I have joined this group for my mum who is 49 and had a brain aneurysm, which caused her to have a stroke. This happened almost six years ago which seems like a long time but it isn't for us as a family. She is left with short term memory loss, unable to work, loss of function in her arm and eye in one side which has lead to have full time carers when no family are home as she is seen as a vulnerable adult.
Having full time carers, we are not a critical family however we know that more is needed for my mum. The carer's are basically baby sitters and do not do anything with her.
I have been in touch with her social worker to try and change the care company however he wasn't very nice or much help and we have requested for another. I am looking to see if any one else has been in this situation, and can give any advice on what I can do? I am 21 and feel helpless.
I just want her to be the best she can be, if anyone has any recommendations for activities, excercises, anything to help her.
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annie1970x
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Please, please don't think me- in any way- unsympathetic, I'm really NOT but....I this 'Day and Age' you are, believe it or not, quite Lucky to have THIS level of Support.
However, and I speak from experience here, you Might be able to get a Grant, or an 'Ongoing' Payment, to, allow you, to Pay for your 'Own' Care Package. Until Sept 2016, when I moved into Supported Living, we (mum and I) had a Similar Support Package. I 'Employed' a 'Carer', who would Look After me and take me out (mind you I can walk unaided). Brian worked for EDPA (Essex Dis-abled Persons-Peoples-Association) and we employed him on an 'As Needed' basis. (Brian was actually a Very caring, and 'kind hearted' Gentleman who we Both liked a great deal. do I 'miss, him? Yes I Do, very much, in fact.)
Do you know where, your 'Local' Headway is- they are in most...If not ALL Counties. It might be worth while asking to, speak to, the Support Worker- for your area. (S)he will have, much better knowledge, of what 'Services' are available, to you both, where You live. Equally you could ask, to speak, to a Social Worker - however, my fear is, because you are NOT a 'Critical' case this might only be a 'Box Ticking' exercise. Never The Less, you would then be, officially On The Books- so to speak.
One 'Thing' I will ask, is this. You say that the Social Worker, that you DID speek to, 'Wasn't Very Nice' and I'm NOT making 'excuses' for them but....Could it not have been that you 'Expected' Too Much from an Overworked, maybe Stressed Out- Social Worker? Generously speaking....Everyone has Bad Days. Maybe an 'Second' approach, along the lines of 'We Could Do With Some More Help'? Can you/ Will you, at least, try? After all, you have 'nothing' to lose and maybe 'something' to gain.
I hope that I have given you, a few Ideas to think about/ ponder Annie. If, you want to contact me further, please do- either here or, if you want to, PM me. I know, that we ALL, send our Best Wishes. If it's not too early Merry Christmas Annie, to ALL your family.
Hi annie, my partner gets direct payments from our local county council, for care etc, it was the social worker who organised it for us. If she is entitled to a care package, then I would have thought she would be to some direct payments. Headway is also a great place to ask for help too. X
Hi Annie , I was totally unaware of surroundings after my SAH I was in dreamland. I was moved to a hospital nearer me in Kent, I was told I didn't get on with OT's so they told my Husband and Daughter to put me in a home. Instead hubs and daughter bought me home got things in place for me. I had carers 5 times a week. As I could do nothing. My Daughter used to give me therapy on my hand and I used to think she was young again and wanted me to squeeze her hand as in Days gone by. I had Hydrocephalus which was keeping me in this state of dreamland. Had a shunt fitted and my dogs were so pleased to see me. So I am telling you what happened to me. It might help or not but we are in there and we need to get out. Shunt did it for me and was told I'd never walk again but I can do things but at a slower pace..Walked 1 step at first hubby got me a zimmer frame and I got around the house slow but sure. Family sang to me ...Try anything for Mum as we do remember bits and we will be so thankful to our Loved ones ..So wishing you and Mum all the best and come on Mum you can do it xxxxx
I am sorry you have had to go through this and your family, wishing you all the recovery and health your way. Thank you for sharing your story it has helped me know that I’m not alone xxx
Hiya, Annies daughter I assume (who was born in 1970 - not U, Annie ;o).
