Should I hang on for a miracle or is it time to say goodbye?

[mysteryoflife]

This is a complex question so apolgies it is long. I feel that I need to make a decision inside myself and need help with it if someone can offer it.

Two years ago my then partner suffered a severe head injury which created a spiral and ricochet effect that has torn lives to bits really.

At the time of the injury, he recovered after a few weeks and seemed to be normal and back to himself but it left weaknesses in him that did not appear for months later until he was placed under significant stress.

All the symtoms of brain injury appeared very suddenly...personality changes, emotional outbursts, total lack of empathy and it also triggered very sudden onset of mental health problems - severe depression and mania.

At the time, none of us had any clue what was happenning.

This all happenned over a matter of days rather than years (he had to some degree been experiencing these symptoms but was hiding them as he had no idea what they were) so it all really exploded at once.

After he left us, things unravelled very quickly. He developed very severe depresion in addition to manic symptoms and over that period his behavior was like nothing I have ever seen before. He was being abusive to me, but could not seem to control it but at the same time was aware of it and the suffering he was causing to his loved ones which seemed to make things worse.

Sadly he just saw the GP and got some antidepressants and no one looked any deeper into things and he felt at the time the solution to feeling better was to just be left alone and I had no choice but to accept it.

Over a long period of shock, confusion and trying to make sense of it, I started to get suspicions about him having more than depression and spoke to headway and also posted here for advice and was told by you all and by headway to encourage him to get help. We were not really in contact at that point (at his insistence) but eventually he came around to listening and sought advice on it. While there is no scientific test which can “prove” that his head injury caused all of this, the doctors say there is enough evidence to make the assumption that his injury was causal in creating this situation and he is getting CBT and the right advice now.

He is still deeply depressed, very sad and says he has "black moods" much of which I think is linked to the loss of his family as I believe he loved us deeply and has to live with all of this.

I have felt some relief over finally getting some answers or an explanation that makes sense after being so confused for so long (thank you MN for advising me to look into this as at the time I felt I was crazy), but at the same time the answers are not definitive. He lives a quiet but relatively normal life with no emotional attachments and does not want to see me and only speaks to me rarely. I think it's just too hard for him.

I consulted with a specialist myself and was told that his illness may be permanent, his injury might have caused personality changes or he might get better from the depression and go back to the old person. Nobody really knows what will happen. Time will tell.

I am doing fine in terms of the healthy grieving. I have done the counselling and still go when I need to, I have a support group for it, I miss him every day, and my stepchildren too but the pain is part of the love I had for him and that's something I would never regret.

I am in a really peaceful place where I work off he assumption that I am bereaved, because it feels that way sometimes.

I still talk to him in my head and feel like he's around me all the time. I feel mostly (despite what happenned) that I was really blessed to have had a love in my life that was so great and I'm also sure that it was his love that made me who I am and provided me with the strength to cope with losing him.

I'm sad, yes, but in a healthy way and I am doing okay. Ups and downs but I have learned so much about msyelf and feel like a richer person in many ways.

My question is really about moving on.

I am told by the doctors that no one knows what will happen but that the idea of thinking he will retunr to who he was, realise he misses me and feels the way he used to and going back to a life together is pretty slim to say the least.

Practically speaking, I am late 30s, and lost a "family" here and would very much like to have one again instead of a lifetime without. It's just me and my child now and there's a lonliness there and it feels sad that I might never have that again or have that feeling of being part of a team truly as I was before.

All of that said, this man was the love of my life.

I have no idea how to let go if there is even the slightest chance I could have him back.

It wasn't for the children, I would probably pack a bag right now, show up on his doorstep and tell him that I didn't need anything back, but I was going to just be there, for however long, through whatever because I would rather be with sick, unstable and damaged him that nothing at all and that is how I really feel.

I don't know if making the decision to wait, to just make a life on my own leaving the door open for him to come back in 5, 10, 20 years is something that only makes worse what's already a very sad story.

I just don't know what to do?

How do you let go when there's still that nagging slither of hope?

What type of brain injury did he have ?

Oh Mystery, what a difficult and heartbreaking experience for you.
My Uncle had a brain injury, many years ago and completely changed him. From being jovial and witty to angry and spiteful in a blink of an eye. His family often struggled to deal with his personality.
You seem so loyal and loving. I hope you come through this in a good way. I have no advice for you, just good wishes.

How old is your child, can I ask?

I feel for you

All I can suggest is that if you're sure you've gathered all of he info you can on this, use this to make a judgement on what you'd have advised your DP to do if this were you with the brain injury and he was feeling torn in the same way you are.

