Partner diagnosed with brain damage

[Yorkymidge]

Hello,
I could go into so much detail but i’ll try keep it short and sweet.
My partner has been told he has 4 patches of brain damage and a (thankfully non-cancerous) brain tumour. So far, it’s mimicking autistic traits including having the “emotional state of a seven year old”, narcolepsy and he has seemingly developed a work obsession. Tests are ongoing and diagnoses haven’t been completed as of yet due to different departments passing his case around. He is also 100% deaf in his left ear with decreased hearing in his right ear.

We have 2 children, a 4 year old due to start school in September and an 8 month old baby. Truth be told, i’m really struggling. It was first discovered when i was pregnant a year ago now and i’ve had to deal with him essentially slowly turning into a child himself, it feels like i have 3 children and i don’t know what to do. My 4 year olds behaviour has gone out of control, i believe due to him watching us argue but he’s picking up on phrases and tones of voices and i try so hard to not argue in front of him but my partner enables it, i try to remind myself that it’s his condition and not his fault but i don’t know what to do anymore.

On another note, i want to become a carer for him as i believe (as do professionals) that he needs it and he’s going to become progressively worse. However, he believes that will stop him working (he does 45 hours a week) when i don’t think it will. Does anyone have any advice on disability and carer benefits whilst he works? I’m on maternity leave at the moment but previously self employed and we’ve never claimed benefits.

Thanks.

I don't have any practical advice, but just wanted to say how incredibly hard this must be, and how courageous you sound. What an awesome mum and wife 💐

(Sorry, partner!)

I'm also wondering if there's any counselling/therapy available to him (and you!). I wonder if his work obsession is a coping mechanism, or more physiologically driven?

He needs to apply for PIP which you can still get if you are working, and then you can apply for careers allowance. I’m so sorry it sounds very difficult to manage with a young family. Have you been allocated a social worker? They maybe able to help with applications and care needs.

CarersUK www.google.co.uk/search?q=carers+uk+helpline&ie=UTF-8&oe=UTF-8&hl=en-gb&client=safari can help you with your queries OP and support you in the carers role.

carers.org/ will be useful too.

Join Headway today.
They will help with benefits and practical stuff as well as provide social support for you both.

If you google Headway you can get tel numbers for your local group and lots of easy to understand information about brain injury.

Good luck for better days ahead with the right support.

@derelicte thank you so much. It’s been a year now and i’m finding it so tough, i don’t want to lose what we had before. He’s always been work driven, it’s hard to tell the difference between what is “him” and what is “the problem” now. I just feel like he’s spiralling. He’s been assigned a psychotherapist but her waiting list is 4 months and we seem to be coming to a dead end with other help - i don’t think it helps that he’s insisting that nothing is wrong, i genuinely don’t think he can see the problem.

@Patchworksack is it possible to apply for PIP without a full diagnosis? As he says you can’t, although he says a lot that isn’t true right now. I’m finding so much conflicting information and nobody seemingly wants to help hence the post on here. We don’t have a social worker, the psychotherapist said we didn’t need to be referred because the brain damage section doesn’t trigger violence and in all honesty, i’d prefer not to because i know they’re not bad people but you don’t hear great stories either.

@Mistymoonsinastarrysky @YNK thank you for this i’ll take a look into it

You can apply for PIP without a diagnosis- it is all about how you cope with daily living and how you get from place to place.

But honestly you could really do with some specialist help and support for you both. Especially around work and money. But also around care and how you can manage.

My dp has pretty significant brain damage but the impact is different to your partners. I have been pretty reluctant to get help. And so is he. I always think I can cope and I kind of prefer to research things myself. But soldiering on has been at a massive cost to my health and I now find myself needing neuro physio as the stress has left me quite physically limited.

I have no personal experience of the brain tumour charity (my fella had a massive haemorrhage) but they are well established. I would also second Headway as knowing their stuff.

Here's a link
https://www.thebraintumourcharity.org/living-with-a-brain-tumour/get-support/

While he's might need care, I'd think very carefully about whether you are the best person to give this, both from your own perspective and his.

It will change the nature of your relationship even further. It also removes you from the workplace.

In the long term your earning potential is going to be important to your family. Going to work may also be the only mental break you get from this.

If you are already arguing this could make life even harder.

How on earth is he still managing to work going by what you are saying?

@stilldumdedumming that’s very useful, thank you and i’m sorry that you’re in a similar situation. I think i’m reluctantly wanting to get help for how i react to certain situations too, as i often find the overwhelming especially when dealing with 2 young children too.

@Calmdown14 thank you for this perspective, i suppose i’m wanting to care for him out of love and probably not thinking practically but i know for a fact he’d struggle to accept it from me, nevermind anyone else

@FannyFifer from the outside, he looks and acts like a normal person. It’s when he starts being “triggered” he turns very child-like. The autistic traits are so normal in the workplace nowadays that nobody really comments and part of it is an obsession with work as he has such a passion for it, so he excels in what he does. He often works alone, so i don’t think anyone’s really picked up on any other symptoms yet. HR are aware but it is a bit of a backwards company and i don’t think they know the severity as he’s refusing to acknowledge it.

We’re also struggling due to lack of information, knowledge and diagnosis as the doctors have said it’s a complex case and keep passing it between departments and doctors and blaming it on covid and strikes etc. He just keeps getting worse, but the wait lists are so long and pushing does nothing.

carer allowance is worth fuck all - about £18 a week??
You need to look at the contribution based ESA. Essential if at any point he is planning to reduce his hours as he will only qualify if he has the previous two years with full contributions (and he might not if he decreases his hours).

PIP is certainly wort considering as he can get it without stoping work. Its notorioulsy difficult and you will need infos from the different consultants etc... as well as adaptations from work/at home etc....
Be aware it can take a looong time before you get PIP (people often have to appeal first and then go to tribunal... whihc can take up t 18 months)

Re whether he will be able to carry working...
Tbh it depends on his diagnosis and how everything settle down. Atm I dont think you have enough to say how it will pan out (either way btw. But prob more you than him and he will know how he feels 'inside' iyswim).
You certainly will need to do a lot of adapting and I suggest you start planning as if you were single - not because you will but because you will be better off planning for it so if your dh has to stop work/cant help at all with the dcs etc... then you will have something in place.

Also if he doesn't have the ESA, the only thing he can claim is the lower capability UC. That will be ependent on household income whereas ESA only asks for HIS savings (and obvioulsy not working/no more than 16 hours at MW)

@Yorkymidge I just came back to this thread because I have a bit more time. Not that I have tons to say but just to be a bit more considered.

I really feel for you. As you know I have a bit of first hand experience caring for someone with brain damage. It's so hard. And the part about work not realising what he's like really spoke to me. My fellas case was quite extreme and he can't work but in the same way I am guessing others don't see what you see and what you experience, living with your dp, and seeing how he is. All the tiny (and bigger) adjustments you're now making to your life every day OP. And you have to care for your children too and sometimes they will just need to come first.

I had teenagers when this happened and it was hard enough. Small children are exhausting in a whole different way. And what about your needs?

And also what about the future you thought you would have? There's a different one in store for you now.

I really urge you to get some help for yourself. I don't know how much space you have for you, but you really do have to make yourself a priority here. Take your time and keep calling in help- different help from different places will be needed as you go along. I do know this is easier said than done.

Sorry if I'm being a bit downbeat but all the best to you.