My husband sustained Traumatic Brain Injury March 2020 and was on life support for 5 days whereby we had to say goodbye. Thankfully after many attempts he came round and in total spent 8 days within intensive care, Southmead Bristol. They explained he would require 24/7 care. I brought him home end of March driven due to Virus. Hes been home 6wks was told daily visits from brain injury team, but understandably due to virus no professional support. Ive had 4 telephone calls with offer of residential respite, which I have refused. When my husband is fatigued, he also presents with stroke symptoms, he is at latter part if post traumatic amnesia. I must point out i have soley been caring for my husband with a 2 yr old, 14 yr old and no friends/family support. Ive been signed off work as i usually work full time, but need to plan for the future. People are mentioning PIPS, Carers Allowance etc.. i just dont have a clue about which direction to go, this is all new. Any advice what i need to do.
Advice husband recently sustained Traumatic Brain ... - Headway
Advice husband recently sustained Traumatic Brain Injury.
Hi New_beginning .
I Admire your strength TBI is also something I have been through myself It takes time for someone to find his/her feet after such an Accident you can claim a Careers Allowance even though your his Wife It takes people some time to adjust in all aspects of life including speech and Balance Walking Breathing Pain Management It can be a hard Long battle and he is so Lucky to have you there with him he should be on either ESA + PIP If Disabilities are Present Disability payments are in the PIP section of the DWP It sounds like they won't be trying to send him back to work and if he ever does it should be done with light work only and something he gets some Enjoyment from will help him the Brain is a remarkable Organ we all have and has a great way of trying to repair itself the best it can do but he will find a levels in different normal day activities he can reach watch for things like Depression Anxiety and like you say Fatigue It's very Important that he takes his own time with no pressure on him with the recovery process with PIP usually assessments are required and they like to knock you back if they can do about 3 times or in some cases even more than that If you go to one have it Recorded you can also have a copy of it if you wish If he .
I wish you both well and please keep in touch if you so wish .
Thanks for the post and be Brave for both of you Hope the Information was helpful .
Thank you, I am hoping PIP contact the professionals but appears that would be too easy. My husband didn't meet the cognitive baseline assessment on discharge and no assessments from professionals since due to virus. I am literally on my own. Just the thought of being challenged is a tearful process in itself.
Hi New_beginning .
Like Lynd said . it would be a good idea to talk to the Headway Group but with the way things are at the moment it makes it more stressful for both of you If you have already filled in a form for PIP it can take 6 to 8 weeks on a normal operating system in urgent cases once explained your situation it's possible that the DWP Adviser allocated to you looking into your case might prioritize your claim you would need your Husbands Consent to talk on his behalf in that claim once they are operating again I think that for cases such has yours they should be able to manage that on the Phone .
He needs to see positivity hope and Love and a way to a better way of life than present time it takes time for him to adjust like yours is also affected .
mine was a road traffic Accident car rolled over a few times ? Result TBI Neck fractures in 3 places c1 c3 c4 I was very fit at the time just 18 years old it helped me so much in recovery in the early stages of the Injury I still worked on and off with jobs I could do I still have a Mountain bike I exercise on and keep fit I drive a car worked in warehousing Logistics forklift truck driver my employers never knew I was a person that had at one time a TBI Head Injury True Sadly .
my hair grew over the scar who would know !
people are blind in the way they look at some one who has had an Head injury the Headway Group will send you a form to fill in for an Identification Card for him he needs to carry it all the time in his wallet you send it to London and you should get it back in about 2 weeks of sending it .
sometimes the people that have been through the same sort of injury are sometimes the best to talk to .
thanks again for the reply and you make sure you look after yourself at the same time .
Yours Sincerely
1Simulated .
You truly are an inspiration. I have look at identification card, thank you. Not completed yet, just matter of time but its good i can save parts and go back with time restriction though, so hoping to complete over weekend.
Hopefully when local group starts up i can speak to someone with common ground, as friends/family are in avoidance stage and dont see the 24/7 care thats required with a young children on board. Thank you for taking time to reply. I really appreciate it.
