Im just having a rant. 10wks Tuesday my husband been home, i refused residential twice with the TBI behaviour ive not received the 3x visits per week from BI Team still to carry out his Cognitive Baseline Assessment, he didn't meet on discharge 31.3.20. Im having a mini nervous breakdown I think. No family/friends support, and the reason no support offered because I look like im not struggling. Admittedly, its known im very organised, i can suss out what routine/structure needs implementing very quickly to adapt, its what i do in my job. Ive been soley doing my husband's rehabilitation, with teething 2yr old, upset/isolated 14yr old.
Im fighting this nervous breakdown proposed to me from headway, nurses, my GP to ensure everyones needs are met, before my own, i eat and dress and to me at this stage thats best i can look after myself.
But to use i dont look like im struggling as an excuse when they know many times ive been on my knees, just makes my blood boil. How can i be of any use to my husband and children, their only sole support if i am to present i am struggling, which will cause a trigger for confrontation and upset children even more., Hes 2wks out of PTA, although minor traits left. His short term memory poor,,cant do meds still, he needs repetitive reminders daily to remember one task which is major progress,he does get confrontational if i show any weakness. With GP support over past months, ive got his meds from 15 to 4 which has been somewhat difficult managing behaviour but with reassurance hes building on coping mechanism though it changes throughout 24hrs.
Sorry for my negative post, just needed it get it out.
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You are more than entitled to rant! You are awesome! You must be so worn out with it all on your shoulders.
Sadly help from professionals has always been hard to access.
I am a Mum who has been looking after my Son after a TBI 18 years ago. I did not have 2 children to look after in the middle of a lockdown.
Screaming into a pillow and crying in the shower can be a slight release.
May I suggest writing an Email to your GP asking for help in which areas you need saying how it is affecting you and your family.
If it is in writing it has to be acted upon and you have it as a record. You can do this when you get a moment out of surgery time. Also when you are in the right frame of mind.
No need to apologise for a negative post, you need to do whatever you can to get this off your chest because it sounds really tough at the moment. I am also caring for my partner on my own who was discharged from neuro rehab in February of this year (due to a traumatic BI) and have been shocked by the lack of support that followed.
I also think you should go to your GP, and perhaps if you're nearing a breakdown ask for some psychological support? I would recommend calling Carer's Support and getting registered if you aren't already. They have both emotional support and practical stuff such as technology that could make your lives easier such as devices to remind your husband to take his medication.
I know you're really busy right now but if possible you need to carve out some time to do something for yourself. Would it be worth contacting family/friends to say how difficult you're finding things, and ask for some help? I know it's difficult because of the covid situation but maybe even lining up some time for yourself over the next few weeks would give you something to look forward to.
Here's a virtual hug 🤗, it's a really tough time to be caring for someone with a TBI. While you're doing a great job, you shouldn't be unsupported. Xx
I also send you hugs 🤗 and loads of good wishes your a marvel but you are NOT super woman and from what you have said you also need help. Grasp it, even if it is medication for a while it’s what your body is crying out for so please seek your doctors advice sooner rather that later. You are entitled to rage it will help you unleash your built up frustration. With Love and Prayers Liz x🙏🌹
I agree with Liz that if your GP is happy to prescribe anti-anxiety or antidepressant meds it might make a world of difference in supporting you through this nerve racking and exhausting episode in your life.
Medication might be a 'quick fix' as opposed to the hands-on, caring support you need, but such a compromise might be the only workable option during this weird and lonely Covid period.
With no available help, you need to bolster your own health and strength until lockdown eases and frees up more support workers.
Thinking of you m'love ; please keep updating….. Cat x
I can't go down medication route, it's a personal reason and I understand the need for medication but it's too premature at this stage. Since 16.3.20 I've took it head on, I am getting physical symptoms of stress, GP aware and said totally normal. I just need to be alert with everything at this stage and aware this feeling of this situation is for life now I'm 37, got years to go before medication route. I will think of something to release this horrible overwhelming emotions that hasn't gone since this started. I will call my GP once husband's support comes but then I need to see how I cope with such support . They are carrying out baseline assessment Tuesday, his 10th week home to commence writing up pathway.
Your job is so much more difficult with looking after the children too. Now the covid situation. My only tip is don't try to be perfect in all you do. Go with the flow.
Even without covid a lot of us have found aftercare non existent. I take full credit for my husband's improvements.
I would say just do the essentials to allow yourself more breathing space.
Have you got a local Headway group?
Someone may be able to give you some phone support.
Please email your GP or ask for a telephone call in case there is anything they can offer.
