An avid researcher looking for anything that will help me on my quest to support my partner who suffered a severe TBI after falling down the stairs on the day of his retirement.
8 months later following a residential intensive and dare I say it successful rehabilitation I am trying to find out as much as I can to help my partner of 34 years to live a life with some meaning and purpose.
He has been left with no executive function, a memory that is challenging at best and like a goldfish at worst, but he has become a much softer version of the successful man that he was and that makes things easier.
My options......... manage to provide 24 soft touch supervision or agree to an alternative of residential care.
I don't know what his future holds, nor what mine will look and feel like with the pressure of having to work from home so I can provide the care but I will try, forever, to save him from residential care.
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Tilly1422
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Hi Tilly, can't quite grasp the timescale of the TBI from your description. When you say 8 months residential rehab does that mean 8 months since the accident?
I'm asking because 8 months is not long in brain injury terms. Did the rehab center say he would not recover anymore because you sound as if you are saying 'that's it' and you are deciding what to do. Am I correct thinking this because it's how your post sounds?
Yes his fall was on 17/12/23. He followed the generic pathway of intensive care, then stepped down after 2 weeks, it was evident at this time there really were significant issues but after 2 months he moved to residential rehab and now reached a plateaux.
They worked really hard with him but they just cannot reach the area of understanding that will give him the insight into the injuries and their impact on him. The exec function creates challenges as he cannot measure risk nor plan etc.. He is blissfully unaware of the deficits but he is a million miles away from where he looked like he would be after the injury.
We are tiptoeing through being back home and in familiar surroundings, but have been all but abandoned by the services I was lead to believe would follow him. It’s a work in progress but I am worried I am overstimulating him. I have no guidance really and trying to work out what works for him and what doesn’t all whilst navigating a full time job. He is affected significantly by noise sensitivity and anything from birds tweeting to the noise from being driven in a car. Fatigue seems to have hit him since being home and he sleeps a lot. It all feels very hit and miss but I am determined to try and help him live as normal a life as I can. It’s very isolating though.. 24 hour supervision is a challenge and I’m worried also about missing something that may put him at risk…..
Hi, in one way I'm sorry you feel abandoned, but in another way at least you know the reality of the situation. Unfortunately, this is the reality for most people with brain injuries; many here will tell you that. You must realize by now that the NHS has been underfunded and there is a lack of services and expertise. There is also a bit of a lottery between health authorities and devolved health regions ie England, Scotland, Wales and NI because they have different health systems.
What part of the UK do you live in?
What you can do right now is phone the Headway helpline, the number link is pinned up on the right-hand side of this page, they may give you some official channels of finding help.
If you live on Merseyside you can get real practical help from The Brain Charity thebraincharity.org.uk/
You can phone them for advice even if you are not from Merseyside.
There's two way to get you going.
From your description it sounds like your partner has what we all call sensory overload. Too much light or visual stimulation and too much noise or the inability to filter sounds. This is a universal problem for people with brain injuries. BUT there are things you can do that will help.
When you go out you can use noise cancelling headphones, (you might be able to get some on the NHS but you may not and you'll have to wait for months or years to find out, just buy them yourself because you'll have them now and save all the hassle), the other thing is to get ' neutral grey transition lens glasses' these are glasses that react to the amount of sunlight outside. Get good ones with wraparound frames, remember neutral grey.
Indoors you can reduce the amount of sunlight in a room by getting blinds that allow light in but filters out the harsh light. You can get them made to measure from Dunelm, John Lewis or any supplier.
The other issue is indoor lighting, fluorescent or LED lights and computer / TV screen lighting is really bad for most people with brain injury. (Ironically the worst places for this type of lighting are in hospitals). These make you really fatigued because your brain expends it's energy trying to process the light from these types of light.
You can change your lights to have 'incandescent' light bulbs. These are the old style bulbs, they are more expensive to run but they don't cause the issues that LED's do for people with brain injuries. As for TV and computer screens there are no alternatives, they are all LED, so the best thing is to simply limit their use or totally avoid them.