Hello
Your Husband is home very early and you Certainly have your hands full with children as well.
In my experience there was little support once home. They had promised an OT but after several weeks I had to ring and he had never been referred. Eventually he had an hour a week.
You should have a carers assessment. This will highlight the problems.
You should send for a PIP application form. Take care with how you answer this and citizens advice give online guidance.
Turn2us is also a good website to read.
You could apply for Universal credit but this depends a lot on your income at the moment.
PIP is given whatever your income.
Give Headway a call and they will help you.
Applying for these benefits is a maze and takes a lot of your time. Try to persevere and you will get there in the end.
You have so much to do and I would say that if you are not coping there is no shame in it and reconsider respite.
I fully understand your reasons for being reluctant to do this at the moment.
Good luck.
Yes 16 days in total, he didn't meet cognitive baseline assessment on discharge, the hospital couldn't / didn't have the staffing levels due to virus, he kept obsconding and their patience's ran rather thin. My husband is a gas engineer and unlikely he will return in occupation. Currently speech, memory, fatigue, behaviour very poor, however its very early stage, so i have to stay positive, its the only thing keeping me going.
I will wait for paperwork and in mean time make contact with these services, thank you. Im literally in autopilot, my day goes click of a finger.
It is very early stages, these things can take months or years to recover, so please try to stay positive thouhh I can only imagine how difficult it is fore you to cope with especially with looking after children too. Wishing you and your husband all the best.
Reading my first post, this stuck out, because I just couldnt imagined months, or years at that point, but now 14mths later I've hit my limit and feel ashamed in myself how I would like this nightmare to end, rehabilitation still trial and error home visits now back on track and hes not at stage to receive BI OT, naive of me thinking giving my all and everything would make difference whilst juggling children (dreamer), I'm still on my own, no one to talk too and still struggle talking about it. Our son sat final exams this week. Results mid August, sad as it seems in my belief if poor exam outcome, I have failed managing his needs based on home situation
You haven't failed anyone NB. What your son will take from this terrible 14 months you've all had is the inspiring example his brave Mum set him, in dealing with adversity, and selflessly caring for your family.
Exams are just exams, trust me, I've sat a lot - and was still taking and (usually!) passing them up to the last seven months before my accident (and I had another one in the pipeline 🤔). Sometimes they come right on the day, and sometimes they just don't. There's always another day to do the retakes. See if you can ask his teachers about 'extenuating circumstances' for him this year though - but you'd need do it before the end of term and before his results come out
Take care
Jen x
I have thought about doing Appeal, but I thought I had to wait for results then appeal 🤔😬. Will call school to check process x
I think an appeal is different from stating there are 'extenuating circumstances' in advance with the exam board.
An appeal is asking for the marking to be checked again by the examiner - which can change a mark if they don't agree with the original examiner.
Extenuating circumstances is where there are other strains going on when you are taking your exam which might affect your performance in the exam - and asking if the exam board will take that into account when awarding a final mark. It varies on different exams and examining bodies, in what they'll allow - but it's worth finding out about it from the school - it would have to be done in advance of the exam though.
Be utterly frank with the his teacher and head of year about everything that's happening at home this year, and that you think it will be affecting his work - I know this isn't your favourite thing to do, but it's about giving them hard facts to work with.
There's no harm in it, and it might help x
It was GSCEs , his head of year totally aware of husband he was brilliant getting support with school nurse in place as Headway couldn't provide with covid, his two form tutors aware.
I'm not sure other teachers aware. I'm hoping he goes into 6th form to receive another 2 years of education, hes one of the youngest not 16 until mid July. We done virtual evening beginning of month and he has to meet criteria of 5 or above.
I will contact current head of year and then contact 6th form head. Results day 12th August.
I carry guilt from letting myself think family, friends and professional be at my side supporting when I brought husband home, I dont regret decision bringing husband home, but I carry guilt what they witnessed and know it will stay with son, which will impact on him psychologically.
