My wife suffered an abi in March 2011 as a result of bacterial meningitis and vasculitis. She was comatose for a few weeks and in hospital for more than 3 months.
Her personality changed in various ways, primarily a lack of motivation, but also poor planning, problem solving and memory. She had a good professional job but does not work now.
Since then I have tolerated a great deal of nastiness and aggression, a bit of violence, and an enormous amount of being taken utterly for granted. She is frequently irrational and unreasonable, which I find particularly difficult to bear. All this has taken its toll on our relationship and my feelings for her.
She does not accept the changes that have happened to her. She resents bitterly her lack of independence and dependence on me, which I think explains her unwillingness to accept my contribution. Overall she has an extremely negative view of me, and twists whatever I say to fit this viewpoint.
She drinks a lot. Tonight she came back at 1900 from helping at a school disco with our two daughters. She was legless, barely able to support her weight. The girls, 5 and 7, get upset when mummy is 'wobbly'.
We're having couples therapy but she's closed to even the slightest suggestion that she might have done something not quite right. She had private psychotherapy for 6months to no effect whatsoever - actually a negative effect, probable because she wasn't being honest. I sacked the therapist.
I'm tired of being the engine of the house. I'm tired of being overlooked, of being the bottom of the pile. It tired of the drunkenness and the embarrassment. How is it possible to love someone who brings nothing but all this grief after this amount of time?
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Ulysses
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What a difficult question, it's very difficult to live with me too. I resented not being able to be me, to being dependant for others for everything but not being able to do anything about it. It's horrible to feel so very lost when everyone is just doing normal everyday stuff whenever and where ever they choose. I could not see a way forward because I could not look forward, to plan a future. I still can't plan. I find a structured daily plan easier to cope with . I don't deal we'll with changes either. My other half wants to go to Ireland next year for a long weekend but I can't get excited or enthused be ause I can't put myself there. I can't see myself into next week. It drives him round the twist because it seems I'm not interested. I just can't think further ahead than today and tomorrow.
My children find it hard too. I can be very hurtful and rude but I can't stop the thoughts from being words. If someone or something annoys me I can't just ignore it or think one thing and say another. I don't actively want to be hurtful but it is not possible for me to stop it. That is something I try very hard not to do, if I'm tired and very irretible then I'm short tempered. I hate it so much. It makes me feel awful. Most of the time the words are out and I'm not aware unless someone reacts to what I say. Then I feel like crap and get angry and the vicious circle starts all over. I feel like an embarrassment and burden.
My family are still with me luckily. He has his fishing and birds of prey and days with his friends which I think keeps him sane.
This is just to say I understand it is hard. I realise how hard it can be. I hope you are able to find the right thing for you for future.
Thank you for your response, I really appreciate your time.
You say you resented not being 'you'. Does this imply that you've now come to terms with who you now are? How did you come to this point if so? I'm genuinely not sure my wife has the cognitive ability to come to this realisation, but even if she did, she certainly has no desire to right now. I've often said to her that in order to be happy she has to accept who she is. I would be interested in your thoughts on this statement.
I'm sympathetic about your inability to prospect, but at least you seem to recognise this. It sounds like you're happy to go with whatever your partner decides, which I could accept - it would be like my wife effectively accepting that I'm in charge. But my wife wants to think like she still has the level of say she used to have, but without actually contributing. There's a dissonance between what she thinks she should be capable of and what she can actually do, which she resolves by ignoring reality. She puts up a huge front with everyone, me included, although many of her friends can see through it, and of course it's transparent to me.
I understand how this is rooted in vulnerability, but it creates a huge gap between us. Are you open with your partner about your abilities? Your fears? Were you always? Do you feel any shame about yourself? Did you ever?
It's interesting that you use the word 'burden'. The word is loaded with negative connotations. But the reality of our situation is that I *am* carrying her, it is part of what she must accept. To ignore this, as she does, is to ignore my contribution. Doing so is what has caused the resentment and bitterness in me that has now overflowed. How would you suggest I talk to her about this in such a way that she might respond more openly?
I've often thought that the impulse control that she lacks, and which you describe so heartbreakingly, is a child-like quality. I hope you're not insulted, it's just an honest observation. It would be easier for all of us if she could accept this shift - from partners to parent-child. Of course, this stings her pride too much to accept. Neither of us want it, but it's our reality. She wants to be indulged like a child whilst maintaining the illusion of maturity, which leaves me taken for granted, overlooked, needs irrelevant.
I'm glad you acknowledge your partner's need for space. The first thing the literature about carers talks about is the need to look after yourself. I take the time I need to stay sane, but she does not give it. Just the opposite, she gives me a really hard time about it. She hates the idea that she is my responsibility when we're together, and that therefore I cannot relax. Our evenings our only ever end one way: with me propping her up, saying "yes dear, no dear" a lot as she gets teary, then abusive.
The right thing for my future is a deep question. She deserves compassion, and, of course, I am obligated. And there are the children to think about. Where do my needs, let alone hopes fit in?
Losing your old wife is a grieving process. The resentment and anger is normal but most people feel too scared of a social backlash to voice their real feelings. I think you have been very brave to do so.
I'm glad you have because it will make it easier for others to speak openly.
I had np idea how my family were affected for years, it was when someone gave me a book about a car program man that had an accident. It gave a viewpoint of the man then his wife, friends and family. Upto that point it was my accident, my injury, me who was struggling whilst everyone plodded on.
I couldn't see how I had changed apart from the practical stuff like planning so there was nothing for me to acknowledge, acceptance was the hardest thing. I was so stuck in trying to prove to the world I was still responsible reliable intelligent normal that I had no energy to actually work with the tools I had been given. My diary is both past memory and future planning, but if I don't look at it then its useless. If I am busy and get distracted and things go awry then I am genuinely lost and I get angry and frustrated, if someone gives me a set of keys and instructions to do a job, then I lose the keys I get panicked at the loss, then angry at me being so stupid and then I would lash out at who ever gave me the keys. Why did you give them too me, I can't be trusted, I. Not a responsible person. You know my difficulty. Etc. then the self loathing, I'm stupid irresponsible untrustworthy a burden etc.
so I suppose I can say that after 4-6 yrs there was a level of acceptance, but its still there to bite me in the butt when things go wrong.
I don't just go along with everything my other half says. I think I do have an input. I think sometimes that he gives me ideas which I can chose from. I can be impulsive and not think things through so he will talk me through. I say talk but this can be like trying to argue black is white.
As a couple we make decisions we always did. Even if my input is just agreement I feel part of the decision there of course times when I can't make a choice, it's pie in the sky or irrelevant but I push and push because I gt things stuck in my head and go around in circles.
I understand that you find it difficult to carry your wife and family without acknowledgement from her or other people. When I was able to understand that this was the case it made me angry that he wanted whistles and bells for doing something I did day in day out since the first baby was born, I completely omitted the fact that he was also inputting both financially and investing time and emotion too. It was like I was feeling bad enough trying to make myself get better without someone who was fit and well moaning about it. I could not see his perspective at all, I still get angry at this because if the tables were turned would he expect me to complain and give up? So yes we are still working through these things!
The child like impulses....not insulted, it is what it is. We are still adults, we gained adult status and entered a partnership as an adult. I would never knowingly be treated anything other than at a partner level. I would not want a child-parent relationship. Even if it is not equal there should still be that partnership. How will the children accept that although mum is broken and different, she is still mum.
