Help!!!

I've been feeling the need to post on here for some time but now I'm desperate for advice. My 22 year old son had a TBI 2 half years ago. He was on life support and eventually pulled through however he struggles with daily life . He's had to reduce his hours at work so struggles financially, we have to keep 'topping his income up' which is difficult but we do it. My main worry is ( and the reason I'm posting) last night we had yet another near disaster. He left the sandwich toaster on all night , woke up to strange smell and Underneath the kitchen unit was red hot and wiring almost melted. This kind of thing happens a lot, he runs a bath with no plug in, leaves tv on and goes out leaves Windows and doors unlocked, cooker on, freezer door open the list goes on and on. I've only just began sleeping following a couple of years of restless nights worrying about him and I'm sure he's getting worse. He just can't grasp completing any task as he forgets some of the simplest things. What can I do to keep us all safe??? Is there any alarms / reminders etc available to assist us? He did have an OT that taught him strategies to deal with memory loss but he can't even remember these anymore. He's also on medication as he struggles to sleep . We worry about how he will ever live independently and can't leave him to go on holiday either. I feel as though I'm constantly nagging him but I know he can't help it. Any ideas for additional support????

43 Replies

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  • yup ring the headway helpline they can set you all up with constant support and help remind youre son about his stratergies

  • hi Carik

    My thoughts are

    1 ring headway helpline

    2 if you can .... Contact the OT and ask advice and if they could print the strategies.

    3 talk with your son and ask if he would be willing to try different things. Get printed catalogues from any of the disability providers as well as the RNIB and RNID.

    4 try not to change everything at once. It may feel like its all the same thing but there may be lots of different skill sets involved.

    5 post it notes at key points eg on the door to say are the windows locked?

    Above all don't give up hope

    Love n hugs

    Xoxo

  • Thank you. Il look in to these things and the post it notes can start straight away! X

  • carik im talking as someone who has a bi so i know what im talking about, unlike these medic type people who havent got a clue.

    firstly lets deal with benefits.....a personal indipendence pay .....this is a benefit that is not means tested...your son will be assessed but shouldnt go to any appointments alone

    b Employment Support Alllowance there are 2 parts to this......

    i contrbutions based .........they check NI contributions for the past 2yrs, initially payment will be the same as job seekers then after assessment this will rise by about £20/30 a fortnight. this lasts for a year and then the claiment is re assessed

    ii this is where you are assessed in the view of medical advice and assessment the claiment is assessed as being severely disabled enough , he/ she will be put in the other ESA catagory which will entitle them to free prescriptiond, dental and eye treatments plus the usual , housing council tax.

    ok thats the nice bits over with........now the things that could happen.......this is what people have told me what im like and things you should look out for.....

    aggression mood swings forgetfulness, youve already said , emotional...crying for no reason.....that i do know about , i can feel the tears running down my cheeks, inappropriate behaviour costant reminding to take meds, have a shower change clothes, bad sleeping pattern , in the middle of a conversation and blank its gone ...what was i saying aaaaaaggggggggggghhhhhhhhhhhhhh its gone, remembering to eat and for me the worse of all because i dont know im doing it, constantly swearing....

    we are one big extended family

    steve

  • Hi Steve. Thanks for the info. Don't you only get ESA if you are unable to work?? He worked full time previously but has now reduced his hours as he can't cope with long shifts and early mornings. I have heard the PIP is really hard to get so we havnt bothered ( more stress) . Everything you said I can relate to. Thing is he tried his hardest to be how he was ... Sporty played football , mountain biking Gym etc ... Some days he has so much energy and others he has no motivation whatsoever. These periods can last weeks. His diet also changed he eats nothing but junk food and is putting on weight. Then he realises and tries hard to loose it again. What really annoys me is people think he's fine as apart from physical scarring you can't see that anything is wrong.. They havnt got a clue!! He drives his brothers crazy. He borrows their things then looses them and I've lost count at the number of jackets he's lost when he's been out with friends . Oh and one more thing ... Yep the swearing !! There's a lot of that going on too.

