what's 'normal'

repeatoffender

OP trust yourself and your instinct. You know your husband and know that he is different but it may take him a little time to realise that difference. On the other hand he may have accepted it and it may take you a while longer to come to terms with how it changes him and your relationship. Because it does and it can be very frustrating as everything alters while you have to fathom out the how and why.

Approx 2 years ago my husband had seizures known as status epilepticus which can be fatal. He had numerous episodes of these over a period of months until they determined which medication he needed. The neurologist was relieved but surprised when the scan showed no brain damage. He is now on a cocktail of drugs and he is very like you describe your husband. His thought process is different - he is not a different personality - but there is something not quite right.

The neurologist believes this is down to his meds which can not be altered. I find it hard to believe that his brain was not injured in some way due to the violence of the seizures and lack of oxygen. For a long time i wanted a reason - is it unseen brain damage - will it improve etc - but no one could or would ever give me an answer and now i am just learning to live with it.

But is is very hard to live with a man who can not remember receiving a wedding invitation or a cheque through the post but can recall the whole dialogue from his favourite movies. His concentration is minimal - he needs to write or be given lists which he sometimes forgets to look at :cool: The urge to scream when he looks at me with a blank expression when i ask him about a previous conversation and the look of despair on his face when he is trying to remember.

He exists in a brain fog which sometimes clears and he will update me on the minutia of the conflict in Ukraine enlightening me with facts about the Klitschko brothers, the politics of Russia and the fall out - whether I am interested or not . And i have long since refused to drag myself away from my ipad - ebay - ironing to look at some fool on you tube jumping into a swimming pool or off a mountain.

I think i am trying to say that you may never determine a cause - however it would be helpful to see if some cognitive rehab may help. It would also help if your OH could tell you how much he recognises his cognitive problems and how he feels about it. My OH knows his memory is bad and his confidence has suffered and although we try to put strategies in place they do not always work.

For example due to his meds and the risk of unknown triggers to his epilepsy new activities have to be monitored. When he returned to work he said he would text - ring on his break to let me know how things were on his first day. Not one text or call all day - he forgot. When he got his driving licence back he said he would text - ring to say he had arrived safely. He forgot. We all know a grown man does not have to text or ring to say he is safe - but in these circumstances even though we agreed and he knew I would be worried - he forgot.

If he went away and did not contact me i would be worried because it would be unusual for us. But i know that the lack of contact would not be a deliberate action if you understand what i mean. It is these type of situations which we now have to put in alternative agreements - options beforehand to help best manage the situation - for example a landline or an alternative PAYG phone at the house in France which can be topped up when one of you is there.

I think a diary is a good idea but you will need to balance it with positive events also as it would be a very negative thing if it detailed all of the things that he did not do or could not remember. Good luck.

markdebby

Is it not possible to speak to someone at his work who he is close to and see if they have noticed any changes. Someone must see him as much as you and able to give you feedback

Seanymph

I couldn't post yesterday because I couldn't find the words.

repeatoffender you get it too. The blank expression and look of despair. I could cry for him every day - yet you drag up a smile, plug the gaps with your words so his gaps don't show, and walk forwards.

And the fool jumping off a mountain or into a swimming pool! YES! It's exactly that! Exactly!

markdebby he works alone, he meets various others on different days to undertake tasks, but he works from a depot with only him in it - so lots of days is there on his own, some days meets someone on site, but it's a different someone on different days for not long.

He is 'thinking about' the doctors - although last night when I said 'have you thought about' he said he'd forgotten to.

I have no idea if this is a convenient forgotten, or a true forgotten.

He did however give me a bag of Minstrels as a sorry, which reminded him he'd bought me two walnut whips several weeks ago which he'd left in his van cab, so I got them too - but they weren't for yesterday, they were for ages ago, so he does think of me, but forgot to bring them in ages ago, so I got both now. I got the full explanation.

So, as I now have people who understand (who knew!) how do I approach the doctor?

The things you can see from my posts - let's take the interruptions - he will share the youtube, if he's watching the tv (even with others!) and I'm not he'll pause it to share with me something (a truck he liked and would like to own - an advert he thinks I'll like - something on You've Been Framed that made him laugh (most of it!)).

Now, this impulsiveness - read lack of consideration for anyone else - is new, he generally held the remote, but he didn't wave it about with quite so much freedom Now I don't, currently, have a problem with it too much - I like his 'sharing' that's so new. (It may get wearing in time) - the kids (teenagers) don't mind, they think he's funny in his enthusiasm.

But if I sit and tell a doctor this is a 'symptom' then he'll just stop sharing with me. And because he is now so literal, and I don't think he'll be able to distinguish between appropriate and inappropriate sharing, he'll just stop sharing.

I don't want that - I don't care if he carries on as he is, this new him - but I certainly want him to feel able to say 'I don't like this actor what do you think?'.

My fear is that he'll just stop talking (he did this when his stutter was awful) - because it's easier for him to stop than to show his difference.

How do I practically in real life sit and in front of him tell someone how I think he's changed without tearing him up?

Because, as I might have mentioned before, he's 'fine'.

troubleinparadise

Dear Seanymph,

Having lived with 3 family members who have suffered neurological issues - a stroke, infection and dementia, I am familiar with that knowing something is wrong, changing, or changed and lost forever, but perhaps too subtle to be a major problem - but a change from the way things were before.

What I have also learned is that it can be very difficult to get that person to acknowledge those changes.