I'm not sure if you have been to see a counsellor for the kids but I would very highly recommend it. Mine had an advocate too. It gives them space to deal with the changes too.
I think this is why my kids see me as a teen in an adult body.
I was speaking with my daughter about this, she carried a lot of guilty feelings about the after effects of the accident, she felt co pulsed to care for me and her brothers and Alan too, then she found it harder when the roles were taken from her as I was getting better. No one asked her and she put a lot of time and energy into being the best and feeling let down when we argued or dinner burned or whatever because she felt she should have been doing more to watch what I was doing. I just wished she had told her counsellors this was the case. It's something else I felt guilty for even though I had no knowledge or control to change it.
Please don't feel like I'm judging you because I'm not, we are all different. What was right for my family might not be for yours. My m-in-law and f-in-law are living separately due to the effects of Alzheimer's, they see each other daily but the stress has gone and both are coping better. My mum and dad separated for a few months before he died of a brain tumour 4 years ago, she could not cope with his challenging behaviour. They were together for meals, family days etc. and she stayed at the hospice when he was in his last days. Outsiders gave her a hard time for the split but it was the right thing for them to both be together and not have resentful feelings.
Thank you so much for this. I decided very early on that it was essential to be honest. I feel no shame for what's happened and I talk with just about everyone about it. You never really know where some good advice might come from. I've also learned that if you scratch the surface of most people's lives you find some tragedy. Everyone has a story.
I also don't feel like you're judging me. I had a conversation with a friend last week who was calling me out for being harsh. I said to her that I really appreciated her directness: a lot of people would never risk that breach - would never risk the friendship. The friends you need the most are the ones who are willing to tell you things that you don't want to hear.
I haven't grieved for the loss. Most of the time I don't feel it, probably out of pragmatic necessity. But every few weeks something will happen to make me aware that the pain is there - a friend's father dies; I hear her old voicemail announcement. I've just started therapy myself and maybe there will be some catharsis there for me.
The way you describe your viewpoint seems very similar to my wife. I see it as inconsistent, irrational and unfair. I'm a pretty rational guy myself so I find it particularly hard to deal with when she behaves unpredictably, or refuses to reason.
It's interesting what you say about your daughter's role lessening as you recovered, and how she felt about it. It has often occurred to me that some of the stress between my wife and I could be cast as a power struggle as her abilities slowly improve. She was dominant in the partnership before and this loss of control is very difficult for her to deal with. Do you, or did you feel like you were being patronised? She feels that way about me.
I've tried to give her back some independence - I give her an allowance (although I recognise that this itself is paternalistic), and I really don't control what she does at all - even the drink (although she knows how I feel about it). But she's not interested in domestic responsibility. In a strange way I think she's snobby about it. She also refuses to volunteer for a charity shop, which the OTs recommended as a good starting point for recovery, for the same reason.
When I read what you wrote about your parents I think 'bravo' for your Mum. To make this decision in spite of the criticism it would expose her to: it's a decision *for* her rather than for anyone else. I've looked truthfully into my heart and I don't want to leave. I never have. But I have changed too: I'm more assertive and self directed. We must come to new terms if we are to reconcile.
Yes to be honest I did feel patronised, I'm not sure I recognised it as such at the time tho. I did have feeling of wanting to be treated like a grown up, but I couldn't manage it. In retrospect I don't think it would have mattered what was said because I was struggling to find my way, understanding everything anyway but I did lash out. Can't do right for doing wrong.
I don't know about your wives lack of interest in domestic tasks. I couldn't see that things needed done. I had every intention of doing things but I'd exhaust myself thinking about how to do it. You might say clean the kitchen, I might spend hours looking at the kitchen not knowing how to start the task, get distracted get tired and feel like I'd done a days work whilst accomplishing nothing more than thinking about how and where to start.
I was against charity shop work for a long time. I used to work in air traffic control, why would I want to work for nothing in a shop? Trying to speak to people I didn't know, which in its self was a terrifying prospect. It took me longer than normal folk to process what people said and I had difficulty word finding so I avoided speaking and being social as much as I could.
Two years ago I volunteered an hour a week listening to small infant children read. I needed a day to recover from this! I very gradually increased this and I was offered a paid position for one hour a day. I never did go to a shop to volunteer.
Small children don't expect you to behave a certain way, the writing is big, the words are simple, it was in short bursts and it was a relitivley quiet activity.
There ar many ways to volunteer, I hated thinking I was a scivvy, working for nothing, not improving mine or my families situation, it took a while to get over this. I'm grateful now tho because I have a paid job, part time bu to me it feels more like full time and more!
What you say about starting jobs is interesting. In the psychometric tests my wife rated poorly in a quality called initiation. This is pretty much exactly what you describe: getting going, forward planning, problem solving. And all life is a problem of one sort or another to solve.
It's also interesting that you say you hated the idea of working for nothing ..."not improving mine or my family's situation". You're obviously sensitive to the idea that you contributed before you were ill, and that, at that point in your recovery at least, you weren't capable of doing so. My wife is hyper sensitive to this. We're lucky that I've a good enough job for us to be comfortable on one salary, but she obviously derived identity and status from her job and ability to contribute. It's another thing she's lost. I can't really see how I can help with that.
From your descriptions, you've definitely been more severely affected than my wife. Massive kudos to you for pushing yourself to do all of these things that you find uncomfortable and tiring. Can you ever see yourself in the old job?
I wasn't affected badly really, just taken awhile to be me rather than trying to be something I once was. I think I'm functioning well most of the time. I was very very lost, confusion ruled and fatigue was consuming. I feel more in control than I have ever been. This is also the first time I've been completely open to a stranger, I actually feel better for it!
I'm glad you feel a bit better. Being honest is good therapy
I've just re-read all your answers and want to thank you for taking the time. It's the hardest thing in the world to see my own situation objectively, so it's incredibly valuable to see your perspective in an impartial way.
I think the book to which you refer, may be by Richard Hammond; presenter of Top Gear. His book is a book of two halves; his account and then his wife Mindy's perspective regarding the car crash, his injuries and his road to recovery. Sorry, no pun intended!
i say this to everyone, and its not easy, its not personal, i was vile to everyone for quite some time and i have no idea how my wife stood by me
it was only cognitive behavioural therapy that made a difference with me, all the other therapists haf little effect
alcohol and a brain injury is never going to be a good combination, so getting her to stop or cu down is probably your best first step, how i dont know?
we are very selfish when we have a brain injury, we have to be so we can remain in control
i am sorry to say this but 2 years is a very short time when it comes to brain injury, things will get better, especially of you get her to stop drinking .
my relationship has nearly self exploded and its hard when there is no one to blame, i am a different person, my wife is a different person because of my memory loss you have to sort of learn to love each other again
i would suggest CBT if you can get it, i had 4 years of it and it made me a better person, it doesn't get rid of your issues, it sort of teaches you to deal with them better especially the aggression, anger and aggression is very common, and i say again i know its not easy but non of my nastiness was personal, i had no idea i was being like that,
so the reason she cant take responsibility for her actions is that she may not realise she is doing it, even when you tell her
finding a therapist you can open up to is hard, dont forget you have to tell them your deepest darkest secrets and some of them may not be pleasant so you have to be comfortable and trust that person 100%
i wish i could offer you better advice
but remember headway offers carers support too, and you can get a carers assessment from social services as well as an assessment for your wife
Thanks for this B. CBT has been suggested to me as an option. One of the reasons I think the traditional psychotherapy failed is that she didn't 'own' it - I found the therapist, arranged it all. It's all so expensive that it's hard for me to consider the same thing again, but she simply would never sort it herself. I think she regards therapy as an admission of failure, and this is anathema to her - now and before she was ill.
