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About ARose81

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  1. ARose81

    New - Reassurance Needed

    Very true. I’m learning - I guess that takes time as well.. thanks 🙏🏼
  2. ARose81

    New - Reassurance Needed

    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.
  3. ARose81

    New - Reassurance Needed

    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.
  4. ARose81

    New - Reassurance Needed

    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.
  5. ARose81

    New - Reassurance Needed

    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.