Hey all,
Not entirely sure where I should post this but , to summarise my wife was diagnosed with functional neurological disorder a few years back. Whilst there has been a steady increase in her physical symptoms than need a fair amount of support when their particularly bad, what I’m really struggling with are the more mental aspects.
On a general mental acuity basis, there has been a real decline and I find myself sometimes treating her like a child, I do revert when I realise I’m doing this and I hate that I do it.
What has become a real issue however is memory. She frequently has no memory of conversations we’ve had or imagines conversations we haven’t had. This has had me doubting my own memory as she’s absolutely convinced we had them.
They are a symptom of FND but I’m asking if anyone has any advice on dealing with issues like this sensitively? I’m just feeling like a bully by constantly correcting her, is that even the right thing to do? Should I let inconsequential memory issues slide?
In hope,
Neil
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Hi Neil.
Your post touched a nerve with me.
Graham does not have SERIOUS issues like your wife, but after his stroke his memory and cognitive processing has been damaged. Whilst it usually isn’t obvious he will suddenly stumble over a word - use malapropisms or just say ‘that thing - you know it’s white…’ (could it be a piece of paper, the fridge or the sink?) I am slowly learning not to jump in and he has thanked me when I just wait - even though I do start to grin as he struggles with the right word. He says it’s better than correcting him. HOWEVER, I am never sure if it’s right to let him struggle due to the frustration it causes…
Graham also forgets things I’ve told him - often remembering an hour later “oh yes - you DID mention that earlier”.
It makes life very hard - the advert for Alzheimer’s which has been on TV recently makes me cry because I can see G slowly moving towards that in the not too far future. Last week he asked three times ‘what time are we leaving to go to the hospital tomorrow’… Each time I replied I could see the actor in the advert biting his tongue and tried to emulate him.
There are times when I want to say to G ‘OK, act like a child and I will treat you like one’ but it wouldn’t help us right now. It is what’s needed at time though. I’ve seen it in others.
Sorry I can’t be much more help, but I hope others can share experiences.
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Hi Neil, my mum suffers from FND and have got some information about it from the NHS website and you can get books. there is a local group where I live but they are not great. the way we deal with it is like if people who suffer from dementia or alzheimer’s as FND is still being looked into as it a new thing. Have you seen the gp and a brain doctor?
Hey Michael, thanks for the reply.
We’re actually pretty well covered from a support group perspective and currently have a referral to o the Rosa burden centre (specialists FND clinic).
I asked the question because it’s not something that particularly well defined on the memory issues front. I guess my biggest worry is causing inadvertent harm emotionally.
It’s a frustrating and often disheartening place to be seeing the degradation in real time, I’ll look into the dementia/Alzheimer’s techniques however.
Thank you,
Neil
Thanks Chris,
Talking helps. I’ve not written things down for others on this before and judging by the emotional release that happened when I read your post there was clearly plenty of pent up stress.
Neil
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Hi Neil
Oh dear - I do hope I didn’t cause you unnecessary upset. That’s often the problem when sharing experiences as it can bring your own situation to the fore much more clearly than usually (don’t we all bury things deep sometimes?)
I would say that often talking about/through a situation can be very helpful. That’s why the Forum is a great place as it’s a Safe Place with no judgement as we have either been in the same shoes or can empathise due to our own experiences. Try not to bottle things up but get them out in the open. We’ll all be here to help you with support.
Chris