She said to me in one of her rare moments of openness in the last year that drinking is something she can control. I'm really not sure if this is actually honest ... she could be using a lever she knew I would respond to to justify her continued drinking. Alcohol is addictive after all. But she doesn't acknowledge it as a problem at all. It is perhaps the most difficult part of all of this.
I didn't know Headway supported carers - that's buried in the site I now see. Thanks - I'll look into it.
i had been through a lot prior to my accident and always picked myself up and brushed myself off and got on with life, i thought psychiatrist and counselling were made up jobs,
then bam, my world changed, i was in a confused state for many years so pretty much attended wherever i was sent.
Control is such an important factor of brain injury, many of us plan our days and every aspect of our life so we can be safe or just so we can function,
i can tell you something we will say whatever we need to say to not confront certain issue, as the pain is to great, i just smile now put on a happy face and say i am fine and when asked briefly tell people an overview of what happened as if it was a third party, so i dont have to deal with it or think it is real .
alcohol is never going to be good with a brain injury
i can have one pint and total lose my reasoning ability other times not so much, but i can usually tell after having about one quarter of a pint (i drink slowly and only have about 1 pint a month these days)
is there any way you could get her to join here? we can talk more openly to her than a close family member, you could delete this topic if you didn't want her to see it and we could help however we could, just message us if needs be.
if you have anything you need to ask just ask, we are all honest and open here
Thanks, especially for the alcohol factsheet. I've sent the link to my wife, and I've also spent a while going over the other factsheets.
She has a strangely non-linear response to alcohol - she can drink a bottle of wine and I can just barely tell, but more than about 1.5 bottles and she crashes completely. But she won't remember it and doesn't acknowledge it at all.
Everyone - doctors, consultants - has told her not to drink at all, or at the most 1 glass on a Friday night, so she knows intellectually what she should do. So it's an emotional need the drink is fulfilling.
Our couples therapist has encouraged me to put her in touch with people like her, so I'll suggest she check this place out. Thanks for pointing out that I can delete the thread. I will probably do that when the time comes.
Hats of to you my ex partner lasted 4 weeks once the hospital let me into the wild sorry out he took solace in Facebook and the stupid half witted women on there he been doing this for 4 years he fools himself into thinking he loves them but as the month go by he get creepy trying to mould them into my old personality I still live with him I don't care what he does just keep it away from they say I have brain damage but my point being I was exactly like you wife still am but without the drink but without memory you can't formulate plans it's hard but perhaps you need a break I don't know what the answer is but your wife abi I is still in its infancy and it does sound like she is using you as a crutch don't know if this help,
Thanks lew-ann, it really does help to see the perspective from the other side - I appreciate your comment.
It's mindblowing that you have come to this sort of tacit agreement. For me the memory of a sex life is fading along with the memories of who she used to be. She has accused me of an affair, which I haven't had. It's been an incredibly destructive part of this. I think it was easier for her to hang the distance between us on an affair, rather than accept that it was her behaviour I couldn't stand.
It doesn't sound as if you're happy with your situation. What do you want for your life?
It is hard to hear that 2.5 years of recovery is still so little. The consultant told me whilst she was still in hospital "Give it 2 years, and any deficit after that is probably permanent."
It would be interesting to know everyone's thoughts on this.
it took me about 8 years to get to where i am now (remember every brain injury is different)
getting the right therapy early is the key, i would get your consultan or GP to refer her for CBT as soon as possible *(the waiting list tends to be long)
2.5 years is nothing I'm coming up over 4 years could tell you exact can remember a darn thing, my ex tried to get me extra help I well he was offered for me to stay in a purpose built accommodation or should I say, so I could 'get used to things' good job I really kicked off so he said it might be a bad idea ,I'm surprised I didn't get sectioned there and then, anyway it did turn out he had invited his w****e to stay because I had no memory of this girl they tried to make out she was one of my friends staying to help me (95% of my memory wiped short term memory of 30 sec recall the fade to northing) nice people to be around
he didn't try and put me at ease he never told me everything was going to be alright never cuddled me to reassure, nothing he told lie after lie and segregated me from the world he not a nice person, but thanks to him I managed to get myself together best anyone can you don't fully recover there are traits of my old personality there gone and I can't get them back many parts of my brain were switched off the ones I got back I had to fight for the other after 4 year will never be there again I accept that ,but still fight everyday to control that every month that goes by it doesn't get better I just find more way to get round it and I would say your consult was right after 2.5 year it's more established there plenty on here that can verify that
sorry I didn't reply yesterday, I was or should I say Morrison shoppers had to brave me it wasn't to bad on a couple miner incidence's opps
It sounds like he is, or at least *has* taken advantage of your memory problems. This is a vile thing to do. My wife often accuses me of doing so because, I think, it's an easier thing to believe than to accept she is weak in this way. My conscience is clear, honestly.
But you writing that he didn't tell you everything was going to be alright, and that he never cuddled you stings me. Exactly this is the only accusation my wife makes to me which is true. I did say and do these things when she first came out of hospital, but as the resentment built up, the desire to show affection has shrunk and shrunk.
She blames this for her drinking. But if I didn't resent her lack of acknowledgement I would never have stopped treating her warmly. That's the line of causality. Perhaps it's childish of me, perhaps it's human of me. I'd appreciate your thoughts on this.
Don't apologise to me or anyone else for how or when you reply, how you behave or who you are. I very much appreciate you taking the time.
I hope you sort it with your wife just hang in there, his vile behaviour actually helped me in a perverse sort of way it took a long time to but I had to do it myself, having to find ways to remember the lies he told and everyone else told me, at least I now know who my genuine friends are but my old personality is there somewhere
do you what! there where times I wanted to drink but I can't even if I wanted to I only have to sniff a glass of wine and people think I'm paraletic slurred speech from my tracheostomy and lack of balance, I set my self little goals as I can only concentrate on one thing at a time now, but my little things turn into huge things and targets just to prove to myself It can be very frustrating, but I do it but it was well over two years before I could even think straight i still can't multi task so give it time it's only early.
as time passed by I needed hugs less and less, lack of feeling I don't know something switched off including the need for hugs
the trouble is the longer it goes on, the bigger the chance you'll prove her right, if you get that.
I'm sorry you've learned to get by without the tenderness. What reasons do you think he would give for treating you this way?
In our situation I honestly think it's my wife that sets the emotional agenda between us. In fact it's always been this way, since before she was ill. If she wasn't happy, I had to be unhappy. One of the strange side effects of this experience is that it has given me some perspective on our relationship before. We got on well enough and functioned well as a couple, but there were some small issues where she didn't really treat me right. As I said, she was the dominant partner. I won't go back to that - I've changed a lot and I actually prefer myself now. Like I said before, we need to come to new terms, but I just don't think she's capable of understanding this yet.
You mention slurred speech, because of a tracheostomy. I'd never thought of that as the reason for my slurred speech, but I see it is. Of course, that makes perfect sense - my rehab hospital had a big SaLT group, and I guess the tracheostomy tubes people had had were the reason.
