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Complete Change after Brain Injury - Carers UK Forum

Complete Change after Brain Injury

For issues related to specific conditions and disabilities.
15 years ago, my mum suffered an brain aneurism which haemorrhaged, resulting in a stroke as well as brain damage. As well as being left with some physical disabilities, it's the mental damage which I struggle with the most.
The part of mums brain that was effected was the frontal lobes, which I am told makes you the person you are, personality, feelings, motivation etc. Mum is a totally different person. For most people, this is very difficult to understand. The 'shell' of my mum remains, but it is like I lost her all them years ago. Iv always managed to deal with this the best I can, turns out, I wasn't dealing with it at all and I'm struggling more than I ever have.
Think it has been since I have had my own family and mums issues have added a lot of extra pressure.
Imagine, having a caring, loving, nurturing, kind etc mum. Then, one day, she gets sick and everything you have ever known is gone. Replaced by someone who looks like her, but is snappy, shows no emotion, no happy, sad, LOVE. Someone who relies heavily on you for everything (tough at 15 years old), expects the world with little consideration for her own child, laughs when you cry because they have no idea what else to do. Has no filter, so what thoughts go into her head, immediately come out of her mouth, no matter how humiliating for you, especially to complete strangers.
I could go on!
I suppose I wanted to put myself out there and hopefully hear from people that are dealing with the same kind of things. Caring for brain injury is very lonely! How do others cope? Are there other people out there that feel this way?
There is a lot of anger and resentment. I'd be SOOOOOO grateful for some advice.
Thank you in advance :D :D
Hi Hollie, what help, if any, are you getting? When did mum last have a "Needs Assessment" from Social Services? When did SS last update your "Carers Allowance"? Life sounds very tough for you at the moment.
Hiya, I don't receive carers allowance for her and never have. As for the assessments from social services, they have happened in the past, with no real support. Mum says what people 'want' to hear, so no one gets the full picture.
Thank you for your reply xx
The only way you can get help is by having a Carer's Assessment. Make sure you contact Social Services and ask for one, then you can talk through how you are struggling.
I'm dealing with the same from my mum. She's still her but gets nasty and cries at everything. Has your mum improved at all over the years? The brain supposedly repairs itself but I haven't seen a huge amount of improvement in my mum. It's hard to deal with the anger and nastiness when you're the one doing everything for them
I also care for a mother with a brain injury. She sustained this injury when she was run over in 1984. Since then I have always been involved in her care in some way (I was 18 at the time) and my involvement has stepped up since my dad died 2 years ago.
While my mam does not get hostile, she has limited comprehension of the world around her and can do very little for herself although to the outside world she looks ok and intact. She becomes focused on certain subjects, can be morbid and insular, her friends rarely visit now. She gets anxious and upset about the smallest things and blows things out of all proportion - my sister and I regularly deal with various meltdowns. People don't understand as she looks ok.
I have my own family although my children are just about gone now, I am still managing to work full-time, my sister and I share caring. However I often feel resentful that my precious time off work has to be spent away from my family and then I feel so guilty. My mam was a lovely caring lady who would have done anything for me. I don't think she has any quality of life. I struggle with the impact this situation has on my own children and I try to protect them as much as possible.
At times this all feels really difficult and I know my mam has no insight into how this affects everyone else.
Jan, has your mum had a Needs Assessment from Social Services, and you, a Carers Assessment?
Yes - and it's been a battle. My mother is under 80 and is able to use a microwave so social services did not want to know initially. The fact that we have to cook all her meals and remind her to take things out of freezer on days we can't go had no bearing! There was difficulty obtaining recognition for the injuries resulting from her accident as she looks normal and is only in her 70's.
However we do have carers going in twice a week - from a charity providing respite for carers. This used to happen when my dad was alive and we are lucky this has continued.
Within the last few weeks we have been given 6 weeks respite per year - an absolute blessing!
There are good days and bad days - I am sure I am not alone in feeling this way - I feel guilt that I don't do more but I have a right to a life of my own too.
Feel proud for the support you ARE able to give mum, not guilt for what you can't. Caring should be a balance between competing needs, it's not right to give too much to one member of the family so others are left short. I seem to have spent most of the last 37 years trying to maintain a balance!
Hi guys,

I'm a carer for my son who has severe Autism. I'm also a brain injury survivor so I can comment from the other perspective.

In 2014 I was struck down by a very rare Neuro-Immune disease called ADEM (acute disseminated encephalomyelitis) I was in a coma for 3 weeks and awoke completely paralysed. ADEM is inflammation of the brain and spinal cord and damage to the myelin sheaths. Like a one time severe attack of MS. I have lesions in my brain and spinal cord.
I have physical and mental disabilities. I'm very very fortunate in that I have retained my personality and recognised everyone when I woke up.
Most of my brain and spinal cord were affected.

I now have many many problems including cognition, short term memory loss, anxiety, mood swings (it's like feeling the worst pmt you've ever had, every single day!) I have meltdowns now like my autistic son has. They're really bad. One minute you're feeling ok and the next there's just too much sensory input and your brain feels like it shuts down. I either get very angry and shout at people or I just end up in tears.
These episodes happen when too many things are happening all at once.
The first time I really noticed it was when I tried to cook a meal for my kids and hubby. I just couldn't handle the whole process and ended up shouting and swearing (I never usually swear) at my husband for the silliest thing. I think he chopped the peppers in a different way to what I usually do.
It's literally that simple. There was too much happening for my brain to handle.
Sound also affects me. Too many people, too many voices at the same time.

My husband has learnt to recognise when I'm getting upset and he gets me to sit down and stop pushing myself.
I could go on and on about the problems we have and how it affects us. If you want to ask questions please do. I've already lost my train of thought and can't remember what I was going to say next :-( annoying!

Lou x x