Another thing you can do to reduce noises indoors is to get sound absorbing acoustic panels on the walls. Most rooms in most peoples houses have echoes called reverberation. This can be reduced by having carpets and soft furniture. Minimalist spaces, ie wooden floors, tiles or vinyl flooring and bare walls are really bad for reverb because there is nothing to absorb sound (again hospitals are the worst places for this). If you can have a room for your partner (and yourself of course) where the windows have blinds that reduce the light, you have incandescent lights, no TV or computer screens, the floor is carpeted and has soft chunky fabric furniture and the walls have acoustic sound absorbing panels the sensory impact will be reduced significantly. This will reduce fatigue and allow his cognitive processing to start redeveloping.
Here's a couple of pictures of the blinds and acoustic panels I have in my house just to give you an example.
Oh wow, that's so helpful. Thank you so much ❤️. I am from Liverpool but moved to Manchester 35 years ago so all of his treatment has been managed here but it is so useful knowing about the brain charity and I will definitely use that. I think the fact that he has only been home just over 4 weeks, I am trying to find a way to be an aid to him rather than taking his world away and him have life happen to him, as he has recovered sufficiently to still have a good quality of life and whilst he is unaware of what his injury has limited him to and the fact that all of those things we take for granted such as hindsight and foresight means he cannot seems to grasp 'looking forward to things' nor apply what he knew before (he was a big golfer and was retiring to basically play more golf - which he doesn't remember) he can live in the moment and I can tell he is enjoying whatever that moment is. I suppose I am just trying to make what I see as unbearable changes for him (even though he is unaware of them) more bearable. I am not sure if that makes much sense to anyone else, but for me, my choice to bring him home to live his life rather than going into residential care was because I believe he will have a better life where he will have some control over how each day goes - life wont just happen to him. I don't think I expected him to come out of a fully resourced unit (which was beyond amazing) to just me though and whilst social services are putting things in place for him, I was told that even though his discharge notes holds all of the information required to have neuro rehab, occupational health and speech and language support in the community, that the waiting list, just for the initial assessment is min 7 weeks away (from Friday just gone) which means he will have been home 3 months before he even gets an assessment. They are putting in place a sit and support for 3 afternoons a week, at some point in the future which will bridge the gap between when it starts and something more permanent with a matched person (I am unsure what this is but believe someone will come and either take him out or be with him during my working hours). I am worried they will withdraw that if he is so fatigued that whilst they are here, he just sleeps so I wanted to get a bit of a handle on what causes the fatigue so I can minimise that if possible but I cant really find any consistent links as everything seems to cause fatigue, especially stimulation. I cant thank you enough for the tips though, I will make a start on the changes in the hope he gains some relief, especially the ear defenders. I will be picking those us this weekend for sure 😃 because I am absolutely sure they will have an almost immediate impact.
Living in the moment is a good place to be, I totally understand, I was there myself and it protects you from anxiety (thoughts/ worries about the future) and depression (thoughts about the past). That's a good thing, I never had mental health issues like many people do.
You are obviously looking in from the outside and I know you want everything to be good for him etc but you may need to consider what it's like on the inside looking out. You may think he has no grasp on what's going on but in fact many of us did have a realization of what was going on but we simply lacked the functions to engage.
Something else to consider, 9 months post injury really is very early. I remember being told this 8 months after mine. This is him coming to the end of one phase and heading into another, please believe me when I say he will change and improve so much over the future if he gets the right conditions.
Don't worry too much about the fatigue and the sleep, sleep is what everyone with a brain injury needs at this early time, it allows the brain to recharge. The fatigue can be caused by overload but it is also caused by rewiring the changes that are happening to him right now.
There was a neuroscientist Jill Bolte Taylor that had a stroke and she wrote a book called 'My Stroke of Insight' this is well worth a read because it describes the internal world of the brain injury experience. strokes and TBI have many shared characteristics. You may also like to read 'Mindfulness and Stroke' by Jody Mardula, again it will give you an idea of the internal experience of brain injury.
The thing to realize in these books is that the experience of having a brain injury is incomprehensible to someone who has not had one so they will put the experience into perspective for you.
Again, an amazing perspective I hadn't even given any thought to at all is what his world looks like looking out 😳 I think I am judging everything based on how I see he has been affected and am trying to give him the best experiences that he he cannot, any longer, appear to arrange for himself.
