Newbie Advice!

Hi all,

This is my first post here. Hope you don't mind that it's a long one, but I wonder if anyone else has shared my experience.

Two months ago my wife was involved in an accident which resulted in her needing surgery to her brain to (as I understand it) remove a clot in the left parietal. She remained in hospital for nearly three weeks, moving from the Critical Care Unit to a High Dependancy Unit and finally to a specialist neurological ward. She was discharged around three weeks later and has been at home with myself, our two children and our dog ever since!

We have been seen by a local neuro-navigator and have had appointments with a neurological consultant at a nearby hospital and with an OT at our local community hospital. We are now waiting for another appointment for a full assessment by a complete rehabilitation team (Speech Therapy, Occupation Therapy, Physiotherapy and Psychology) as well as an MRI.

As you can imagine the last 7 weeks have been pretty tricky trying to juggle everything, but I have just about managed (with a lot of help from friends and family!).

My main struggle is that my wife seems to think she is a lot better than the experts seem to imply and her behaviour seems to suggest, almost as if she's in denial. This is quite frustrating when she discusses getting back to work, doing the school run or even taking the dog for a long walk sooner than I can tell she will be able to. She doesn't seem to understand or accept the severity of her injuries and I feel like the enemy when I gently try to suggest these things.

If anyone can offer any advice that might help me as I embark on this long and complicated journey I would be everso grateful.

Many thanks

Bugsy

12 Replies

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  • Hi Bugsy

    Welcome! Give the Headway helpline a call in the morning, great people and the more support you can draw on the better.

    I wrote a longer reply but it seems to have been lost, so bear with us. Short answer is yes we tend to think that we can still do all the old things and takes a while to realise we cannot.

    Good on you for doing your best there, I realise it can be very frustrating so call in and sound off as much as it helps. Good folks here, carers and survivors alike so bear with us as sometimes its a while before some responses land.

    I had damage to my left parietal lobe a long while back now. Things are improved a lot and I am used to being a bit different to the way I was.

    take care of yourself also!

    Speak soon

    Nan xxx

  • bugsy i think its disgusting that she was discharged from hospital without all the assessments being done before hand.

    i too have a brain injury resulting from a stroke in feb 2012, mine was only a warning but it did enough.

    in the time iwas in hospital, i had a neck scan, a kidney scan and a mri scan to make sure there was no bleed so they could start me on aspirin...........all within the course of 2 days.

    then the aggression and mood swings started, noise intollerance, your friends stop coming around or inviting to occassions because of inappropriate behaviour / language and the fatigue.

    the worst of it my friend, you love and want to care for your wife but youll never understand because you dont have a brain injury.

  • Welcome Bugsy. In 4 years of coming here I've seen this issue mentioned many times by partners/carers. And others here will have seen my story of how I reacted on my return home from hospital after a brain haemorrhage. Within a week I'd ordered a new yellow bicycle as a symbol of my determination not to have my life interrupted or changed, despite warnings that it would 'Never be the same'.

    I insisted on walking off to the shopping centre alone, almost immediately, because my legs wouldn't work properly and my balance was poor so I wanted to show I was 'boss'. I pretended not to notice being followed at a (not very) discreet distance by an anxious partner who knew I couldn't be deterred.

    It's obviously an instinct for survival which causes this single minded need to restore normality, but it's misguided after a brain injury because it's impossible to function normally with a compromised brain. You can either insist on restricting your wife's movements, though I suspect you'll have a struggle, or you can allow her to realise her limitations by giving her the freedom to do so.

    I quickly learned that riding my beautiful new yellow bike was marvellous in theory but positively dangerous in practice (though a year later I got back on). And I continue to bend the rules as I'm hard-wired that way.

    A possible pitfall of returning to work too early is the demoralising effect of failure when once familiar tasks prove overwhelming. To minimise that possibility, many people choose a phased return to work and, even then, working only part time can prove too much. I used to be a whizz at mental arithmatic ; now I can't remember where I was up to 30 seconds before. But perhaps it's less frustrating having tried and failed ?

    There are so many variables such as personality, severity of injury, number and nature of symptoms etc..............

    Maybe sitting down and reaching agreement on what, and what not, can be safely attempted, and sticking to that agreement is the most feasible option. It will definitely be challenging Bugsy but, by tackling each new issue as it appears and keeping humour in the mix, you'll find your own way through.

    You've made a wise move coming here for support, so please stay around, and there'll always be someone ready to offer the benefit of their experience !

    I hope the appointment for rehab assessment will come through soon. All best wishes, Cat x

  • Hi and welcome, it's 15 months since my brain injury, and when I got out I was exactly like your wife , I wanted to get back to work and put the whole experience behind me . I'm fine ffs I thought. I wasn't.

  • I when back to work a few hours a week , great no hassle, then I got sacked , fine , I got another job . I wast fine the fatigue depression was crippling. My advice is just support her as much

  • As you can . She will release she is not the same . Hope this is in some way helpful.x

  • This is a challenging period but, as others are saying here, not uncommon. I would only add a particular note about driving. I am a member of the IAM (Institute of Advanced Motorist) and have voluntarily not driven for many years (5 plus? I can't remember) despite not being advised not to drive by any Consultant and living in a rural location with no public transport). The reason? Because I am not prepared to risk killing or injuring someone else because of misjudgement (in my case losing concentration and a stiff neck that makes me less inclined to turn to look properly). The IAM test is about competency yes - but mainly about safety. As a mother of two the idea of causing death or injury to someone's child or loved one is anathema... I get hospital transport. It is possible not to drive - after all it would have to be sorted for other reasons such as loss of a partner through death/divorce/caring responsibilities. All the best.