  • Youre right there re ESA and pip. As unfair as it is there us absolutely no recourse for limited impairment. The fact you can no longer earn enough to live on properly is just 'tough shit!' In the current system. I have spent a long time on this myself over the last ear or so and I think your appraisal is spot on. Huge stresses that are not going to get you anywhere. It truly sucks.

  • Hi Carik

    Thank goodness you posted on here and please keep in touch.

    Someone who has some sort of experience of what you are going through will always get back to you and point you in the right direction.

    Please let us know how you get on xx

  • Thank you .... I should have done this so much sooner x

  • I was the same as you, had no idea it would be so helpful.

    Wish someone had talked to us in hospital about Headway instead of leaving a leaflet.

    So many people who share from personal experience and who understand and don't judge xx

  • Yep that's all we got ... A leaflet! X

  • I didn't even get a leaflet or told about Headway.

  • Snap

  • Hiyas. Just picking up one element of your post here. Maybe he will never be able to live independently. Have you all talked about this? Perhaps having this as a huge unaddressed worry is something that could and 'should' be dealt with.

    I don't know where you live but round here I see many young adults living with their parents. Health issues or not, living alone is just unaffordable. My next door neighbours have just undertaken extensive works on their house as both their children have chronic health conditions and are never realistically going to live comfortably in their own houses. Their son, who has severe chrones lives their with his partner and their daughter has her main base their too.

    My own little one has major heart problems. His ops have worked well and for the moment he is looking good but tbh his health outlook is precarious at best. Multi generational living is something already on my mind and he's only 7. I have no wish to live alone later in life anyway, as the one with the BI my fall risk is high, that already unnerves me at 40.

    I guess all I'm saying is it sounds as if you feel this issue is some sort of sign of failure. It is no longer an inevitable progression for many people and I thought it might be helpful to throw a different light on the matter and suggest discussing, even 'planning' for this scenario in a way that is manageable for everyone.

    Caroline X

  • Yes your right ... He does joke and say he's never leaving home anyway ha ha. It's just his friends are starting to move out and he's had the opportunity to house share etc but realistically it's not an option both in terms of finance and I'm sure he'd drive them crazy with his untidiness and forgetfulness. Anyway we will keep the subject open to discussion. Thanks x

  • Hi,

    I really understand both sides if your situation. I've been doing some if the things your son's been doing since my brain injury (nothing quite as drastic!), but worrying none the less. I also understand your own worries as I have a teenage son who has done a lot of the things you mention.

    My situation is no where near as stressful as yours, but the need for a break from being a carer is hugely important. I can't add to the excellebtv replies above other than to say.......are you registered as his carer? If he's unable to live independently & safely, then perhaps you should be? Carers can apply for respite care which might enable you to get away for a much needed break, but also you might be able to claim carers allowance? Just a thoght. I do wish you well for the future. You're not alone.

  • Thanks , .... No I'm not registered as his carer hubby and I work full time and I think you have to not be working although I'm not sure. Just to add to this scenario we also care for my mother in law who has dementia so are running two households . We need care for her too if we take a holiday which we are hoping to sort this year. X

  • Yep. You can't claim carers if you're take home pay is over 100£ a week. And in any case, for anyone to qualify for carers the person being cared for must be in receipt of (what used to be middle rate care DLA) I'm not sure what the equivalent PIP award is.

    DIAL may be able to advise you further on whether there is any sort of fianancial assistance to be had in your situation but I don't think there is. Is your mother in law receiving the right help tho?

  • That's another story. She was sectioned under the mental health act for some time then we moved her to a little house opposite ours as she was always adamant she didn't want to go into a care home. We had reablement team in for 8 weeks and now that she has to pay for the service refuses. She said she likes us to cook her meals do her washing, shopping, bathing, cleaning , gardening etc etc... it's so hard especially with everything else our own 4 children and working too!!! Anyway hoping to get a bath chair to help as I really struggle listing her. Apart from the adaptations no help at all just me and hubby!!!!

