I recently found out my husband has retrograde amnesia following a brain haemorrhage he had several years ago. When he left hospital he was very confused and though he became aware of this during his recovery, he did not want to admit to me and our children that he didn't remember who we were or anything about our lives together.
His short term memory is fine, it is just things from before the haemorrhage. His speech is very limited, so he was able to cover this up from us and medical professionals but he has since told me he can't remember any of his prior life or any of his childhood. He does recognise faces, but has no idea how he knows those individuals - except from what I have told him. He only knows his parents are his parents because I've told him - and same for me and the kids.
Does anyone have any advice in how best to a) support him with that loss of identity b) any resources or advice to help me understand and come to terms with it too.
I haven't told the kids or family yet as he doesn't wish me to, so I'm a bit alone with this.
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Ballsintheair
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Hi! It’s quite new so haven’t tried that much yet as I’m still trying to come to terms with it myself - it feels like a new loss. Want to do a bit of that in stages so it’s not overwhelming but hard to know where to start. Not sure if better to start in childhood and work along or whether it can be more random
I don’t remember much before my haemorrhage but I do recognise/remember people (names) & faces I’ve associated with. It does help when somebody talks about something I did with that person i.e I didn’t remember about the time I went to the football with my cousin until he prompted me, now I remember most of that day, also when I’m shown old photos of my self I kind of get a little memory.
Thanks so much Wazza84 - do you think that it has helped unlock the old memories then? Or is it just that you’re building new ones? Memories are so complex aren’t they, I guess it can be hard to know if it is because you really remember or because someone has told you? My husband does recognise faces but has no idea where to place them - so only knew that his parents were his parents because I told him etc.
I say it all the time “I don’t know if it’s a memory or memory of being told/seeing” 😂but being prompted or reminded seems to work with my memory but short term memory is terrible, my phone is full of list etc 😬
My partner has both retrograde and anterograde amnesia following a hypoxic brain injury 4 years ago. He's lost about 30 years prior to his injury and hasn't really made any long term memories since.
I spend quite a lot of time going through photographs and talking about things he did in the past, as he doesn't remember his career, people he used to know, his children growing up, losing his father etc etc. Its very hard though as due to the anterograde amnesia very little of this goes in. This is where you may have an advantage as it sounds like your husband would be able to retain the information if you sit and go through it with him.
I do think first though you should get some counselling support for yourself, so that you're able to do this without it crushing you. This must have been a huge shock and undoubtedly a sense of grief that all that shared experience and bond feels lost. I do understand how that feels and it is devastating. I've been having regular counselling for the last couple of years which has helped enormously to come to terms with things. It really helps to have someone completely neutral to talk things through with, or just cry and rant at the massive unfairness of life, without fear of upsetting them.
You're obviously and understandably concerned for the impact this has on your husbands sense of self, and I think he would really benefit from referral to a neuro-psychologist. We've been lucky enough to have ongoing appointments with the one from the neuro-rehab unit, and its incredibly helpful to be able to talk to someone about the psychological issues stemming from brain injury, which obviously most psychologists/counsellors simply don't understand. Ask your GP for a referral x
Thank you so much for your reply. You’re exactly right, it does feel crushing and that realisation that all of our shared experience is now just my experience is very hard - because previously he had said he remembered everything. I feel a bit angry that he has taken years to tell me and we’ve had a lot of ‘fake’ conversations which feels like a second blow - albeit I understand he was probably too scared. I’ve spoken to the GP who is going to re-refer and have arranged to see a counsellor myself.
I’m keen to learn more about how you have copied. How difficult for you that your husband also struggles with making new memories - how have you been able to deal with this? And do you have any recommendations for how to broach with children? - my kids are teens and I haven’t told them because it has been such a horrid shock to me to suddenly find this out and also feels like a bit of a betrayal of the last few years - I’d been arranging for him to meet old friends quite a lot yet I had no idea he didn’t know who they were. I don’t want the kids to experience that shock and pain that he knows nothing about their childhood. I’m thinking of perhaps just mentioning that it has emerged he can’t remember everything, rather than saying that he has no memories at all from before the haemorrhage.
Unfortunately I don't really have any advice about broaching it with your children as sadly my partner is estranged from his adult children and they have shown very little interest in what has happened to him.
I think if your husband has been able to make new memories since his brain injury it's maybe kinder not tell them at this stage that he remembers nothing of their childhood. If conversations come up about things from when they were young perhaps just mention that his memory doesn't work as well as it used to and things are a bit patchy. If he's able to make new memories now, then as they get older the time that he can't remember will be less important (not to you I know, but in terms of how it affects their lives).
Have you talked to him about how he feels about not being able to remember? I was devastated, sort of on my partner's behalf, as I thought it must be awful for him being unable to remember his children or his father, but he is quite serene about it. He says he doesn't really think about it unless I mention it, and then he will acknowledge that it's sad, but I don't think he actually feels sad. He says he can't miss what he can't remember - or remember that he can't remember it! He can recognise them in photographs and will sometimes be able to say 'oh that was at my Grandma's house' if they are from many years ago, but without the photos there's nothing. He does remember his parents and bits of his childhood now, in a very general way, but doesn't seem to have any actual 'memories' if that makes any sense? It is his episodic/autobiographical memory which is most impacted. It sounds like it might be slightly different for your husband which is why I think exploring that further with a neuro-psychologist would be really helpful for him.
We had only been together a few years when he had his brain injury and although he recognised me straight away and knew I was his partner, it soon became apparent that he had no memory of us together. He doesn't remember meeting, moving in with me, anywhere we've been etc. We've revisited several places that we'd previously travelled to, and although he's recognised some he has no recollection of being there before. We've now been together for 7 years (tomorrow) and if asked his best guess is usually a year.
It's not easy but over time I've come to (mostly) accept that it's just how it is. I jokingly refer to myself as the Morgan Freeman of our lives as I'm the constant narrator. I tell him stories about things we've done and places we've been, in much the same way as you'd tell your children funny stories about holidays/birthdays etc that they were involved in but were too young to remember. So you could still do that when they are there and they wouldn't necessarily know that it's as much for his benefit as theirs. I also tell him bits and bobs about his earlier life from things he's told me in the past, and regularly go over his work history and what he did after leaving college - which is as far as he can remember.
If it sounds like I've found some heroic way of coping with what is the most horrific and bizarre rug-pulling, then being totally honest, I think I cried so much for the first 2 years I'm surprised I didn't turn into some sort of human raisin. It hurts and I do really feel for you. But time does its thing and eventually you do move towards just accepting it and moving forward. Counselling helps a lot.
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