  • Many, many thanks for you varied responses. It's so heartening to know that I'm not in a unique position. I understand that the injuries she's sustained might manifest exaggerated character traits but I am struggling with the excessive (amongst other things) naivety, stubbornness, drive and mendacity. It feels like one of those Eastern European Tom & Jerry cartoons (if any of you remember them!). All of the elements are there but it's not quite right and I'm really not enjoying watching it!

    Bugsy x

  • So sorry to hear about your wifes accident.its going to be a long hard road ahead for yous i suffered a tbi 8 years ago this september.to start with a thought there was nothing wrong with me complete denial and even to this day i am. Still in the reliazation that i am not the same person as i was before my accident.it takes a long time to accept that your a different person and nothing feels the same.a wish u and your family all the best on the road ahead.and i would advise you to show your wife peoples posts on this site it took me a long time but u get some solace knowing we are not alone thers plenty people out there in the same shoes.it will be a hard journey ahead but we are still here and should be grateful.all the best

    Craig

  • Hello, bugsyroo and welcome to the group. (For context, I have a BI, brain haemorrhage a little over two years ago.)

    We're all different, but I imagine a lot of us had the 'denial' element at first, I know I was an utter nightmare at times, between the crippling lethargy of the cognitive fatigue sometimes meaning I couldn't do anything at all, and wanting to be the 'old' me again. That's the bit that some of us aren't told, or aren't told in a way we can absorb at the time, it's possible that someone in the hospital did tell me I wouldn't be the same, but that the drugs, or the trauma meant I don't remember it.

    cat3 makes a very good point with the bicycle, not just the immediate urge to prove ourselves, but also the way we sometimes do things that might have been out of character 'before'. Several group members here tried very hard when I was in my early-stage 'WonderWoman' phase to advise me to take it easy, and not try to do everything all at once. I should have listened, but I was obstinate before the brain injury as well...

    Personally, I tried to 'outrun' my deficits, I thought that if I just kept trying a bit harder, I'd get 'better', and back to what I was. Massive spoiler alert, we don't go all the way back, bits of our brains are either irreparably damaged, or in my case, have metal wires and scar-tissue where there used to be functional connections, we are different. Some of the changes can be manageable, with adaptations, but sometimes it feels like doing a 1000 piece jigsaw, in the dark, as we discover things that are different, or more difficult than before.

    As others have suggested, contact Headway for advice, they are the experts. My ex tried to tell me he thought I was going back to work too soon, and I took that as a personal insult, that he didn't think I was capable. (He still thought I was capable of doing all the housework while he never lifted a finger... one of the many reasons he's my ex, and not my husband any more.) I can't imagine how difficult it must be for partners who are suddenly shifted into the 'carer' role, and I know for a fact that I was incredibly resistant to being cared-for, because in my skewed logic, I'd never get better at doing things if I didn't start doing them. (Straight away and all at once, 2/10, would not recommend.)

    It's hard for us adapting to our injuries, but it's hard for those around us to watch the process, too. I'm wincing at the ex, understandably distressed by seeing his chief cook and bottle-washer having emergency brain surgery, repeatedly saying "I thought I was going to lose you.", which led to me eventually snapping back with "I'm not a dog, or a suitcase, or a soft toy on a train, you can't 'lose' me, because you don't own me!" I could blame the pain, or the fact that the majority of my damage is frontal lobe, but I was a cow before the surgery as well.

    In some ways, it's like the terrible-twos toddler-phase, or the stroppy adolescent making unwise decisions, our brains ARE re-configuring, like they did during childhood and adolescence, we just have a whole lot of 'before' to contextualise against, and we're probably not going to accept being sent to our rooms when we're being awful. In a manner of speaking, you've effectively become her 'parent' for a little while, and how you do that depends entirely on the two of you. Access support, though, as much as you can, Headway, Workplace Well-being (that's what 'Occupational Health' are called now), and your medical teams, it might get to the "I have told you five thousand times not to climb on that!" stage, or not.

    We don't mean to be awkward.

  • you sound so lovely and caring. I suppose the only thing that keeps us going is hope. making plans is a good thing. deep down we know that reality is not the same thing as our dreams would have us believe. maybe hope is part of the bravery required to survive. talking is so good, you are trying to be so supportive and I hear in your words that you would like to protect your partner from any more suffering. reality is never far away, we can only hope that life will somehow be familiar again.

  • Her memory of how capable she was before the surgery etc is what makes her think she can still do what she used to. As one who sustained a brain injury there have been plenty of times I found myself saying yes, I'll take care of that or I will do this activity and then when it came right down to doing it there was just no way for me to do it. Even though I really felt confident that I could. Her brain function etc has not caught up to her new different capabilities. For me there was also a tremendous amount of denial on my part about my capabilities. It takes time to learn our new capability levels. If she is open to it, have her get on Health Unlocked to read what others are going through. It might help her to see what's going on more. Wishing you well with your new lives.

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