He fell, quite far, hit himself on the back of his head, which would have thrown things forward and possibly affected his frontal lobe. I am only working off a message from him with an update but there is nothing on the scans, but they said given the timing, the severeity of the injury, the sudden onset of a total personality chance and then very sudden and significant mental health problems which did not re-exist that the connection is more than likely. Whether it is actual damage, or a disruption which will settle they can't tell him.

In his own words he is trying.

It is a bit like he left me and his previous life behind and now there is a new one. I feel sometimes like he remembers me, sometimes like he misses me but most of the time during contact it's a bit like talking to a stranger so I find it very hard.

If the boot was on the other foot, I would have found it unbearable to think of him suferring I suppose. I would rather he forgot me and started again - but I know he never would have. He would have just waited or done whatever was needed to be there for as long as it took.

I think he thinks I have moved on. I think he thinks I am happy and have left the past behind me. I certainly don't let him know how much I still love and miss him -I am not sure he could listen to it.

It's hard to understand unless you have lived it but it's not like some romantic film where I would tell him and it would soften his heart and run back into my arms. He's damaged to the level that he's not capable of those emotions of ongoing tenderness. He can have flickers of them, and he has done but it's fleeting and he has given up on life really.

I am really scared in so many ways that i haven't done enough, or fought hard enough even though at the time I did everything I could. I wonder whether I should leave it a few more years and then go and see him and see where we are at. At the same time can almost not take the pain of seeing him again and him not remmebering me.

It's a kind of emotional amnesia. He knows who I am and he rememebrs facts but it's as if he is detached completely and I can see it and feel it and it's worse to be faced with than to not see him at all.

Sorry, my child is 11 now. He has dealt with it all very well. Some attachment issues but he's a very brave and clever little boy with a big heart an he knows there are two people....the man before and the man after and he says he undrstands that and knows he would never have acted like that if he was his normal self.

So your dc has some understanding of what's going on. I think in some ways that makes it harder, doesn't it?

What an awful situation for you all. I think the only advice I can give is not to put a time limit on anything - don't think 'in 2 years I will do this, in 5 years I will feel that'. Just let your emotions take their own time.

Oh yes of course he does. His stepdad who adored him and raised him disappeared one day and he was there asking me where he ws and what was happenning and observing as well meaning friends and relatives swapmped the house trying to figure out where he was and what had happpenned. After that, he resurfaced a few times sporadically as an unrecognicable person. Not the person we'd known and even at 9/ 10 my son was crying saying to me "but he loves us Mum".

All this came into my mind a lot today and I had a long chat with my son about it and he said he is okay and he knows that he loved us and he gets that he was ill.

Anyone who was really there in the situation closely would have known it. He was just like someone else. It was hard to explain, like the world was falling apart and he seemed to have no idea of the effect it was having on us.

He ranged from spiteful and full of rage and insults to crying and suicidal to flippant and finding it funny or like it was not significant or a big deal. There wasn't really any point where he properly engaged with it or talked about ir logically with reason and rationality.

The value of me, and to a lesser degree the children just disappeared. He said being around us didn't make him happy anymore and it was easier without us.

I have also lost someone in a similar way who is still alive. I also have no idea how to move on - hope is a killer huh. I have recently had a serious health crisis and I do believe it is a direct result of this loss, the sustained pain of it, the unresolved nature of it, the hope...

I have no idea how to get any form of closure or how to take steps to move on, tho i have certainly tried and have a toolbox of skills, none of which has even touched it. Therapy? I can hardly get the energy to present it to a therapist (sorry so bleak!) but I really must bcs It's not an exaggeration to say it was literally killing me, so I have to do something. But you say you have had, and have, therapy?

Just to let you know I know something of what you are experiencing - as I'm sure many on here will who have suddenly and unexpectedly lost a beloved partner to an OW, with attendant entire personality change, when it was the very last thing they expected.

mystery I took the liberty of telling my DH about your situation, as he suffered a serious head injury c.16 years ago, before we met. Not being a medical professional, I have no idea if any of this is relevant to your own very sad circumstances, but some of what he has said may resonate.

As I didn't know him before, I can only go on what he, his family and friends have told me over the years. His personality has changed, and permanently. We are very lucky that his change hasn't been anything like your DH's- my DH is more easily moved by emotional triggers than he was before (he will weep at sad films that would have left him unmoved); he is more easily irritated (according to his mother); some social niceties have not returned. Physically, his head judders in times of stress, tiredness and concentration.