  • Goodness - you really have a lot on your plate. I sincerely hope you can get a break at some stage. Wishing you all the very best of luck with getting things sorted :)

  • My son is classed as main career for his daughter who hasCoffin-Lowry syndrome, he works full time but she used to getDLA now PIP, it is recognised that she needs constant attendance, can't go out on her own but my son doesn't get any payments, the payments they get are saved for her for when she needs it in the future. X

  • Hi Carik,

    First, may I say how well your son has done to recover from being so poorly. Unfortunately, survivors are often left with some troublesome long term effects.

    Both my partner and I have histories of brain injury - my partner from stroke, myself from suspected Encephalitis. We both suffer from short term memory and concentration issues which can lead to fun and games in our house !

    Do look into the financial benefits side of things as Steve has explained - I'll add a link to PIP questions here so you can self calculate what he may be entitled to :

    benefitsandwork.co.uk/pip/i...

    On a practical level, I am a huge fan of the timer plug for electrical devices. I got mine off Ebay - they can be set for 20, 40 or 60 mins and automatically shut off the power after desired time. They beep for a while before they shut off, giving you chance to reset them if you wish. Remove existing plug and wire onto cable. Since the average cooker is wired directly to the mains, maybe a Baby Belling type hob/oven that has a plug instead would be more suitable, so you can attach the timer plug.

    My latest weapon of choice was my Christmas present from my sister ! She has got me a self closing tap ( like the push type in public washrooms ). It has a 9 second flow before it shuts off. I am just awaiting a plumber to fit this in my bathroom basin. They are about £40 and come as a single item.

    Do you have key type window locks ? Could you keep them locked and remove keys ? Are they small top openers ?

    I haven't found a way to stop partner leaving door/ gate open yet ( super sneaky old labrador quietly takes herself walkies, given the chance ! ) other than reminding him or following up after him when possible !

    It is tiring enough having to recheck things after myself, let alone policing after someone else too, so I empathise with your plight : )

    Take care,

    Angela x

  • google.co.uk/webhp?sourceid...

    Ooo, lots of things to explore - I'll be having a look myself : ) x

  • Some great info there Angela thanks so much. Makes me feel so much better knowing people understand, when I mention things at work they really don't have any idea how stressful life gets when it's 24/7 dealing with this. Anyway gunna get myself on eBay in a mo and start shopping for some of these gadgets!!! Thanks again x

  • Going to put timer plugs on my list today! Fab idea!

  • Some good info already in the replies above. One thing I would add that it sounds like he's doing very well to be in ANY paid work at this stage. When I was at a similar stage Iwent for DWP assessment; I thought I was one peg down from able to work normally, but they were adamant I was two categories down and therefore under no obligation to work at all. Maybe he's having to use up so much mental energy at work there's little left for domesticity - that may improve if his work hours stay the same but capacity continues to gradually increase?

    On the H&S side of things, you don't mention a gas cooker, so maybe you don't have one but if you do PLEASE get an appropriate alarm - I had a couple of close calls on that front before I fortunately got one.

    Your understanding of how difficult it is for him to implement OT strategies sounds right. Very frustrating for all - as already mentioned just try one thing that feels natural/comfortable at a time and be aware they won't all stick.

    You sound like a wonderful mother; so too was/is mine. Without you we'd be adrift x

  • Hi there, thanks for the info. Yes he is doing well being employed but if I'm honest he's only just hanging on in there, he never meets his KPIs and at reviews isn't up to scratch but works for a large company and occ health are involved so they have to be careful how they treat their staff. He went back in to work quite quickly as he desperately wanted his life to be as it was... We all did but we all realise that's never going to happen. He's quite hyper too so has to be busy and on the go all the time he was really fit and sporty prior to his brain injury. We do have a gas hob is there an alarm we can purchase? X

  • Yes there are plenty - not sure which to recommend (where I live now doesn't have gas) but an internet search of 'gas alarms' gives various for around £20. Maybe enquiring at the desk of a gas/plumbing trade centre would give you the best steer for a bombproof option? One safeguard that once installed doesn't require thinking about. Sounds like your son doesn't come with a mental dimmer switch - I never have either, and that doesn't help with Fatigue Management but it's our personality so hey-ho :-).