I am a university lecturer (which I had to have 18 months off - thankfully, they did agree to me going back, after that. They gave me a couple of months to 'test' me, before they agreed to let me stay), so my speech clearly doesn't sound too bad to everyone else, but it still sounds horrible to me! I thought it was a brain problem, not a throat problem. Oh well, that tracheostomy probably saved my life, so I will put up with the scar and the slurring, without complaining!
the muscle kinda give up after a long day so when tired the voice takes a nose dive and takes the brain with it, so on a really bad day you can sound like a drunk sometimes its not so bad I just avoid phone calls I get fed up with sorry, what, pardon I didn't quite catch that mmm from the other end ditto about the scar people don't tend to notice but it was kinda funny I brook down once a police car passed and turned round (late at night dark back road) anyway they pulled up and because i couldn't open the window I opened the door so imagine me slurring and getting my words mixed up, there first question 'have you been drinking ' I just flashed him the scar lol that was the end of that i'm just glad he never asked me to get out the car lmao
It's hard with children too, I had 3 under8 . Can you imagine how hurtful it is when your mother tells you to shut the fxck up or get out of my face. I had no control. I was worse at end of day. I have seen the video, it is horrific.
I can't drink, 2 glasses and I'm mullered ! Mind you when I'm worn out I could pass for drunk, slurred speech and balance shot.
My daughter is now 18, she says it is like we're lodgers that share a bed. It's not like that for me though. I'm just not all smushy, I suppose if you looked from outside in then it would seem like I'm more interested in me. It just takes so much of me completing my daily tasks there is not much time for anything but sleep.
We don't sit as a family all night, the kids have clubs and orchestras and bikes and music to occupy them in the evenings. They are all very independent because they hav had to be. They say its like having a teenager in a mums body! Stroppy and impulsive, running hot and cold in an instant and sleeping enough to challenge a sloth. I love my children very much, I love. Alan too, I love my mum but they all have said I've pushed them to the limits and more, they love me but not always like me very much.
Alan used to say I'd have an argument in an empty room and still not give in. That I should drive tractors in big empty fields for a job because of my insistence I was right and everyone else was wrong, there would be no one to argue and I'd be abl to see what I'd done and what I needed to do.
I have gotten better over time, I'm not explosive constantly but when I'm stressed and tired I'm still unpredictable.
I don't think I was able to get over my brain injury acceptance for many years.
It's very scary not feeling in control of yourself. Not feeling safe out of your four walls but being hemmed in by the same four walls. Not being allowed to do simple things like having a bath when you want one, needing someone there for safety. Needing a brew and not being able to make it is frustrating and scary an you still need a drink. Frustration and fear will it ever get better.
It's good to hear what it's like from your point of view because until a few years after my accident I wasn't able to comprehend that it affected anyone, including me.
Many of your comments apply exactly to my wife. Not accepting she's in the wrong when there's just no logical space to do otherwise is a massive source of the distance between us. She's broken my nose rather than accept she was wrong. Should I just indulge her like a child? What would you prefer?
A teenager is about right - I think about age 14. My god, the strategies I've used to try and get her to get up in the morning.
Your thoughts on 'love but not like' are interesting. On request of our couples therapist we wrote letters to each other. Hers was so warm, but utterly at odds with how she speaks and behaves towards me. Mind boggling. What am I to think when she writes that she loves me, but never ever expresses it - never exposes that vulnerability.
How long did it take you to get over your injury? What helped you come to this position? How long has it been?
It's also interesting to hear that you could not comprehend that it affected anyone else. Some of the most hurtful things my wife has said have been statements like "it's alright for you, nothing has changed for you". It's a kind of pure, non-malign selfishness. She just can't see it.
And thank you for replying, I really do appreciate it.
Imagine if you can, you are the driver of your life. You decide which route to take how fast to go how far you'd like to go, where you might like to stop off for a quick visit. Mindful of time and other responsibility social conformity and acceptance of your peers for your journey, the need to take it and the goal you wish to achieve.
You spend your teens being told that you must work hard to get the most from this journey. You make mistakes along the way but that is owned by you, your mistake your choices your consequences. You accept it and learn from it and move on from it mindful to be cautious not to step back there.
Now try to imagine after 20 + years of this one day you are a passenger and there are many drivers, all wanting you to reach an impossible place, telling you your every move, no more choice, you are told by one person to do a then the next day another person says we need to go to this magical place via b. then the next driver says you can't get to a or b without me because you can't make a decision.
Crist it's impossible. You don't know what he heck they ar speaking of, where or how to get where they want, you can see everyone still driving along on their journey. You want that back so much you demand that back but it is denied. You are broken. That its when you fight, to regain that control.
After 8 years I can't be the driver but there are less people telling me when and where to go. I get choices, I get some control back.
It will be ten years in Feb. There is still driver assistance , my sat nav if you like. But I can decide a b or c. My back up do the route plans the timings the nif naf, but were driving the same place together, he's got my back.
I'm still wanting to be that other person where everything just happened and easily too. I would give every last penny to have my old brain back for a while. It just took a while.....like about our years or more to see it wasn't happening!
I haven't given my wife any goals or targets. I have a small list of things I'd like her to do in the week - 2 loads of laundry is the biggest task, but she rarely gets around to it. I think sometimes that she could use more direction from me, but you seem to argue against this.
I really don't like hearing about these sorts of timescales. It would be interesting to get a sense of how my wife's injuries compare with yours to frame the timescale, but that's not possible.
Control is an interesting area to explore. Perhaps I'll simply ask her: what does she want to be in control of?
Hi!
I can't really add a great deal to this discussion because most things have been said. I am 'the carer' too; my husband having an ABI, but we are much further down the line than you. It has been over 20 years since my husband contracted encephalitis; resulting in the ABI.
You need to be good to yourself. Don't feel guilty. Go and do something just for you. The ABI has changed your wife and inevitably it changes you and your family. How have your extended family and friends reacted to your situation? Do you have any support? I guess there will be times when you feel isolated. It may help to get in touch with your local Carers Centre, where there are others, who will genuinely understand your situation. You need understanding friends; non judgemental and prepared to help you out if/when you need it. Without me asking, my neighbour mowed the grass for me. At first, I saw this as some sort of intrusion/indication that I was failing, but now I accept the help in the spirit it is offered.
Sadly, I don't have a 'blue print' to offer you. ABI's and TBI's affect people differently; that's the nature of the beast I'm afraid. We've spent a long time over the years 'trial and error' and I've had to become a lot more laid back. I can only do what I can do. I am not superwoman. I need food and sleep. I need to be me!
Thanks for this. I do actually look after myself reasonably well, in terms of getting out, seeing my friends etc. My wife sees some of this as excluding her, which is actually true, but she doesn't appreciate that I need to be responsibility free for just a little while every month or so. So there's a price to pay for my 'selfish' time, but I refuse to be controlled emotionally in this way.
Family support has, unfortunately, been effectively non-existent. Her sister lives locally, but had her first baby just after my wife fell ill, and has not provided any support. This is understandable. Her parents are a differernt story. I reached out to them about a year ago when I finally conceded to myself that the relationship was beyond my ability to repair. Her father said "it would be easier for someone who was closer by to help". This surprised me, but they're old people and probably can't cope with the idea of it all, so I let it go. They visited yesterday, and I brought it all up again: the drinking, the violence, the intertia. That was the first time we'd discussed it in the entire intervening year. Mind boggling.
