Hi all, first time here. Just looking for some advice and support really. My mum had a TBI on Xmas morning, my sister found her when going to pick her up for Xmas lunch. We were told on Boxing Day she was likely to pass away, but she didn’t. She hasn’t gained capacity since, and can’t talk, and is double incontinent. To say this has been heart breaking would be an understatement. We had to give up her flat, and my mum was a fiercely independent person prior to this. I am the next of kin and am visiting mum twice a week. Some days I can cope better than others. Tonight was a bad visit, I just felt hopeless. She was happy and content playing with her dolls it’s like she’s regressed to childhood. On top of this my mum was actually being tested for dementia so the doctors don’t know if the TBI or possible rapid dementia is the reason for her condition now.
Long story short, I’d like some advice on how to cope with this as I feel completely helpless and just devastated to the point I can’t function some days. I’ve tried to be strong, accept it is what it is etc but some days are impossible.
Thank you for reading.
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Reneroo
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Really sorry to hear this Reneroo, my mother is elderly, so I sort of understand how this must be for you, and how traumatic it must have been to happen at Christmas, as well as dealing with lockdown - it sounds very hard.
Welcome to the forum though, you'll find people very supportive here.
Do the medics have any idea why your mother fell in the first place?
You might find it helpful to ring the Headway helpline number in working hours for some knowledgeable support if you haven't already? It is 0808 800 2244.
I hope you will get some support here as well - keep posting and let us know how you are.
Hi, try not to over think things at this stage. Because they are testing doesn't mean that is the result.
Sadly a dementia type condition is possible, but this goes with any brain injury. One step at a time.
My dad had a level of regretion following a stroke, but I think that the care he received added to his problems (although at the time, the current care was appropriate).
From seeing him in hospital, to the man I met in the care home wasn't the same.
Deal with what is certain, not with what could be. I know how difficult this is, your mum will always be your mum.
This is a safe place to share your concerns, and I hope to give you some comfort.
Thanks for the response. They are no longer testing my mum because of this brain injury as they said they can’t diagnose without a memory test and given that my mum can’t talk and has very clear cognitive impairment, that isn’t going to happen. Just feels like she’s been written off a little bit without a true diagnosis but I know sometimes it’s impossible.
Sorry to hear about your dad, that must have been difficult. I agree care homes can make a loved one unrecognisable.
I'm sorry to hear this, no one should be written off whatever the prognosis. Everyone deserves the best quality of life.
I'd hope that care has improved since my dad's time, I didn't have any say in his care, that fell to my stepmother, who's standards were fairly basic.
Unfortunately due to distance I could not spend as much time as I would have wished with him. When he was well, he was a difficult man for me to like, but he deserved better. I was the last person he actually recognised and responded to. All too brief and too late.
Can empathise with do much of all that and my Mum had dementia and a fall. I wont beat about the bush, its a very rough ride for you watching from the outside.
The fact that your Mum survived when they didnt expect her too, shows she still has something...determination if nothing else. Take the small positives and try to use them to sustain you.
Sorry to hear about your mum, just awful. It is a very rough ride indeed with some ups but mostly downs if I’m honest.
I agree she seems determined given she survived, but it’s just no quality of life for her and if she were coherent she would tell us to get her out of that home. It’s hard to see the once independent woman I knew reduced to this. I know I’m not alone in going through this, it just hurts so bad, some days are ok, some not so much.
I will try to take the small positives as and when they happen and take comfort in the fact that hopefully mum doesn’t realise what’s actually going on.
I'm very sorry to hear your mum had an accident and has suffered a TBI. My mum had a head injury and it was not as bad as what happened to your mum. She hit her head on a tap when washing her hair (standing up, caught the back of her head on the tap, very nasty cut, lost blood, and called her best friend for help who heard her pass out and called an ambulance). Mum was in hosptial for a coupel of weeks and when she came home, I noticed very strange things. She thought it was not her house at one point. I took her to the GP. They did memory tests and concluded it was the head injury and it would take a while to get over it. The GP we had was very nice. Headway are brilliant so definately get in tought with them and read the pdfs andbooklets online or in hard copy. It took my mum at least 12 months to get more back to more normal. It's horrible to feel helpless when your close relatives have any sort of injury or serious health problem. Apart from the headway booklets, I can reccommend the book on post concussion syndrome and traumatic head injury by Dr Diane. drdiane.com She had head injuries herself. The book is very scientifice. I found a couple of the chapters (ch3 and 4) were easier to read as they were practical examples of the effects the head injury can have. Not sure how far you might be ableto use this, but I got Tina M Sullivan's book, Nourish your Noggin. Tina is a nutritionist and she took her own son to see Dr Diane who supplied diet sheets for her son. Tina decided to turn these into a cook book with inforation on food, spices, how these can help someone heal faster.. The diet is mediterranean in nature, low sugar... Maybe you could take your mum some of the smoothies in? Turmeric is one of the spices reccommended. I put that in stirr fries, and I made my mum smoothies. Cinnamon is another one... Even with a head injury that is not as bad as what happened to your mum, many patients get very tired... Headway will explain that. They have a booklet. Dolls or cuddly toys will make your mum feel more secure... Could you take her some photos in of the family? Maybe put them in an album and write who everyone is in them? Does your mum have favourite music?
Can you also keep an eye out if your mum is eating and drinking enough? Sometimes not getting enough hydraiton makes any sort of confusion worse.
Thank you so much for your reply and all of your advice. I’ll certainly look into these books.
Mum has some dolls and teddies, which she seems to enjoy. She is also surrounded by lots of photos which she spends a lot of time looking at, which is nice for her.
I’ll definitely try taking up some smoothies. I know she isn’t drinking as much water as she should and I’ve raised this a few time with the home.
We’ve also installed a radio in her room that’s tuned to smooth radio as she used to enjoy listening to that. When I go up I sometimes play some of her favourite songs too which she seems to enjoy.
Thank you again for your invaluable advice, this forum and everyone who has taken the time to respond to me has given me a much needed boost and I feel more positive about mums future.
One more tip to provide hydration: juicy fruit, grapes, oranges, clementines can encourage your mum to get some more fluids... Yoghurts too... A good friend of the family has dementia and I got her some platns for the garden, and for the house. A plant or flowers, somthing your mum can look at and smell, could help too.. .She knows all the names of the plants in her garden.
You are doing your best, and making sure she has things to look at and cuddle.
The brain is a complex thing, and it can really take time.
My dad was/is in a similar situation, he’s had a stroke and swelling on the brain due to covid. He’s in hospital waiting for a neuro rehab place, he’s now talking although his memory dips in and out, and he’s double incontinent. Hopefully that will improve once he can walk.
You should get the nurses to check your mum for a urine infection, my dad wasn’t drinking enough and wasn’t talking either.
It turned out he had a urine infection, since that cleared with antibiotics he’s so much better, talking and so much more aware.
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