However the majority of recovery was attained within a year of the accident (child-like behaviour; amnesia etc).

His opinion- and please bear in mind it is only that, albeit with the memory of some surgeons' advice- is that this is likely to be the way your husband will be. This is, if you like, the new him.

This 'new' man made his choice. I think, hard though it is, you must accept it, and move on. I feel so sad for you all. Life can be shit.

But. It may be distressing for him to be presented with the truth of your sustained love for him... but it's distressing for you to keep it quiet. So who wins? Why should he and his needs win out? You are really suffering.

As excruciating as it may be - and you have to count that cost - perhaps give it one last go and tell him you still love him. His response should tell you what you need to do.

.. which I think is that you have to move on and build a new life. He is effectively dead. (So sorry op)

Thank you so much Shodan. I do know that I am hoping for a miracle and on most days I am accepting he is gone. Thre's just always that bit of yourself where you think..."but what if?" and the frustration of feeling like if he was only with you, that you could make him better. That desire to look after him that in some ways makes me feel like a failure.

Springdaffs, I am so sorry. The therapy helps in so many ways in terms of helping me move forward, re-establish happiness, finding strength and venting - but I am often angered by it. I feel sometimes like she could not possibly understand. Like she wasn't there. Like I want to say "oh really, and if this was your husband could you walk away?" which I know is childish and unfounded.

I feel like me telling him how I feel might make him suffer more though. If what he feels is to have peace and quiet and no memory of us then I have t give that to him. I did think maybe I would tell him one day, but let him get more stability first.

It's two years now and his depression is astonishing. Even with the medication he just about copes with it. I don't want to give him stress.

I know he is effectively dead. I really understand it and have acceptance but the tiny bit of hope lingers

Perhaps a time limit is a good idea. Another three years to give him time to properly recover from the depression, get off all medication and then go and see him and tell him that I love him. See if there is any chance he could still be himself inside.

No wonder you feel angry OP. Can you open up to your therapist about this? I'm so sorry for your loss

Thank you Kitty.

There's something else I struggle quite a lot with which is that for obviously a very long time no one (not even him) knew there was anything wrong with him. Most people thought he'd just left. All they saw I guess was me and DS abandoned and him being a complete irrational and nasty arsehole and so I guess my friends and family (who loved him a lot) changed their opinion of him and decided he was at best a cowardly, abandoning arsehole and at worst evil or something.

For the first year the comments I got were "Goes to show you don't really know anyone" or "He was hiding this side of himself from you" and it was confusing to me because I just didn't believe any of it.

People who loved me just saw me being destroyed and abused and wanted me to get out of it and get away from him so I suppose they all turned on him. My Mum is probably the worst in a way because she is always trying to set me up with someone better looking or with lots of money and I wish she'd see how much I love DP and stop being disloyal to him.

I never did believe it, I always knew something was wrong with him. I actually thought he had a brain tumour.

Anyway the point is that so long passed from when it all happenned to when the truth slowly came out that very few people actually know about it. I don't know whether or not to just tell everyone in my life or not but I feel often sad because I can't talk about him or mention him as it makes everyone uncomfortable and they want me to forget.

You just saying "I am so sorry for your loss" is really so helpful and comforting because I wish people would not focus on his appalling behavior for the two years since he was ill, but instead remember the person for 8 years before that who never hurt fly an who loved me and the kis more than anything.

I feel like my grief is one I am hiding from people and I want to scream and shout and say "how can you forget him like this? Don't you rememmber what he was like?". Like I want to defend him.

He was sick when he did those things. I know they were awful but it wasn't him.

An awful lot of people feelings take precedence over your op. You mum's, your family's, the therapist's. And, of course, your husband's. You don't want to hurt or upset anybody. But look how much YOU'RE suffering!!

If you want to practise, start with the therapist. It's a therapist's job to hear this stuff - it's an essential part of the work. No point you being goody two shoes (however deep-rooted that is culturally): get it out. You are right, it's theory to her unless it's happened to her - so tell her she is pissing you off and she doesn't know what she's talking about. You pay enough!

I mean it op. Time to put yourself first.

It is not childish or unfounded. Therapy is not where you follow social rules.

Have you come across codependence on your travels? I hope that doesn't offend or anger you - tho fair enough if so - but it is a codependent trait to believe one can love someone to health.

Just a thought.

So you're grieving and no one is acknowledging your grief. It sounds like a very lonely place to be. If he had died you would have had people's sympathy. It sounds torturous. Your therapist should be able to deal with you and your real feelings. If not, find one who can. There is nothing odd about how you are reacting. It's a very unusual situation and your feelings are valid.

