Well 16th March will be 1st Year my husband sustained TBI, Im grateful, feeling lucky hes here watching our now 3 yr old daughter and 15 yr old son. But everyday the horror runs through my mind of our new journey and we still have far to go.
But im getting all worked up, with dates, times, the trauma of everything just getting worst with dates closing in, stalemate with Services with Covid, on my own with all demands.
How do you cope on the first year, any recommendations i can do to ease the overwhelming emotions, tears still occur but managing on these dates i dont know how i go about it.
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Can I ask a 'Simple' question please? When you mention 'Dates', that you do- several times, in fact. What 'Dates' are you referring to? Are they 'Hospital', or Doctor, Appointments? Rehab, Physical, or Mental? Anniversaries of the actual 'Events' themselves, or Something completely different?
I think that YOU need to Relax more, have some 'Me' time.... can you leave 'Hubby', with the Children, watching a Video/ Film/ Programme, for an hour- or so? That way YOU can 'go for a walk', have a bath, 'do' your hair.... or just Sit, in the dark..... I'm certain that a few 'sessions', like this, will make Things clearer. Ordinarily I would suggest involving Grandma...difficult, at the moment though.
Perhaps a Family 'Walk', in the local Woods.... Duffle Coats, Scarves, (Balaclavas), Wellie Boots, Thermos Flask perhaps some Sandwiches? Let the children go 'ahead', so you- and Hubby- can Talk.
' Talk' IS what you Need to 'Do'.... Tell Hubby just how 'Bl--dy p*ssed Off' you are, with him leaving Coffee Cups 'everywhere'. Listen, when he says 'How Much HE 'Hates' YOUR Shoes, being 'left' by the back door! BOTH agree, that the 'Ruddy' Dog, needs a Kennel.... ALL this, 'sort of thing'.... and More.
Do encourage HIM, to Talk, though and DO Listen- be Kind, Understanding and offer Guidance, rather than criticism (Difficult, if he is STILL leaving the 'Seat Up'!). Recovery, from Any Brain Damage, is a Very Long Haul and, you BOTH, will need to Work On it. If your Love is Strong enough and Patience (especially yours) is 'everlasting', then you CAN Make It Though. Bare in mind that Hubby doesn't 'Mean' to Forget, or to 'Snap'- for that matter. Again 'If' you are BOTH prepared, for a Bumpy Road, then you might just 'Surprise' each other.
Do you have Family, or Friends, that you can Confide in New-beginning? Even a 'Fire Side Chat', by the Lake... in the Cold... with 'Mary', your old School Chum- Take Away Coffees, in hand. Perhaps time to take Helen 'up', on her offer..... I'm sure that 'All These Dates' will Fall into Perspective. Sure IF you, really DO, have a Blood Test next week......
Hang 'In There' BOTH of you, you WILL 'Get through' this. I Know that we ALL send you both, our Love and....
The dates is when i seen my husband on life support, although TBI sustained 16th March, it was 17th March being sat down with consultant explaining I need to call family to say goodbye. That day after son finished school having to hug and prepare him to say goodbye what was to come. 18th March taking our then 14year old to hug his dad and hear him say goodbye. 19th March after unsuccessful attempts and watching the unsuccessful attempt to bring him round with consultant giving timescale. 20th March successful attempt number 5 im aware of. 21st March, husband not following command helping nurses to restrain him, took 4 plus me. 22nd he knew who I was, but restrained with gloves on, 24th March taking him to ward, leaving him then he was put on depreviation of liberty order without my knowing, PTA strong now. 28th PTA worsened absconding really bad, more heightened behaviour no communication until husband off hospital ground, more heightened behaviour transferred locally no staff to manage. 29th march despite 1 to 1, absconding police search needed. 31st March the challenge of all challenges fighting to get my husband home for fear of his life. 31st march im fearful I cant meet his needs, 8 days forward on my knees still on my own,. April absconding from home, husband attacking postman with PTA. 17th April husband having full on stroke. All on my own, no daily visits from heath until 10th week home. Residential support refused number of times.
