New to TBI and this.
Hi.
I am a young teenager and labelled the daughter of a disabled man.
My dad suffered a major stroke nearly a year ago causing major brain injury and the right side of him paralysed. As things are starting to slow down, this being my reality is really kicking in. I'm struggling to keep all my thoughts and feelings in yet I feel no one understands. I guess I joined this in hope someone will understand me fully and I won't feel like I'm going through this alone. Xx
Welcome! As cat3 said you have come to a good place. I am a 53 yr old Mum and had a TBI in 1989. My son 21 is my main carer (my daughter is at University and my husband works long hours away). they have grown up with my condition but I am concerned about the burden on my son now and would share with you what I have found!
First we are completing a Carer's Assessment and also an Adult Social Services Assessment for the help that I need. There are many young people in this position and there is provision. Have you had a meeting with Citizens Advice? They are excellent. You should find that going through the details of your situation 'out loud' is actually very helpful for you to identify what you are up against and to 'see your way'.
The fact that your Dad had a stroke is at least a clearcut medical condition too - third parties are not easily impressed by the various odd results of closed head injury which neurologists are not interested in as there is nothing to see on an MRI...
Take care and keep sharing!
Hi Caroline.
Thank you for your reply. How's your journey of recovery doing?
Yeah, I have another two siblings who don't take on the role quiet as much as me. They ignore what's happened to dad and continue to live their lives as if nothing happened. I find it selfish and don't understand why they wouldn't do what they could to help dad but my mums answer to that is 'it's the way they're coping' - I find this an excuse.
No, I haven't looked into it I never knew it existed. I'm a bit clueless in knowing what's available to me and what isn't. Speaking on here is already making me feel normal and understood for the first time in 11 months.
Xx
Hi and welcome,
When I was a teenager, I had to help look after a parent that was poorly, so I know the burden you are carrying.
Have you tried getting in contact with someone like Barnado's whom work with young carers and can offer support and open the doors to other services ?
barnardos.org.uk/what_we_do...
Hi thanks for your reply.
The only thing is, I'm not classed as a Carer. I don't qualify to claim so would they still be able to support me and according to the law I'm not actually a carer?
When you sit down and think of all the things you do for your dad, you would be surprised how much it all adds up. Even sitting there holding his hand or chatting to him about your day goes a long way and is the tenderest form of care.
I have worked with Barnardo previously and they are really helpful and will be able to offer some support. You can ring them in confidence if you don't want to involve your folks at this early stage.
Without sounding big headed I believe I do the most in supporting my dad from getting him up and supporting him through the day until my mum comes home in the evening. I would be classed as his full time carer If I didn't have to work weekends to support my mum financially.
I'll give them a call, thank you so much and I'll keep you posted in how it all goes xx
You are doing really well in supporting your dad. Be proud of that. Do call headway. I can add 2 tips here. You can get 2 books to understand more about your dad and help him with diets. It's worth a try!
Tina M Sullivan, Nourish Your Noggin (cookbook) which accompanies the treatments favored by Dr Diane. Dr Diane's book is also good, 'Coping with Concussion and Mild Traumatic Brain Injury'. She has strokes herself.
drdiane.com/conditions/trau...
Perhaps try to persuade your other family members to help with this too and encourage them to cook the recipes.
Research into treatment for stroke victims is ongoing to. There have been articles about stem cell transplants into areas of the brain which were not damaged which were able to grow new tissues (not a medic, sorry if I get this wrong) in the damaged area.
Also I spotted an article in an issue of Metro abroad (not in English) on research by Dr Alexander Sack, University of Maastricht. He has proven that NIBS (non invasive brain stimulation using elctro-magnetic currents) restores some functionality to the brain even after strokes. I'm not 100% sure of this research area, but worth looking up.
Don't give up hope some day that there will be advances in treatment sometime.
Wow I'll definitely give them a read they sound good!!