I think I remember your other posts OP. I am so sorry you're still in the midst of all this

I think in your shoes I would just have to think about it in very simplistic terms in order to try to come to terms with it.

I would just have to tell myself he'd made his choice, he had every right to make that choice and you're now starting a new chapter on your own.

I'd try to forget about analysing it all, thinking about the whys and the what-ifs, and try to start moving on.

Obviously that is a bleak way of looking at things, but I guess setting aside his brain injury and viewing it as a normal marriage break-up might help. People come on here all the time and say their husband was wonderful, they can't believe he'd ever leave and look, he has done just that.

I don't know the solution but I just can't imagine what you're going through. I think emotionally it is often much easier to deal with a bereavement than the loss of a once loving relationship. Good luck OP xx

Thank you springy. I know that it's not case of being too scared to stand up for myself with therapist or anyone else but more a case that I know in a lot of ways they are right and the focus should be on me and moving forward and I suppose even if he'd died they would want to to focus on that too. It does help, they all do, but inside I suppose none of them know how I feel, and I am glad they don't because would not wish it on anyone.

Kitty, that's exactly it, I feel like there's no place for the grief and it is horribly lonely. So I sit there chatting to an imaginary him and prefer mostly to be alone at night and not in a bad way - I love seeing friends and in a lot of ways I am happier and more peaceful that I've ever been because loss like that makes you appreciate small things in a ay ou never did before, and I have been blessed with a lot.

I think it's okay to grieve for a while though and it's only been two years. I just wish sometimes they would know that what would give me most comfort is to freely about how much we all miss him, or swap stories the way we maybe would or could if he was dead. Not that I would ever wish that, but I wish that him being still around didn;t make him a taboo subject - which it has. When I told my Mum he'd written to me she said, "you're not going back are you?", which I know is because she loves me and doesn't want to see me suffer, or DS, but it's hard for me.

Thanks so much Tracey, I think I remmeber you too and the folk here were so helpful. I see the logic in your ideas but I suppose I tried it that way - to think of it as his choice to leave but I was really trying to do or be something to make it easier on myself and it wasn't facing my grief properly. It did detach me from my grief but I ended up detached from everything else too. I stopped even feeling love for DS (sad to admit) but I went to a very cold dark place.

In a way that probably makes no sense to you, staying in the pain as awful it is, feels like the only way to be real and authentic and I just have to go through it. I definitely don't feel "stuck", I feel like I am moving forward through it and coming to a place of definite acceptance where I don;t analyse at all anymore and instead accept that I really loved him, he really loved me, he had an accident and now he's gone. But trying to forget him doesn't make it easier.

You can't love anyone that much and lose them in this way and be over it in two years so I won't complain about all that pain because it's he flipside of the coin of loving someone.

I really just started to think in terms of where life really goes from here. At first it was the shock and thinking I could do something to fix it, then realising I couldn't and wanting to die, then coming to a place where I truly do want to live again but not really knowing how.

I am not sure how another man would fit into my life -would he ever understand this. I couldnt cope with him competiting or being jealous and I wouldnt want yet another person I had to pretend in front of to spare his feelings. I can imagine loving someone else, yes, in fact my capacity for love has grown if anything -but I can't imagine ever stopping loving D either.

I'd like to be able to have both. I'd like to not feel like giving up and opening my eyes to someone else isn't me letting him down or walking way too soon and maybe the answer is a little more time.

But he didn't die, which makes this much more complex.

I wrote a giant reply - on my tablet, no less: tap, tap - and twas lost in the ether. But to summarise you're not getting off lightly I do wonder at you being so reasonable. yy they mean well, and that's great - better that than tother - but it's not cutting it, is it? They're not getting it. It's not unreasonable for you to identify that, to make it known. Emotions aren't necessarily logical - but they are valid nonetheless.

However, I do get the dumb with grief thing, the inability to talk (why I am reluctant to broach therapy: I'd have to find the words). Getting feelings to the forefront, dragging them up from the depths and putting them into words? Too much for me at present.

You are right that this is, so far, only two years for you. And that is not long with what you're facing, the complexity of it: it's not straightforward is it. I also get the peace, the increased capacity to love (Blessed are the poor in spirit, for theirs is the kingdom of heaven...); the standing back and viewing life from afar, not really feeling part of it because something so momentous has happened. I get that.

I don't think it's unreasonable to hope to meet someone who can take your love for your ex, even though he's still alive; the grieving for what you had which was abruptly taken away in a long and drawn-out agonising process. Many widows and widowers are able to support one another in this fellowship of suffering and loss - though they usually have to be in the same boat (from what I can gather).