The rest of the dates I can handle with coping. I have no one to talk to, no one suported with the snap shot above everyone walked away end of May 2020. I literally have no one, its just me caring for husband, juggling our now 3yr old, motivating our 15yr old with final year and no gsces. I cant even fill one hand of people emotionally supporting me, i have nevet had any physically supporting not even with then 2yr old.
Home visits june to december, purely on managing husbands fatigue and behaviour strategies to talk through. Neuro surgeon twice over telephone which was daunting on recovery but he was impressed what has been achieved, i could of drove and received face to face, but no extra adult to support, no one to support with childcare.
Me time, only 5:30am to motivate myself to run on treadmill, or time like now 10pm for bed time fags to weigh up our day and only virtual form of support.
I can and do talk to my husband hes currently going through the motions hes alive and adjusting and aware of behaviour. In 11mths, ive not been able to cry or complain being unwell, he cant regulate behaviour and it can quickly esculate, never not got police intervention, but few times emergency calls to brain injury team for help.
Its just March and April rolled up causing me to become fearful of own emotions and how i can keep it together. Husband cant recall anything, were on 2 days on good run with short term memory but the routine, structure put in place for some family functioning has worked wonders with him knowing with support of technology.
My days are long, fast, constant demand, and my focus purely on husband and children, i continue to do solo which have no expectations of people, due to doing all on my own. My own faith, values remain the same in helping others best I can, but 11mths i have no expectations from physical support as done the worst solo.
Im a just really scared with upcoming dates and fighting the horrible visions. But one proud wife and thankful i see his progress and i put a smile on everyday no matter what.
My husband and our children is my only world, little me just ensures all there needs met and I stay strong and remain positive to continue.
My 1st anniversary was passing unnoticed 'til I was rushed to hospital with a gall bladder infection and my son pointed out it was 12 months to the day since my SAH. I'm quite a sentimental person but for some reason the date of my brain injury doesn't resonate with me.
I've seen folk here on Headway become unnerved about upcoming anniversaries and although I feel for them I can only see dates as separate, and of another time. That was then when we were in crisis, and this is now as we're surviving and moving forward.
It's just an unconnected date and time m'love ; please don't put importance on it. There's a weird significance attached to dates, and letting it get to you is an extra and unnecessary pressure that you can do without. We tend to consider the 12 months stint as a milestone but in brain injury rehabilitation it means nothing. It's a long process (I felt a sense of equilibrium at around the 3 year mark).
Take this new life ONE day at a time. It's only when we look back every few months that we recognize the progress and realise there are better days here & there. You've been brilliant throughout this challenging time m'love ; don't let dates/schedules/Covid panic you after getting this far !
Oh New_beginning, so sorry everything is overwhelming - I can't offer much I'm afraid - anything that draws your mind and flags up a fixed point in time to compare then and now is really hard to cope with. You've done so much though to have come this far, and kept everything together for all you. Try and be kind to yourself, you've been so amazing. Thinking of you, Jen 🌸 x
I do plan for us to go on walks with behaviour, fatigue, weather pending. Cook husbands favourite meals, baking with kids. Hope to pot around in garden doing painting, weather pending. Ive literally booked whole March off work. I had to return work 6mths after to keep roof over head, food on table, juggling kids, full time care with husband, sort all medical appointments on my own. I have no one, this forum my only support. I literally have no one.
Its the dates having to wait for husband to respond to come off life support, date I took our son to say goodbye,its the date i challenged hospital to bring him home. Taking into account the frightening experiences with PTA (that was a further 4.5mths) and husband sustained TBI throughout Covid. Services postponed first 10wks, postponed again January. His family walking away near 9wks,friends all gone. No support like attending headway support group.
My husband is my soul mate and the love of my life, we are doing well adjusting as i know Ive remained strong and protective, kept to structure, routine every day .
Post was just how do i keep it together, I always think positive we always talk about our hopes when recovery becomes solid we still want to do many things, but the visions of everything still raw, i feel will be too tense next month. In 11mths ive not had 1hr to myself, with caring, working ive not had that time to reflect properly but aware ive been fighting off to get through each day.
