How long?

How long will i feel like (and i quote from marks mouth )his carer. Which i didn't take kindly too and told him

16 weeks he's been home and i get tired of give give give and nothing back. ....and i mean absolutely nothing. It's so hard.

Even harder is my daughter when to a good lady who does tarot readings and she knew i was under alot of stress and said i must see a doctor it is all making me Ill.

Hence to say I've an appointment at doctors Tuesday coz i feel pretty awful.

Another thing was she said our marriage wouldn't last but your mam has tried very hard. This upset my daughter she cried to me.

Truth ls i don't know how long i will be able to live like this. I just want something. ..anything really 😢

22 Replies

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  • Hi Debbie.

    I am afraid you will be a carer for a long time to come. How involved will alter over time as your husband takes back and adapts to his life.

    It is still very early days yet and he wull improve as time goes on. At the end of the improvement stage is adapteing to what he cant improve.

    Yes you do need help. It is not a weakness to accept this. You also need time for you, maybe others could step in to ease the stress.

    The good news....yes there is good news you will get your life back and with help there is a good future install. As to the tarot reader......if they had some prior knowledge of you ( it sound like they did) well it is an easy assumtion to make, but may not be a correct one.

    All the best...AND GET THAT HELP .

    Pax

  • She doesn't know me or my daughter. I've never felt so lonely in my life. It's difficult because mark just doesn't see it. That's hard. ..he's hard. .. I want to wake up from this

  • This sounds like how my wife felt early aftery bi.

    There was no help available and we were left touddle through. I had not been fully diagnosed and there seemed little rush to do so.

    I also felt once I got over not being able to walk properly and stop talking in strange sentences ( I aparently made even less semse then) I would be back at work.

    Oh was I soooooo wrong. Without sounding to gloomy it took me nearly two years to even start to acknowledge my problems. Even after I was fully diagnosed.

    This eventually led to us splitting up even though we still cared for each other.

    The good news ....we still fought on I began to accept the changes in me and we realised we had something worth saving.

    All along we were told about the high seperation rate due to bi ( how it was helpfull I willnever know ). We got back together and we may still have our ups and downs but it os true , you never know what you really want until its gone.

    I am glad I realised this before it was totally to late. I hope you do not travel down this road and manage to sort things out.

    It does get better HONEST .

    Pax

  • debbie36a you need to go to your gp and ask for your hubbie to be referred to a psychiatrist.Thats what my did . she couldnt take anymore of my mood swings the aggression and my total unpredictability.......they dont tell you about that when they kick you out of hospital.

    Also find out where and when your local headway support group meet youll find loads of support and information ......0808 800 2244

    something else they dont tell you is the person you take home after a BI isnt the same person he used to be.

    an unfortunate statistic is after a BI 85% of marriages fail because the partner cant deal with the change.

    good luck please keep in touch

  • I've rang local headway marks not interested in going it's only once every month. I've asked about phycological help they are short staffed. .....blah blah.

    I cry every day driving home from work. It's a mixture of guilt anger and all kinds.

    I don't want to be invisible anymore. Things hadn't been great between us for a long time.

    You can't make someone give you love. God i know that

  • debbie36a yes its only once a month and mark hasnt any interest in going .....nothing to stop you from going........2hours respite with people who have the same problem as mark and their partners who realise what youre going through.

    We had a lady coming to our group, her son wouldnt come, she got a lot out of it. we all support each other.

    forget headways for the psychological support......if you prefer to go done that route as opposed to the psychiatrist route then go to your gp and ask for a referal for time to talk.

    But most importantly find out where the group meets a START GOING.

    Youll thank me i know you will

  • With my local headway, before the group meeting the attendees split into two groups carers and survivors. At the first meeting my wife held it together for the first 20 mins then broke down sobbing not so much at the loss or struggle but relief that she wasn't alone and every one else shared the very mixed and often dark feelings.

  • we went because my wife needed to speak to people who had been there. apart from the formal monthly meetings we meet at peoples houses for coffee and a chat. 3yrs weve been going now

  • Meeting in peoples houses seems so nice. One of the things most of suffer from is isolation.

  • debbie36a something i forgot i get very angry when people refer to my wife as my carer. she is my suppport worker which is entirely different.

  • As much as i support mark...I'm his wife. That's all i want to be. Or even acknowledged as.

    I'm not into group meetings it's not for me. .mind you I'm not sure what is for me lately. Tomorrow is another day I hope for something

  • debbie36a due to his brain injury he is unable to control what he is saying and doesnt realise he saying hurtful things. at the moment youve got your job as your respite but if you dont get help youll go into melt down ......thats what happened to my wife and thats how we started going to group.

    good luck you can always leave

    me a message.

    oh before i had my bi i was a health and social care professional....thats why im such a smart ass

  • Hi Debbie,

    My partner had a stroke a few years ago which affected his speech, swallowing and memory. At the time I had no knowledge of Headway but am sure we both could have benefited from some group support. My partner was discharged with speech therapy but left to his own devices after that. We would have fun, practising the tongue twisters set for homework together : ) The hard part was his depression/ despondency at being unable to drive and work for some time and his resulting slurred speech. He was also worried that I would not want to be with him anymore due to his problems, especially in light of the 20 year age gap. I made sure he knew differently ! : ) The physical side of things: following up behind him to switch off taps, fires , shut doors, gates etc was very tiring ! He has improved somewhat with this but still needs an eye kept ( when I myself can remember ! )

    One of my weapons was a plug timer that cut the massive electric bills down by him leaving fires on in empty rooms while I was at work ! This has served me well too, as it turns out !

