Oh where do I go from here

[NJH11]

Oh god where do I start? I have posted previously explaining what happened to my husband. 2 years ago (severe tbi) and how it is impacting life for both of us. He had quite recently got his driving licence back which was stressful at the time as I was over protective but it worked well as it gave us both a little independence from time to time.

I have also recently given up my senior management job as it demanded too much on top of my husband and our 2.5 year old (6 months when it happened)....

Anyway a few weeks back he had 2 seizures in 6 hours, the first one lasted 10 minutes. The good news was that he was at home and not driving and I was able to help him......he also had a CT scan again to ensure that nothing sinister had happened but all was the same as before. The down side is that obviously he had a driving ban again (we live quite remotely so public transport is non existant ) and during the subsequent neuro rehab appointment he was told that now 2 years post injury he will not work again...at least not in the role he had which was chief executive !! He was also told that his behaviour and achievements are also too-inconsistent that working will be very difficult. Now of course I already knew all of this...but sadly he does not have insight to understand any of this.

Since then he has been so depressed and lays in bed alot and is difficult to motivate. The thing is though this mood seems to be for me only. His teenage adolescent tendencies have moved from 75% of the time to All of the time.............unless he is with friends or old work colleagues and then he puts in so much effort he is like a different man.

Oh I miss him so much, everything we had together.....I feel so alone and that none of our friends understand as he is so different with them that I appear so hard on him. Tonight I was driven to floods of tears and as I sobbed uncontrollably (which is normally only privately) he sat and had his dinner not even asking what was wrong.... and then asked if he should take the rubbish out (it was the 20th time he had asked me this in 2 hours) I just screamed so loudly like a wild woman.....I am embarrassed now thinking of this....oh I don't even know what I am thinking or even trying to say.....it just hurts more than I can even articulate.

My step daughter to whom I am very close, called me today and said that she has met someone she cares about but is so fearful of falling in love as she know how it can all be torn away even when it is perfect. She said I don't think I cope with what you have lost.......I don't think I can either.

Sorry bad day.........

[NJH11]

I have just read this again and realise how negative this all sounds....give me 24 hours I will be back driving us forward again....we all have our weaknesses and today the world has grabbed mine and waved them around until I could stand no more.....so I promise my positive spirit will return very soon. I did say that brain Injury is a life journey and just going over a few bumps and turbulence ........

[Dorsetcharlie]

A really crap thing has happened to you both; so you're allowed to feel crappy about it! So much of what you said resonates with me and the thing that has made the biggest difference is talking to someone from Headway once a fortnight.

Find someone to help you to say how you're REALLY feeling, who gets TBI and will be real with you; it has had a huge impact on my sanity and ability to cope.

Good luck x

[MrPBH]

Hi NJH11 - you are, understandably, having a rough time.

Of course, it doesn't make it any better, but - speaking as someone who has also suffered a severe TBI, it could be far worse.

For all those involved its like learning, from scratch, how to live in what - even after over 20 years - seems like an 'alien' alternate world. My TBI occurred after being married for 1 month - my advice (if its worth anything) is to endeavour to strengthen your partnership/marriage - it may appear as though I'm a little biased, but - even though its an often turbulent ride - it really deepens, in fact makes it capable of weathering all storms.

I've learnt that you should seek counselling if needed - never turn down help (from professionals) if offered, however - try and remain steadfast and positive, but mature and logical/realistic.

It may seem cold, but gain self-control - don't let emotions rule the day. There is of course a time and place for them, but calm self-control should remain paramount.

Sent with understanding, strength,hope and love.......

[NJH11 in reply to MrPBH]

Hi MrPBH

I agree with all your words but sometimes my saintly wife persona slips and I just feel angry too. If you read my original blog you will see how much I love and support my husband and always will. This blog enables me to grumble and is sometimes my outlet that's all.

I vowed from day one of the injury to ensure that he has the best opportunities and chances and I work relentlessly to drive his rehab program post hospital discharge.

I don't mean to sound defensive either I need him too and so does our little girl who gave daddy a big hug this morning and cheered him up.

All the best

X

[ncmurphy1951]

my lord as a survivor i am truly empathetic of what partners have to suffer what i do know is that the main reason to press on was the lovecand encouragement shown to me every little milestone must be warmly celebrated driving a huge one but depression tiredness and short temper not to mention the constant pain will be there as a side effect i am 6 years into recovery keep strong the path cannot be travelled alone as a survivor

[Hidden in reply to ncmurphy1951]

i am with you but only 7 months in..keep strong,have faith

[NJH11]

Wow I was feeling bad last night....today is a new day. Onwards and upwards. Grief and pain are the side effects of the journey that we are all on.....it can also keep us strong to just give into that grief occasionally.....then take a big breath and get on with the journey.

