I’ve got to vent and this is the only appropriate place to do it.
Bit of context first; Husband is in recovery from anti NMDA encephalitis/ ABI with various other health complaints and whilst recovery is happening, it’s very slow especially after his relapse earlier in the year.
BUT it drives me absolutely insane when people who have a 5 minute (if that) convo with him say ‘oh he’s doing so well!’ or ‘he’s almost back to himself!’ because NO. He’s not!
- he still has an entirely different personality.
- they don’t see how that tiny interaction wears him out to the point he’ll sleep as soon as he’s home.
- they don’t see the tears we have daily at the moment as he’s becoming more aware of what happened to him and what he’s lost.
- they don’t see the anger and resentment he has towards me because I’m able to drive, work etc; do things he can’t do (at the moment - as I keep reminding him)
It’s half 6 in the morning, I’ve just walked the dog alone in the pitch black which hubby wouldn’t have dreamed of letting me do alone prior to all this, I’ll wait several hours for him to wake up, I’ll have done all the housework ready (he has quirks now too - no ‘bits’ on the floor), I’ll make sure he’s had his tablets, I’ll have to check he’s changed into clean clothes, I’ll have to remind him to brush his teeth - this list goes on and on. Every single day.
So no, he’s not doing as well as you think after your very limited interaction with him.
I’m sorry - maybe I’m being unreasonable but I’m so frustrated with it all!
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AntiNMDAWarriorWife
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I feel your frustration!! People just don’t understand the complexity of it all.. I’ve given up using my energy explaining to people, who will not make any difference to our daily lives. Keep your circle small and reach out to people that will understand your situation.. Stay Strong!! X
Hi my husband is recovering from a severe brain injury which happened 5 years ago.I have the same people see & speak to him for a short while then tell me hes back to hos old self !!
But like your husband he is not , he's a totally different man, but he doesn't think there is anything wrong with him !
I've been through a lot of heartache like you, but I now try to look after myself, do things for me, go out with friends even holiday be myself.
I used to feel very guilty but you have look after yourself & your mental health.
Is your husband safe to leave ?
It does sound like you need a break to recharge your batteries.
People don't see what goes on behind closed doors, but they haven't had to deal with the things you have.
Please take care of yourself there are others in the same situation who know how you feel and some times we all need a good rant to make us feel better.
I feel for you am in same boat husband had a tbi in July 21 he’s a different man I married he needs 24 hr care and I said exactly the same to my daughter you go to apps and it’s like he’s doing well try this try that and my wording was it’s alright all the professionals who work head injury patients but try and do it for a few days and it would be a different story it’s so draining on us he wakes from 4 every morning 😢😢😢 I just run on coffees . He’s waiting for a nose op so he can’t get full benefit from Sleep apnea monitor all I get told when he has op his sleep may improve.
Thank you for your reply, sounds like you know exactly where I’m coming from!
It’s incredibly difficult. I’m a very happy go lucky kind of person, but he’s becoming such an angry, resentful person - I find it so difficult to be around.
He can safely be left but doesn’t like me to go out without him otherwise ‘he’s stuck in all the time and it’s not fair’, I also don’t like to leave our son or dog alone with him just incase there’s any issues! 😔
I still work part time which is my escape - I have a nice job so it’s not stressful or strenuous!
I Can really relate to what you have said. My husband had brain. Surgery 2 years ago , they mask things in front of people but behind close doors they so different and difficult to live with the constant high and low mood that doesn't just change daily it changes hourly. If you ever need to vent I'm here .
I’m in a very different place to you but as far as others not having a clue I’m slowly trying to understand this and I’m nearly 4 yrs past my tbi .. I know how difficult/ different I am and I’m no longer in denial just trying to except it . I’m not sure why my husband is still here and I don’t think he did as much as you are doing …
m so pleased you share your feelings on here as we all understand how life has changed beyond belief ..
I can only recommend seeking counselling for you both , together and individually .there is pathways through this and people who can help .. talk with your GP , go private , read books , talk on here , seek counselling and all of this will help with what you are dealing with and your husband to also get rehab and learn to except/ understand the new him .