My parents live 5hrs away and visit rarely.
Anyway, thanks for posting and keep doing whatever you need to do to preserve your identity.
HI , my heart goes out to you . my son now 17 had bacterial meningitis as a baby and a stroke after and anger and rudeness has been prevelant all his life ,he is now classed as autistic so never sees my point of view , I can remember one year having flu and he constantly kicked my bed telling me I was lazy. he is now in a residential school . I have some friends with partners with a.b.i.also and all our stories are different . we found support through Headway . and learned that we have rights as carers ..I am exhausted by fighting and bringing up two kids on my own with the lack of support for brain injury ...however THE meningitis trust offer a lot of support ....called Meningitis now ....you may have tried to get support from these , but if not do trust them . it is SOOOO harrd for you , and like my son , your wife may not have the ability now to see things from your point of view. Can't imagine how hard it must be .... if she doesn't recognise that she can access help then it would be good for you too ...if possible . It's good you can offload on here , that will give you a sounding board at least ... if you have the time ...remember none of you chose to be in this position and that you are all human beings ...( if you see what I mean) worry I may offend but notmeant to
I'm not really sure what you think I might be offended by, but let me reassure you that I value directness. I invite everyone to call me out if you think I'm being harsh or if you don't agree with me. It's the sting we want to avoid that offers the most potential for growth.
I'm sorry about your son. Impulse control is a higher function developmentally, so it makes sense that it's stripped away in many ABI cases. My wife has got slightly better at controlling her temper. She gets her rage face on and draws back her fist, but it's rare for her to strike these days. One of my problems is that it looks so preposterous that sometime I can't help smiling, which, of course, is like pouring petrol onto her fire. Sorry dearest, I don't mean to.
My wife has been in touch with the meningitis trust. They gave her the details of someone who was a couple of years ahead in recovery. My wife never called. Perhaps I will prod her to do so. How did they support you?
Thanks for your comment.
Hi! I can tell by the tone of your posts that you are disheartened and probably grieving for the 'old' wife and the life you had planned. Your hopes and dreams are dashed. Do you have a career or has your situation affected this too? Have you been assessed by Social Services as a Carer? Apologies, I do not wish to intrude.
The situation with your extended family is not uncommon. My husband's parents also live 5 hours away. They have never understood. My mother in law has a tendency to 'make a mountain of a mole hill', so we don't tell them too much about the difficulties. Their idea of help would just add to my responsibilities.
There are many people here in similar situations, offering 'an ear' and support. You are not alone.
Thanks for your support W. We did qualify for some benefits, but those have mostly dried up. Fortunately my job covers us and keeps us more or less comfortable, but it's a bit worrying that everyone's dependent on me. I have critical illness cover just in case.
Yes, there's comes a point where we stop regarding our parents as help, and come to regard them as people to be indulged. I've definitely done this with my wife's parents. Not exactly how the support is supposed to flow...
Thank you for your post. The situation you describe is certainly not uncommon as you know, and the honest and open replies on here certainly highlight how difficult it is to deal with the massive changes brain injury can cause.
I just wanted to add that there are things that Headway can do to support you here - through our national helpline, publications and our network of local groups and branches, we can do what we can to help.
Can I suggest you get in touch with our helpline on 0808 800 2244 or helpline@headway.org.uk to talk things through?
Thanks headway. I quite like being able to write and reply on my own terms, but I'll call if I change my mind. Local groups would be interesting to me as a carer, but it doesn't look as if you have any where I live. I might think about a London group.
HI , just put hope I didn't offend as I know how different we all are and how tired and sensitive I was and still am some 17 years later !I'm the same , directness is good but many folk don't like it as I've learnt over the years ..good to hear a little progress is being made for you , humour is good to fend off my son's obsessions and sometimes his anger but it's a tricky one ... little treat is well deserved however small , you deserve it..
Humour doesn't really work with my wife. I think she thinks I'm laughing at her, and that can have the opposite of the intended effect, but I know it can work. My brother had a burst anuerism more than 10 years ago and was left with a severe abi (left sided hemiplaegia). He gets his rage on frequently and severely (although I don't believe he's ever hit anyone). Humour works really well with him - it's always been somethoing we've shared.
This thread is brutal in its honesty and I have cried and cringed in equal measure as I have slowly made my way through it.
My TBI was 7 years ago and I can identify with much of what has been said already... the one thing I have not noticed mentioned by anyone else (and it may be that nobody else has felt this or could simply be because I missed it) was this awful feeling that my husband would one day realise just how 'bad' I was/things were and would leave...
and the 'bad' was a confused mix of just how unlike my self I was - I knew I was different but I could not understand how or why, how mixed up and confused I was,I did not what what was real and what was not, I couldn't articulate my feelings, I was easily overwhelmed, my outbursts shocked and shamed me more than anyone else ( when I was aware of them - which was not all the time) ... and I thought I OUGHT to be able to pull it together and I did not understand why I simply could not! I tried to hide the fact that while I knew he was my husband I could not recall his name. I took to avoidance because I thought if I could hide how bad things were then eventually they would right themselves and nobody would be any the wiser. I never believed for a second that the damage could be permanent.
I lost my job and a huge piece of my identity with it. People started asking me "what did you used to be..." I refused to accept that this was my life and as a result things were really difficult.
Acceptance does not come easy and I suspect it never comes fully...it certainly hasn't for me. We have made adjustments. For the most part I exist in my little bubble of the here and now but I still have brief moments of absolute clarity and they rip my heart out every time.
I, my husband and my mother have all had to mourn the loss of me, even though I am clearly not dead and I walk through the world...My mother, who has the total honesty of her advanced years, says this is harder than if I had died.
Things are more settled nowadays but mainly because we have strategies developed over the past few years. It is not easy and I doubt it ever will be. This is not what any of us envisioned our lives would be but we have to find a way to make it work for us. We have to get to to know the new me and we have to grow to like and to love her...its not always easy.
Being open about everything seems to be to make sense. It may not win popularity contests for a while but its a heck of a lot better than sitting on a pot of resentment until the lid blows and everyone gets it.
Thanks for your openness, especially about how different you and your abilities are. My wife has a fatalistic view of our relationship. She's convinced that I'm biding my time until I either meet someone else, force her to leave or kill herself. This is desperately upsetting and completely untrue, but your comments help me to understand her side of it. I've understood for a long time that she hides how bad she is. In her case I think she 'fronts' to avoid accepting what she perceives as a failure: her new self. She doesn't see how behaving according to this worldview alienates us and will help to bring about exactly that which she least wants to happen.
How long did it take for you to begin to accept your new life? What helped you come to this realisation? My wife had a career in fashion. Like you she derived a good chunk of her identity from this; she was a real clothes horse. I've come to understand that fashion is inherently superficial. In that world you judge, and are judged on appearance. It's not a character trait that lends itself to opening up under these circumstances.
Please don't answer if this is upsetting, but what is it about the moments of clarity that rip your heart out? Is it the sense of loss, or loss of potential? Our couples therapist suggested that I haven't accepted the change to her, which is fair. But this experience has actually taught me that I'm pretty adaptable, and I'm ready to accept. But she profoundly doesn't accept herself. I don't think it's possible for me to accept her without her accepting herself. What does everyone think?
What you describe as "mourning the loss of me" has been described to me as ambiguous loss. Here's an article I bookmarked: nytimes.com/2012/01/10/heal...
