Hello, im new and i am looking for any and all advice i can get as to help for my mum. She has a Severe TBI and retrograde amnesia and is having seizures which are making everything worse. we have been waiting a month now for an MRI appt which will happen next week. Mum is very muddled and confused and verbally not very responsive. More often than not she is staring off into space. when she does speak she believes its 33 years ago and is asking for her ex. I have been told to stay away from mum after an incident where she attempted to wander and i prevented it, leaving mum incredibly agitated , anxious and angry, and trying all sorts of methods to try and escape including through a window. Because anxiety is a trigger for seizures all items or people that cause anxiety have been removed from mums life. my step dad is now her only source of care at the moment. The issue we have is that my step dad has to work, and he will go back to work in 2 days. Social services are limited in their ability to help until mum has a formal diagnosis and we know exactly what has been affected in her brain. The GP has advised mum can be left alone for long periods of time if my step dad phones her every hour. only issue is, even if my step dad is in the house mum will pack her bags and attempt to leave believing she doesn't live there and he has a job to stop her. Apart from a carer coming in to help mum with her dinner we are in a situation where she will be alone for 4 or more hours where there will be no supervision and will be left to leave the house of her own accord. We all know that mums 'wandering' impulse is very strong, but we are powerless. does anyone have suggestions? this will be very greatly appreciated.
Please Help Amnesia, Brain Injury and wandering. - Headway
Please Help Amnesia, Brain Injury and wandering.
Hi, sorry I don't have magic answers...have you spoken to community neuro rehab team ? Doesn't sound like yr mum is ready to be on her own to me.
I hope someone has some better ideas for you....good luck!
Hi Kestra . Welcome
Does your mum live on the area where she grew up? If so then I would suggest letting local shopkeepers know that if they find her to ring your step dad.
Short term get something like an SOS bracelet with the relevant details inside.
Ring the Headway helpline and chat with them. The details are in a pinned post on this page.
Also let the local police know the situation.
Please try not to worry. I know that is so much easier said than done. I managed to lose my mother in law (who had Alzheimer's) in a strange town while we were both taking a comfort break and I was talking to her and she was replying.
Only the father in law assuring me that he had lost her a number of times helped me at all.
Hoping you get answers soon.
Love n hugs
Xoxo
kez i used to work with people with dimentia before my abi. when she was married before do you know where she live? because she will more than likely go there.
welcome to your online family
goodluck
steve
Hi Kestral. Can you tell us how long ago your mum sustained her TBI, and the details of her hospital care ? x
mum had 3 falls and 2 fits 4 weeks ago, and had a further chronic tonic fit i think they called it 2 weeks ago. for the original falls she was in hospital for a week, it took 4 days for mum to come round properly, but she had no idea what was going on, she thought she was at hospital to work and she isn't a medical professional, they released her due to her trying to leave the ward too many times. She had 3CT scans that were all clear but the Nuro Psyc drs decided that they didn't want mum to have an MRI or further assessments until the swelling had had a chance to go down. so it will be 5 weeks by the time she has her MRI. The fit two weeks ago is under investigation for unfair and unsafe discharge after they sent mum home from hospital the day she was admitted. Mum was so asleep we had a job waking her up to get her home. it took us almost 4 hours to wake her and get her dressed, then there were issue with the fact mum couldn't walk and her nerves had her whole body jerking so badly we needed to give her a sippy cup to drink from. she slept for 2 days solid after this last fit. She was also sent home with no care package in place. so all care has been provided by either my stepdad, or myself when he is at work. well it was, i can't help any more.
Sorry for delay Kes, I've just got home after having an MRI myself.
The treatment your mum has received sounds like straightforward neglect. When I was in hospital after having a haemorrhage coiled, there was a young woman who roamed the wards for 6 weeks shouting to be let out and crying for her young children. She'd had severe brain injuries and invasive surgery so was distressed and confused, but there was a nurse assigned to follow her everywhere she went to keep her safe.
And this lady's issue was explained to all other patients so we understood the reasons for her behaviour. That's obviously the extreme opposite of the treatment you mum received and it's appalling that she's been denied the care she so badly needs.