I always remember anniversaries of things. Today is exactly 7 months since my partner's ABI, he still can't talk communicate or understand. I actually long to be in your position. Your husband sounds like he's doing well, as others have said, take one day at a time and look after yourself. You are doing an amazing job in these difficult times.
You have been amazing, such a strong lady taking everything on yourself. Give yourself some credit and use the dates to see how far your husband has come against all of the odds and how you should give yourself a pat on the back because, after all you have already seen and been through, you have made it this far and you will continue to make it, or at least see the positives and make the best of them. Our situations I feel are similar but I have been lucky enough to have help from the rehab place he is in, they have been great with him and have brought him on so far, I question myself every day if I could have done it myself but it is my aim to get my husband home and I will do all I can to do that when he is well enough. If you need to talk, we are all here for you. x
I am in awe of how well you have done. For it to be a full year already! I think I get where you are coming from with these dates or anniversaries. The potential mental and emotional strain of them. The emotions. The remembering. that nobody but yourself had to go through this as 1st person. All those tough decisions. You have been so strong. These dates are important in a way as they are something you can tick off and think "look how far we've come". You fought long and hard for your husband. So the anniversaries are maybe victory days for yourself and your family. Little medals along the way that you can keep with you, even if no-one else in your circle quite understands. That you could even consider going on a walk together...would you have thought this possible a few months ago. I'm not asking you to put your positive hat on of course, but try and remind yourself how far you've come and how hard you've worked. And please throw this information back at me in December when I will be where you are now. ❤️
16th March is my birthday New-be. I'll probably be visited by family (on doorstep like last year) and maybe take a walk later around the park or nearby woodland looking for signs of Spring. 🌼 Hope you'll find something pleasing to pass the day ......something to transform the 16th March into a happy date to remember.
Thank you for all taking time to respond, the word 'Victory' has made a stamp.
I see progress, I reflect on his progress all the time for my own learning with trial and error as I feared accessing community back in Summer early Autumn as fatigue gave him 20min window for quick walk round block and many times couldnt let him out car due to behaviour, still issue but working on, but timescale improving.
I love we can cook together, his favourite at the moment is homemade sausage rolls, which we have good team work doing and now homemade onion bhajis to go with curry, we work great together in kitchen, and its mutual i check appliances without mentioning to him. Planning to do our little treats for picnics this summer.
Thank you, needed a bit of slap out of it, though i know and accept the tears will come and I must see through it, but Im absolutely dredding it x
Reading all this, I think you are amazing....you have done so much successfully, single handedly. Wow! 👍Sounds like the cooking thing could be something to develop further, as you work well together. Virtual hug! Keep on going.........you are doing great.
We started to celebrate my TBI on it's 1st anniversary and a meal out has continued.
This wasn't really planned but said spontaneously, the day before whilst walking with my 7 year old daughter. Whilst this initially confused her she quickly realised it was a good thing to celebrate.
As you know I had the tbi,bolt and dol on me similar to your hubby my 2 year anniversary was the 30th of January I still to this day have no memory of my accident but I don't see it as a negative I feel thankful that I had the right Drs that night who gave me a second chance at life,when I read your posts I read above love it shines through and your determination to do your dammdest for him,yes sometimes friends and family let you down people don't understand the many issues with brain injuries but I don't think your hubby could have better in his corner,stay safe to you the toddler and the teenager👍
Just typing those dates is soo distressing it doesnt come out right, when talking to professionals to get things sorted usually distressed, i just cant get it out, i become hysteric and cant get it out clear my words become scambled and jumping to one scenario to another.
My husband knows its next month as Ive shared my thoughts but he doesnt know dates, unless he asks (hes asked 3 times in past week, he forgets). Despite my emotions which will come down hard with bed time fags, i know during day we will all be kept very busy, i have a military order of activities that will keep us occupied. With how things are with covid, school hoping mock exams second half of March, so I need to keep calm and collective to help son.
Ive been dredding this moment coming since September returning to work, i saved all my annual leave to have March 11th until 1st April off, but i know i need until 19th April off, already my head gone cant concentrate back to writing notes to for my to do list.
