I am looking for views on the importance of long term friendships when you have had a brain injury. I'd really love to hear from survivors, or friends and family.
My best friend has a brain injury. I used to be his primary carer for years, and now I see him every week and his other friends have stuck around too, we've all known him for over 20 years. Whilst many talk about friends drifting away, this hasn't happened with him. He was lucky enough to have made long term friendships before his accident, and has a very loyal nature, which does not appear to have changed. We enjoy talking about memories together, and just listening to stories, old and new (he is non verbal). He always seems to have more emotional responses to older memories, and I have always seen that his long term memory is good, whereas there is limited evidence of him fully forming newer memories, with the same level of emotional attachment at least. I researched hard in the early years, and was always taught the importance of maintaining these long term friendships, as the memory and the retelling of memories will maintain his sense of identity. We were also told that making new friends might be more difficult, even if he were to socialise with other TBI survivors, to provide some sense of sameness in this friendship group.
His current case managers are letting his long term friendships wane and are trying to exclude these friends. They are trying to suggest his long term friends do not understand his disabilities (we all worked closely with him through his rehabilitation for years and arguably know way more than his case managers). They suggest that talking about old memories is painful, only reminding him of what he has lost, and he is moving on and wanting to make new friendships with other TBI survivors. His case managers do not really know him, hardly visit and do not have TBI experience.
I should say - the case managers say this because we are raising concerns about them, we are all really worried about our friend and how isolated he is becoming.
We observe he has always enjoyed reliving memories, and even when he has emotional responses, it feels normal for him to live through this and not repress his emotions. I have observed that the less he sees his friends, the more depressed he becomes. I have also observed that he does not massively seem to connect with other TBI and wheelchair users and this has actually been forced on him, or contrived. His case managers force him to go to groups, even when he doesn't want to, or see to enjoy it. It is physically difficult for him to connect being non verbal and without that long history and emotional and shared connection, I do wonder how successful this will be. I do not think he sees himself as only disabled, but as a human with disabilities, i.e. a whole person, and I think, rightly so, this is how he wants to live his life. I am also worried that his altered memory skills mean the idea of 'moving on' is also contrived - moving on from what? - I worry that he only has firmer memories of longer term things, such that moving on for him, away from his closest oldest friends would mean a life he might not even recognise as his own - no memories or therefore identity. None of us have observed this moving on, just simply him getting more miserable and lonely.
Does anyone have any thoughts on this, or can relate this to their experience of the need for long term friends after brain injury?
From everything I have read over the years, care providers seem to do this - distance people from loved ones and 'treat' disability, at huge cost to the individual.
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reo12
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It's good to see you have stuck by your friend. The care providers are probably trying to make their lives easier by containing your friend within a similar group with similar needs. A kind of regimentation.How does your friend communicate if he is non verbal. I'd be interested in this because other communication methods can be developed to a high level.
My husband sustained TBI March 2020, seems bad news spreads fast, initially people offered to get shopping friends and family. But by end of May 2020 they all disappeared friends and all our family. By August my long term friends from different walks of life like different friends from work, university just disappeared including a 24yr friendship that frizzled out as my focus is purely working on husbands rehabilitation, home visits from brain injury team, working, 2 children. Now in 10th month, i cant count one hand with friends or family on.
Im loyal, a giver, honest person and no expectation from others and despite no support networks my own principles not changed its who i am. Ive been with my husband since teens, be 20yrs we been married this year, im 38.
My husband has short term memory lucky to get to day 2-3 before all new info goes, but long term memory is great and this has supported his communication hes verbal and has word finding difficulties but with adjusting. But sharing long term memories is good for us and many old friends with or without TBI health conditiins would talk about past when seeing each other its quite normal.
I got no one to tell the little funny things too with husbands progression as no one has gave time, been loyal enough to stick around to see or understand my husband. Sadly he has behaviour difficulties which i feel reason people disappeared, couldnt handle it, didnt give time to educate themselves on how to respond. Covid barrier too with great avoidance tatic.
My husband is vulnerable he cant regulate poor behaviour from himself or others and rightly so im his voice to stand up for him, infact i am the only person that does this. He breaks my heart with unkind words and behaviours displayed but im his loyal trusted wife who has become protective which i never had to do prior TBI.
You are a good friend along with his other peers, dont let them disturb what you have, he is very fortunate to be surrounded by good people. All the best for all of you challenging this professional who just doesnt understand the importance of friendships, social interactions with loyal people it literally does aid general wellbeing. I understand if they need to make changes to his care plan, but removing loyal friends is not one of them.
If they have some expectation like providing care or doing tasks, they just need to be honest, it could be just accessing the community going for walk, shops once a week that would also meet his needs without care support input mind with covid this is not realistic.
You could request he has an advocate to support him to highlight what he needs.
I haven't had close contact with family or friends since the Covid threat last March and, despite them phoning several times daily, I'm now finding depression creeping in after months of isolation.
So for someone with such limited mobility and communication it seems a no-brainer that loyal friends with unlimited access to memories of past events are a rare and invaluable asset for maintaining your friend's wellbeing and positivity. (I'm guessing the Covid restrictions must complicate things though ?)
It obviously suits his particular needs to associate with able-bodied folk who treat him as equal and offer welcome distraction from his issues. Of course I do understand his case managers' fear that friends often drift away leaving the disabled person unprepared to cope alone with full time reality.