You are right about living in the moment. I have had discussions with friends around this change in our lifes and everything being about that moment in time and how that changes how your day ends. I think we spend so much time planning and waiting for a plan to unfold that we miss the here and now and the mindfulness that it brings.
I am so hopeful after having read posts on this forum that things may improve. We do have some little memory lessons we go through during the day, just ad-hoc, but even I can see improvements doing that. They are basic, such as what did you have for breakfast, lunch and dinner. These questions initially were lost on him as he genuinely struggled to recall, but this week he rhymed off the full list at the end of the day which was massive for me.
I will take a look over those books, anything at all that will give me the tools to help him is all I am looking for.
Again, many thanks for your responses to my post - It really is quite overwhelming to know that whilst I feel quite isolated in this new arena and on this new journey, that there are people out there with a whole host of experience that they will readily share and that genuinely feels like it is relevant rather than the generalisation of reading medical approaches🙂
hi i experienced TBI so im sorry if i dont make sense at any point.
The biggest thing i have found really nice and endearing was trusting me and allowing me to do what i want, but still being arround to make sure im ok. Im 11months in now and my partner left to deal with her own issues so its been tough but just being arround to suport them is the key. As i wont lie a-lot is taken from you as in not being allowed to drink etc and makes you feel like a child, set limits by all means I'm allowed 4 pints now 😅 gives them a sense of normality and its the small things that achieve that but if like me theyll doubt there thoughts a lot now 🤦 so having second person to help make plans and things is nice and my mates are like a god send. 🙂
I completely get where you are coming from. Being able to be a part of your own life choices with someone just to guide and support. I think that is my main objective, to step to the side as often as I can (whilst knowing he requires 24 hour supervision) but him be able to contribute to how he wants his day to go. Yes, our friends, neighbours and family have been beyond amazing. Very supportive and reassuring. He is very unsure of any decisions and does need someone there to guide so I completely get that approach too.
Hello Tilly. Sorry to hear about your husband’s fall. Mine also had a fall and suffered severe TBI 4 years ago. He was away from home for 18 months in hospital and rehab establishments. He has been home for 2 and a half years now with 24 hour carers.
Have you got in touch with social services? You would probably be assigned a social worker who will be able to help you . I had the community physio, speech therapist and occcupational therapist involved after his return home. Ask your GP for referrals.
It is very hard and draining to have your loved one at home but rewarding as you know you are doing for him what you would like him to do for you in similar circumstances.
All the best. Please ask more questions if you have any
Oh wow, that's such a long time before getting home. My husbands rehabilitation journey, whilst very challenging really took him from being unable to string a sentence together to bordering on what would appear to be 'normal' as long as everything remained superficial such as the weather, birds in the trees, cars on the road etc so I am thankful for what they managed to achieve with him but he is in this 'middle ground' whereby he has functionality but doesnt have the cognition to manage that. He didn't qualify for the CHC plan due to the fact he is mobile and for all intent and purposes capable as long as he has someone with him and is never on his own - the only way I could do that and evidence I could do it to prevent him having to go into residential care was to put interactive cameras in all of the rooms of the house (except bedrooms and bathrooms) that alarm when he moves around (bearing in mind I am working in another room, full time) so I observe him on cameras and intervene when necessary. For the most part he will just wander to the window, or watch a tv program or sleep but there is already a plan via social services but they have stated it will be another 7 weeks before he can be assessed, then they have to actually pull together the specialities. I am just dumbfounded that you can go from a rehabilitation center after 8 months where there are a myriad of knowledgeable staff with interactions focussed on him to absolutely nothing at all. It is draining, you are right, but I can see it is a much better option for him and I am flexible with work (they have been nothing short of amazing during this time and continue to be so) and you are right, when we measure what we would like them to do for us if the tables were turned, that is my driver. Thank you so much for your reassurance. I came across this forum by chance and boy am I absolutely delighted that there is some support and knowledge out there from people who understand and can advise a newbie through the beginning of this journey. Thank you so much, I have picked up so much already, just from one message ❤️
Blinds
Sorry the photos may have been flipped sideways; but these are simple things you can do in your home that will make a big difference.
My partner had a cardiac arrest 3.5 years ago (age 47) which left him with hypoxic brain injury. This has mostly affected his memory (severe long and short term amnesia) but also some executive function, apathy and fatigue. He was in hospital for 2 months waiting for a place in neuro-rehab and then another 2 months in the rehab centre.