I knew I would become distressed on dates, its the inevitable but i will soldier on, i have too got no choice, and GP been calling for hormone bloods i was suppose to get done in December, but due to covid i didnt want to take him. So will book Friday to get done by 11th March.
Stay safe aswell to you and family x
I do that too I tell a long story with bits and pieces all in a humble in between,I bought 2 little notebooks so when I went to see the psychologist I'd put everything down that I wanted to discuss before I left for me it works a book with bullet points.I do understand your feelings of isolation I moved back to Northern Ireland 6 months before my accident I felt my sister was lonely her husband had died 2 years before I have not seen her since my accident she's only 4 miles away she rings once a month to see if I'm ok but I kinda think that's what's in her not me so I just let it go right over my head don't dwell on things you can't change.My sons in Devon and in a sense thats what comes through most about my accident the love and care he gave me just like you with your hubby,when I was in ic u in the coma the sister told him not to stay ,he said he was staying and held my hand through it when they spoke to him about the possibility of having to switch for support off what were his views he said there was nothing to discuss until it got to that stage,I see that same determination in you ,you keep on with your to do list,have a sob or two, scream if you want but with the anniversary looming remember too you've managed in a year what a lot of people couldn't,your hubby lucky,stay safe to you the toddler,teenager and him indoors. ( I forgot him in my last post )
Yes, each of our parents live 1mile from our house, siblings 3miles all gone no phone calls or messages. My nan died 29th January, not informed and funeral this Thursday which today ive had to chase.
Ive yet to cry with her passing, im just so focussed on husband and kids as they depend on me and im only the one to keep things going, i literally do stand alone.
Families and friends i see different now, and yes there poor part does mix with emotions, as I just thought last year they would step up and help. How very wrong, ive always had a barrier up, but apart from this forum, i have titanium wall now.
You have a wonderful son and very wise. Yes we follow government guidelines to the tee to stay safe as possible, especially keeping up husbands progress as services all postponed, i did call brain injury team 19th Jan but no return call yet, when behaviour difficult, but luckily managed over that week to calm him down.
Yes we just spoke about Boris's speech coming 22nd Feb, but again thankful were not in same position as first lockdown, hoping services to resume asap. I can see my husband was gathering thoughts, as he cant remember but knows it was risky times, i told him it wasnt his fault, it was the natural process and glad he was home despite the hardship.
Thank you for taking time, and yes note books , post it notes are the way for me and works best, and much needed over next couple of months.
Stay safe my lovely lady x
Post it's are my best friends just thought I'd go posh for appointments so little hardback spirals work handbag size too.I'm sorry to hear about yourNan who's to know what goes through peoples minds and they haven't had trauma but don't dwell on it or over think it just focus on your family.Yes im lucky with my son,his brother died in a rta at 26 so we all have sadness at different things.I had quit smoking a few months before my accident when I came out of the coma and went into escape mode he made them put me on nicotine patches because when he wanted to go for a smoke I said I needed to go too but he'd sussed it was an excuse to escape but just so I couldn't get away with it if he wasn't there I was put on patches gotta love your children don't ya,as well as post it's and notebooks I have a mini blackboard in the kitchen for cooking times and temps ,you take care and go easy on yourself
Such a tragic life for your family, in such a short timescale and young age.
Think i havent had time to get involved and because of there behaviour took this one with pinch of salt, My nan 88 poor health past 2yrs, but i feel she lived a full lifespan and a colourful one too despite it being sad, my husband now 42 and im focussed on the living it that makes sense.
Yes i have a blackboard hung up in kitchen, its used for meals for the week to help me being organised, as all food homemade so helps with husband taking on board its been up 7mths, he still asks whats for tee lol.
Thank you for asking. Im Quite tense, and yesterday at work management nit picking but it backfired, i just blew, had rant switched everything off and went home. Im aware im like a ticking bomb now will try to manage, i feel very agigtated, sensitive to anything its like im going through stages maybe , but whilst home calm, like nothing happened made tee together with husband then pancakes.