I suppose I am just dumb with grief and a bit unable to talk about it anymore. It seems like so many tragic and painful things that a little thing isn't so much worth worrying about too. You decribe very well how I feel.

Can i ask what happenned to you Springdaffs? Although understand if you don't want to talk.

Ah I got your pm springy

Hello mysteryoflilfe,

very sorry to hear you are suffering like this. :( I want to say more and will do so.

There was a previous poster with a similar story, so can I check if you are the same person? We had a thread about boundaries and whether to give the family GP leaflets on head injury. I directed the OP to Headway and some other resources. The OP called me an angel and I said my partner had laughed at this because 'angels would do more housework'. Is that you?

Just wanted to know if it was you before I give the wisdom ;)

Yes that was me. I actually deleted the account so didn't remember the username but that was me. I did send him the headways stuff by post (not his Mum who didn't wan to listen) and he eventually read it and realised it fit and explained how he was feeling. Thanks again for the help back then you really were an angel.

hey, so glad it is you! Was wondering what had happened so glad you came back.

Loving my angel status!

I'm so sorry you are still going through this, as springydaffs as said above, it such a complicated form of grief because he is still alive. I do agree you should be demanding more support from people. Now everyone knows what is wrong, they should be adjusting to supporting you (differently).

I just wanted to post some things, but with some disclaimers first. I wasn't sure if it would help you

disclaimers

• everyone knows to take concern about taking (medical) advice off the internet
• I need to emphasis that it is not your job to do this for him, you have been through enough and have to look after yourself

If you ex wanted to 'heal himself' there are many avenues he could look into. He is advantaged that the internet affords access to a lot of information/ support/ academic articles, but he is disadvantaged in that he would have to be highly motivated to find the information and do the work himself.

It is academically accepted that the brain is fluid and you can now improve results for brain injury, but the study of neuro is still really at stage 1. There have been vast improvements in our knowledge of brain injury/ brain plasticity in the last five years. Unfortunately, we are still at an early stage so this information has not filtered properly into the NHS, public knowledge or treatment. Because our brains are so individual he would need to find his own treatment plan (devise his own exercises) and be highly self-motivated in treating himself.

There are groups of people online, who are starting to use academic peer-reviewed journals, other online bloggers, self-devised exercises and constant re-thinking to treat themselves.

Your ex could use some of this information, if he is of the following character:

1. comfortable negotiating the NHS. Willing to stand up to doctors (as Headway will tell you they are still preaching the wrong message that brain injury is fixed/permanent - they are wrong) and willing to completely ignore people who tell him this can't be fixed. Comfortable asserting access to extremely senior consultants. I appreciate it is hard telling medical staff they are wrong, but they really are. Medicine is evolving all the time and it is impossible for a GP to be fully up to date on everything.
2. bloody minded - I can't emphasis this enough. It will be incredibly hard, especially when everyone will be saying there is no hope
3. Able to read peer-reviewed academic journals and apply this to his own healing (this will include having the skill to visit different disciplines and assimilate teaching and fill in his own gaps - disciplines which might help him include neuro work in medicine/ sports psychology/ trauma/ PTSD). So he would need to be highly resourceful. This is made even more complicated with depression when you don't want to do anything. This is why treatment is on a person-by-person basis. Confident that through his own reading he will end up knowing a lot more about his condition than many medically-trained people.
4. Willing to access the online support community, take their advice and adapt it for his own uses. Confidence to disregard information that doesn't fit. Willingness to make own decisions on what times are appropriate for supportive medication (e.g. antidepressants), there are mixed views online and he would need to be confident making his own decisions
5. Willing to deal with extreme upset, exhaustion, anger, frustration, and regular set backs. Able to push through this regardless. For example, you might have noticed when he is tired the symptoms will be worse. This is when the literature advises he does exercises, which is so exhausting and upsetting.
6. Willingness to devise his own exercises, revise them and adapt them as he progresses. Willingness to change diet to keep blood sugar levels constant.
7. Bloody-minded
8. Bloody-minded
9. Really bloody-minded

I feel sad that he is depressed because he has been told this can't be fixed.

I can't overemphasis how hard it will be. How painful, upsetting, demoralising and he will have to pick himself up again and again.

But I promise you, his brain is fluid, he can improve, and he can find information now to help him heal. In my opinion he shouldn't give up or take no for an answer.

But unfortunately, this is his journey to take. No one can do it for him.