I heard that theirs new research and you can volenteer to have your family member as a trial which we've all agreed would be a good idea however I've not even looked at what's around yet!
Thank you so much if you find any more interesting articles or come across something please let me know!
Thank you!!
If I see interesting things about food or research, I will share them.
Did you try to find support groups for young carers in your area?
I also wonder if there is an app or similar program for a laptop which could help your dad communicate? If we look at Professor Stephen Hawkins, who has ALS, then he uses a speech generation program to give talks! Maybe there is someone at headway who can advise on this sort of tool? If not, make your own language up with your dad using hand squeezes or blinking to mean yes or no for example.
Thank you.
All that high technology is so expensive and unfortunately we can barely even afford to pay the bills every month never mind pay such an expense.
I do spend a lot of time doing speech and lanague with dad to try get the brain working. We sing together (apparently speech and singing is a different side of your brain so dad can sing songs he knew before the stroke despite no speech).
Funnily enough im really good at guessing what he wants or needs as if we have some sort of telphathy going on haha!
I actually watched the Stephan hawking film last night and realised how close to home it feels. I'll do some research and see if I find anything interesting.
You are doing a great job, but try not to let it take over your life. Your mum is being judgemental as she is upset about losing her husband, the person she is married to now is different to the person he used to be. Try not to get upset with her and understand how it is for her.
There are organisations for young carers - you don't have to be an official carer. Get in touch with the local social service (they will be in the phone book) and ask them what is available in your area.
Do help your dad, he will appreciate it but see your friends and have fun too. Your dad wouldn't want you to spoil your teenage years.
Yeah I'm trying my hardest to leavinf my problems at the door and starting each day new. I'm just worried my mum and I are going to fall out and she's going to look at me as a disappointment if I don't continue to just do as she pleases which involves making her happy instead of me.
I understand how difficult it must be and I've tried to sit down and talk to her about it but she doesn't want to listen. She gets argumentative with me telling me it's her problems and not mine, I can get up and leave and she can't. She makes me feel bad and nothing gets solved.
I'm trying my hardest to keep everyone happy but I don't know how much more I can take feeling unappreciated.
Thank you for your reply it means a lot xx
Welcome broken.
It has taken me a long time to read all this.
Please contact the carers trust. Check them on the web and see if there is a branch close to you. carers.org
Love n hugs
Xoxo
Yes, I echo all the welcomes and am full of admiration for you. I have a daughter of your age, she was only 4 when I had my ABI and she has lived with this new mum for most of her life. What we sometimes forget is how hard it is for our families- I am so busy taking notes (rubbish memory) and holding things together but there are often people like you who are doing unbelievable things to help us. At your age you should be free and having fun so make sure you always take some time for yourself and reach out to all the support groups you can. Have a good day
Welcome Broken. I have recently been diagnosed with Aneurysm so not had stroke yet but very scared what I will be like after surgery for my husband and two children 14 and 10. I am sorry you are so isolated. I felt that way as didn't want to burden my family directly but you still have emotions you need to discuss. You have had your world tipped upside down and difficult for you all to adjust. Hopefully by being able to talk on here it will help to relieve some of that loneliness. No one deserves to be so lonely in these situations. I don't think I can add much more than Cat3 hasn't done so eloquently but to say things are difficult, but can improve. I am in the middle of doing a psychology degree which I have had to stop because of the surgery I am about to have. What it has taught me is though is the brain does get damaged and it can't repair itself, but it can slowly re-route itself with stimulation. Little tasks at a time which probably seem insignificant but will help. It will seem its taking an eternity but it is a possibility. My friends mum had a haemorrhage 2 years ago. Initially she couldn't do anything but blink with her eyes. She is now walking, talking, dressing and it has been a long difficult road, but don't lose hope. If you can't get help is there anyone you can ask about tasks, activities than you can help him do to encourage improvements. This however I know is no less upsetting or disruptive to your life and that is upsetting. Its difficult because your mum probably is desperate for support but you also need your own support and understanding and sometimes those two things are not the same. Give Headway a ring and see if there is any emotional support or counselling that you may be able to get, or as Cat3 says we are all happy to talk along with you at this difficult time. Your entitled to your down days and it helps to talk out how your feeling.
