered a burst aneursym in January this year and it has been a complete roller coaster!! When he was moved to our local hospital, once out of critical care, he actually seemed to do really well. The moment he was moved to a rehabilitation centre (4 months later) he also deterioated and has continued to do so since that. We are now 6 months in and he is walking, talking and doing things himself but has no connection to the real world or who we are - hopefully time will tell. Always here if you need to talk x

[Buggly in reply to treetate]

Thank you for replying, it is so hard when you have nothing to measure against. Whilst my family are supportive, you still feel so alone. My husband does know who I am, but communication is very poor. I'm only two months in, but he can't walk, he also shakes a lot,both arms and legs. X

[treetate in reply to Buggly]

Hi Buggly, It is such a difficult time for you and I found the lack of communication the worst thing to deal with. I ended up with the attitude of let them do their jobs and look after him. I really hope you start to see some improvement - I did speak to Headway and they were very supportive as well as family/friends - dont be afraid to ask for help! x

[sealiphone]

I suspect this is fairly common and it could be you're noticing more now as you're expecting an improvement.

My last 2 weeks in hospital and I was chatting, got myself out for my daughter 7th birthday and didn't talk to anyone at the family gathering. People told my wife I seemed spaced out, that probably lasted for around 8 months and around the 12 month mark I was something like my old self.

[Buggly in reply to sealiphone]

Hi. Can you tell me how long you were in hospital please. My husband has been in there two months, he isn't walking yet. Did you have coils fitted? I guess you are quite young with a seven year old, my husband is 53. Thank you.

[Buggly in reply to Buggly]

Sorry one more question, do you recall if you used to shake, both his arms tremor and sometimes his leg too.

[sealiphone in reply to Buggly]

I was in for 9 weeks but I made it clear I was going to discharge myself to get to her birthday if they didn't agree. My hemorrhage was due to a AVM, so my treatment occurred 15 months later. For my second bleed it was 13 weeks but I think this was mainly because they thought a third bleed was likely.

First bleed I was 45 at the time.

No shaking but I'm told I wasn't making much sense even at the point of discharge following the first bleed, it's a blur really.

Thinking about it again, once I was out I was bombarded with options, whilst in hospital it was all routine, much more challenging to have to navigate the world than choose if you want porridge or Cornflakes for breakfast.

One thing I do remember leaving the hospital and we saw the midwife from 7 years ago and I couldn't make her features into a face it was like a distorted mirror.

[AVENA]

Hi - my husband had a Ruptured Brain aneurysm on the 21 June 2017. Your post is like looking back on my own life. Noone can prepare you for this. We had 4 weeks in Intensive care, 2 weeks on a Stroke Ward and 8 months in a Rehabilitation Hospital 70 miles away from home. My husband was given a 2% chance of survival. There were delusions and terribly frightening situations. I found out about what was going on purely with research. He is now home, very happy and physically able to do most things. Memory has improved hugely and in the last three weeks, we have progressed even more. There are good days where I cannot believe this ever happened. Bad days I now identify that it is lack of rest, no sleep or overdone it, I can now help to avoid these situations. I would never believed a year ago when he was fighting for his life that I would be taking him on a fishing trip with friends this weekend. Keep focused, read all that you can. Get hold of the book Where is the Mango Princess amazon.co.uk/Where-Mango-Pr... and watch every talk you can find on YouTube. I did that, it prepared me for the long road of recovery and was hugely helpful. He will get better, it is a journey and it will take a very long time, we are just starting another phase, but it is a hugely positive one. Never give up and keep yourself well. I am rubbish at that but have had to learn that too. Be prepared to be on your own, friends disappear, value the ones that you are left with, they are the true ones and the important ones.