    When it came my turn to have a brain thingy ( suspected Encephalitis ) it was his turn to help me out. So one apiece, with the old brain thingies !

    Although we have cared and looked after each other ( and still do : ) ) I don't think we ever felt like our roles were purely as the other's carer - it has always been more of a team effort. We are very lucky that our upbeat personalities have remained after our BI's and in some ways, our experience has brought us even closer. I know that things could have turned out very differently if we had sustained marked changes in our personalities.

    I am so sorry that you are overwhelmed with the changes in Mark, it simply isn't fair is it ? Please do consider joining a group, even if only for carers.

    It would be very like talking to us lot on here but in person rather than just words. It could help to see what strategies others use to cope with such huge changes and responsibility.

    Kindest regards, Angela x

  • angelite as i said in an earlier post i get angry if my wife is referred to as my carer........she is my wife and my support worker .......she supports me in day to day things....trying to get me to shower make the bed eat take my meds.

    i had a mild stroke which left me with numbness down my left side and effected my frontal lobe.

    do you and your husband belong to a group Angela

  • Hi Steve,

    We don't belong to any groups, other than when I finally plucked up the courage to join here, which has been a real tonic. My partner was discharged after stroke and told to 'go home and get on with it.'

    In my case, my scan was clear at start of illness so was not taken seriously, told 'all in my head' and thrown out to psychology. We had to muddle through recovery on our own. At 5 months I was told probable brain infection, at 1 year I was put down as FND.

    I did a lot of research regarding my symptoms which helped me to understand why certain things happened during the worst of my illness and why I was left with the symptoms I now have. One of the biggest eye openers was the commonplace dismissal of neuro patients as psychological, following a clear scan or test without further appropriate tests being done. I can only assume restriction of funds is a factor.

    So we have pretty much made our own way through our experiences. Other than some grumpiness from us both in very early recovery, we are very fortunate that our naturally upbeat personalities were not affected long term. I think this has helped us enormously to weather the worst ( I frightened my partner to death with some of the weird antics my body threw at me ! ) in our determination to become the best we can, adapt to our deficits and come out of the other side still smiling and with an even more special bond. We are blessed : ) x

  • And why wouldn't you want to just be Mark's wife.

    My wife supports me, and at times cares for me, normally if i've got over tired and ground to a hault!

    She is my wife not my carer or even support worker.

  • Ooh gosh thats a hard one, from what you've posted sounds like Mark hasn't got a handle on whats happen to him fully, and that needs to happen.

    It's not easy on relationships, my wife has had to adapt, I was prone to getting upset/angry over dumb little thing, in the first year, I've much more aware of that now, and mostly in control but it did take time.

  • It may not seem like it at the moment but there is light at the end of the tunnel. There are many head injury survivors and carers on here that will probably agree that the first few years are very, very dark times. Neither of you will have experienced anything like this before and will have no point of reference as to how things should be now or most annoyingly how they will be in the future.

    It is a difficult for a partner to rationalise when our behaviour is less than polite. After all if there wasn't some sort of underlying injury post partners would have walked out through the door. This comes to the most difficult part - being a carer. Most partners feel trapped or obliged to care as the phrase "sickness and health" instils some sort of duty that you have both mutually agreed to. However, the person you are now caring for is not the "same" person you knew pre injury, personality and even speech can be completely different to a point you may have a "stranger" living with you.

    Despite what the Tarot cards say it is a fact that a high percentage of relationships post injury break down. The odds for stability aren't that great.

    Have a look at "Recovery" which is a really moving story which shows the impact a head injury can have on a stable family. David Tenant gives a really good portrayal of what is like having a BI and Sarah Parish the wife struggling to cope with the denial, mood swings, need for comfort and trying to run a family

    If you manage to watch all the parts, there is a long path ahead but you can make it but you will need support.

  • I've sent this to our girls to watch

    Thing is. ...mark hasn't been interested in me for a long time i just hoped things would get better when i asked why he didn't know.

    So I've felt like this. .....only worse now. For a long time.

    I suppose i hoped after all he and i have gone through he'd be different towards me and the girls. It's hard to explain

  • And still love him 😢💜

  • It is a pretty powerful documentary.

    One of the strange things I (and many others) have found is that after our injury the nasty side of emotion - being critical, shouting, short temper etc. was very easy, often too easy.

    However, the softer side both in words and physical expression of care was very difficult. I can't explain the why or reason but it was almost detachment from my children and wife. Any form of chit chat was very difficult and restricted conversation to the essentials mainly because I couldn't process a lot words.

    Feeling affection for each other does come back, but takes a lot of effort on both sides especially because you have to get to used to this new person in your life.

    If you want to chat at any time you can send us a personal message, I am more or less online most of the day and night - one of the by products, I don't need to sleep much these days

  • First thing, tarot, make believe. No fate but what we make. Secondly your in the very early days, we are four years in and it's still difficult but it improves. It does take staying power, us brainiers are a pain in the Arse. Statistic is something like seventy five percent marriage failure, but that doesn't necessarily mean that's you. You got a hang in there and see if he improves, each case is different. Contact your local headway and they can offer advice or relief.

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