No one will have a clue what you are both going through . It still does my head in when people say to me how well I am yet they dont see me struggling with simple tasks daily .. and im getting good at finding new ways of doing things .. I have had to go private for lots of things .. as the nhs I’m my area is virtually non existent with neuro and rehab ..
I am going to stop as all you may get from me is negative and that’s not what I want to do .. get help , others will never have a clue and talk to your GP or email them as I do know as 10min appointment is impossible to get out what is in your head ..invisible health problems as the worse to deal with 🥴 Sue x
It’s interesting to get a reply from your point of view as you understand what he’s going through better than I/ the other spouses do.
I actually question whether he even likes me daily at the moment. Then I feel bad because it could just be something he can’t help. I don’t know.
I did try to get us both counselling but he wasn’t willing, he said talking won’t help or change anything. I’ve even suggested meds for his low moods but he’s point blank refusing.
I’m trying to offer potential solutions to all of his complaints but nothing is good enough.
It’s his way or not at all - no compromise.
We have an appointment with his neurologist at the end of Dec, I’m just doing the best I can until then.
Please get councilling for yourself if your husband isn’t willing ..
I’ve been / had counselling though my life and yes it dosnt change anything that has happened to , it’s no miracle cure it’s learning how to deal with whatever you are dealing with and it works if you work at learning to deal with anything in a positive way ..
Pre my accident where I fractured my skull , broke my neck , bleeds on the brain , damaged both shoulders and rupture hamstring ( long list) I had been married, divorced married again , been in a violent relationship and grew up with a controlling father .. sounds pretty crap life and parts of it where beyond unbearable , but I survived .. I also used the skills I’d learnt along the way to help not only me but others so I changed a negative into a positive .. this is me my personality but and a massive BUT I’ve had on and off years of counselling , some good some bad …
If I hadn’t had hell though my life and survived I wouldn’t be as well as I am know .. which came from fighting this all the way physically and mentally , braking on several occasions .. councilling , reading factual information which know takes months to read as I don’t remember what I’ve read so each paragraph is read several times until I can understand it ..🥴
Tell your husband what others write on here , what we have learnt along our way as this is what is needed is to share ..
I’ve survived a controlling childhood , rape and being nearly killed as he did murder someone years after being jailed for two rapes To raising 4 sons . 2 of which were full time stepchildren as their mother had died and I met their dad and married him , remained and built a fantastic relationship with my x husband and his now wife , then survived an accident that I probably was lucky to survive .. oh wow this is ridiculously long but my only reason to write this is to say councilling doesn’t take away anything it just teaches you to deal with anything in a constructive way … Sue 😁
Call Headway and talk to them, see if you can get some help or counselling at minimum..You can't do it all, and certainly not long-term. It is exhausting.
I have a mtbi and also cared years for an elderly parent - who had a good brain - just the body was the issue.
I could.not have coped at all otherwise. It's exhausting even when you get cooperation.
You need help- anyone in this situation does.
I understand you may not feel you have the time (been there) and you really need to start looking around before you hit the wall over it.
I have spoken with headway, unfortunately there’s no groups local to us.
As for counselling, hubby is not willing to even speak to anyone. He is such a tricky character at the moment!
I am in contact with my GP for my own sake/ sanity & he has given me some options, but as you say finding time around working, caring, being a mum etc proves challenging.
I’ll be okay, I just felt I was boiling over when I wrote the original post 🫣 x
I really feel for you, it sounds like you are having a bit of a time at the moment. It will pass I know but if it helps to vent then you go on and do it.
I think that people want to seem encouraging and look for the good as they are basically uncomfortable with talking about difficult topics like disabilities. It’s their failing.
I am able to appear normal and that is the only time I go out and engage with people so they all think I am fine. Only my partner sees the whole thing for what it is. I am grateful for her daily and say so.