Hes at an age which is delicate and I feel be age development he would fully understand the sacrifices and decisions made x
You made the best decision you could, with the information you had at the time. It's all anyone can do. Please don't beat yourself up. You're being very good empathising with your teenage son, and yes - all the teenage years can be a bit of a balancing act - but all you can do is keep talking with him and keep that mother son communication going. It's sometimes surprising just how understanding and mature a young lad can be (when they aren't in full-on silent teen mode!)
Good luck with the teachers, I hope he does get into his sixth form x
Reminds me of early weeks. My husband had a deprivation of liberty order put on him as he kept trying to get out. That was upsetting but it had to be done. When home I had to lock the door and hide the key. What a palarva.
As time passed things slowly improved and he is much improved but not able to work again. You will eventually get into a routine and I found I had to show my husband the cooker the microwave,the thermostat and central heating hot water and show over and over again. Pure repetition paid off.
Easier for me as no children needing attention.
It is challenging but we have made a reasonable life now.
I feel for you very much not having the support you need.
Yes, the day my husband put on ward from intensive care after me visiting (restricted due to virus) they put DOLS on him, they didn't inform me until the next day. They rarely knew when he escaped until i managed to get through and i was hour down motorway with no traffic. They said he would remain at Southmead for weeks, then 2 days later after heightened behaviour they transferred him locally, he escaped the next day police found him, then following that day he was home. First 8 days was horrendous, i was on my knees, my 2yr old teething and unsettled nights on top, (still 2 back teeth to go). Family/Friends following lockdown and possibly avoidance in seeing the reality were in. But when i seen him on ventilator those first 5 days, I begged for anything for him to get through and he can walk, talk eat his behaviour is not him, I know hes fighting it and has insight with bad episodes, although i originally thought be hospital bed in downstairs room with me learning nursing skills. Despite this sorry situation, hes here, i am his wife through sickness and health. I just dont know the system or what i have to do. Professionals say they will telephone, and they dont like today brain injury speech and language, no occupational therapist pinpointed. The brain injury psychologist i feel is in despair himself with lack services and to carry out assessments himself. I feel left to dry, 3wks ago back in hospital with stroke symptoms luckily in and out as it was fatigue, hospital say they will send info on managing, but yet to receive anything. I have gone on headways website to get help, but everyday or actually different parts of day so different.
I really hope things improve for you. It is a slow process but changes do come slowly. Keep the faith.
My husband becomes more confused when tired. Sleep very important at this stage I think. Sleep and repair.
Big hugs..... 😁
How many Cognitive baseline assessment can you fail. Failed on discharge 31.3.20, failed week 10 being home, failed today week 11, no assessments next week husband fatigue bad, advised every 90 rest now. I've emailed Headway over weekend, so hopefully they get in contact I don't know what to do, his pathway plan not completed still
Hope you are feeling OK today.
Thinking of you x
I have no words just pure sadness, exhaustion deep within, headway not replied to my email from weekend, no support apart from this site. However just did a run (on treadmill) didnt cry throughout when previously tried. Advice from group to find something for me, so when toddler settling, husband resting i hope this is a way to release this emotion. Work OH calling me next week, work also asking if Ive sorted out care for husband/toddler my head all over the place.
Hoping i have a lightbulb moment soon x
So many things to think about.
Nothing is as it should be at the moment.
Try to rest as much as possible.
You can't do what isn't possible at the moment. X
Im on a mission, Lynd. I cant help putting 110% into everything., i have to for my husband and children.
Om feeling very lonely especially with my local headway not returning emails. I am literally on my own, got to keep positive vibes 5:30am-10pm to prevent unwanted confrontation, so got to be seen strong.
I know my time will come and i wont get out of bed for days, but not until my mission sorted.
Well don't burn yourself out. Recovery from brain injury is long haul. X
I know x
Im burnt out now, mentally part of parcel, but physically in a pretty bad way now, the stress is releasing. I am calling my GP tomorrow, feels my body shutting down from this wicked 4mths. But on the bright note feeling proud and lucky with home rehabilitation and re-attemping Cognitive Baseline in August and working on independence now. Ive also realised the virus was a blessing in disguise being home now with his progress, weve worked hard together as a team. Still no OT input though despite nhs panel agreeing ages ago for someone to be pinpointed.
