New - Reassurance Needed

[ARose81]

My wife (37) had SAH about 6 months ago. It was a severe bleed from large aneurysm. She collapsed in a car-park, comatosed by the time Ambulance crew arrived and intubated/ventilated on arrival in A&E. I had spoken to her 15mins before she collapsed and everything was fine. I didn’t find out for another hour as I had left my phone in the car. She was ventilated in A&E, right beneath my feet, in the hospital that I work and I had no idea. 

 

We have 4 children. Two boys - 5 and 3yrs and twins, now 8 months. The twins were 3 months when my wife collapsed. She had just loaded them into the buggy before she had the bleed. The police took them to a travel agents as they couldn’t find anyone to collect them. The boys were picked up by a school friends Mum. The whole thing, everything, was just completely and utterly heartbreakingly horrendous. I wouldn’t wish that sort of day on anybody. It was torture. 

 

They transferred her to Neuro-ICU and basically informed me they would support as long as there were signs of improvement, they couldn’t say how things would pan out. Surgery wasn’t an option given the site of the aneurysm and they would only coil if things got better. I cried myself asleep and cried myself awake for 10 nights in a row. In-between that I sat by my wife’s side and prayed to everything and anything. I then drove home to have some dinner, give the kids a bath and put them to bed. A combination or her family and mine filled in for childcare. The twins had an abrupt start to bottle feeding caringly administered by my parents. 

 

She did improve (opened eyes to pain), so they coiled the aneurysm at 24hrs. That really was awesome. Then came the vasospasm - the amount of blood made this almost inevitable. All hopes raised with subtle improvements were dashed by Day 5 with a sudden drop in conscious state. With all the drugs pumping at quadruple strength to push her heart and circulation to the brain to the max, her heart started to fail. She had aspirated (inhaled) vomit when she collapsed, so one lung was already out of business. Repeat brain scans showed widespread focal ischaemia (brain with poor blood supply) but no infarct (dead/dying brain tissue). Nothing was going right, absolutely nothing.

 

We hadn’t been getting on before she collapsed. Standard stuff for parents with 4 children I’d imagine. A rather stressful life and little time for each other. We argued lots. She sent me an email a week or so before, wanting to know if anything was wrong, pleading with me to talk to her so we could find a solution. I ignored it. As I was sitting in intensive care I realised what I had done. The regret was unbearable. I just wanted a moment of consciousness, just a moment, so I could talk and she could hear and I could say sorry. So I could reassure her, tell her I love you. I then thought about how that would be just for me and how selfish I was for thinking that way. 

 

Her brother sent me a message on Day 10 - “Miracles can happen”. I pulled myself together, told the kids Mummy was going to get better and come home and went back to her. Over the previous few days I had received literally hundreds of messages sending love and prayers. There was a lot of love being sent her way, so I decided I’d have to channel all to her. I sat resting my head on her right hand and thought of anyone and everyone that she knew - the kids, the family, her friends, acquaintances and everyone that had been in touch.

 

I imagined them one by one, said their names to myself and whilst doing so pushed as much positive energy my spirit could muster towards her. That might sound ridiculous (I am a doctor and a scientist so it does to me) but it was strangely comforting. Here’s the thing: Miracles can happen, they really can! If you are reading this in a similar position to me - Please believe this. It’s an extraordinary paradox - most of the time we are completely unaware of our human bodies treacherously fragile existence, but at the same time we are blessed with an innate biological toughness and resilience that makes the extraordinary and miraculous possible.

 

From that day onwards my wife got better and better and better. One day later she was opening her eyes spontaneously, the next moving one side, the next moving all limbs on command. By day 14 she was off the ventilator and moved to HDU. By day 18 she was moved to a standard ward, talking but dysphasic (jumbled up words).

 

By day 21 she was walking to her toilet, on a standard diet and talking normally. By day 25 I took all the kids to see her. That was a special moment. She hadn’t remembered we had had twins, so at least we found something to laugh about. In the space of 2 weeks it seemed like all my prayers had been answered. I was so thankful to everyone, her carers, family, friends, to her especially.