    Bards

  • Lots of helpful reassurance by others that struggle with similar difficulties and also some good ideas. I have a frontal brain injury and have some similar difficulties. Am wondering if your son has been neuro psych tested? That would indentify his specific difficulties and help with knowing what things may help him manage but also will validate his problems which is especially important for understanding and adjustments in the work place. If not his GP should be able to refer to a neuro psychologist or if he still sees any hospital specialists such as a neurologist then they can ask your sons GP to make a referral. A neuro psychologist will also usually help by identifying specific strategies for your sons difficulties to try and help him to manage his day to day life if possible. Ask for guidance to be in a written format. I also have check lists for different things with tick boxes and that have been laminated so I use a wipe off pen so I can keep re using them. initially I was very opposed to having them because I thought that I needed to practise my 'remembering' to try and improve my memory. But this was not working at all and eventually I took the advice from the neuro psychologist and OT that I needed to use things such as the check lists to support and help my memory.

  • Hi , yes he was seeing a Neuro psychologist for quite some time and she did give him info and strategies to work on. Thing is he's 22 , works shifts. And likes to go out so its hard pinning him down. He hates discussing his problems and just gets upset when I pull him up on things and I feel I'm constantly on his back. It's almost like he can't address some of his issues and laughs them off ... But a lot of these things arnt funny!!! They are serious health and safety issues and there are five of us in the house. I will ask though for him to be re referred he could sort of do with a refresher course!! X

  • Did she actually neuro psych test him because that would evidence his brain injury difficulties and would be a help to try and get benefits such as PIP but also help his work situation.

  • I think so . We had a full report done etc. Il double check.

  • Morning Carick

    Hope you had a decent night's kip and the sun is shining where you are today..... sounds like a very stressful situation you have there and you did right to post for any advice/comments/support.

    A lot has already been said but I wondered about contacting REMPLOY about your son's work/money situation ? They were very good when I needed them early 2015 and came out to see me at home to discuss things and how to move forward with any claims ( I wasn't able to claim anything personally except for taxis to/from work ) and are government funded body to get /help people stay in work when they become disabled. Worth a phone call at least ?

    The other thing you mentioned that things had become worse ? Obviously someone mentioned that the work may be taking up all of his brain energy and therefore a deficit for domestic stuff .... but is it worth checking no new physical issues ( sorry if that worries you .... but I know that part of my initial symptoms before diagnosed with cvst was doing silly things at home - left the frying pan on all day whilst at work ..... left windows open etc etc ... of course these can also "just" be ongoing too - but because you said he had become worse I wondered if worth checking again ??).

    Post it notes were my life saver ( I live alone so no one to remind me of anything ) but I also had the plug actually taken off my bath so I couldn't have a bath ( wasn't allowed one due to seizures ).

    And yes - isn't one of the worst things of all not having any physical signs of BI - even within a few weeks people expected SO much .... but there isn't a dial on our foreheads or even more discretely on our palm to show that we are poorly / recovering to show people - for them to have some understanding .

    Is your son getting any counselling ? OT were also good at setting me some kind of daily routine that I would tick off when I had done certain tasks.....

    Hope some of the above along with the other replies you have had may be of use - and look after yourself too :-)

    K

  • Thanks for that... I already feel so much better knowing there are people that fully understand because if I'm honest I think work collegues friends etc try their best but don't really see the true picture When he returned to work some time ago we did have an application in to REMPLOY and it took about 5 months to process they allowed taxis to and from work but it was all too late. I had to change my hours at work to take him and collect him from work each day for months so we never sent the claim forms in as he was just about managing by then. He went back to work far too early really but didn't get sick pay and had a car loan to pay , insurance etc and wanted to get his life back to 'normal ' as soon as possible. I will contact them again tho just to see if they can help in any way. Another problem I didn't mention was money . He can no longer manage his money and it's a nightmare! He doesn't forward plan at all and his wage can be gone in a week. One example is he headed off into town with a friend to shop spent every penny he had and it never even occurred to him he needed bus fare home! By then he'd split from his friend and they were both heading home so another call to me to rescue him. This kind of thing happens a lot. I want him to be independent but his account is in a state overdrawn charges more charges I'm thinking of maybe trying to be a trustee or something to keep an eye on his spending as he's costing me a fortune!!