Hi. Thank you for your reply.
Wow. I am so sorry for what you have gone through. How are you?
No matter what happens, what worries, stress or tears your husband and children may feel please remember they love you no matter what and I believe your recovery will be superb. I pray for you
I reached my heart out to my cousin today who had no idea how I felt and she told me not to feel like a burden and express my feelings but it's so hard not to feel pathetic and shut down. This is why I've joined this group.
I don't feel there's any support in real life as either my close family don't want to hear it or my close friends 'don't understand'
I have a family friend who might help me with different activities. She's a stroke nurse who I haven't even thought about messaging. Perhaps I'll do that tomorrow.
Xxxxxx
I am ok just want to be getting on with it and dealing with whatever the outcome may be. Just hoping I am not a burden to them. Never anticipated being this poorly at 40 - should be out enjoying things. I'm lucky though that they have found it and should be less symptomatic if operated on. Probably worrying for no reason and it will go fine but can't help being terrified what might be.
People are so busy with their lives they rarely either notice or afraid to acknowledge in case they commit to too much. They do say you don't know your true friends until you have something bad happened to you. You can have a room full of people sometimes but feel like no-one hears/sees or understands. You can also find some real friendships in those you didn't expect. I'm glad you've managed to have a heart-2-heart with your cousin and she's right.
I have found chatting on here very helpful on the days you're not feeling heard really helps, so hope you do too. It can be helpful just to off load.
That sounds likes good idea - she may have more of an understanding of what your going through.
Wow. I feel like I can really relate to your daughter. My brother, he continues to live his life as if nothing has happened and how he would've. I never thought being the person who cared the most would feel the most punished for it.
Question, did you ever take your steam off on your daughter? If so, what was your main reason? A lot of people tell me my mum attacks me the most because I'm the closest to her. But I think this is a poor excuse. The more she screams and shouts at me, the less I want to help her.
Thank you for your amazing advice xx
Hi, hopefully you'll find this site as helpful and supportive as I have.
I had a stroke like your father, he'll be dealing with a lot of things at the moment, from fatigue, memory problems & what can feel like a change in his understanding of the world. He will improve and he will find coping strategies that will help overcome some of his difficulties.
It will however take lots of patience from everyone involved.
If you have any questions or simply want to let off steam, this is the place to do it. We all know the frustration you and your father are feeling.
It's important that you look after yourself so that you have the strength to deal with this.
Take care
Px
Hi Broken
My children were 11 and 13 when my husband had his cardiac arrest which damaged his brain due to lack of oxygen. Both were supportive to me and helped supervise their dad on occasions but the majority of caring fell onto me. They are both now in their 20s but whereas our son has forged ahead in his chose career, things have been a lot harder on my daughter. Our relationship suffered throughout her teenage years as I got double the usual amount of teenage attitude and hatred because she couldn't be angry with her dad. Things are now getting better but aren't quite 'normal' yet.
You should be able to get support through a Young Carers Group and some Headway branches have groups for the children of survivors. Both of these will give you a chance to talk to other young people who are going through the same sort of thing that you are. Your council website will have information about Young Carers.
I hope things start getting better for you soon.
Hugs
J
Hiya lovely. My mum has just has a mini stroke and then a massive stroke. She has a blood clot on her brain which has left her right side paralysed. It's almost a week that this happened, so we don't no what the out come will be hopefully full recovery. Plus she had bels palsy 5 years ago.. any advice you can help me with.
Amy
X
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Welcome Broken. I'm sorry you're so lonely and isolated, but by coming here you've found a safe place where, hopefully, you'll feel able to talk about the effects your dad's disabilities are having on you.
You're a brave, and also a very sensible, young lady to ask for help, and everyone here will understand the strain of caring for, or simply living with, a brain injured family member.