 

I don’t think I’ll ever be the same person. My family and friends have been great but outside that circle the support has been non-existent. I’ve gone from being a husband, to being a carer and now trying to get back to being a husband again - this isn’t good for relationships or state of mind. Life doesn’t get easier. Home is difficult and so complicated and noisy. It’s hectic all the time. As a result she is always tired. Struggling to manage fatigue in a household with 4 young children, it’s not easy.

 

She feels like she has lost so much - her identity, her purpose in life. She is depressed and lonely. I am lonely. She doesn’t feel like she can cope and after an extended period off work I’ve got to get back to work. She needs support which I can’t always give her. She needs reassurance from somebody who has been through this and come out the other side. It’s hard for me so I can’t imagine how hard everything must be for her. 

 

Despite this I do feel that there are positive things we can take away.  I am ashamed to say its only now that I have a thorough appreciation of how difficult it is looking after 4 children. We have had nearly 6 months together now, we would never have had that time otherwise. It’s been difficult, but I think it’s made us closer. I’ve had time looking after the babies that I didn’t get with the other two, it’s been special.

 

They said it would be a rollercoaster at the start. It was and it still is. I know it’s all relatively early days. I know how lucky we are to have such an amazingly strong women for a wife/mother , she really is amazing. I’ve always had hope but after all the progress and everything she has grasped back from the brink it feels like that’s the one thing my wife is still searching for and I’m not sure there is anything I can do to help. 

 

Thanks for reading.

[ClareM]

Hi welcome to Behind the Grey, glad you found time to find us in amid your busy chaotic life ?

 

Sounds like you have had a very rough time in the last few months you seem to have coped with it amazingly. Looking after four children without a SAH would be hard enough so it must have been a real struggle. You say you have support from your family but no other external support. Maybe this is what you need to look into for your wife over the next few months while she recovers.

 

Have you considered contacting Headway?  They are a brain injury charity who may be able to give you some help or advice on who could give you some support.  You also say your wife wants reassurance, get her to come on this website and read all the stories,  that may help her realise she is not alone. 

 

I hope you manage to return to work and I hope that your wife manages to recover. Try to make sure she gets as much rest as possible with four children though I can imagine that would be very hard. Take all the support that is offered to you, good luck keep us posted.

 

Clare xx

 

[ARose81]

Thanks Clare. I have had phone contact a few times with Headway, just to get things off my mind and for advice, they have been great. My wife hasn’t really opened up to anybody apart from the rare outburst towards me.. I feel like she really needs more human emotional support. We just moved to a new area so family and friends are only fleeting visits, never enough time. I did suggest this blog to her and she has signed up but she hasn’t engaged with it yet - maybe that will just take time.

 

Regarding support for her when I return to work, I’ve looked into literally every avenue of support that has been suggested. I’ve written letters to council, even the local MP, charities etc..literally everything. Unfortunately there just isn’t anything anybody can offer. She has no clear physical disability and there is no concern regarding the children’s care so social work aren’t interested/can’t provide anything.

 

People don’t understand how hard things are on a daily basis. Getting rest isn’t hard it’s impossible. You can’t detach a mother from her children. She gets up and goes through the motions. I don’t think she gets much enjoyment from things. She went to the GP about mood and was given a link to a self-help website, I was so annoyed - as if she has the time to dedicate to that. I frequently take out all 4 children - to the park/supermarket etc just to give her time and space to rest or speak to friends but most of the time she ignores when a friend gets in touch and she never opens up. 

 

Things will be easier with our boy back at school. We have sorted a funded preschool place out for our 3yr old with additional hours to make two of those days full days. I can’t afford any more than 2 days in nursery for the twins at the moment..maybe that will just have to change somehow. 