  • Hi Carick, I've struggled terribly managing money since my BI I likened it to giving an 8 yr old access to a bank account and credit cards, you just wouldn't. But my husband wouldn't take over the responsibility, I used to manage all the bills and household expenditure, I still do because he said I had to learn again. It took a long time and I can still forget some things but he's been patient with me and I'm almost there, it's taken the best part of 2 years to get to where I am and it will take another 3 years to clear the overdraft and credit cards, I'm a pensioner now so limited income.

    It's not been easy, hope it works out for you all. Xx Janetx

  • Do you think I'd be best pushing him to learn to sort his money out for himself then?? As a mother ( and because he's charged £25.09 for an unauthorised overdraft and £6.00 daily ) I'm inclined just to get on in there and take control of it. I don't know what to do for the best really. All I know is I'm constantly transferring money to his account . Money which I really can't afford to keep doing it runs in to hundreds each month! X

  • This is really a difficult one, with me it was a question of re-establishing the ability I had lost. I actually monitor my sons use of his bank account, he's 20 and away at uni. I won't let him overdraw and check his account once a week. He's fine with it, he's glad I do it, he's getting the confidence to do it himself , hopefully by the time he leaves uni, he worries about getting in a mess so I'm happy o support him through this.

    Managing money doesn't always come naturally.

    You know your son best, I looked at his student loan and worked out how much he could draw every week, told him what he could safely draw out weekly and he has to stick to it.

    Perhaps you can work out a strategy with him.

    Love Janet x

  • Thanks Janet. I think I need to really sit down and think this through. Thing is when he's skint and wants to go out I remember we almost lost him and think life is for living yep ... Go out have fun ... But we're paying. Can't help it really but the memories come flooding back and because we're lucky to have him I want him to live life to the full and that bit takes over. .... Oh dear x

  • Carik

    Just a couple of other tips

    You can get things that aren't quite child locks but more like a latch that hooks round to make sure the fridge/freezer is closed.

    You could try putting the kitchen gadgets, toaster/slow cooker on a four gang extension and that way only one thing has to be switched off or for extra security take the plug out .

    Microwaves and halogen ovens are brilliant for me as they switch themselves off.

    Love n hugs

    Xoxo

  • Hi Carik,

    I can only go over what others have said and get to headway who will help you. They have been brilliant with me my wife and kids its all about feeling you are not alone in this and experienced people are with you. Take care and have a good Sunday. Nick XX

  • Hi Carik

    You do have a lot on your plate don't you ...understating the bloomin' obvious ;)

    Money wise I think it could be worth applying for PIP for your son and the trustee idea is also a good one.

    Memory wise and from a safety pov...I have pretty much no short term memory and was accepted onto a memory aids programme. This looked at key areas and helped provide strategies and more importantly gadgets that help keep me safe and functioning. A couple of these things might be useful for your son. One is an alert reminder that can be set to go off at 15 minute intervals during the day (if necessary - some people use it to remind them of appointments etc, mine also goes off at key points in the day because I tend to lose all track of time) Mine has a voice activated thingy attached so if the alert goes off and I don't know why, it has a reminder to check. I also have a couple of motion sensor activated gizmos. One is by the front door and it rather loudly tells me to STOP! and then it asks do I have my keys, my phone, am I dressed with shoes on, do I know where I am going and why. (yep I have been out to the shop in my pjs and bare feet and I didn't notice until I was on the way back) I have another motion activated gizmo upstairs with different prompts... but your son could have one that reminds him to check everything (and you can be specific) is turned off before he goes to bed. The OT should be able to help- with sourcing those types of things.