You should be very proud of yourself. You have done so much for your Husband.
I am glad you have decided to contact your GP. It's important you look after yourself too.
Hopefully you will be getting a little more support soon x
Told to get some rest. My body going through natural physical stress factors, blimey i think we all knew that, deary me.
Thats dissapointing. Have you had a carers assessment yet? This can start with contacting your social work dept. However with covid I am not sure how they are operating at the moment.
No, i havent gone down Carers Assessment yet. Last month I had to have work Occupational health report done took an hour over telephone explaining, to state im not ready for work yet, despite sicknote.
Im still upset thinking about, took me 4nights crying if not howling before bed. Im fine messaging people how I feel mainly this site, but realised I cant talk about it, Im just not at a stage to talk. Work recommended i seek counselling with headway but as theyve yet to respond to my emails i feel let down and my barrier is up, mainly because family/friends walked away with avoidance, i just feel i have no one, cant trust anyone.
Looks i have to go back to work September, still got mortgage, bills and provide for family. And Sadly near enough full time hours I dont know how im going to stretch myself, so maybe when time comes may be route i go down.
Yes I understand. I had a tough time dealing with all the different agencies. I think for the first year you are still in a state of shock and expecting our partners to "recover" really quickly. Eventually you will sort things out and be able to decide what needs doing. Talking can be hard but you need to get it all out to someone. At this stage I think ringing Headway is something you should consider. They were a lifeline to me in early days. Don't know what has happened to the emails.
Lots of people on here understand so say what you want. X
Im never going to get over this, i hope in the near future it eases, but i know our life will be difficult . We have appointment with neuro surgeon soon letter coming in post. i declined face to face which secretary sounded surprised, i asked for telephone call instead. Its just the up evil of sorting childcare, travelling, husbands behaviour going to hospital, entering the hospital i had to say goodbye. Im just not ready. Plus with brain injury team still doing weekly visits, im now finding myself wiped out like my husband for few days, instead he gets a nap with his resting lol. So seeing neuro surgeon who saved my husbands life will wipe us out for a week, cant let low energy levels interfer with our rehabilitation which is going well. Weve had a good couple of laughs lately been lovely x
Glad you've had some laughs. They will become more frequent given time x
I would strongly recommend giving the Headway helpline a call on 0808 800 2244.
For great advice and help on benefits etc. give the Scope helpline a call on 0808 800 3333.
Both of these helplines have helped me a lot.
I wish you all the best.
🙂🌸
Thank you.
You have my massive respect - not least for finding the time to reach out and research with all that’s going on for you.
Definitely give Headway a ring and see if somehow you can find a volunteer through the local group (when appropriate) to just be there even if largely at the end of the phone.
It’s often the Carers who have it hardest - usually sympathy for us with the TBI, but not enough support/acknowledgement for you guys... x
You are a loving wife. Your husband is lucky to have you and appreciates all you have together. Can I please ask how the TBI was caused? Was it an accident? Was it the fault of another person? I’m asking these personal questions as you may have a strong case for legal compensation for personal injury, loss of income and loss of future employment potential. Speak to an injury lawyer (a good one, I can recommend one if you wish who has been fabulous assisting my own TBI case).
It was a freak accident I think, but hospital gave me legal leaflets as injuries dont match up. Again i have no answers, cant get answers, im not getting answers. I telephoned our life insurance, instructed by headway when southmead told me to call. They Scottish Widows stated we dont have critical illness and to call back in 13wks. Again, not got a clue im so caught up in care duties, domestic chores, chasing professionals, then nurse sent this community site, so i come on here when i get 5-10mins break
Hi. You & your husband need answers and you are entitled to them. Have you considered engaging a reputable law firm on a ‘no win no fee’ basis? If you can prove someone (or something) else was liable for your husband’s accident then you have a very strong financial case. It is tough going through litigation and there are times when you may question ‘is it worth it?’ but it is worth & when it’s all over you & your husband will receive a financial cushion to make both your future better.
