Greying process
Does anyone else feel like they went through a full grieving process for the loss of the person they where pre brain o jury I’m struggling with this massively an n ongoing issue lots of contributing factors I can’t do the things I used too my relationships have changed I can’t work in a job that I love it’s so hard to overcome
I know what you are feeling, I'm nine years in and still have the bright idea that I can do what I used to, just to fall on my face, well not literally. I couldn't return to work. My ex wife ended up, I'm not sure she cared from the day, but she did little to help before departure.
Sadly this is all part of the process....and for many of us there can be profound losses.
I too lost my job, social life, friends etc...but the thing I mourned the most - and still do to some extent - is the loss of self. The person I was before my accident is pretty much gone and suddenly in her place was this stranger who I did not know and did not care to know... Probably the hardest thing for me post TBI has been coming to terms with the disconnect that I have to emotions and to the world around me.
But with time I have come to better understand the new me, and I realised that life can be/ is still good . No its not the life I wanted, the one I had planned, but it has brought a new set of opportunities, new possibilities and I am embracing them with open arms.
I'm not sure how far along you are in your BI journey but for me it took years to get where I am now...and I am still evolving...and that is how it should be. I wish you luck.
Thanks for youreply wishin you and family all the best I am broken hearted that my partner may feel like this we are not yet married I keep thinking he’s going to call it off as he wanted to marry the old me I’m trying my best to make me memories together already and make plans for the future holidays etc to try and rebuild
I’m ver early on in my journeyABI August have just reached five months post injury 2019 I think mine is just the initial struggle as I can’t walk drive or go back to work I’m trying to imagine what my life will be like it’s hard but I will get there slowly I have started to make plan for later in the year so I can start by making me memories I think this may help me to start rebuilding and finding the new me it’s something my neuro psych and me work on together finding my new identity
Hello Cwar90:
I don’t know how that feels for anyone with an “Altered Brain” as I call it., the words (Brain Damaged) should be removed as a description., but I can tell you the grieving process is very real form this side., I’m a mother/full Carer for my son., Warren, after he had a massive brain stem bleed due to an AVM in the stem., I have cried., broke., prayed to not feel like this., Grieving for my son, my only boy at 28., feeling guilty for what shouldn’t be because he’s here he’s not gone., I didn’t lose him., it took time for me to allow myself to grieve., and very sad it was as well as confusing., my son didn’t really like looking taking remembering his other self., I found that sad., now we’re 6yrs in and we now say., not You Warren., Then Warren., he’s accepted I think, my grief for my 1st son xx
There is nothing like it, to grieve for your child while your child is in front of you., and yes., I do still miss my Then Warren x
Your reply bought tears to my eyes. We are 6 years post accident and I so miss my Then Billie (she is a girl) and she does too.x
My heart goes out to you both.
I am almost 5years since my "then "husband was taken from me.
We rebuild our lives around what is now and what we can achieve hopefully.however cruel it sounds I had to accept my "then"husband has gone.
Would I marry the man I now live with...possibly not but that's not the point.
We chose our lives together, and none of us know what's in store but .and I'm sorry if this sounds selfish. Two lives were lost that day, my hubby doesn't have the memory for more than two hours (,if that) to remember what's changed, he doesn't "get"the full impact of what's been taken from Him so I try and build on what he's achieved so far... he can walk with a frame now and sit out in a chair...but it's hard to adapt ourselves when we do remember.xx
I so identify with all you share... Thanks for sharing... My son is 6months post TBI and in a lot of ways he has recovered well. But he isn't able to do things we took for granted.. And I feel so sad at present.. It certainly is a grieving process. My son is 26...he had his whole life infront of him... He is the most gorgeous kind soul.. And it pains me that he isn't able to remember stuff or recognise everyday objects. It's so life changing for all the family.. But it's me who seems to be grieving the most... No one seems to be able to really understand... So seeing your post today has really helped me feel less alone. The mad thing is though I grieve for my old son.. I have such a better relationship with my son now... So its crazy why it hurts so much. I wish it had happened to me not him.... I just feels so sad at the mo. Wishing you and your family all the best x
I am sorry, but I disagree with changing terminology. I worked in the NHS when Normalisation was the next big thing. It stripped diagnosis from patients. The problem was that the diagnosis was important in giving the correct care.