    Streamlining strategies really helped me too. If he has a mobile phone or tablet that he can use (I say that because after my injury I could not grasp anything new technology wise) there are programmes he can download for free that can help with this. These will continue to remind him until he carries out a task to stop them - which is perfect for people like me who switch off an alert and then forget it even went off in the first place and carry on as before... He can also sync them across all devices.

    We installed a huge wipe board in our house its in the hall at the bottom of the stairs and there are always at least two working pens there as well as a post it pad and ordinary pens. important stuff and messages goes on there because it is visible and in a high traffic area. We have a glass one so it doesn't look at all ugly ;)

    It was really hard to get used to using the systems but when they work they work well and so they soon became a part of the routine...it does take time though and it is trial and error to see what works for your family. We had a lot of fails along the way

    I hope you can get some support both for your son and yourselves.

  • Hi there,

    When he gets his refresher on strategies could you share them with us?

    So far from this post I've noted down:

    Timed plugs

    Special taps

    Laminated lists

    Gas alarm

    Voice alerts gadget near door

    White board

    (Have I missed any?!)

    If there are more strategies be really useful to know. ( understatement!!!)

    I was told simply stop at the door when leaving a room and check you've finished everything so develop this as a habit - not rocket science but does catch some.

    Although problem can often be on days you're rushing around feeling "normal" - - the days when you feel "fixed" then you realise left hob on and doors open are the scariest of all.

    These gadgets sound a godsend!

    Good luck, and keep us posted.

    Ax

  • dear carik

    i am sorry for you (and your lad)

    i have same thing going on an did do my own thing for my imedeate memory loss

    and that was nothing

    my short term is better my long term is ok ish

    any road as for technich first ask what he remembers in an hour

    same over six and twelve write it down

    this will give you an idea as to how bad or good his memory is

    also give him an idea to put a time marker in his day when he remembers or not

    pen and paper do not work

    i ended up with book after pad of uter gibberish and did very upset when did not remember what i was on about

    so i did markers maby a shop id been in food eaten even when been to toilet

    somthing i rememberd

    it is the start of training your brain to adapt to what it has lossed

    i lossed my minds eye is commplicated but do try to see how bad he is

    as he may need reabilatation if not had already

    good luck

    i still forget to get lock door because i remind myself to do it

    then think already done and go off to town

    windows same

    running bath opps

    cups of coffee hunreds left

    poor lad

    help him help him self

    why him not on here

    good place for him

    good luck

  • Hey , I'm not sure what more I can add as all the responses are pretty spot on , I just wanted to give you something to think about from a perspective that's similar to his. I've had two pretty horrific brain injuries and still go through the motions of the effects everyday. I can only imagine how stressed out it makes you to see such a change in your son and fearful of what might happen next but try not to give him too much of a hard time about it , he may say hes fine but he knows himself that something is wrong and that's scaring the crap out of him right now. I know when I first started messing things up that I didn't realise until after I already done it that it wasn't usual behaviour. I was 12 with my first accident and 15 with my second (23 now) so although a fair bit younger than him I also watched as all my friends grew up , went to university , started families etc and it really upset me and I felt so alone cause few people understand. Chances are that's where his aggression and swearing is coming from he's just as frustrated with the "New him" as I imagine you can get with him. The finance side of it is very tricky , unless you've got physical issues getting PIP is a real struggle ... but at the end of the day it's only money , I'm sure you'll find a way to muddle through until your son learns to cope with his new self. As for the support side of it , try asking your GP to refer him to the psychological team to receive CBT (Cognitive Behavioural Therapy) I went through it and it helped me so much !! Mostly because it's not a therapist telling you what to do , they just point you in the right direction and youre left to do the work yourself so you can find what works best for you. Recovery takes a lot more time than we would like it too. I moved out with my ex a few years ago and mostly woth his support I managed to live basically, but I've had my own place for a few months now and it's going well so far. I'm sorry for waffling on too much ! Just hang in there cause it will get better , it will never be like it was but just think of it as a brand new experience for you too :)

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