Thank you for taking time. My energy and focus is adjusting life to support my husbands rehabilitation/recovery. I could deflect my focus and emotions on his injuries, but I cant allow, he needs my full attention and positivity to help his strength. I forgot to add if i show any weakness this causes a trigger on confrontation, and causes unnecessary fatigue, more memory, buzzing in head sensation so i have to keep focused on his needs and the childrens to bring some harmony in our world despite turned upside down, if that makes sense. But thank you for taking time and offering signpost.
Sorry
I cannot give you any advice on how to apply for be if it’s my solicitor and case manager took care of all that. I suffer with tbi have done for 22 years. I had 24 hour care when I was first discharged from hospital. My husband then took over but it was to traumatic for him so he divorced me.? I now live by myself with an assistance coming in for 33 hours a week. This is paid for by the government. So we can improve.
Ive been married 19yrs this year, we were very young when we got married, i was still in my teens, Im sorry your Husband couldn't manage, I just couldn't even imagine the heartache on both sides. Theres no instructions with TBI i have realised, however only 6th week home but I have young children, they nearly lossed there Dad, its been traumatic all round and continues. I have been left to dry by services due to virus, they said he requires 1:1 and even this week again offered residential 1:1 as really bad day Monday. Next 12mths I know is going to be toughest then more clarity on what permanent damage done. We've never asked for help before, even when i had my daughter i had to go back/forth admitted to hospital, my husband was on his own with our newborn baby, i couldn't make bottle until she was 5mths, we just manage/juggle ourselves with no family/friends support. But now i really need help we have lockdown, no services, no one available when we're on our knees.
I just dont get it, were not well off just normal working people, mortgage, bills to pay no savings, as we always lived for today thought it would be normal life or death, this situation never occurred or accounted for.
Im glad you have support and good support surrounding you, seems rare these days. All the best.
Yes I am lucky that I have my parents, brothers and sisters around, the ones I want are not there though. I still love my ex husband, I do not like him though😃. We have a 22 year old daughter who now has a life of her own but has taken her father’s side so has nothing to do with me.
You are very lucky and you still love you ex husband, you are just beautiful inside and out, its not easy im at infancy stage with caring for my husband, but I do understand why your marriage broke down, and deeply sorry you went through that at such a difficult time in your life.. on the positive note, you are watching your daughter grow up. Thats all i wanted for my husband to pull through watch our children grow. I dreaded the thought my 2 yr old would forget her daddy.
Thank you for taking time to respond. This whole support will take months for me and my husband but this thread has pointed me in the right direction with advice for now. Im still waiting for paperwork with PIPS, need to complete identification card, contact helpline, turn2us and scope will take me ages with time restrictions but i got advice, no one else provided.
Just to add, a card from Headway is one thing - usefull in a lot of cases.
may i also suggest the 'Sunflower' lanyard for people with 'hidden disabilities'
Kind regards
DA
My lovely, I an in AWE of you! I am in a similar situation. But there is always HOPE. I am just about to log off after the whole afternoon and evening at the hospital with my partner who has this hypoxic thing but today after 6 months he was hoisted into a chair for 30 mins so I am very happy with that. I want to write more to you but really exhausted. Re jobs there ais work you can do at home from a laptop - like wot im doing. But don't you dare give up HOPE. Be in touch with you 2moro. Sending you virtual hugs!!!!
The first thing to do is go to citizens advice about the benefits he's entitled to. Then contact his gp about his home care and rehab program.
I also admire your strength, because I was in the same predicament as well. I am surprised they didn't offer in house rehab facility.
Hello, we're 2years 1month today. Clinical support ongoing. The home support position no change, but we work well with the smooth and the rough.. But we are making good progress. We are going on our 3rd 1nigjt camping trip soon, and we've purchased further items for adventures. Think I'm in process accepting now rather than adjusting
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