[Hidden in reply to NJH11]

very pos

[Hidden]

First of all you should never say sorry for having a bad day. You are in recovery too and you are trying to get to know your partner all over again through no fault of his or yours. You are human and sometimes have the right to say "what about me" and indeed what about our child.

I have had meltdowns like the one you describe but it never meant that I loved my man any less.

I, like you, have a partner who had a TBI - his was last June. During the final part of his 4 months in various hospitals he was told that his CEO post was redundant. I thought we both knew that he was not ready or able to return to life as a CEO (which was all he ever wanted to do) - little did I know that he had neither accepted it or truly realised his limitations going forward. The on-going fatigue, the impact on cognitive ability and sometimes the inability to make sense of things. He is capable of leading an independent life and working but not at the level or the extremes of his previous life.

Things came a head in January - when everybody was thinking new year new start, he was realising his loss and felt without purpose and I watched him slide into a deep in-penetrable depression. A depression so bad it threatened to split us up after all we had been through and it threatened to destroy him.

I managed to get him to take some in-patient treatment for depression - he cried when I left him as he didn't want to be there - but within three days he was like a new person. Rather than the planned week he was home after 5 days.

He then did an out-patient course on managing depression, half a day a week for 6 weeks.

When he got home we worked together on purpose - with me trying to convince him that the definition of purpose is not 24/7 working as a CEO. We developed a diary sheet showing 7 days, am, pm and evening and started filling these out - so each week he could see what he was going to do and knew that he had something meaningful lined up along with regular appointments and tasks. He decided to take up cycling and to return to golf (his balance isn't 100% but it makes him happy and gives him purpose). The exercise releases endorphins that combat the depression plus whilst he was taking in-patient treatment they rebalanced his meds. He uses an exercise bike when he cant get out due to bad weather (pretty often at the moment) - he is up to 28/30 miles cycle runs and hopes to do a 100km cycle for charity this year and maybe London Paris next year - so he has targets. He also spends time reading up and studying cycling and is researching buying a new cycle. I love to see his smile return as he does this.

12 weeks after agreeing to take in-patient treatment he remains very positive.

If either of us has negative thoughts or a bad day we try to talk about it in a constructive way - for the first time a few weeks ago my partner started to recognise that I am in recovery too.

One impact of our approach........as I looked at his weekly list I thought - hey what about me, every entry was about him. I am about to finish work, like you in senior management (today) to be with my partner more and to help us both to recover from the most traumatic period of our lives and suddenly I lacked purpose other than taking care of my partner and ferrying him from place to place (he is about to reapply for his licence) - I realised that our whole life focussed on him.

So now we both have a weekly sheet which includes some time that we will spend together and our own targets and activities and we ensure that the joint time and family time stays in place. This see's us getting out and about into different environments and rebuilding our relationship. It gives us quality time together but also space for ourselves - which we both need.

I am not fully sure of your position and what your partner is capable of but this helped us move forward.

The only other point to make is that I recognised that my hubby needed help immediately and I knew that it was highly unlikely that the NHS could turn it around for me and have him in treatment the next day - so I did pay for this to happen privately. We view this as an investment in our future rather than a cost but we were lucky enough to have some savings to do this.

I am not sure if it helps at all - just our take and how we tried to overcome it.

Once again never apologise for having a bad day - you do need to look after yourself if you are to remain strong for your partner and sometimes that means saying - hey I am not OK and I just need to get over this seemingly high hurdle - because you are right, when you get over it you can be positive again. I miss my hubby of 20 years too and sometimes grieve for what we had but I am enjoying getting to know the new one even when it isn't easy.

I wish you both the best of luck and hope that you have a wonderful future together.

Virtual hugs from a fellow "partner" x

[Hidden]

i miss me,and it is hard to communicate especially when you know you cant,no matter how hard you try,there is something missing...stay strong he still knows you,he just cant be himself..it is very humiliating in my head being the eldest,usually always on the phone,or out and about,with friends and family organising everyone and having people come to me when they needed me,(now i am on the shelf)....to be with the same who once looked up to you,and see the sadness in their eyes,and the love..because i feel so inadquet to comfort them,take heart things will get better...over time..i am glad for your husband he has such a strong woman like you...the love must still exist..that can only be good