It's a tricky one Reo12 as professionals are duty bound to provide unlimited, ongoing support whereas friends (as individuals without authorized duty of care) might become unavailable for one reason or another. I hope there's a compromise which enables both !
This case manager seems to be working on making his own life easier. It is counter intuitive to push long term friends away. I have a ABI, long term memory is crystal clear, short term memory is stressful. I worked in care for many years, and much of our role was to encourage, and regenerate former long term relationships. Obviously there were some negative influences that we had to safeguard against. I have never heard of any care management purposely breaking links. Identity is formed from birth onwards, to deny all that has gone before could be seen as an abuse of power. I personally would raise this with the commissioning body or the CQC as a safeguarding issue. That is my penny's worth, and I base this on experience, and having recently having to study the national NHS mandatory training which included safeguarding.
Thank you for the replies so far, you have provided some interesting perspectives.
I do understand the duty of care point, except we are 14 years on and friends haven't disappeared, they want to remain in contact, but we have the problem that the case managers are actually doing nothing to maintain these friendships, have attacked his friends motivations when they raised concerns, and appear to be wanting to reduce my contact. There are deliberate efforts being made to reduce his contact with friends, I think because or when we raise concerns. It feels like they just don't want any eyes on them, it is very un-inclusive. Has anyone else found this?
Firstly I want to say bless you for sticking by your friend. Loyalty is really important to everyone I think and it must mean a lot to your friend who is truly lucky that his friendship group has remained intact. I was born with my TBI so its not the same situation. But inwardly I am pretty shy and unconfident which has always affected my ability to make friends. I have contented myself with a small circle of good friends though that have stuck with me. Nonetheless someone I thought a lot of drifted away when I was going through a difficult time some years ago. I guess she just didn't know what to say so chose to cut contact instead. I would agree that your friend's care providers are maybe not being as empathetic as they could be though. Cutting him off from long-term friendships doesn't seem the right way to go. And I disagree with them that long-term memories aren't important because they make us who we are. Also if it makes your friend happy to reminisce that can only be a good thing. Maybe they think that seeking new friendships with TBI survivors would be good for him though as sometimes a shared understanding of what TBI means from those who have experienced it is invaluable. Is there any way you could maybe meet with the care team to discuss this? Lulu x
I think long term friendships r everything,as these people know u,know ur struggles,n r there for u.In my case..people just dont get brain injury,get tired of the same things I say and do and move on.
Hurtful really.
I do have some newer friendships thru HU and its helped enormously..as like people understand.
Sound like as you say he doesnt want to consider himself disabled and remembering the good times from the past give him comfort perhaps?
Are those trying to change things trying to get him to accept his disability by mixing him with others? He may not like that as it may upset him to see himself in that light.
Ultimately time will allow such an acceptance, but I dont see the point of forcing it. (Just because it makes their ‘life’ easier to pigeonhole him in that way).
Just my thr’pence worth of thought on the matter based on reading your post.
PS loyalty, friendship and trust will be very very important to him. Congrats on sticking with it for his benefit. 👍
I have read you, actually Quite Sad 'Post', a couple of times. What Comes Over, very clearly, is the True Love- and Caring/ Compassion that you ALL 'feel' for your Friend.
I'm going to be 'Generous' and Suggest, that perhaps, The Doctors- and Carers- don't Full Appreciate this. That is to say that 'they are Not aware of The Closeness', you ALL had with this man.
Can you not, simply ask, for a 'Meeting' with your Friend's Current Carers. Ask that, your Friend might attend too, that way his- quite apparent Joy, at your words- should, in itself, convince 'Everyone', to involve you ALL- in his Future Care. I Understand that, with your Friend being Non-Verbal, 'Communication'.... with ALL 'Parties' is necessarily difficult.
There was a man, who used to attend our Headway Essex (a Brain Injury Support Group), who was- pretty much- non verbal. However Terry COULD 'make himself' Understood, most of the time. Yes there were times, of considerable Frustration on Both 'Sides', but mostly he WAS Understood.
Does, your friend, know any Sign Language- even some Basic Makaton? There are some, 'very simple'- that is 'Easy To Learn'- Gestures, that can 'Help' tremendously. (even that he Needs The Toilet', for example.) There are 'Signs' for 'Hunger', 'Thirst', 'Pain', 'Please', 'Thank You' 'Wanting an Object/ Specific Thing' and- especially important 'Wanting To Be Left Alone'.
Do see if, you All, can 'Arrange A Meeting' with, your friend's, Current Carers. It might, Very Well, end up Benefitting you ALL.
Sending My 'Very Best Wishes'.... Happy New Year 2021
It's been really interesting reading your responses. What comes out strongly is just how important you all as brain injury survivors view friendship and inclusion. It is also interesting to hear about the comfort you get from groups where you feel a sense of sameness, I guess the groups just have to be the right groups, and like anything, that's trial and error, but worth pursuing.
I guess the problem for my friend and for us as friends is possibly a lack of understanding or empathy regards this importance. We still all feel that whilst they say they understand (when times are going well), this is potentially only lip service, because as soon as we raise concerns, rather than answering them, our friendship comes under attack and they suggest we are distressing our friend, or he's moved on. It's been a repeated thread sadly. It only ever happens when we express concern for his welfare. You could go literally years in between, no one mentions any issue with contact, conduct, anything, then you raise a concern - and off they go.
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