Like your husband, when he came home to my care he needed 24hr supervision. I had 7 months off work, then worked from home and have now progressed to 2 days at home and 2 in the office. He spends 1 day a week at Headway and 1 with his mum.
He has no memory of his work or adult children, no memories of his father who died 10 years ago, no memory of our relationship (though he knew who I was, but didn't know how). He confabulated constantly, thought everyone he saw was his Dr, and would confuse things he watched on TV with his actual life - some simple things like watching Bake Off and then looking in the kitchen for what 'he'd just made' and others more dramatic like insisting he'd been living on a desert island for years after watching the film Castaway!
Before his brain injury he had a high level job, was trustee for a charity and welfare officer of his triathlon club, none of which he could remember let alone continue with. Like you I was desperate to find a way for his life to continue to have meaning and fulfilment. If I'm honest I spent a long time searching for the man he used to be. We'd only been together 3 years so I can't imagine how you must feel after a lifetime.
He was discharged from rehab in the July and we were told it would be October before he could be seen by the neuro OT team. In the interim the rehab Centre arranged for us to have weekly Zoom calls with his OT from rehab, just so we didn't feel completely abandoned - is this something you could suggest with your husband's rehab team?
There has been no miracle cure but 8 months is still incredibly early, though it no doubt feels like forever. Like yours, my partner is quite laid back about his situation and after the first few months he was no longer bothered about the loss of his career. He is happy to be retired. I've worried a lot about him becoming depressed but he seems genuinely content with his life these days. Due to his memory issues he feels little connection to his former life and says his lack of memory isn't something he thinks about unless I mention it.
This is a lot of ramble sorry, but what I wanted to say was that I understand your position and that although everyone is obviously different, given a lot of time things can improve way beyond expectations and well beyond what the professionals will try to tell you. My partner was able to return to driving after 2 years (he doesn't go far and but its a grain of independence and normality), social services sent someone from the maximising independence team who helped him return to the gym and he now does this twice a week on his own, he has returned to his running club (again very local - we practiced walking to the meeting point for months before he did it on his own) and has since taken part in numerous running events, and he travels to Headway on the train every week on his own. He is also now fine to be left on his own for a few hours. The trick I find is routine and repetition. Everything was practiced over and over until he was able to do it by himself. We used a blackboard in the kitchen to sketch out a weekly routine, labeled drawers and cupboards, took photos of everything and linked them to digital picture frame, got an Alexa Show which links to his diary, photos, reminders, and allows me to 'drop-in' to check on him (he doesn't have to answer it which is helpful as he's often oblivious to his phone), and also put a tracker in his phone so I didn't lose him!
None of this was achieved overnight and its all still very much trial and error but life is very different to the bleak picture when he first came home. The biggest change though has needed to be with me. I have had to learn to let go, stop comparing now to how things used to be, or how we had seen our future. I have needed to get to know this new person and stop fighting to find the old one. And most of all I've had to try to understand how he sees his life now, what he needs/wants from life now is much simpler and more basic and he just doesn't worry about things which he would previously have been devastated about. I felt for a long time a loyalty to who he was, almost like that person was still there watching me, but that person is gone. I am committed to him having a good life, and he does, but it is very different to what he would have wanted before.
To be honest sometimes I am quite jealous - he is happy. A good day for him is spent 'relaxing' and he does plenty of that. He doesn't worry about anything day to day, because he doesn't remember his days. We go on holiday fairly often as his prospective memory works better, so he is able to look forward to things and enjoy them, its just that its all gone a few days later. I am trying really hard to take a leaf out of his book and live more in the moment - its bloody hard to do but I've seen the change time can bring so hopefully I'll get there.
The best thing I can recommend is getting some therapy for yourself - having someone uninvolved who you can offload to without guilt is worth it's weight in gold. Oh, and keep a diary - change can be so hard to see when you're living in it. It helps to be able to look back and see how far you've come.
So sorry for the epic essay above! Wishing you both all the best xx
I have sobbed reading your message - it seriously is not a ramble and I am so thankful for you sharing your story with me. It feels very much like a mirror image of where we are, the parallels are uncanny. I am so sorry you too are travelling this road.