I hope we can talk some more tomorrow and I'm sure others will want to welcome and support you.
It's 2am, so I'll say night-night for now m'love. Cat x
Wow thank you so much for your reply.
I've been trying to find some sort of 'support group' around my area or online but this is the only one I've managed to come across.
I try my best to take care of my dad and make life a little easier for my mum but it never feels good enough. I know she's stressed and feels as if her life has now had to come to a stop but the more she takes it out on me the less I want to do to help her.
I feel stuck in a no win situation where I get made to feel bad if I go out and live my life but then I get moaned at for not doing what my dad would want me to do.
I'm tired of constantly doing wrong and never knowing what way to turn. I try to talk to my mum to tel her how I feel but I get cut short and told I'm just being pathetic and should be 'grateful' for my dad still being here. How am I suppose to be grateful when I'm mourning for the man he was?
It's all so hard and confusing. I just hope someone will help me see the light at the end of it all.
Xxx
From what you've said today you certainly play an enormous part in caring for your dad, and you need help. You describe yourself as a young teenager ; do you mind me asking how old you are ?
I'd advise you to phone the Headway helpline to talk to an understanding professional and maybe talk in detail about your caring role and how it's impacting on your daily life.
The no is 0808 800 2244 and the line is manned during office hours, mon-fri. Calls are free. You'll be able to talk, in confidence, to people who understand the weight of your problems and can offer emotional and practical support.
Meanwhile you can talk for as long as you need, to us here on the forum.
Though we've each had our different issues we share the common problem of after-effects which range from emotional issues to memory and balance difficulties, and many others.
And we have both survivors of brain injury (general term for all, whether from external damage or illness) and carers, so you'll be surrounded by people who understand, and who care.
Love Cat xx
Hi cat.
I guess I do but I'm only giving back to my dad what he gave to me. He can't talk or walk and I try help him express his feelings and try get him moblie as possible. I guess that's everything he taught me. Anyone would do it for someone they love I guess.
I suppose 'young teenager' was the wrong expression to use. I'm 19, 'young' and a 'teenager' but I respect theirs people younger than me who Probably go through a lot worse than myself.
It's so nice to feel comfort here and speak to so many kind people with different experiences and clearly people who have overcome TBI. I never realised how much respect I could have for strangers.
You express yourself with such compassion and maturity. And your obvious love and respect for your dad is so moving ; I feel quite emotional reading your words of gratitude towards your father and it's taken me less than 24hrs to feel protective about you.
Your compassion and dedication is amazing B. but I hope you somehow manage time for your own headspace occasionally amidst your caring role and weekend work.
I'm so glad you've found us ; hope to see more of you ! Cat xx
Wow. Thank you cat. Them words have really made my day and made me feel so welcome.
You seem like an amazing woman. What's your story?
I'm going to try. I'm going to try live each day as it comes. This morning I woke up extra early to have 'me time' before getting dad up and ready. I then left him to watch tv upstairs so I could spend some time doing house work in peace. I then continued my day positively and instead of being frustrated with him I tried to understand. Today was actually a good day. I know they're not all going to be the same but it's a small step forward. Xxx
I'm a night owl, but then I don't have to be up early like I expect you do ! I hope you're tucked up in bed now but this will keep.
I had a spontaneous brain haemorrhage in Dec 2011 so I'm past the 5 year mark now. For my family (adult son & daughter) it was terrifying, as you'll understand all too well, but all I remember was collapsing then finding myself in a hospital bed 3-4 weeks on.
So I don't remember any of the pain & anxiety 'cause that's all part of forgotten memories, and afterwards I learned to walk again (and even ride my bike) and I've come to terms with the deficits, such as lousy memory, and annoying after-effects which brain injury brings.
The emotional instability is a challenge for many people here and I imagine your dad will have his ups and downs, but I guess his will be even more frustrating if he can't express himself in words.