Sorry for taking so long to reply. Have you had any counseling. I understand what you mean about this I think. I'm not sure as I don't have my husband home. Do you think it has to do with the fact that those at work are just so far removed from what you are and have experienced. I dunno. I find I have really odd triggers and my husband isn't even at home. Have you been ok at work before this?
I will hold my hand up and admit i am too passionate and I love what i do in my job; prior to husband i would be abrupt with management (too many and many turnovers). However since September returning, apart from one epidsode that occupational therapy got involved to guide management, ive remained calm as a cucumber, as let a lot gone over my head and really bit my tongue and ive not got heated. But Tuesday i just flew off the handle. Im more upset with myself I couldnt keep lid down, no regrets with how or what i stated. I work in small team of 35, ive only seen 6 since september only management and 3 colleagues know our situation, the rest dont know, but even discussing to those 3 took me weeks to get over, so refused to discuss with anyone, as i cannot handle it going round my mind with daily demands.
Counselling, im not ready and totally aware im avoiding at this stage.
Look Lady. You're doing fine, really well to only have had one blow up considering all that has happened. I don't know whether you are like me...I'm a bottler. I just keep it in... cope, get on with it, smile, things could be worse etc. But Every time I do one of these things it takes a little layer off. Until eventually the nerves/feelings are exposed and something has got to show as a result. I understand that you aren't ready for counselling as well, too much has gone on and you're still in cope mode. You're still "in it" yes? I don't know whether I'm talking out of by backside here (and please let me know if I am)...but I am also in this mode. Feel fine, know counselling will have to happen but just leave me alone to get on with it and I'll visit that when I'm ready. I'm not ready...go away. Be kinder to yourself. You went back to work and that's amazing, whether there was external pressure to do it or not...you did it. I'm not going to tell you to pat yourself on the back or cheer. But remember, what you have, are and will go through are not easy things. You've blown up. It is 100% expected and I'm sure your co-workers are amazed that it's only happened the once (And if they are they need a slap). Nobody understands what you are and have gone through aside from you. But please bear in mind you are human. I hope and am secretly sure that those at work will understand. ❤️
Yes all sounds very familiar, ive also found anything unrelated to my husbands rehabilitation; i have found like disagreements or areas i would be outspoken about at work just not there now. The turmoil of stress has in a way created a cast, so my outburst did take me by surprise i couldnt control, it ticked me over.
I went to my nans funeral today, ive yet to cry, everyone crying around me, all I could think about was my husband and how he was doing, had he ate as it was lunchtime. I came home straight away and those questions im asking, whilst patiently waiting for him to remember with word finding and smiling with his response.
Before husbands TBI we just finished 4years renovating our house which we self funded and dealt with financial demands. This was on two incomes, i could only financially afford 6mths off, to keep up what we acheived. Moments i thought maybe sell up, but im managing so far just on my income and support from PIPS which still in financial hardship but working hard to keep the sameness and manage best i can like second hand stuff for us, meal planning to ensure all meals homemade for nutrients to help with budget. Currently saving for guttering to be done by autumn as there bending down now, was planned as last job to do last year prior this, but im holding everything together best i can at the moment.
Love the start of your response, actually gave me a chuckle and smile.
Yes i got my imvisable stick shooing counselling away when mentioned, just not ready, plus husband not ready currently just focussed on the now situation and hanging on to our hopes which is helping and supports the positive mission were on. Just those upcoming dates causing havoc and im aware the pre-emotions, stages are starting x
Anger is part of grieving New_beginning, so you probably are on a short fuse - totally understandable. I did something similar at work after my husband left me (unexpectedly) I didn't want to tell anyone at work at all, but had to after I found I was just losing my temper all over the place - it wasn't like me at all.
People will be more understanding than you think they will. One of the best things I was told in counselling was to think about how I would treat someone at work, if I heard they were going through something like this - and of course you would never be as hard on someone else as you are being on yourself.
Be as kind to yourself as you would be to someone else too - we're always way too hard on ourselves - and you're having a really tough time
So my anxiety of the emotions is heightening now, i dont want February to end, im fighting off silent, sudden cries, my mind already being clouded with the visions, conversations just repeating itself.