"...this type of halting progress adds to what they call “ambiguous loss.” Every day, reminders of the damage appear and disappear, and often couples struggle with grief that is never fully resolved and must constantly be reassessed".
I think we can all understand that.
Your mother may say it's harder than if you'd died, but ask her what she would prefer. When my wife was in hospital and I was doing everything at home, managing the children, catering for house guests, visiting every day AND doing my day job, it was easier than it is now. Harder physically but easier psychologically. But if the alternative was for her not to be here, I would choose what I have now.
What strategies would you say you've developed to help settle things? I'm interested in practical tips here
I noticed also that you referred to your 'new self' in the third person. Were you aware of this? If there was one thing I could wish my wife do it would be to look in the mirror and say to herself "well, this is me now."
As for honesty, I never really considered the alternatives. Ignoring reality can only delay acceptance, and I believe acceptance is the route to happiness. Does anyone think otherwise?
How long did it take for you to begin to accept your new life?
it was the CBT (this was about 8 years after my abi, (i had CBT for 4 years) it made my life bearable and i doubt i would be here now if it wasnt for it
i still dont fully accept my new life and fight it constantly, but there is a core acceptance there that allows me some sanity
Moments of clarity:
sometime i see things clearly and i see the pain i have caused others and the pain i go through myself, and all that is lost, because we spend so much time trying to be productive and pretending the past is the past and fighting the negativity but then there is an overwhelming surge of emotions, its as if i cant tell one emotion from the other and its so over powering hat you have to hide back inside yourself.
mourning the loss:
when someone dies, it is a fixed point in time, an instance a happening, its final, you can grieve for that person and eventually move on, and whilst our event of our abi is a fixed point the changes are transient and a constant evermoving reminder of our loss, each day we mourn at some point, even if its a passing thought, but thee effects of abi are so severe that you cannot let it go you cannot fully mourn your loss, everyday is a reminder and the mourning starts again
my coping stratergies come from all the different therapies i had, a bit from here, a bit from there, but the main things i do now, is actively avoid situations which are going to get me angry, its not easy but its what i have to do, also avoid negative people where i can, negative people have a bad effect on me, then when i need to go into my own world i tend to watch movies or mess with photoshop on my computer its all about distraction.
there are obviously things i dont realise i do now that the cbt had taught me, but thats good that i dont realise i do them, it means its worked
again i cant highlight CBT enough
when i talk about my accident i imagine i am describing i as having happened to someone else, because if i don't i will break down as the loss is too great, my wife and i are 17 years on and we have and still are having a tough time, things are slowly getting better because we have
its not easy, but the sooner you get help the sooner things will get better,
I have no short term memory to speak of and so my replies are taken from my journal notes and my blue file (this is a file with a bright blue cover that has copies of all important information – it is a go-to resource and a grab it and go essential for medical appointments etc)
I had often thought I had come to terms with the new me/my new life only to find that was not strictly true. A couple of years post injury the neuro-psychologist suggested that instead of continuing to try to force my way back I should perhaps start to think more about “leading a simple and happy life…” I was furious. As time went on I began to try to convince myself that perhaps this was the answer after all and that if I could not get back my old life I probably should try to make myself a new one… Unfortunately that was easier said than done. It probably took another two years after that before I really started to accept …and I’m not done yet! I remain a work in progress.
I think finding something meaningful to occupy my time was key. My memory issues are a huge problem but they do not exist in isolation and combined with the other cognitive issues it was really hard to find something I could do and that I was happy doing. Practical strategies really helped too as I lose all track of time and find it hard to get started. My world is full of good intentions and bright ideas…
In those "moments of clarity", it is primarily the losses that hurt…the loss of me (the person I was before), the closeness of the relationships I once had and those I still have but that are changed, the lost friendships, lost opportunities, wasted potential… there is also a deep sadness surrounding my happy little bubble life… although we have a life, and we have done some pretty amazing things too, I do not remember any of it and I am reliant on others and on my journal and my notes and strategies and without any of these I do not function well at all. In my moments of clarity I am somehow fully aware of my situation and how it has impacted on those I love and who love me and this makes me unbelievably sad. On one occasion I felt so bad I dialled the Samaritan hotline and when the poor woman answered I sobbed uncontrollably for over 40 minutes, then stopped, thanked her and hung up the phone. It made me feel a whole lot better having let it out. I still have these moments but they are less frequent over time and I do not fight them when they come. I accept them for what they are and I use them to let loose
Acceptance by others was important for me too. My Mother would often tell me how sad she was and how much she wanted her daughter back… as time passed she became less concerned about voicing her thoughts and admitted she no longer felt able to rely on me for support as she had done previously. She was worried that as she grew older I would be less able to support her. Every time she openly mourned the loss of her daughter it made me feel like I was nothing. Eventually I found my voice and I would say excuse me mother I am sitting right here and would point out that I had “lost me” too but that we had to suck it up… eventually she stopped saying it…I’m not sure she stopped feeling it though. My husband on the other hand has been a star. I think it was harder for him as I began to try to rebuild my new life. In the early days it was easier when he had to make decisions and I would not question them but as I struggled for independence it was hard on us both. Having him accept me unconditionally and allow me to struggle sometimes has really helped me to accept myself.
Now we have reached a stage where he will call me on the important stuff – not always at the time if it might make things worse to do so, but he will make sure that it is addressed at a suitable time …and we will shrug off the minor things. Humour has been an essential tool in our armoury.
Strategies… my precious lifelines… I was lucky enough that my GP helped me fight for inclusion on the Memory Aids programme and that was life changing. Following some pretty gruelling assessments they helped with practical gadgets and gizmos for day to day living and taught me to prioritise, streamline and simplify. Forward planning helps tremendously, especially in social situations.
Being able to manage simple day to day things has really helped build up my confidence. I stopped wearing a watch because time meant nothing and I was fed up looking at my watch and immediately forgetting what time it was and so having to look at it again…it was noticeable and people would comment on it so I ditched the watch. I felt better immediately.
That said Gadgets and gizmos…alerts and alarms are my friend. These not only help me to schedule tasks but also to focus. Slow exposure to unfamiliar settings, people etc and having an escape route were vital. It took a while but my husband and mother learned to recognise signs that I was getting overloaded and so we were able to develop strategies to intervene before I reached meltdown point (private meltdowns are bad enough, public ones are a million times worse). Recognising triggers and having plans in place were useful.
YOU SAID: I noticed also that you referred to your 'new self' in the third person. Were you aware of this? If there was one thing I could wish my wife do it would be to look in the mirror and say to herself "well, this is me now."
I had to go back and check what I had written. Yes it was deliberate because I had to get used to “the new me “…and “the new me” was as much a stranger to me as to others.
Sorry this is so long…. It took me ages.
I have been giving this some thought (can you tell) and another thing I thought about was the feeling that nobody understood how what I was going through and /or how I felt. The thing that changed for me and my family was reading a book called "Over My Head" which was written by Claudia L. Osborn...an American doctor who sustained a TBI. I you haven't read it, it may provide another insight.
Thanks so much for this. I really appreciate your time.
I love the idea of a "simple and happy life" as a goal, and I would want the same for my wife and I. Were you furious because you didn't want to give up on hoping to get your old life back? My wife doesn't communicate this sort of thing with me, but I think she's in this mode - looking backwards in hope rather than forwards.