It could be weeks or months before any investigation is resolved and your mum should NOT be left alone whilst at risk of further seizures and in such a confused state. She needs 24 hour care in a safe environment, preferably a hospital or otherwise in temporary care.
Please phone the Headway helpline for advice on this (urgent) matter. The no is 0808 800 2244 (office hours & free call). They have knowledge of, and access to, many more resources then we have here on the forum.
Best wishes Kes for finding a much more satisfactory quality of care for your mum. Cat x
Morning Kestral,
My heart and prayers go out to you. Im not sure really what to suggest but to call your local headway and chat to them about the situation. Try and have a positive day. Nick Xx
I have spoken to headway and as a result have raised a safeguarding concern over mum. If social services wont do anything. We have to take mum back to a and e and tell them we cant keep her safe.
Hi Kestral, Jules here
My husband and I nearly went through the same type of thing with his mum, but she passed away.
So sorry to read your posts, you and your family must be going through hell.
Are you saying you have to take your own mum to A&E and say you cant keep her safe !
What is the Safeguarding ?
Kind regards
Jules
x
think child protection, but for adults.
Child Protection is now under one umbrella term of safeguarding
I hope Social services take a very dim view of your mum's lack of treatment and put together a realistic care plan. I think the plan to take this poor lady back to A&E if all else fails is the best option and, if it comes to that I'd be very interested to hear what they make of this appalling situation.
I really feel for you all Kes & hope you'll find the care for your mum that she deserves. xx
social services will be throwing their weight behind my complaint that will go to the hospital. They are in total agreement that this is an outrageous situation that shouldn't have been allowed to get this far
Hi Kestral, sorry I am late replying but I have been away. Your mum's brain may well recover some of it's functioning, it is very early days. my husband was very like her when he was first injured but it comes back gradually. Try your local Mental Health team, see if they can suggest anything to help in the meantime. Sorry not to be more help.
Jan
after 5 hours on the phone yesterday, we got as far as not being able to push her appointments any further forward. social services trying to find respite for mum, but that might not be til tuesday at the earliest, and my step dad has had to take another 2 days unpaid leave to care for mum. He is getting seriously burnt out, but he will hang in until they tell him if she has a spot for respite. I have spoken to the patients association to ask their advice, and stunned the woman on the phone as she had never heard of negligence and unsafe discharge like this in all her 20 years doing job roles around the NHS. She has reported it to the CQC.
If mum goes into respite, it will cover the period for her MRI which is the 13th and her Neuropsychology appt on the 21st. Social services have a plan to put in place once mum has a formal diagnosis, but can't implement anything until then. so we are stuck falling though the gaps of everything.
our advice from several corners has been if it becomes too much, the last option is to take her to A and E, explain the situation and leave her in their care. The hospital failed to have mum assessed by the hospital social worker, and a care plan put in place, so they discharged her under unsafe conditions and even though we kept saying we didn't think taking her was a good idea but they kept insisting the dr says it was fine. yesterday i learnt we could have refused to take her.
my brother has taken mum out for a couple of hours today, and she seems to have responded to this very well, coming back to herself a little. but as soon as she got home he could see what i like to call the little switch go off, and mum changed. she is seeing people that are not there, and can't remember whats going on loosing concentration and staring off into space. We just need to wait for the diagnosis and cope in the meantime.
safeguarding, and a section 42 isn't an option as mum isn't a danger to others
thank you to everyone for the advice and stories it really does help to know that others have experienced this too xx
You mums trying to reconnect the memories I have been in her shoes it's awfully I stole my own car I should not have even been driving this was 2 in the morning I did make it 'home' which would have been 45 min drive took me 4 hours did not knock on the door thank God' they had moved 10 years ago oops when i did get home found that the police had put out a nationwide hunt for me which i found amsing because i passed five police cars on my journey .they did look at me with pitty
I found photographs where really helpful to some extent I also used to go round the house pulling all the cupboards out looking for stuff I didn't care about anyone else I could not help it is just had this urge to know it took a few months to calm down but life gets better' get as much help as you can retrograde amnesia is a scary thing I lost a large chuck right back to childhood looking in the mirror in the hospital for the first time was a surreal experience I wound not wish on anyone no i didnt get those memory's back just chunk of immages I live with that now if I lose something I now spring clean because I put stuff in safe places don't ask xxx
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