 

Hardest thing for me at the moment is the pressure I put myself under to make everything alright. I am constantly thinking about what I could do or suggest that might make her feel better, sometimes it’s actually counterproductive. I don’t feel like I can comfort her or make her happy anymore, she has no opinions or preferences and expresses little regarding what she likes or enjoys or desires. It’s really hard not to get frustrated with things but I guess that’s the last thing I should be doing. 

 

Thanks again. 

[Tina]

Hi a very warm welcome to BTG

 

Wow, you really have been and are going through it and as Clare has said,  both coping amazingly. 

It is such a struggle when the whole world as you know it turns upside down and inside out. 

Very hard for you if your family and friends are not close to support you.

 

Did your GP mention counselling to your wife for when she feel up to it, there is normally a waiting list, but i found it very helpful. A self help link not at all helpful at this time, i agree ! Unfortunatley most GP's dont know how to help survivors of SAH. My GP admitted he had never come across one that survived before me and i have been a learning curve for him. 

 

Headway normally have face to face support groups. Maybe something you could look into, also ask your local hospital if they have any support groups, some do. 

 

When your wife feels up to it, she will find a wealth of helpful information, reasurance and caring friendly support here, as we hope you will too. BTG was a life saver for me,  i found others that understood all i was struggling with.  I realised i was not alone.  Good days, bad days, we are here for you.

 

You have been an amazingly strong caring supportive loving husband, dont be so hard on yourself. I shut down to close family and friends in the early stages, i guess it was my way of trying to cope with things, plus your brain goes on shut down when you are tired. Please dont feel you cant comfort or make her happy any more, it is such very early days. Keep being the wonderful caring loving thoughtful husband you are.

 

Things will get better   just takes time and patience. Its very normal to feel so frustrated with all that you are going through.  

We look forward to hearing more from you.

Take good care of yourselves.

 

Tina xx

 

 

[Winb143]

Hello ARose

Glad wife is getting better but there will be times when she needs help and rest.

 

I do hope wife continues to get better as it took me an age as Hydrocephalus stopped me, so a year later I had it done and hubby was scared for me,  and after my shunt was fitted I was my old old self in more ways than one !! 

 

Mean while my daughter found this site and it helped me to know there is a life after SAH 4.  I saw people who could joke about it so whenever down it is good to give vent to feelings by coming on here. I still have short term memory loss and walking too far hurts my back ...So Wife is a strong person, wish her all the best.  We need all the help we can get xx

 

Good luck to You, Wife and Family and welcome to BTG xx

 

 

[Swishy]

Welcome to Behind the Gray..

 

You have been through so much, I can't imagine.  Sounds like you and your wife are made of some tough stuff...it is wonderful you are having special time with your children...children can be a source of joy especially when life is hard...

This site has been helpful for me, I hope it is helpful for you and your wife.  I lurked for months before I reached out...it was just what I needed.  Sometimes it takes time to be ready. 

 

My best wishes and prayers to you, your wife and your children.  

 

[subzero]

 

Hello, and also a very warm welcome to BTG.

 

While we do not give medical advice, you and your wife will find so much helpful information, support and reassurance from the wealth of personal experiences posted by our members (both carers and survivors). I do hope your wife will eventually take time to read some of the experiences in the various forums.

 

Firstly, as you say, the past six months have been an incredible journey for everyone involved. The emotional highs and lows … the feelings of helplessness, the despair of trying to work out a plan for the future when your `normal` has been so cruelly taken away from you. You have done so well so far by being there for her and your children. It is  good that your families have helped you through these early weeks.

 

But now six months on … it is back to you and your family unit … and you are the one trying to piece a seemingly impossible  plan for your future lives together. One thing is certain …. your wife needs help. She cannot recover well while trying to keep a home with four young children. Her body and brain need time to heal  Being home with so many responsibilities is a frightening experience for her.

 

The damage caused to her brain means her normal thinking and decision making pathways are confused and trying to discover new ways of communicating together. Yet to others she may look ok !! As far as trying to mend her `relationship` with you is concerned …. this will probably be farthest from her mind.  She is confused and needs whatever time it takes to try and heal. When she looks exhausted and fatigued ……   she really is exhausted and fatigued !!

