hey guys im new here does anybdy else feel trapped. im polly im disabled but also a full time carer for my partner who has spent 7 months in hospital after a sore throat led to life support for 6 weeks and now lost his sight and uses a frame indoors and chair outdoors, im so tired hes moods he can be so nasty im exhausted but feel like ni support im in awful constant pain but feel bad for moaning
new here partner with hypoxic brain injury - Headway
Oh my goodness Polly, you poor thing. No wonder you are exhausted. Have you spoken to Headway for advice? They are full of information. Also you need to get in touch with Care for the Carers (you can find them online). They can arrange respite for you and make sure you are getting all the help and benefits you are entitled to. They can also help with anything your partner needs to help him improve his life. Have you also contacted charities for the blind? There are lots of things that could help him, talking newspapers and books for example which might help him to feel less cut off. There is help out there but it is often hard to find it.
I do hope things improve for you. Keep in touch with us and let us know how things are going, the folks on here are lovely and it is nice to have someone to 'talk' to who understands the problems.
Don't forget to look after yourself. That is most important for your own health and for his sake too.
hey jan thank you yes headway came to see us theres groups he can go to but sadly as he cant toilet himself they dont have provsions for carers now. one day a week he goes to the local blind club we have to pay but he loves going and they are great. hes only 42 like me so feels like lifes now stopped and i have a son and daughter, im the one who always keeps a positive outlook on life u have to but this is wearing me down, we have been sleeping in living room as havent installed a stairlift yet 2 weeks to go lol. carers ring they are great just seems like take me away for a few days sleep as i feel cant leave him with his epilepsy as well. thanks lovely guess its just been the longest year of my life just nice on here people to chat to x
Hello Polly and welcome. What ages are your son and daughter ? I'm wondering (if they're adults) whether either would be able to take over for a couple of days to allow you some breathing space ?
You really do sound like you've reached your limits and, let's face it, if you don't get help from somewhere your own health will continue to suffer. What a sorry society we live in, when good people can't get basic help from the NHS.
You might like to try 'Helping Hands' which is a reputable organisation providing respite for carers. The number is 0843 634 6946.
I really hope you can find some support my dear. You're obviously doing what you can to provide quality of life for your man ; I'm so sorry about your predicament.
Please stay with us and, at least, accept some moral support so you're not quite so alone emotionally. All best wishes, Cat x
Hi Polly welcome to the forum. I really understand where you are I have been there. A lot of your story is similar to mine, I'm disabled and I've had a TBI. But my partner is my official carer, but I am his unofficial carer as he has had two serious head injuries. I know what its like when your dealing with a partners moods, they feel like explosions and you can't physically escape them. Please don't get to the stage we did, where his explosions were affecting my health. There is a lot of support out there, we all will be here if you need to talk. Also the advisors at headway are amazing they're good listeners but give good advice to. I would also link up to your gp and see if you can see a therapist. You need an outlet and you need support. I am a good listener no matter how rubbish I might feel myself I will never turn anyone away. You've made a big step by coming on here and telling your story. Your not on your own Polly x
hey angie sorry to hear about your partner its mad isnt it before if he shouted i would explode now i end up crying and hs consultant warned us his moods could change and has told him and they have got him on medication. where i would scream im to tired to care. headway are great wish he could attend the group as it wud help him so much . hope your ok and im the same was a nurse and advise on mental health now just different when its us hah x
Your totally right but I bet you ha e a strong mind and a fighter, but it is exhausting. You can feel so trapped, I tried to cope for 7yrs but his explosions caused me to have a lot of seizures. You do get to a stage where your mentally and physically exhausted then you know enough is enough. We try to give each other space and he's now in the system where he's going to go to a brain injury centre. My advice is get as much help as you can. You can ask your surgery to link you up to their care coordinator. They are brilliant, they will find out about your circumstance and also his and come up with lots of support, groups, activities or just be there and when your carrying so much on your shoulders this means so much x
thanks hun you have coped so well for so long and yeah they have given us loads of places he could go and without me to give us space but i pay 50pound for one day at the blind centre as he needs a carer with him, he was assessed and only given 10 hours a week care its so wrong they have pushed for more but none yet and if i go defeats the object. im like i have a bed for him in living room my daughter misses her mom and just a few days of being me again is screaming at me hah x but thank you il explore and keep on at them
Your welcome it can be such a relief knowing your not on your own. You have to think of yourself and your health its easy to forget and try to cope with everything on your own shoulders. Unfortunately no one hands you the help you have to find them and be prepared to fight, don't take no for an answer thats my best advice x
hey cat thank you for replying my sons 19 and at uni and my princess is 15 and already a young carer with exams and this has knocked her so bad has they are so close but she helps me with his meds and cupppas and puts him to bed for me she an angel. ive missed operations and stuff because its just me him and kids and he could get respite in the nuero ward he was on but then wiating list 12 months plus . thanks i guess hes coming to terms with it better than i am. luckily have a good gp have a debilitating illness and bipolar and they help loads. and yes we have fought so hard since getting him home its bad xx
Sorry I am late on here today but wanted to say hello there and welcome to a lovely supportive forumxx
hello Huggybear, Jules here.
I missed your post - but just wanted to say hello and welcome. You are having to cope with so much, I am so sorry.
The forum you will find is such a supportive group of people. The people here are also very informative about issues regarding coping with a brain injury/coping as a carer. But most of all the 'catch you when you fall' with a friendly 'voice' and understanding ear.
I dont know much about anything these days, but i am usually around in the wee hours of the night - i dont sleep so am usually nudging someone for a chat about maybe just the weather.
You are not alone now you have found these lovely people here.
You sound like you're having a really hard time.....and you sound like you need some more support. Maybe you should go and chat to your gp and see if there's any help available....?
heya thanks for replying i was having counselling but because i asked for 2 weeks off due to the fact i had so much to do with partner coming home they sent me a letter saying i was dismissed, my dr is amazing and all medication is really good. guess its the lonliness of not seeing the outside world i get excited by the postman haha x
Hey huge, caring can be a lonely old business. Are there no groups he can attend locally so you can get a wee bit of me time?
hey thanks for answering yeah he goes once on a thursday because its expensive sadly because he cant toilet himself many places including headway dont have th facility and me going wud defeat the object. and despite spending so long in hospital now hes home he doesnt like anybody but me toileting him i know its hard but i think hes dignity went months ago x hope your having a good day
Have you explored him maybe having respite care for a week every couple of months? Where in the country are you based?
Sometimes rehab units do respite care i.e. A wee week here and there to help take the pressure off....maybe there's another unit nearby where they've transferred the service
thank you all so much sorry wasnt ignoring you been a long horrible few days spent in tears im exhausted and his moods and abuse is horrible, had social services out who are fantastic but he wont even go to rehab for one night. we had the stairlift fitted yesterday so now can get him upstairs but the bathroom isnt no good but hey its my fault. but he will start to go upstairs to bed and because i sleep in spare room i can relax and hopefully get more time with daughter. ive just got so low at minute i walk away before i do him in lol
Headway is an amazing charity and have a lot to offer for carers and families.
I am actually researching the impact that brain injury fatigue can have on partners/spouses/boyfriends/girlfriends.
I am looking for any willing partners that may like to share their experiences via a short online survey. There is currently no research in this area so I really appreciate any help.
I hope that my research will help gain insight into what it is like to live with someone who has brain injury fatigue and identify ways to better support you and other partners in similar difficult situations.
Also please feel free to share this to anyone who you think might want to take part.
The link to the survey (you can copy and paste into the search bar if it doesn't work):
#braininjury #fatigue #partners #experiences