As an example, In the case of my mother who was showing signs of early dementia, what I did was to write in detail a list of the changes, and emailed this to her doctor in advance of an appointment I was accompanying her to.

I knew the doctor wouldn't talk to me personally about my concerns, but I wanted to have her informed of the true extent as my mother both presented well, and either denied or didn't see herself that things had changed. Equally, I didn't want mum challenged or embarrassed, nor me identified as having "told" on her.

And this really helped. I could tell from the way the doctor asked her questions it was informed, and she equally picked up on oddities and inconsistencies in response. This did lead to mum seeing a geriatric psychiatric consultant who diagnosed the type of dementia, and medication which helped. Not cured, not returned to old abilities, but made daily life feel better for mum. And set the ball rolling for care help etc.

Your first challenge is to get him to see the GP - this could be under the guise of a "well man" check perhaps. You could email/drop in a letter listing the changes, stressing that it must be confidential. I say that because you don't want your husband mistrusting you, or getting angry at a seeming betrayal of trust.

What the GP makes of it is another matter - but it might get him a referral to more tests - a scan for instance, neurologist, whatever is deemed appropriate.

There are also changes that can be brought about by lack of Vitamin B, anaemia, thyroid problems - and those should all be checked for at this appointment - all can be treated and can make a lot of difference if they are not are normal levels.

But you may have to wait a while (sometimes never) before your husband accepts or understands that he is different - sometimes because the changes make it difficult or impossible for him to accept or understand that. (Try googling executive function)

Mojisola

troubleinparadise wrote: »

As an example, In the case of my mother who was showing signs of early dementia, what I did was to write in detail a list of the changes, and emailed this to her doctor in advance of an appointment I was accompanying her to.

And this really helped. I could tell from the way the doctor asked her questions it was informed, and she equally picked up on oddities and inconsistencies in response.

You could email/drop in a letter listing the changes, stressing that it must be confidential.

Most doctors I've dealt with have been like this - they understand that they don't always get the whole picture from the patient, especially if the problem is neurological because the patient doesn't actually know there is a problem.

I've had one experience of a doctor not keeping things confidential because Dad was his patient, not Mum who had spoken to him - although that was in a hospital, not a GP surgery - so since then, I've always put the problems as needing to be addressed because of the effect they were having on me. I hope the doctors are then restrained from talking about it directly because they need to preserve my confidentiality.

Tahlullah

That's fantastic advice on how to approah the doc Mojisola and troubleinparadise. They are practical ways of notifying the doc without being seen to betray his confidence and dealing with the issue of confidentiality in one go.

Seanymph, stay strong. Like you said, who knew there would be so many who would understand and care!

MrsDrink

Seanymph, I cannot add to the wealth of advice you've had on this thread, but I wanted to add my 'you aren't alone' shoulder for you. Although I'm not living with the effect of a brain injury daily, I can see the impact of it in my in-laws relationship/lives. My FIL had a brain injury (3 small bleeds on his frontal lobe) following a motorbike accident. It's coming up to 2 years ago, and whilst he is 'fine' there are definite signs that he has changed. I kinda liken it to him being a more extreme version of himself. I just wanted you to know you really aren't alone, and to make sure you are getting some support for yourself. I know my MIL couldn't cope without her own support network.
x

Whilst I have deleted my posts on my thread below - I don't know if there is anything helpful in the replies I got.
https://forums.moneysavingexpert.com/discussion/4111923

markdebby

Seanymph, great advice recently received. I know you keep saying you can't go to G P saying your DH did not phone for a week but that has been a big situation but it's all the small things building up that you need to keep a note off for GP eg filling in words in sentences for him. If and when you go to GP try and not do that at the visit. Try and bring round a conversation where you know this may happen and this will demonstrate to your GP.
When my friend had mental health issues and I took them to GP. This is what I did.

Mojisola

markdebby wrote: »

Seanymph, great advice recently received. I know you keep saying you can't go to G P saying your DH did not phone for a week but that has been a big situation but it's all the small things building up that you need to keep a note off for GP eg filling in words in sentences for him. If and when you go to GP try and not do that at the visit. Try and bring round a conversation where you know this may happen and this will demonstrate to your GP.
When my friend had mental health issues and I took them to GP. This is what I did.

Don't know if this applies with head injuries but my Mum was able to maintain a good picture of "normal" in a short GP's appointment despite the onset of dementia. When SS or other health professionals came to the house and were with her for longer, she couldn't keep it up and they started to hear the same stories twice or slightly different versions of incidents.

DigForVictory

What I know about head injuries comes almost entirely from Richard Hammond & if you're worrying, seanymph, get him to the medics. If you can ask for a long appointment, (to give him more opportunities to reveal the cognitive glitching to the GP) better still.

The diary idea is brilliant, because you won't get to see anyone who understands the weirdness brains can manage for months, so you may as well have plenty of clear time & dated examples. (Although yes, keep it confidential from him and be clear about that with the medics.)

The time for throwing things comes when said specialist says "he's absolutely fine". Sorry - no china flinging just yet. (Nothing to stop you shopping for some nice smashables though, if it helps you keep it together!)

If you are remembering words in context for him, that's entry one in the diary. It's also a Foot High Caps indicator that there are cognitive issues & that you both need help - him to be studied & then taught techniques to improve his self management & you to 'know' rather than worry that there are issues.

It's very difficult not to give the patient head injuries out of bare naked frustration, especially when they think they're fine & noone else sees them enough to realise. So pick up the phone, lay down the frying pan & just hang in there.

Wishing you *both* all the very best!