What did you find that was meaningful to do? She volunteers at school a lot, but I get the sense this is a chore for her. Have you found something that you're passionate about?
Thank you for answering my question about loss. I feel all of your reasons, but perhaps "wasted potential" is the one I feel most keenly. I am so sympathetic, my heart goes out to you that you should feel this way.
Good for you, not standing for any mourning of the person you used to be. I'm the exact opposite, telling my wife that she needs to accept the person she now is in order to be happy. This is probably just as detrimental as your mother, in a different way, given that my wife is not ready to accept this.
Re. strategies: perhaps now would be a better time for some occupational therapy. She has some when she came out of hospital which was, in retrospect, completely pointless. She may not be ready even now. I'm glad you've found something that works. My wife says she feels oppressed by to-do lists as they highlight what she hasn't done, so she doesn't bother. And gah! the pain I've gone through to get her to book dates in our shared Google calendar...
Thanks for the book tip - I've ordered it. I'm definitely interested in any other book recommendations folks may have.
I was furious because I was not ready to consider that my old life was truly gone. Although I don't think I ever believed the reassuring murmurs of everyone around me in the early days somewhere deep inside I had clung on to the vague hope that time would eventually heal...that I would be one of the lucky ones and that things would be different for me... Hah! I stretched those time limits to the max...
The looking back thing really does hinder the moving forward but the transition is gradual and very personal and not as obvious as one might expect.
My something meaningful is creative and was stumbled upon by accident. As part of my rehab they thought it might be an idea for me to create a scrapbook of important life events to record the things my memory could no longer retain...But I found it really hard because I had never done anything like that before and had no idea where to start...but from that I did start doing small projects that could be completed in a short space of time and did not require too much thinking about... From there and over the past few years, I have developed skills and interest at my own pace . It really helps for me to have something to show for how I spent my day and I have made and sold things to raise funds for my local Headway group and with the support worker helped run craft sessions with the group members. I can't explain what I do or how to do it but I can do it and show people and help them to do it too.
I get why your wife would be frustrated by lists etc. Anything that stands to remind of us of the things we cannot/did not do just adds to the misery. To do lists didn't work too well for me either...For lots of reasons including (but not limited to)
1.Insufficient information - so for example I may have written "Call Sue" but when I read the note there was not enough information and I would not call Sue because I did not know who Sue was, when I was meant to call her or why. I did not want to risk exposing the level of difficulty I was having with even simple tasks and making an idiot of myself so even if I figured out which Sue I was supposed to call and found the right number, I could not call Sue and ask her why I had a note to call her...so I would not call and hope that if it was important then Sue would call me!!! Neuro team identified that this was an issue but my note taking can still be confounded by my inability to recognise the need to make decent notes because there is no doubt at all I WILL forget.
2. I would read the list of things to do and then get distracted and forget what was on the list OR
3. I would forget to look at the list in the first place
BUT once I had a few strategies in place and began to manage to accomplish teeny tiny tasks my confidence built too and I developed an interest in trying other organisational techniques. I will admit it was not easy and several times I wanted to chuck it all in but I am so glad I persevered. The thing was that nothing worked until it made sense to me and it fit my life.
This is another epic post (who knew I was so chatty ) so I will stop now but happy to elaborate on the processes for finding strategies to suit.
Thanks for your thoughts on clinging on to the hope you'd get better. I've often thought that my wife is deluding herself on this point, and I don't mean that in a critical or detrimental way. I guess it's just too much of a change to accept. It sounds like you were in a similar boat. It's shocking, though, to read that this goes on for so long. I just can't see any hope at the moment, any progress at all.
Finding something meaningful would be great, but I have no idea what that might be. I suspect it would have to come from her anyway.
Re. lists, how incredibly difficult for you. My wife's short term loss doesn't sound nearly as bad as yours, although it does sound like you've had some really good follow-up care. I have not heard of the Memory Aids programme and can't find anything on it. The view on lists from my side is that all those things that she doesn't want to list still need to get done, so it's me that has to do them.
When you realise that you've forgotten something, do you accept it and move on? My wife is a denier, an avoider. She will do anything to avoid accepting she's made a mistake. It's not the memory that's the problem for our relationship, it's not the illness, it's the failure to accept. It pushes us apart.
Hi Ulysses and everyone else, I've come to this thread very late coz I was away last weekend but it has given me much to think about, I have wanted to write but my situation seems so easy to bear compared with others. I am a wife with an abi, I am lucky that my personality has not changed, I am still the same person but I can no longer do the things I used to, I find housework so hard I cannot easily get down on hands and knees, finding things in cupboards and fridges etc so hard, I can look at things and not see them, very frustrating, I could go on and on but everything written here is true, the acceptance, the grieving it is all so hard. I constantly worry my husband will leave me because I am no longer the person I was but that insults him, he told me when i was in the coma he just wanted meback regardless of the consequences, so I never voice it, it is something I need to deal with. I have to remind the family I have changed and of my limitations when they forget, my youngest son, he's 18 now seems to understand me the best, so you see even the family look at me and don't see the injury so you have to forgive all those who don't know you.
It was so hard to get the appeal upheld at the tribunal for ESA, my husband didn't understand why I cried, but I cried cos it made me realise I was never working again, other people did realise my limitations and this was my future.
I have no appetite for sex either something that was a great bond between us so I try very hard and do enjoy it when I do but one of those difficult things to deal with.
One of you said you live in a little bubble, exactly what I do emerging to interact with the family when necessary, but quite content in here even though I feel it is just an existence now, so sad.
Luckily I can still knit and crochet, guess what everyone's getting for Xmas!, time I have plenty of and again luckily the children are all grown up now, but the grandchildren aren't and I have less patience than I used to. I persevere with reading although it means I am half way through a book before I can remember the storyline!!!
I am ok at the cinema, although it is loud, but little patience when watching films at home, it's too easy to be distracted I think.
So many of you will say, what's the problem! Hence why I am only just writing but writing is a catharsis, and I don't know you personally so no harm done. This has helped me although I feel I have not offered any words of wisdom, I wish you all the very best on your journeys, I understand only too well the hurdles we all face, I just hope none of them are insurmountable.
Janet : Most of what you say resonates with me, especially the difficulty with physical tasks. I've recently been renovating an old fireplace.........which prior BI would've been a doddle........but it's taken about five times longer, mainly owing to the 'hands & knees' problem you mentioned. And, yes, the housework has become really difficult.
And the grandchild issue..........I feel so disappointed in my lack of involvement but you and iforget give a spot-on analogy with the 'bubble'..........it really is hard work struggling to get out for a while, and afterwards comes the exhaustion.
I'm taking this opportunity to say how pleased I was to hear about your successful appeal. It's a shame it's such a struggle for everyone, but I hope life will be that much easier without that particular worry hanging over you.
Hope you're coping ok with the miserable weather...........keep knitting kid & I'll crack on with the crosswords ! Love Cat xx
Hi Cat, will send you a pm later, that monologue I wrote has taken it out of me, so difficult to face up to inadequacies isn't it? I'm sure not everyone wants to hear the boring daily rounds, you might not either but you don't have to read. Good to hear from you though Love Janet xxxx
iforget : Just a note to say.........have you noticed that you're not alone with your fear of losing your husband's affection.........Janet has the same concern.
Your comment of people asking 'what did you used to be' really stopped me in my tracks..........a pretty sobering summing-up of who we are today. And your mother's view of the situation is quite heart-breaking.