Scope, this is the perfect example, they paid loads to come up with the title "Scope". The problem about a year after changing their title, people didn't know who they were. So the added to their signage "Scope. Formally the Spastic Society"
Altered brain, Stroke, TIA, gives all sorts of interpretation, and to a medic they mean something, but to Joe public brain injury/damage leaves little room for misinterpretation.
Amongst friends or even in a forum such as this, I refer to my brain as having had a hiccup, but it doesn't change the fact part of my brain is damaged, and cannot be repaired.
Maybe because I come from a medical background, I tend to call things as they are.
This is just my opinion, and I completely understand the how things can sound unkind. But when you apply for help or a benefit, they don't care, maybe they should, but reality they expect a spade to be called a spade.
I mean no offense, within your family and friends, keep to what you are comfortable with.
Hello Pairofboots., iv been re-reading your reply, I want to say I think your very right about (Terminology)., your reply gave me food for thought, I remember that word (Sp@£?!ic) from my childhood, a word I’d forgot about, a word that if sed to/about someone you’d be in big trouble with my mum, a word that was worked hard on, to change, I feel a little drop in my heart when I fill in forms using (Disable) to describe my son, but that’s has a mother, as a carer, I fully get it, maybe not fully, so thank you pairofboots, because your reply I’m wiser., I think using softer words, i.e altered edz, hicc up is a little pillow, softer, but I don’t have an injury myself, I live with my son, I care for him, it’s very different now, while at the same time everything looks the same around me, I remember every moment of warrens journey & iv learnt so much, I feel so thankful for being able to be at his side, from the second it happened to this very second now xx take care
Thank you for your reply. I hate everytime I have to complete a form. I can live quite happily in my own little world. But every time I fill a form in, it is like a slap in the face having to write in idiot English what problems I have, they don't appear to understand medical language.
I'm was on DLA without limit, so when I was granted that I thought great, but now with PIP they make you re-apply, I am just waiting for the form to arrive, to repeat the depressing stuff again. It doesn't make sense to me, I will never improve, there is no cure, it just seems be an insult.
Don't let the so and so's beat you, do what you have to, the more descriptive, and the more un-pc the better.
Good luck to you and Warren x
Hear Hear to the (un-pc) the better,. Unless you have an assessor that is in the same field as the Drs. Specialist. Team., that treated you, for whatever your condition is,. it’s an extra fight., just to try n put into words,. how you are effected, Warren was (lucky) enough, on his 2nd assessment to have an O.T., for me as his carer/mum I can’t tell you the relieve I felt 15/20 mins in, that I didn’t have to try explain in my uneducated, emotionally effected, words xx
And the chances of that = 0. The last assessor I had should have won the Pulitzer prize for fiction.
Makes me wonder if there are any assessors that are fighting the same fight as others when it comes to PIP., mainly brain injury, how does it feel to reject someone then have the same fight within there own family! x
I'd hope that if they have had to be on the other side, they would be more understanding.
Ah, medical language does that understand the metaphysical experience, if you've not experienced, it's like understanding a colour you've never seen.
What words do you use to describe something you'd never experienced before. You sit in front of the Neuropsychologist and they understand(?), they recognise the reported experience and are certainly the best person to help.
Most of my client group were people with some kind of mental health problems and I heard all the effects of Clinical depression and the issues it causes but I thought it was about depression and now having been diagnosed I realise it's about distorted thoughts and that it can effect your decision making at a very low imperceptible level before it becomes obvious. When things become more pronounced then it's the distorted thoughts not depression as 'normal' people understand it.
After my ABI a lot of my clients were ABIs and a significant number said they'd spoken to a number of people in the field of Neuro and I was the first who seemed to 'really' understand.
At that point I would stop them and say I didn't understand my symptoms but I would try and understand and certainly believe their experience.
So what words do you put on that form or use to describe your difficulties to someone who is only a GP at a medical assessment.
That's why most of use have real difficulties with PIP etc.
I don't normally have a problem with a Dr, it is the failed nurses, OTs etc. In fact it was a ministry of health approved Dr that forced the DWP to rethink the PIP assessment, it's the private companies like Atos, contracted to run the assessments.