Since national lockdown i have been lucky to have permission to attend office during the mornings, only way i can do my job and despite working it is my only break, luckily backed up with occupational therapist report. Today via virtual meeting, colleague complained why shes not allowed to go office just to do scanning etc. and why im in office.
Colleagues unaware of our situation and wouldnt stop muttering about it, my response i would have to be furloughed if i couldnt come in and left it as that. It didnt help with questioning which i refused to answer, changing reason for meeting.
Were nearing a year, ive tried 3 times previously to talk about it and even now I cant talk about it, brings too much tears and distress to the point i cant function. Im in a small team of 35, only management and 3 colleagues know.
Now im paranoid, colleagues complaining amongst themselves about me attending office., but i cant physically talk about it,i feel im just accepting with adjustments although has become our new norm,but also aware myself and husband havent accepted this unexpected
My anxiety building up and really fearful with March and those dates,
Sorry not been around a lot was getting my guttering on my bungalow done (oops)Jens right in what she says to you, for me counselling didn't work I tried it when my son died but the day before I had to see grief counsellor I'd be anxiety riddled at having to talk after 4 sessions I couldn't do it anymore I learnt that no matter that I felt I needed to talk it was something I couldn't do I just had to accept the tears and pain would come at unexpected times and that was just me,in a sense the anniversary holds grief for you in the life you did have to what you have now,when you say that you're accepting with adjustments it's what we all with brain injuries have to do you are just practicing to help hubby but your inner strength will see you through.Have you thought about speaking to your work occupational health regarding issues with your colleagues?Stay safe👍
No i havent spoke to work occupation about how to share with colleagues yet, luckily same lovely lady ive dealt with prior to returning to work though.
I have just 8 working days to tackle through until im off, so with my headspace, maybe something i will contact headway on when to share, when needs must. I think july colleagues back in office, so will get march, april out way then look at approach with headway guidance.
Weirdly im getting quote tomorrow on gutterings, as its bending awkwardly now.
Just horrible feeling this, but reminding myself, its been worst x
I had new white guttering replacing the older grey pipes ,I'm hopeing you'll find some chill time on your month off,I realise you have those dates on your mind but you've also shown your strength to try and move your hubby forward you should be proud of how far you've moved forward what you've done,I always think it was like you harder on my son than me I was oblivious to it all
Dates and anniversaries feel hard and difficult NB - but they are just numbers. Is it you feeling the impending anniversary, or is it both of you? Can you take any of the pressure off by ringing Headway - can you get time in the day? They'll understand about anniversaries.
These brain injuries are so difficult - so often when we get ill, we gear up to get through it - fully expecting to solve the problems and come out the other side, and these injuries don't let us do that in the same way - so mentally they are really hard to deal with.
So sorry you're going through this. But we're all rooting for you. I get that it can be hard to talk about things at work, but are you cutting yourself off from a source of extra support? Perhaps Headway will have some suggestions - or practice talking to someone anonymous like the Samaritans - they are there to listen for free no matter what the situation
Its really chest tightening these emotions, i know i have to see through, calmly, appear ok, smile, routine, structure, planned chores to get through the day. But i am thinking of good progress to help every moment of the day x
The eve our life turned upside down tearful, dizziness with head spinning with thoughts on over drive, heavy heart, also abit angry its not a nice sensation.
Yesterday was first year date, I managed quite well a bit too calm with all the anxiety prior. Today is first year date seeing husband on life machine, telling our son, preparing him to say good bye.
Today did run around 6:30am then boom hour later the shakes, deep breathing, feeling nausea has been non stop all day its sitting in my throat, my head spinning , ridicously avoiding clock watching, as times registered through process, its like re-living the moment but also thinking how the hell did i manage.
Ive not cried for 2 days, this is literally the longest with such thought processing on overdrive, its like some major blockage going on.
So yesterday first year date seeing husband on life support, having to prepare son to say goodbye, i span out needed something to lean onto when going bed with thoughts so bad to the point vomit sitting in throat lots of deep breathing, and having to speak out loud to keep me from what felt like I was going to pass out, i wasnt prepared for that; not prepared ator for that, sensation still here today,. I didnt expect this its worst than i anticpated
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