[treetate in reply to AVENA]

Hi Avena,

I read your post and it reminded me so much of my current situation and its fantastic to read such a remarkable recovery!! My husband had a ruptured aneursym in January this year and after 6 long months is now in a specialised rehab centre. He is sectioned under the mental health act due to his aggressive behaviour and is still very confused and has no short term memory. He is very angry with me and really doesnt want me there but I continue to go weekly (the unit is around 65 miles away and I work full time) in the hope that this will change. Sorry I just had to comment as I just hope I have the same sort of outcome where I get to see a glimpse of Kev again.

Teresa x

ps I have just order the Mango Princess

[Buggly in reply to treetate]

Hi. I have just down loaded it on kindle. I'm hoping Paul will be offered rehab now. I hope things improve for you x

[AVENA in reply to treetate]

Hi Treetate we are a year and one month in and we are just really turning a major corner. At the six-month mark, I was where you are - it was dreadful, absolutely dreadful, but to give you some hope, yesterday we spent the afternoon fishing on the river and had a barbeque with friends. An impossible dream this time last year. Keep going, it will change but they need time and dig deep & KEEP DIGGING DEEP for that patience thing. I still have to - I can walk in a room and be the light of the world or not that hahahahaha- don't take it personally, I try not to, sometimes that hurt pang gets me. but it is the injury not them. have just taken up swimming more regularly, brilliant - exercise for your own wellbeing a must. but only when you are through this - I could not have contemplated it when doing what you are doing.

[treetate in reply to AVENA]

Thank you so much for your response. I am so glad that you are turning a corner, it is just horrific isnt it?? Working full time and with 2 dogs to look after, I have very little time to dwell on things and just keep hoping and praying everyday. I hope your husband continues to improve and you can get some of your old life back xx

[AVENA in reply to treetate]

I have two dogs too and I run my own business with two staff so know exactly where you are - You are in the incredibly busy phase, looking for answers and probably starting to wonder where the friends and family are. As I say knowledge is a huge help, the book I mentioned was such a gift, made me realise it wasn't just me. I also managed to get to a couple of Headway talks for people like us, they were helpful too. Muster up all the background information you can - I had to find out a lot for myself and felt quite in the dark at times, but we got there as will you.

[treetate in reply to AVENA]

I have ordered the book and can’t wait for it to arrive! I spend hours on the internet doing research - I think I know more about brain injuries than the doctors do now ha ha. but of course no one can tell us the outcome or where we will be in a years time and it’s a case of just waiting. I love reading stories of recovery and long may that continue for you x

[AVENA in reply to treetate]

Onwards and upwards! There see,I thought things were great and today I have been in tears to the Headway Nurse on the phone due to horrible negativity being thrown at me.

Apparently, I am a horrible person today? now found hubbie sound asleep absolutely knackered from all the excitement of fishing and this heat made me bite back. Not always plain sailing!!!!!!!!!!!!!!!!!!!!!!!!!!!

[treetate in reply to AVENA]

Oh bless you!! Good days and bad days hey?? Certainly not plain sailing.....

[AVENA]

Oh forgot to say, my husband was just 49 when it happened. Yes agree the 12-month mark saw a huge & massive positive change, legs did shake, still do a little bit in the night but getting much better now and Titanium Clip! Sleeping has been very difficult but showing a slight improvement now slowly and feels the cold dreadfully. I think he runs about 6 degrees cooler than me.

[Buggly in reply to AVENA]

Thank you so much for taking the time to respond, for your kind words and your advice. The doctor said this week that he may not get into rehabilitation, but after I continued to complain they did another scan this week and a lumber puncture and he did improve. It's a living nightmare. I have to fight for any information. 10 weeks and he is still in a nappy! I just pray he gets accepted for the rehabilitation centre now. Your post has given me hope, my husband is only 53 and loves fishing too. It's just so, so sad.

[AVENA in reply to Buggly]

Absolutely push for rehabilitation - do not fear the nappy thing, it passes - there are phases that you just have to roll with. You are looking at months and years not days and weeks, time will sort it but dig in it is going to take time.

[sealiphone]

Do you know what medication he's receiving, morphine is common and the side effects can be disorientating.