staying out of guilt!

[Lindsay9023]

my partner had an accident at work in 2021 which resulted in a tbi and stroke, he was in hospital for 14 months and last july finally came home. Things have been so stressful getting used to his needs and trying to help him as much as I can but the lack of respect and nastiness he has towards me is horrible and can even result in having things thrown at me. I have tried my very best to do everything physically possible for him but I’m struggling so much I’m not even allowed to go out for a break as I get abusive messages, my mental health as taken massive hit and to make things worse we are due to get married in 3 weeks!! We had a big argument today and I called off the wedding and told his family to come get him but all they want to do is put him in assisted living which makes me feel so rubbish I don’t want to see him end up somewhere like that. I feel trapped and I don’t know what to do for the best 😢😢

[Pairofboots]

Hi Lindsay. I can feel the guilt and anxiety you feel. What has happened is out of your control, and what is happening now is out of your control. Sometimes we can't fix the situation. You have to start with looking after yourself, this isn't selfish, this is essential.

Can you change anything for the better? Marriage isn't the answer. Sometimes we have to walk away and take the time to heal ourselves. This is no one's fault, it is just circumstance, and we have to be honest with ourselves.

[S21NTE]

Hi Lindsay,

How devastating for you both. Try not to be too hard on yourself. The reality is that there would be very few people that would sign up to be the brain injured or their spouse. It is one of the hardest things and there isn’t anything that can prepare you for it.

I have been married to my husband for 20 years, together for 26. He was assaulted 3 years ago and suffered a severe TBI, 3 bleeds and a craniotomy.

We are very lucky as he defied all expectations. He has left temporal and parietal lobe damage and both frontal lobes. But he is quite remarkable and must have always have been right hand side dominant. We have retained a lot of his good qualities so we can see the old person. Don’t get me wrong, he can vary between behaving like a 3 year old and a 44 year old, and is far from the person I met or married.

The reason I felt compelled to respond is that I recall seeing a story about a couple that had split up due to brain damage. At times when I have been at my wits end, it has been a thought, but not one I have been pushed to.

The couple split, moved into separate accommodation and Mrs carried on helping and visiting. But as he had to live independently he was able to become more aware of his struggles, behaviour, and had to deal with his injury himself without a crutch. They ended up back together!

Instead of losing all of your history, and hard work in getting to this stage, could you maybe trial something?

I appreciate that it is very hard to reason with TBI sufferers sometimes, could headway or a councillor help with a transition?

It may not work and it depends on how ‘done’ you both are but either way, you need to look after yourself too. We often forget this and lose who we are as people.

It really is a very tragic situation and I wish you both the very best with what happens next. But please don’t feel guilty. Be proud of what you have input since his accident as this will have been such a pinnacle time in his recovery.

x

[paxo05]

Hi keeping together out of guilt will not work or help anyone.A few years after my bi me and my wife separated. I moved out as we had 3 young children and wanted to keep some firm if normality for them.

My wife continued supporting me through my recovery but was unsure if the love was still there for this new me.

Basically I was a mess trying to get used to the new me myself. I was unsure if I wanted my wife out of the need to care for me or genuine love.

We went through specific counselling that deal with bi and relationships.

It wasn't easy and took quite a while. But in time my wife fell for the new unimproved me. I also became certain of my love for her and not just a need to be cared for.

We didn't quite get divorced and decided to renew our wedding vows.

It's not been easy and still at times my bi raises problems but we are happy.

It can work out but is not an easy ride.

Make sure you do the right thing for you as well as each other.

Pax

[skydivesurvivor]

he shared my experience. 23 years on from my divorce am glad he left me!! Will take time for him to rebuild his personality, life. Like so many TBI sufferers he has a long hard journey ahead! Read my story & see! He is a different person, what was the reason my experience put for our divorce. He will in time be grateful, sheltered accommodation is the best place for him!! A safe place for him to develope the new him! Good luck, stay in contact vaguely is best. One of 4 kids, now only have my brother if y need to talk this is a bril. Site for support so come back whenever y need 👌

[Leaf100]

Hi Lindsay,

Things are still very early in terms of recovery time.

For myself, I was irriated easily for the first few years - my brain hurt, I couldn't really understand anything. I was no joy to be around.

Have you talked to Headway?

Part of the thing is that although there are trends no one can say for sure how long or what it will look like. I know of people who have anger issues long term. It depends somewhat on the part that got injured. I mean angry to the point people in shops etc call cops. Angry in terms of getting blackouts.

Also you need to be practical, if children are in your heart and you dont have them yet, that may need to be your priority and your very injured partner is not able to provide a baby friendly space. If you are giving that up, it can only cause long term resentment.

Even if that is not the case, this may not be something you are able to take on. As I recall, when I was first injured I was told something like 97% of marriages fail when one of the partners get a brain injury. So you see, it isn't you, it is the circumstances. And it isn't always the uninjured person who leaves - when some gets a brain injury their personality changes and they may pull the plug.

You can ask Headway about assisted living, or some of the folks here, and get him set up in a decent one - or pass that info to his family and tell them they have to step up. They may try to push back on you but don't listen, no guilt trips accepted, or threats.

Some injured people actually do need the assisted living situation , or a group home, because they need that level of care - you can't be his carer 24/7. No one can do that.

You need to be realistic and kind to yourself.

I say this as someone with a brain injury who is also a carer for an elderly parent. I have a glimpse into both sides. It only works because we have respect for each other - some human moments, yes of course - but we move on quickly.

Staying with someone only out of guilt is no way to live. One idea is to put him in the car, go visit his family - and leave him there, sending his things later. Does that sound harsh to you? It may be necessary.

Sometimes circumstances leave us no choice.

He is being abusive. Yes, it is likely the injury - and it is still abuse. There is no way of knowing how long that will go on, or if it will stop.

At the end of the day only you can decide where the line is. What I hear you saying is you have come to the line, and only guilt is keeping you. Well, maybe not guilt but the desire to see someone left in an OK spot. You could also find out how to get that rolling and get it in motion and then leave. Just a thought. It may be past that now, in which case his family needs to take it on.

I am sorry you both are going through this. Life sometimes presents us with difficult choices. You matter, too.

Leaf

[Skulls]

I cannot say that I am qualified to advise but it is true that you should look after yourself first. If you crumble, who looks after you? No, not a good time to marry. That was an interesting stat in a previous reply and may inform my own situation as my marriage has failed. As far as possible, be kind to him. Good luck to you both.

[JontyB]

hi, I understand where you are coming from. At the end of the day, you need help and support yourself, because you’re no good to anyone unless you are in a good place yourself. Once in your good place you will be able to do what you need to do.

[Charente]

not qualified to reply but my husband had a tbi in 2018. 4 months in hospital and a different person ( but the same only more of) came home. Good recovery in circumstances. Angry, scared, frustrated and trying so hard to be normal. ( and that’s just me😂)

Temper tantrums, sulks , frustrations and bouts of complete normality , kindness, love and understanding at times.

A different life was needed , accessible living, acceptance, grieving for what you ve lost, peace, quiet, things at a slower pace.

What made life change from being scary to just ‘coping’ to enjoying life again was the people in Headway and our neurological medics in Llandough. Referral to a neuro counsellor , neuro physio and great medics guiding the way.

We re in a good place now, a happy place. It may be different but it’s ours. It’s taken a long time to get here but I so hope you ask for help. And I so hope you get there. 🥰