I can't say a great deal other than welcome & U have come to the right place.
Mine was a car accident & I didn't receive my brain injury through having a stroke or anything similar, but U will find many have & can give first hand advice.
There is information in my profile re headway (who do have experience from those who have suffered), etc & maybe other things that may help & I do wish U and your mum all the best
Hi, my friend Andy had a traumatic brain injury in April this year. It has taken until now to get things sorted for him although I got him meals on wheels and his meds delivered after he came out of hospital. We now have a social worker, which he got through being referred by his doctor. The social worker is very nice and came to us to do a assessment for Andy. He cam manage to wash himself and eat so didn't manage to get on the list for extra care help from adult care but we have got through a company called Curo, 2 shopping visits with a support worker twice a month. They have different levels of support and Andy can pay for this through the Attendance Allowance he just got as he's over 65. You might be able to contact your local adult care services to see what they have to offer your Mum.
Also I asked on some community Facebook pages I'm on and some people in similar situations have come back with some good things which are going on, like day centres and activities. My friend has just started going to one on a Tuesday which he really enjoys. Also he can register to use the Community transport to get there and back when I can't take him.
You could ask at your library too and perhaps your leisure centre, also the Age U.K. website might have some local activities near to you.
Hi Annie. I've no experience of carers but if you phone the Headway helpline on Mon. they might have more information on carer organisations/agencies in your area. The tel.no. is 0808 800 2244 (free calls/office hours).
Good luck in finding better care for your mum m'dear. x
I'm in the slightly un-enviable position of having a mild ABI from 2003- (which effects short term memory - etc. but I have a brother who's been disabled from a massive ABI and is close to being a whole body tremor quadriplegic from 1991. He requires a lot of carers coming and going - along with family back up.
From all that time - we have never been able to find the perfect carer. In fact many of them are far from perfect. A lot of them go for the work because its seen as a bludge.
I'm from Australia - so I don't know what you can access - but Its possible your family - you're mum and perhaps the input of an OT working together to try and see what could be good activities for her - and then get on with the arduous and unfortunately chronic task of trying to get the carers to do it - which is always the challenge and the most confronting and frustrating job of all.
In our experience - they wont do anything unless they have too. Banning the use of mobile phones while they're caring has helped - it forces them become bored and to concentrate on why they're there.
As a ps. I know from both my brothers experience - and now mine - a daily excursion to do rehab physiotherapy (preferably in a group setting) - is one of the best - and simplest things we can do to get stimulation without overwhelming our brains. It also helps with circulation to the brain and does really stave off depression - which helps both of us cope with the limitations our injuries impose.
Good luck with it all. I know its a profoundly confronting process.
Speaking for myself - I suffer from - short term memory failing when multi - attending - ( along with a loss of other executive functions - and this can be neurologically overstimulating and exhausting - so its possible that not doing too much during the day isn't as bad as it looks from the outside.
I know all brain injuries and personalities are different, but for me - all it takes is a conversation to go on for too long and my mind is done for the day - and the best I can do is watch some simple TV or do some other basic things that - non brain injured people would find utterly boring - and from the outside seems like an utterly sub - standard existence. But sometimes It can be more than plenty for a damaged brain. (this is where a good OT could come in handy to assess all this)
I really only learnt this when I acquired my injury - as myself and several OTs spent years trying to get my brother to do more than watch TV - but he just obstinately refused - and I felt utterly guilty about him being stuck at home dong this for most of the day.
But now I have a better subjective understanding of why. Its a fine line of getting the balance of under stimulation and over stimulation right - and for him - this is all he could cope with.
Hi annieIt must be difficult for you trying to help your mum especially within the area of social care and brain injuries. As a mature lady I have experiences two severe head injuries and have found my local Headway group really accepting and understanding. I also found their newsletter helps with keeping upto date with news and events. This helps the person with acquired head injury and other existing difficulties; as well as their family and friends with information regarding brain injury and its effects.
I hope you have someone to confide in how you feel day to day to, it is important you have support to. Ring the Headway main telephone number and speak to the nurse, she is very knowledgeable regarding brain injuries and support etc around this area. Good luck and
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