I spent four years advising people with a TBI and it was common for partners to be struggling with the changes in their partner and why my client was finding it so hard to cope.
At first it was a shock but when I probed my client's symptoms, the partner would sometimes cry, saying "I've never understood before".
This thread came to mind as I've just posted:
Jane Lapotaire's Time Out Of Mind, as the best I've come across but there must be other things out there.
That book looks really interesting. Thanks for mentioning it.
Though I think my partner understood. She left!
Its a good film too.
sealiphone firsly if a partner or anyone has never had a tbi/abi can never begin to understand the problems we go through on a daily basis.
you say " you 4 years advising people with a tbi ", in what capacity was this, because you later go on to describe them as as clients!!!
Hi Steve
despite my own bitter experience, I think it is possible for some parrtners to understand to some degree. At least enough to realise that its tough as heck and can unsettle your very sense of self.
But I agree that you have to have been there to really appreciate what it means to have a brain injury.
I do think that stroke related injury like in my case can give you good insight into TBI though. Effects can be very similar.
I read that book about 5 years ago and found it really disappointing. Lapotaire came across as very imperious and in no way appreciative of the care she received from either the medics or her friend who put her own life on hold to nurse and provide for Lapotaire.
After my haemorrhage I spent the following months apologising to friends and family for the stress caused to them all, so her attitude of superiority and self obsession was galling for me and kept me from finishing the book.
Most of us with brain unjury have had to wrestle with the dreaded disinhibition/emotional labilty/anger but this is the work of someone exhibiting an attitude of granduer, which isn't helpful, and something I've never encountered from anyone here on Headway.
Other reviews of the book say much the same, one reader describing it as ............'Uninspiring'.
That's just my view ; others might see it differently.......
Carers/loved ones I think often get forgotten, in the aftermath and what not.
On the whole it’s very easy for all parties to not understand what the other is going though.
roger my wife is an absolute saint, but if she tells me off and i tell her she doesnt understand she admits she does doesnt.
theres certain shops shell ask me if im going to to be good or if id prefer to go go back to the car, the truth is no matter where i am i cant guarantee my behaviour.
I was going to give it a read, but Cat, as always, your conversation or advice, makes sense. My partner, Alan, always says sorry for putting me through what he has and is going through, or sorry when I'm helping to care for him, in a personal way, I always tell him he doesn't need to apologise. I can never be in his head or his physical position, but I love him and when you love someone that much, you take the rough days and the good days the same. I work through as much info and read experiences, from tbi sufferer's and carer's and try to take as much help to try and understand what he is going through and then try to help and be there. I don't run around after him constantly, I encourage him every day to try do as much as he can himself, but he knows he's not alone. He does get angry and frustrated, but I don't take it personally, as its not with me.
X
Sue, if you haven't read it 'Where is the Mango Princess' is a wonderful account of living with a partner with brain injury. I just went back to it (read it about 3 years ago after someone here recommended it) and I've started reading it again.
It's written by Cathy Crimmins (American writer, wife & mother) with no holds barred but with the humour we all recognise as essential for getting through those uphill struggles.
Sadly, Cathy died in 2009 aged 54 from complications after an injury. xx
I have not read the book but different folk has different views on what they read, whether you are a sufferer or not. My first years did not seem to have any problems or maybe people just accepted and put it to my accident. I see many now, years later but still cannot stop a lot of them the next time they happen. But I am sure the book could be useful as I know many friends and family might benefit from having some knowledge what a brain injury does
Jem
Oh, I am so glad of an app I have now that underlines some of my typing errors. Wish I knew about it earlier.
The question about my role, I was a referral point for the local PCT's TBI service, I represented their patients in Welfare Benefit and employment matters. You can see a brief summary of my background and TBI on my profile page..
The partners who'd been struggling fell in to 3 main groups.
1. At the first meeting with the TBI team, a urgent legal matter was identified so they would meet me with a maximum wait of 14 days.
2. Many clients were referred by GP who knew nothing about the TBI service.
3. They had moved from a different PCT who had provided no support for their partner.
The TBI team I worked with did have a good support package for partners, however funding issues resulted in this support not be possible for all of their patients.
I currently work in a different PCT area and they provide what I consider minimal support for partners, TBI is still a Cinderella service in many areas.
Lapotaire's book does receive criticism for her whinging however I heard her story told many times from clients who's post TBI life had been a nightmare, she tells an uncomfortable truth.
I still come across GPs who know nothing about TBI and it's cognitive symptoms and I'm no longer amazed when they are unaware that TBI support is available to their patients.
I treasure this book and bought a copy for my gp who enjoyed reading it too. I thought it was the most powerful biographical account on the subject I've ever read. Obviously it won't appeal to everyone as everyone's taste is different!
Sealiphone, you do very valuable work and I admire you for that.
Swedishblue, it's sounds like you've got a fantastic GP.
This reminds me I was chatting to a GP, who'd come to a presentation, as they wanted to understand TBI and it's symptoms. However they told me that the practice had no TBI patients having cognitive problems, so I asked did they not have any patient who've had a stroke. That was the end of the conversation, they mingled! Although to mitigate their response is was before the presentation.
I've been searching for Where Is The Mango Princess and found a review on Metapsychology it certainly seems interesting the Yin to Lapotaire's Yang. I don't need to read it now but it would have been an invaluable support, to have an insight into the issues my partners found difficult at the time.
For us my partner, reading Time Out Of Mind gave some insight to my inner hell, this began a conversation in which we both discovered the dynamics at play.
In both books it's a walk in the other persons shoes, perhaps they should be available on prescription.
I will see if I can find it in the library
The Survival
Is anyone there?
Can someone give me hope?
Seizure while sleeping
Update...