 

You have done well  being there for her,  by taking leave from work … but you too need to get back to work for so many different reasons. Is there any way you can find a `live-in` nanny cum house keeper for a year to give yourselves a chance.

Please don`t give up …. we want to help and support you from afar.  You are all on a long journey and you have survived the initial traumas.

 

Please ask your wife to look in to the site … it will give her that encouragement that she needs from knowing that others have also survived and their different stories will help.

 

 

Take care

 

 

Subs

 

 

[ClareM]

Just out of interest have you asked for your wife to have a neuro psychological assessment? This would find out if she has any cognitive deficits which may mean she is entitled to help with the children. With a try , ask your gp. Or neuro unit for a referral. 

 

Also you say you have recently moved to a new area would family not be prepared to come and stay for a short while just to help? 

 

 I just think that without some support your wife is going to find the road to recovery very hard ?

 

clare xx

[ARose81]

Thanks for the responses everybody.

 

Everything you have said makes sense, it’s all really helpful. She did say in conversation today that she would take a look at BTG, so maybe she is nearly ready to talk about things and find out more, I think it would really help. The neuropsychology assessments were left until after 6 months so they should be coming up sometime soon. However, her recovery was almost so quick that the brain injury team caring for her were rapidly relatively short of things to do on their visits.

 

Unfortunately rather than reassuring her the appointments simply frustrated her, not helped by the distraction of crying babies, and as she got better she engaged with them less and less. I don’t know how common this is but her experience from their input wasn’t particularly positive which is a shame as it was one of the few forms of support we were getting. As a result I am having to work very hard to convince her that going through with the assessments would be a good thing.

 

That being said, cognitively she has recovered really very well, I would be really very surprised if there was any remarkable problems. Maybe looking after all these children has also helped her in some ways ?.

 

Thanks again. I really appreciate the advice and will keep in touch if anything crops up. 

[Colleen]

Good evening and welcome to this lovely site,

 

First I want to commend you for your strong spirit and being so supportive. I always tell people that in some ways, the early days of the SAH was harder on my husband than on me.

 

Despite a pretty serious bleed and a craniotomy two months later to fix a second aneurysm, I recovered pretty quickly. I do not have children, but I was back to work full time after three months. That said, I never have had the same level of energy and stamina that I had before the bleed.  ten years later and I'm having one of those weeks where I've "hit the wall" and the least discord makes my brain hurt. And even though I've been told the chance of a bleed happening again is slim to none, I still  have to deal with a certain amount of fear when my head hurts..

 

You mention that you' d be surprized if your wife had any "remarkable" cognitive changes. That sentiment is pretty common when one isn't bearing physical scars and is operating at a high functional level. A common directive from medical staff is to          "go live your life" because after all, we are just so blessed to be here and able to walk and talk at the same time..  But as my current neurologist tells me, no one gets away free.  

 

Where there is brain bleeding there is brain damaged and that part of the brain had a function, whether it's controlling fear or anger or joy or memory or expression or attention span. And whatever that impairment may be, it's worse whenever the fatigue hits.  Please continue to urge your wife to have an assessment so the best path forward can be planned for her. I stubbornly waited years before I sought help. Things still aren't perfect, but they are better. Just knowing I wasn't imagining the changes helped immensely.

 

i can also say that I read posts on this site for a long time before I posted myself, so if your wife isn't comfortable with the idea of conversing yet that is understandable.  I do hope she'll read though, to see that whatever she's experiencing isn't unusual for what she's been through and she isn't alone. 

 

Our hearts go out to you as you adjust to this new normal and we all hope you both find help and comfort here.

 

Colleen

[ARose81]

Thanks Colleen,

 

So good news is she got driving licence back which is going to make her life much more independent - we don’t really live within walking distance of much. It’s also meant we can consider a nursery for the twins for a couple of days a week. We have a cleaner/childminder who can come for a few hours on the other afternoons to cover school pickups and teatime. So feel like we are gradually getting the practical stuff sorted.