But you are right about the question that has no logical answer. From my experience, it isn't the fact we give the wrong answer, it is that we are asked the wrong question.
Absolutely, although I've questioned more than one NHS Neuro 'expert', they've usually said that's a good point, at least to my face.
I've always thought they were brilliant and very helpful.
I normally scare them formally being RN(MH) nurse specialist.
I am almost four years post injury and I am definitely greiving. I still have times where I can't even believe that it actually happened. If I didn't have Headway to help (helpline and local group,) I dread to think what would have happened. I think my grievng has been held up by my overwhelming anger at the person who caused my injury when I was in their care. I went into hospital for a minor procedure and came out with a life changing brain injury. I have recently been dealing with the PTSD caused by this by having EMDR with a great psychologist, but it took over two years to get that diagnosed!
I think that another thing that we have to deal with that makes it harder is that we are trying to deal with the grieving and everything else with a brain that processes things differently. I have found that I think I have dealt with something, or learned something to do with how I am now, only to find that it doesn't 'stick.'
I am glad I found this site as I am learning a lot from others.
I do wish you all the best.
My story is similar to mine but I went in for coilin of my anuerysm then it ruptured then a craniotomy clipping of anuerysm and a coma later here I am to tell the tale
By I honestly don’t think I’ll get over it either I hope I reach a timewhere I’m at peace with what happenedas it’s a lot of stress to carry round
I know you don't want to hear this and probably want to punch me but you are still in the "early days" of adjusting to the new you.
There is still a lot of relearning to do.
You know you need to grieve and counselling can help with that.
Every journey is different.
Enjoy your achievements (no matter how small you think they are compared to the old you).
Prioritise what you feel is most important to learn.
Let the grieving happen and then make joyful plans for your new life.
I still get told that I am in the early days of recovery after nearly four years. Yes, it is aggravating but it's true. None of us can foresee what might improve or not in the future. The other big thing to consider us that we will all learn strategies to manage the changes and this takes time.
I wish everyone a similar position all the best as they fight on.
I had a TBI 6yrs ago and over time accepted I could never be exactly the same person. That in someways is a constant challenge, it is even worse when people I know aren’t happy or are frustrated by the fact I’m not the same. It’s extract weight to carry.
I never moan there are millions of people in the world worse than me/us. I have always offered to leave my wife post TBI, but we agree whilst I’m different I am generally more pleasant. Health is wealth, and life is as complicated and challenging as individuals want to make it. Mindset is 99% of a humans strength in my opinion.
Good luck with enjoying life x
Working in the nhs I do too how did you get on with returning to work etc did they offer alternatives where they supportive
Dear Cwar90,
I can't answer you, other than YES, at the moment....I'm getting ready, to go to, HEADWAY ESSEX. I absolutely Promise, to write, later my friend.
AndrewT
Couldn’t agree mor I have a long way to go before acceptance but it’s the thought of how others view me is the worst for me
Please try and remember that in general we often don't know how others really view us and we tend to project our fears of how we think we might look into others . If people are caring and compassionate they will not judge you. If they are not caring and compassionate, don't bother with them anyway. They can take a long walk off s short pier. Good luck
They can add a pair of concrete boots and high tide to that long walk.
You betcha!😀😅😂😁
Cwar 90...one thing I have learned is that you cannot control how others think, react or behave....
Precious energy is better focussed on your recovery and open communication with your partner.
It may not seem like it now, but you will adjust in time. I hated it when people told me this...and wanted to punch anyone who dared suggest it was still early days....but it's true.
Hang in there. Life has plans for you.
Hahaha this is exactly how I feel or when people you’ve got a way to go yet or look how far you’ve come that drives me craaaazy as I am not where I want to be I know they are just trying to be positive for me
Hi there.
You have got it spot on. When you fail to recapture your former self it can feel like the loss of someone.
It's a strange situation looking in the mirror and seeing ( an older ) version of myself that is easily recognisable as my pre bi self. Yet I know that person does not exist anymore.
It took me many years to accept this new me and be able to say goodbye to my former self.
I even celebrate the day of my rta as a sort of rebirth. I found it helps me look forward to the future, after all I can't change who I now am ( I have tried trust me)
All the best .