It must be frustrating if your husband doesn’t yet have the insight to know how it’s affected you. Just give it time. You can only do your best and you can only do things for him because you want to do them and not because you want to have it acknowledged. If you start resenting doing things then it will grow and become a negative drain on you until it makes you ill.
Make sure you take time for yourself and do things for yourself too.
One day he may notice but maybe he won’t. It’s like caring for someone with dementia and totally unsung.
I’m so glad you have a supportive partner and you’re able to voice your gratitude! I am sure hearing your appreciation makes it all worth it for her.
I must admit I am getting to the point where I’m not happy around him, purely because I don’t know what to expect.
I actually work with dementia patients daily and find them much easier to deal with and be around 😅 but then again, I suppose I just see a snippet in the hours I’m with them, much like people only see a snippet of my hubby.
He’s very angry and resentful, and seems to take it out on me the most. I can’t breathe right at the moment.
I’m sincerely hoping this is just another new personality that will change in time as the others have; hopefully for the better!
My heart sank reading your piece above. Life got turned upside down when I had my brain injury. Like your husband I daily deal with similar issues, but not on his scale. Also have no visible scars, lumps or bumps to make the injury visible. Have been lucky to have supportive family and friends. Some old ones and some new. Made through two charities, Headway and Silverlining. Now taken up a photography group and been drawing. New pastimes 🙂
I hope you are getting some support too. Look after yourselves.
I so know what you mean!!! My husband has a hypoxic brain injury from cardiac arrests which got worse after a stroke four years ago. He can speak clearly (even though he has word finding issues) so mostly everyone tells me how well he is doing and how lucky I am!!! I know I am lucky he is alive but like you, having to do absolutely everything all the time is exhausting (his executive function is massively compromised and he struggles following instructions, he can't read anymore and I have to tell him every morning which way round his clothes go on...)Hang in there! No one who does not live in this situation can understand what it is really like.
Im sorry you can understand what I’m going through, it’s so difficult.
I don’t even feel like a person anymore - just a robot put here to serve him 😅
In the early stages of his recovery, he was almost childlike - very attached to me, very loving, just an absolute sweetheart! Now he’s just angry or sad, there’s nothing at all in between and he really has it in for me. Caring for him was much easier before… I will adapt to this new him I’m sure, it’s just gonna take a little more strength than I feel ive got at the moment 😅 x
100% understand where you are coming from. When would we ever let our partner's/kids for that matter go out into the world in a mess. They seem like they are well and able and we seem like we are coping. But we're not coping. Or maybe we are for the bit of time that we are with others, but when we get home the wheels come off.... We live hour by hour because something random may happen. We're the gatekeepers. We're the ones there when they fall in the middle of the night, or throw up because they have had their finger too far down their throats and won't be told. Or have had a good couple of days in row and the imminent crash/down day or 5 happen.
Do we need help? Yes. Can you come at midnight when we're completely done in and trying to face the fact that we have to do it all again tomorrow? But we keep going and doing be ause the alternative id unthinkable.
It's hard as nails. So I feel where you are coming from. Respite is great but it just can't cut through the thick things when you need it to. That's why groups like this are good, because there are so very very few out there who can understand.❤️
I am grateful people understand where I’m coming from.
I tend to get two responses from people that DON’T understand when I try to talk to them… it’s either ‘leave him then, you have to look after yourself too’ or ‘well he can’t help it, it’s not his fault’ … neither are helpful at all.
He is very angry at the moment and I can understand particularly my family’s concern, but I’m just hoping it’ll pass as he moves along in his recovery.
I work part time in a lovely job so luckily that is an escape for me, but I’m just at a loss as to what to do to help him anymore. I’m hoping the neurologist has some advice when we see him next month!
Its a sad reality that despite so much progress in the medical field, many people are still extremely ignorant of mental health and other issues that they cannot see. More often than not, they tend to make matters worse. I completely understand that you want to vent out your frustration (you need an outlet) and I hope you can remain strong and manage. Do not give up hope.
If it is any help, I am aware that there is a UK charity, SameYou, which provides support for people with ABI and also does research into the area to try and provide better support.
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