Yes we have a local headway,but due to lockdown with everything going on no face to face. Think that's my issue, I am a perfectionist I've done all his home learning on rehabilitation from research, adjusting to family life completely solo making sure everyone's needs are catered for. But going OTT using all my experience, education, skills, knowledge to be perfect purely to prove the health professional wrong that he can recover, I know it will not be fully but I'm working my ass off to get him near as possible. Via telephone calls they say he's a miracle, exceeding expectations, I hope Tomorrow I see it flourish with assessments commencing. Speech and language discharging end of month as I done there work for them with realistic memory, word finding strategies techniques suited for his holistic needs, memory will be on going for us to work on along with word finding, but massive improvement. I cannot help but give it my all with energy, I know it's taking a toll on my well-being but I have to give it everything I possibly can
I have cut people out in our lives over the past 72hrs, the ones who use avoidance, ignorance and selfishness, not helped once and shown no compassion, selfish behaviour taking my husband as a fool because physically he looks fine, one even used my husband's poor memory to get out why they couldn't support, took advantage of his poor memory. They haven't read the info on his TBI, haven't read what his TBI entails from his clinical diagnosis. Not helped with practical things like offering to take 2yr old for 30min walk or help with domestic chores, or even help giving me a break with cooking. These people live 1 mile up road, no health issues, no work commitments. These people are his family. My husband does not filter words, and they argued with him for no reason because he called his 27yr old sister a chav the response,saying he was a nasty horrible person and doesn't need help from them, because he has own family i.e me and kids. There only son/brother in 3mths seeh him on life support to less than 10wks later showing disgraceful behaviour. Please note my husband hadn't spoke to them for many years prior only that consultant stating people need to say goodbye, it was morally right to inform them. But there emotional intelligence is just to low and they are damaged goods. It's like everything done /said in German, and they still don't get it. They think he's fine because he looks fine. I can't be having there negative energy around me whilst they watched this whole time with me juggling especially when my husband should of gone residential this whole time. even a simple message only visit in morning, as stroke symptoms, behaviour creeps up in afternoon, there response Whatever, because they couldn't visit that fitted in with them. The unbelievable has become the believe with the inhuman behaviour at such a difficult situation.
They are pretty well off, they love keeping up appearances for social media to seek attention, but when it comes to nitty gritty they will blindeye. My 14yr old has observed the past 3mths and his words they are disgraceful and he's a child.
Im still finding it difficult to digest at this early stage the lack of support from suppose family. It's just disgusting. There too damaged now to have involvement in our life, ties are cut. I know and hope through channels I will find new networks that actually understand.
I have been solo for 11wks Tuesday with many bizzare situations and feel and know I can't have anyone coming into my circle now without common ground on my husband TBI, it's like I explained to these foolish family in Germany. Sorry but there incompetence and shameful behaviour not supporting only brother/son it's unbelievable.
Well going to be groundhog days this week due to husband's fatigue been iffy but he's resting, but the stroke symptoms with it are heartbreaking
I feel family/friends avoiding us, due to our situation and making inadequate reasons and lack compassion. I just cannot believe at this early stage everyone has disappeared. I literally don't know what to do. His pathway not completed due to Covid, he just started cognitive assessment last week 10th week home. They are coming back tomorrow. I have emailed Headway over weekend. The route I've chose day by day is like a military operation to keep husband/kids in check there needs catered for its working. I have brought a book recommended, Called the selfish pigs guide. I explained to my husband why I got it. In a outburst part of minor traits of PTA he mentioned the book, now I feel bad and not read. Everything we planned, our 20th anniversary next year (we were young getting married,I was in late teens) just a dream now. I've accepted, as I wished for anything when he was on life support, he knows it will take time for himself to accept and adjust. I also explained to him, I just have a overwhelming emotion to protect him now,he looks normal, speaking normal, you wouldn't know apart from where ICP monitor inserted and still healing,but neurologically he's in early recovery.
It's just shameful on my observations from family, yet they talk to others like they see us and support us to make themselves keep up appearances with others,due to their low emotional intelligence and ignorance. I will shame them up this coming week make it known they have done absolutely nothing but caused nothing but friction,more upset,more disappointment like we need that during this life changing Injury. They just don't have the natural family ability to give me 30mins break they live locally as well it's shocking.
I know in time my networks will change now. I'm taking on board with self care time,but with 2yr old 14yr old in the mix, so difficult to think time to myself , time is rather restricted especially with services not in place
Thank you for giving me insight, hopefully xmas or early next year I find that balance.