Pax
I'm ignoring the limitation, as I see that as coming to terms with your new limitations, rather than grieving
For me grieving would relate to the loss of my 'old self, so changes in my personality or at least a change in my behavior.
For a long time I felt like a different person but after so long I feel like me and that pre bleed me seems like a stranger, perhaps I've gone through the grieving process
Before my BI I worked as a teacher for students with severe emotional and behavioural problems. I loved the job and really miss it. But then, only yesterday, I realised that I will never have to go through another OFSTED inspection. 😀 A silver lining I guess?! 🎉
Dear Cwar90,
As Promised, I can now answer your question.
I think that we can all 'Grieve', for what we were, IF we 'look back' too much. The important Thing, is NOT, what you were- it's what you are now. You ARE alive, clearly still able to both Think and Express yourself.
I used to work in a Laboratory, for a Pet Care Company, I was Directly responsible for checking, every aspect, of Production. The whole process, from Raw Materials, through any Intermediates, to the Manufactured product(s), The Packaging and finally Dispatch. I took 'On Line' samples, Filled Products for Stability testing. On top of this I developed new Products, Methodology...… I could write Reams here.
Now I live in Supported Living, in other words, I have Staff available at ALL times- and need to have Someone 'With' me, when out...… BUT, I too am Alive, Twenty two years AFTER, my Mother was told that 'I wouldn't Survive The Hour'.
I am 'Friends' with, a fair few, of my neighbours, in fact I have just got back, from Matts flat, having hung a picture, for him. I like Matt, he has a gentle 'Way' about him. Yes, he can, be a bit 'Crude' ('Potty Mouthed') at times, he can listen to music- WAY too loud!...… BUT yes a 'Nice Bloke', 'Good Egg', 'Ok Geezer' or plain 'Alright'.
So, you see, I have a NEW Life now.... Different, in many ways, but still mine. There are 'Times' to Think Back, for sure, remembering achievements, old friends/ acquaintances, girl (or boy) friends- and so forth. It's just not good, to 'dwell', too much, YOU are different now. Be thankful, for you life, home, friends and... did I mention LIFE?
Please Feel Free, to contact me- indeed any of us- further Cwar90 or, if you prefer, you can PM me. Either way, I know, that Everyone Here wishes you well Cwar90.
Best wishes, from us all
AndrewT
I am 19 years post brain injury although i receieved my rehabilitation many many years after sustaining my injury and from my perspective i did grieve for who i was before my accident. I was a student nurse and my career ended before it started, i grieved for how things were so simple before and an actual effort now for me to do and some things (such as multitasking etc) that i will never be able to do. I felt frustrated and i know it did affect my relationships with my family struggling to accept who i now am compared to who i was. I think the turning point for me was when something just clicked. I thought i could be this angry person about what has happened and what i have lost or i can actually start a new journey and actually get to know who i now and see that i do still have many attributes i still like about myself. With the help of the acquired brain injury team i learnt about myself, what affects me and how to compensate for what i can no longer do myself. Managing my fatigue being the biggest issue i faced i think as when i am fatigued every aspect of my brain injury becomes more obvious and pronounced. What i basically want to say is embrace who you are, there will be things you miss about yourself but there will be things you like about yourself. Focus and build on those things, allow yourself to grieve for who you were and then find out who are now. You might not be able to do your old job or some other things that were a vital part of you as an individual before, but its about finding new things for the new you and that can be both exciting and daunting but everyone has qualities in them that are unique and they are loved for despite everything.
I can only speak for myself but thats when i turned a corner in my life and started looking forward and not back because no matter how i feel i will never become who i was but i threw myself into my rehab into finding who i now. I hope everything works out for you
I was also a student nurse before my first SAH, and registered nurse pre thi brain injury
I hope you manage to get back some form of your studies and that university are supportive! I’ve been home for a few hours today which was amazing I lit all my candles and did a few small bits I enjoy doing just doing this has helped massively I think trying to do little thing like this helps to build a new normal
Another stage in the process?
Petition to improve PIP Process for BI
Unbearable litigation process 
Wife of a meningoencephalitis survivor 2014 lonely confused and grieving ☹️