Do you feel your dad has made progress since his stroke B ? And has he had much rehab or Occupational Therapy ?
I'm off to bed now ; hope we can catch up soon. Love Cat xx
Wow. That's awful. How is your recovery doing? Was there ever a point you didn't think you was going to make it? It's so inspiring how you've over come that and still seem to be such a down the earth lady.
Dad went to Northwick Park hospital for rehab for about 5 months. His progress there was amazing. However due to my mum working long hours and the NHS being the NHS, we don't qualify for much rehab now. I take dad to the gym for an hour a week and he gets a speech and language mentor for an hour a week. Very different to 9-5 mon to fri rehab he was use to.
I don't see much improvement as i spend most my time with him. I guess there's got to be slight improvements but nothing extreme. I understand it's going to take years. Xxxx
The only time I thought I wouldn't make it was as I was losing consciousness ; I was aware of someone close by (apparently paramedics) and remember fighting to get the words out to tell my kids I loved them.
After that there was nothing 'til 4 weeks later when I started to grasp what had happened, and then it was a matter of proving to my family that I'd be absolutely fine after all their worry.
When reading through your other replies I spotted your comments about singing with your dad. That is, by far, the sweetest, coolest form of caring for a loved one I've ever heard of ! ................it reminds me of the YouTube video of the son and dad driving around singing together in aid of Alzheimer's.
If you haven't yet phoned the helpline, give it a go m'love ; they're lovely. xxx
Wow. You are one inspiration. How are you feeling now? Is there still rehab available to you or are you in the all clear?
Yeah. I'm very music oriented so I try incoprate it into our day.
Today was a complete juxtaposition, I tried to keep positive but I couldn't. I felt so upset for no reason. I left the house for a few hours then came home and cried. Cat, do you think I'm some sort depressed, do I need help? Or do I need to keep my grad high and wait for it to all blow over xxxx
I think you need some serious 'hands-on' support B. And IF you're depressed it wouldn't be at all surprising.
You need to phone the helpline today before they close for the weekend, and tell them how desperately low you're feeling ; they might have ideas for support/respite for you.
I haven't said this so far as I can't possibly understand the dynamics of your family, but I do think you have the roughest deal in caring for your dad. I know in your heart you want to care for him, and you're doing just that (with obvious affection) but it looks like you've been thrown in at the deep end with little/no support from siblings or mother.
Your family needs some kind of mediator to sort out the needs of every member and to allocate duties to each & every one of you more fairly. I understand how your mum is probably in a strange place emotionally and struggling to keep food on the table, but she shouldn't expect you to keep up this level of responsibility and sacrifice indefinitely.
I have to go out now m'love but we can talk this evening if you like. Meanwhile, PLEASE phone the helpline on 0808 800 2244 ; you'll fine they're very understanding.
I'm really sorry you're so down ; I shall be thinking about you. xxx
PS you might want to see your GP and talk to her/him about your situation and how it's affecting you. xx
Hi broken, you comment 'mourning the man he was' really struck a cord with me. My dad suffered 2 cerebral bleeds when I was 11 and 13 and is severely disabled as a result and I spent a lot my teenage years in a state of panic, shame, embarrassment, anger (aimed at my mum). I remember a lighting bolt moment when I was 19 where my friend lost her dad to an RTA and I realised my dad may be different but he was my dad. It took me a while but I've embraced my 'new' dad and am so proud for what he has achieved and overcome. I really hope you can find a way for your mum to listen as she will probably be just as scared as ou are and you are all finding your feet as the same family but.....different.
I still mourn my dad. On my wedding day he gave me away and did a speech (my mum wrote it!) but I felt sad that I/we had missed a great father daughter moment despite him being there physically but I was sure glad he was there regardless.
I hope I'm making sense but to sum up, I think I know how you are feeling as I felt all those emotions too and my teenage friends didn't want to talk about 'my sick dad' (this in no way reflects my friends but they were teenagers) so I felt all alone too but you will find your way x