I so understand your rant. It’s not my husband that had TBI but our 32yr old son. (In March 2020) We have very little rehabilitation going on. There isn’t a rehabilitation plan in place. We are a year down the line. He has Speech and Language once a week because he isn’t able to read. Which causes so much frustration for him it was one of his passions along with mountain climbing and marathons. We’ve had to get physio privately, he even bought himself an electric bike to get around, after selling his car(no point it sitting in the drive way).His femur was also broken, had fixator on and neck brace on when he got home. (31/5/20)
Son, my husband and daughter are all in nhs practice. Which makes me mad for I know first hand the hours and years they all give to nhs. It’s just not a job they all see it as a vocation.
I cry myself to sleep most nights when the going gets tough with our son. My husband stays the night at our sons house.
It’s hard for you, like you I’m an organised person and can see what needs to be done and I get it done.
But I’ve realised the nhs isn’t good at communicating when it comes to someone with multiple injuries.
They don’t look at their patients as a whole person. (body, soul & spirit)
One thing they are good at is throwing pills at people.
Please please be kind to yourself,
you’re the one who needs looked after just as much as your husband.
Having 2yr old and 14yr old too, I think you deserve a medal.
You’ve so much going on that they really should have made sure your husband had help in place before you got him home.
I think once they send patients home, they believe that’s their job done.
Even to have TBI explained and how we should deal with certain situations that could arise would be extremely helpful.
I don’t know how many books I’ve bought on the subject.
11 months i posted that I wish I could say there is major progress and life going well sadly this evening I took my wedding photo down just seeing us so happy, young, care free and going above and beyond I feel absolutely defeated.
NHS, what NHS its absolutely disgusting, we had home visits June-December 2020, nothing until end of April 2021 they were meant to call this week to arrange visit, nothing. All our family walked away May 2020, friends dropped off think August/ September BI team fully aware I'm literally hanging on thread with his behaviour, I cant say or do anything without being shouted at, put down when I'm putting my all into meeting everyone's needs, ensuring children not seeing, hearing anything best to my ability, our son has final exams this month, doing my best to keep calm and collective for him.
I've recently reduced my hours, I'm struggling with finances, covering his debts, struggling with caring struggling to see any light, just full of blackness on my own, dont know what to do. Speech and language wrote him off memory too poor, no physio I've self taught only managed 15 sessions nearing 14months, BI OT came out end of April 2021 first time tried fitting him in box, not a clue as she came unprepared, reason clinical psychologists arranging joint visit.
I have Hope's somewhere, but cant feel them, like I did just too emotionally ruined, I think. Just having a bad few months and just feeling and scared I've hit my limit
So sorry for the hurt you feel from your husband's family, it must be difficult to bear with all you need to do for your husband and children. You are clearly working marvels with everyone, and are being very strong. I'd echo some of the others here though and wonder if you can ask around for some respite care, of some sort or other, so you can have a little time for yourself. Take care, glad you feel you can safely have a rant here. Hugs x
Hello NB, you are an amazing strong woman who is going above and beyond for her family. I am so sorry you are not receiving any family support and that the NHS is also very lacking.
You have had a very tough year and emotionally and physically this must be now taking its toll on you. As others have said it’s maybe time to look at your own needs as they are important to. Ask and seek out what help you can have whether that’s a few hours to yourself or a longer period of respite care. That might just be enough to help you gather your thoughts and give your mind and body a much needed rest.
Hopefully you can access some more help from NHS services especially now the restrictions they have been working under should be getting better. It might not be in your nature ( I know it’s not in mine but have had to be on occasion lately when dealing with different authorities) but be assertive with them and make it known you have been let down and need help.
Very best wishes to you and your family. Take care Nanapal. x
Always better to get it out, New. Appearing to cope, especially when talking to professionals will limit support.
The whole system is unfortunately geared to crisis management, this is a government policy, excellent teams were split and reformed to the expensive non cost effective crisis teams.
Even if you feel that your husband isn't ready, if you have a headway day centre, try to get him a place for a day or two. It will give you time to catch your breath.
I do get the sense from this post and previous posts that you are anti-medication. You may not agree with me, but sometimes medication is prescribed, and required for long term care, so reducing medication from 15 to 4 maybe adding to the stress you are experiencing. Unfortunately following any form of brain injury, there is often a need for many medication, to thin blood, to manage blood pressure, to manage pain, to manage mood etc. Sometimes there is a combination of different medication required to manage one aspect.
Also you may need help arranging benefits that your husband is entitled to receive, this will give you the funding to access services that are not offered from statutory services.
No post is ever negative, it is releasing thoughts and emotions that require airing, and help with. X
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