But we carry on, don't we, working with what we've got and doing the best we can do ?
Sorry it's so late m'dear but only just looked in. Yes it is one hell of a fine old mess, but have you noticed how the dreary weather and dark nights have brought so many of us down ? Time for multiple (gentle) distractions to see us through 'til brighter days. Hope you're feeling OK (ish) at least. Cat x
Thank you Janet, I really appreciate your time and energy.You don't need to justify yourself here or anywhere else. You've provided insight into your condition and my wife's condition, which is why I posted in the first place.
My wife cries a lot. Most of the time I don't understand why, so I ask. All she typically offers is something like "it's all shit, my life is shit". Your explanation about your ESA appeal makes total sense. I wish she would articulate like this. I just want to understand. But she tries to hide what she sees as her failings.
It sounds you have to work to remind your family of how you are rather than the opposite. Was there ever a time when you felt like you had to cover up?
Time is a point of contention in our house. I have so little of it that what she has, from my point of view, is an enormous luxury. And she spends a decent chunk of it on the sofa watching daytime TV. It's hard to see this as anything other than appallingly wasteful. It's hard to accept that this might be all she feels up to.
Hi again, I totally understand your feelings. I spend untold hours in front of the TV and feel I am wasting them too but the spirit is willing but the flesh is weak so I give myself a goal for the day, I have to complete it before about 3pm or there's no chance after. Sometimes it's just sweeping the kitchen floor, if it's ironing I do 6 items at a time and sometimes it's just those 6 items that get done, but I don't feel guilty about it and my husband always says well done bless him. I'm harder onme than anyone else and yes there are still times I cover up.
It must beso hard for your wife but coming to terms is the hardest part, I am trying to channel my energies ( that's a laugh) into other things and having patience is not easy either, I want it to change now!!! So the decorating is slowly getting done, one door a a time, it has taken a week to do the downstairs andno housework during that time.
The best thing that was ever said to me, I didn't think it at the time, was by the consultant at the rehab unit I was in " this may be as good as it gets" very sobering but I remind myself of that comment regularly, we only come this way once and some of us have been given a second chance, we owe it to ourselves and our loved ones to make the most of it. I only have limited years, I'm 60 now, left to do all the things I always wanted to so I'm going to try my damnedest to get them done,feeling sorry for myself doesn't come into it, I deal with that myself or onmy very understanding sister's shoulder.
My heart goes out to you both, you are doing all the right things, hopefully she will come to terms. I was put on antidepressants, only a very low dose, while I was still in the hospital so maybe that has helped, who knows, and I still take them but just 3 days a week now , just enough to take the edge off but not feel too dependant.
Enough of the diatribe now
Look after yourself, I hope I have helped in some little way
This is something I often think about - how did my husband cope? I mean, life was easy for me - I was in a coma, and then hospital for months on end. Yes, I was unhappy, but he was at home, with a toddler and a baby (who I spent months and months wondering why he kept bringing her into hospital - she was lovely, but where was her mum? "Pam, I told you this yesterday - she's ours, *you* are her mum!"), and he had to go to work, etc. etc. It must have been a horrific time for him. OK, his wife wasn't dead, but how much better would I ever get? I am sure he didn't know that I'd go back to my job at the university, and run a couple of marathons (OK, very very slowly, but hey, I finished, and I raised plenty of money for Headway).
I heard somewhere that any improvement would happen in the first two years. Yes. *most* of it did, but I think (or hope?) I am still seeing improvement, in my speech, my vision, and my balance. I still don't remember my second pregnancy at all, or us moving house so we would have room for her. I absolutely adore my 9-year-old now, though. She was 8 months old when I had my accident.
Anyway, I think the others are right, you should insist on some therapy for her (or for both of you). I think improvement can still happen. But I am afraid I think it will need her to really really want that improvement, and to *try*.
Thanks for contributing, Pam, I really appreciate it. In the letter my wife wrote to me at the request of our therapist she said what an amazing job I had done during her time in hospital. It was touching, but she just can't say it to my face. I wonder if she feels dis-empowered or disenfranchised by how well I stepped up. Do you feel your loss of role at all?
Re. marathons: this is incredible. What an achievement. But the job is even more of an achievement. I'm jealous of your husband. Tell him.
Back at the beginning our consultant told us that any deficit after 2 years was probably permanent. My brother is also recovering from an ABI from 2002, and although he gets better physically with his physio, I can't say he's improved cognitively much for a very long time. Still, who knows.
My wife is depressed, demotivated and in certain ways (alcohol, negative view of me) self destructive. She's a long way from wanting to get better. Certainly the psychotherapies so far have been a waste of time and money.
I spent years when, whenever Rob had to go away for work, his parents or mine came to stay, because I wasn't really safe to leave with the kids. Now, there is no problem (which I guess I can't take all the credit for - yes, I am much better, but the kids are also a lot older now, of course!). I am definitely in a *much* better state than I was for a good long while. I am certain I've improved since the two-year mark (even though that is supposed to be the cut-off). OK, lots of it was in the first year, but I went back to work after 18 months, and one of my colleagues said recently how much I'd improved, much more recently.
However, I'm afraid that I think quite a bit of my improvement is just down to my determination. I've always been very strict with the physio, and *trying* to do things. When I wanted to go back to work, there was an occupational health bitch who really thought I couldn't go back. I was just so *determined* to prove her wrong, I dragged in the doctors from the hospital where I'd been, and I went on and on at my Head of Department, I think they had no choice in the end but to let me *try* for a few months. If I hadn't been the type to get obsessed with going back to work, yes, I'd have accepted what that ***** said. I did really really *want* to get better. If your wife doesn't have that, it makes it much harder, for you. I'd have thought psychotherapy would be a good start, but you say not.
It's really irritating that I can't drive (I am officially blind. I'd say 'partially sighted', but hey, I pay less tax, less TV licence, less train fare... ) Fortunately, when we bought this house (which I don't clearly remember, as it was in the 'missing' year or so before my accident), we insisted that it be within walking distance of the train station, as we both commute by train. The driving only bugs me a bit
This is the first time I've posted here, despite 'lurking' for well over 18 months, and I just wanted to say thank you - for writing your original post, and for continuing the conversation through the full thread. I thought I was alone, and you've articulated so well what I have avoided saying out loud. Everything you are experiencing is happening to me now - my husband had a serious stroke 2 years ago. I genuinely don't know what else I can do or try... but the stark realisation that 'this is how it is' makes my heart break. You have real courage, and I take some strength from that.
I sat here tonight and read everything. I can't remember all the details but so much rings true with me and my experience. Wow this is emotional but it has made me realise that there is a little fear in me that is afraid that my hubby leaves me. As my hubby has been doing a lot of the work and he does try to get me to do things(housework wise) and a lot of times I don't because my mind is just not there or I forget cause I'm trying to concentrate on something else. He has been very good taking caring of me and I have good days and bad days. I feel demotivated a lot cause I'm in the stages of trying to accept what has happened to me however fighting to get the help to get me back out to do some sort of work. I have come to the reality recently that I will not be able to do my old job within IT anymore which I've done all my life. I still do not know what I would love to do. I wish my hubby could come on this site and interact with some people but he is not that way inclined. He just gets on with it. Oh and the sex life has declined big time. It is the stress and reality of the situation as well.
How are you doing? As no one has posted on here in a while
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