 

Its the relationship stuff that seems hardest at the moment. I am a wreck, I can’t imagine how she feels. It’s like every little issue that existed before is now magnified to the extreme, except our roles have completely flipped (I’m curious and she is not). Its so difficult for me to simply get through a day without feeling frustrated, unloved, lonely and then I just feel selfish, like i am letting her down for feeling like that.

 

I know I need to be patient, the reality is just hard. She has no opinion on anything, which leaves me feeling completely helpless and even more lonely. We only have fleeting moments of intimacy (I’m not talking about sex) - our positive adult to adult conversations are few and far between.

 

 As you have all said, the reality is it’s all too early and she its most likely she is simply not ready to tackle things like this at the moment. Hearing that helps, I understand, but it doesn’t seem stop those feelings. I told her I was sorry the other day for getting too weighed down by myself. I’m worried I’m not strong enough to be the support she needs. It probably didn’t help at all, I’m the absolute opposite of support sometimes. Sorry if this is annoying for anyone to read. It’s just how I feel. I really want to be better at this. 

[Skippy]

Hey there

 

Not annoying at all - its very difficult to be the one looking in and not knowing what to say or do.  

 

I've had the experience from both sides (my SAH was 12 years ago and my hubby had a near fatal motorbike accident three years ago - he sustained a lot of injuries, including a bruised brain).  While I feel that I became more tolerant after my SAH and I didn't sweat the small stuff, my husband is constantly blaming others and not taking responsibility for his own actions - though scans showed that there was and is no actual damage to his brain.  As a survivor of SAH , I can only put this down the coping with a near death experience and the huge amount of adjusting and processing this takes mentally. 

 

I suffered from panic attacks after my SAH and again after my hubby's accident.  

 

It's a huge adjustment for both of you so don't beat yourself up for feeling the way you do - just be there when she's ready to talk, cry or be held - its those little things that count and help more than you could know.

[Winb143]

When 1 of us is ill in whatever way it does affect all.  So listen to what Sami has put and just take it 1 day at a time.

 

Me and mine have good days and bad days, then I look at him and in my mind I call myself names lol like" shut it big mouth" ha 

 

When you love someone and they change because of what's happened, that person is still there and we Love each other.

 

Hard work but it is worth fighting for xxxx Sometimes my hubby forgets and I give him a gentle reminder when he moans about the bleep wheelchair so I say to him "My aim is to walk around shops not be wheeled"  but I can only walk now 300 yards. but I was told I'd never walk again. So ???   

Wishing you both Good luck 

Win xxxx 

 

 

[Macca]

Hi there,

 

It seems to me there is a subconscious theme going on here and that is trying to get back to something that resembles 'back to normal,' without either of you actually saying so.

 

That isn't likely to happen for some considerable time and perhaps you should engage a new normal which has different facets to it, but which you can engage with both mentally and practically.  Re-appraise everything and make some changes that will benefit both of you.  Your wife's priorities have change at the moment.  She suffered such a blow and her main focus has to be on recovery that can take a long, long time.

 

Apathy, irritability, indifference, and other such words, describe emotions we have all felt after SAH and for her, they have a different significance than that you attach to them.

 

This is a difficult time for you both, but your wife needs the time and space to recover in her own time, not the time you want her to recover in.  It doesn't work like that.

 

Her brain is currently re-wiring itself trying to find new solutions to old problems or to deal with new ones that weren't previously an issue.

 

Keep talking to her, keep the lines of communication well and truly open, be patient and encourage her to describe what causes her concern and find solutions together.  Implement them only when she agrees that the suggested answer is the right one and she is ready to tackle it herself.  If you try to get her to do things too soon you will only breed resentment and rejection, so slowly, slowly, patience is the virtue here.

[ARose81]

Very true. I’m learning - I guess that takes time as well.. thanks ??