I feel so sad for my husband and all of his plans for his retirement that he will never remember nor manage to pursue and I think this is what makes me feel so devastated for him albeit he doesn't remember nor relate to them and similarly is very chilled and softened in terms of his personality as a consequence of the fall. He has been a 7 day a week worker for the 34 years I have known him and was really and truly looking forward to his retirement life. We are lucky that after around 9 weeks he sort of knew who we all were. It was really hard for our boys to be coming daily to visit him yet he had no idea who they were, but over time when they came he started to wave and smile when he saw them. He use to tell me I had been in to see him and we had a hard road too with the confabulation. Only last week he told me about having played golf, after watching it on the tv 😓 He has become interested in the birds in the garden and spends a lot of time talking about the penguins (magpies) and the hedgehogs (squirrels) and we have lived a full life cycle of a family of foxes that sit below the window when he sleeps, after having watched a wildlife program.
I feel elated that your husband has regained some of the independence he lost and is able to drive again, that feels like a million miles away and never thought for a moment that it may be a possibility for him but your story has offered me some hope of that.
My husband is also very compliant. He will say he is going to the shop and I will say but you're unable to go alone, he will say okay then. There is no challenge from him regardless of what the scenario and I am thankful for that, although time may change his decision to tell me first, but similarly to you I have an apple tag on a watch strap that he wears, the house is completely camera'd up and I view him whilst I work through the Alexa. The external doors are alarmed so I know if a door has opened and whilst he is able to potter in the back garden (although at this moment it absolutely exhausts him), he doesn't try and venture out of the gate and cannot work out how to unlock it.
Oh boy, I am so grateful to you for your story, it must be so hard for you after just 3 years and your partner is so young too. I am genuinely heartsore for you.
My work have been nothing short of amazing and their support has been invaluable. I will be honest and say that I do feel the pinch of having so little freedom as after 34 years we had travelled down different interest paths and whilst we had our family life we had two very independent lives with different interests and I do pine for the life we should have been planning. But his brothers are are much older than him and have health issues of their own so I have little support that I can depend on in order to get out independently or even just to catch up on some sleep as he is up multiple times during the night, mainl just to look through the windows into the garden but its still disturbed sleep. My sons work for the services and therefore work random shift patterns and one of them lives 160 miles away so at this moment in time my 82 year old dad is stepping in to sit with him whilst I work which I am so grateful for.
I do wish you both the very best and will be forever hopeful that my husband reaches the same/similar thresholds of independence again. You have lifted my spirits unbelievably today. Thank you so much for sharing your story X
I fell off a bicycle in 2005. I spent a couple of weeks in a coma, 8 months in hospital, and 18 months off work on sick leave. But I *did* go back to work (as a university lecturer!).
In the beginning, I knew mu husband, and our toddler daughter, but he brought a cute little baby into the hospital. When I asked who she was, he said he had told me many times now that she was our second daughter. She was 8 months old when I had my accident. I still do not remember that second pregnancy, or us moving house so that we would have room for baby number two, or any of the first year of her life.
My short-term memory was awful for a couple of years, and it is still not perfect, but it is *so* much better than it was. I am still missing the chunk from about 18-months prior to the accident, and 6 months afterwards.
For months afterwards, my speech was awful - they had signs in my hospital room, for me to point to. It is still not perfect, but hey, I went back to my job as a university lecturer, so it can't be that bad! I think I still hear it not being normal, but most people don't know anything is wrong.
I am officially registered as being blind, but I would say I am just 'sight-impaired', an d can see well enough for most things (but I certainly can't drive!).
So, the first few months are where you do most of the improvement, but it certainly does not stop. 8-months into my recovery, I was still off work sick.
Don't think he has stopped improving. Give him lots of space, and encouragement.
I am so encouraged to hear about your recovery. My husband had a fall on 1st Feb this year and suffered a traumatic brain injury. He is currently in rehab, having been in hospital before that. I recognise a lot of the challenges he faces through the description of your symptoms, so thanks for sharing your story as it's so difficult to know what to expect in this situation.
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Feeling like a prisoner
One step forward three steps back
Carer fatigue 
Son battled through again.
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