Supporting family member: Hi there first post... - Headway

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Supporting family member


Hi there first post , looking for basic support tips for my mum, she unfortunately suffered from the condition known as Encephalitis we were told at the point of admittance the symptoms were so severe we could have lost her , she remained in hospital for 6 weeks and made a recovery from this brain infection, however the trauma left on the brain has changed her significantly , parts of her as we know her personality arent there anymore which is heart breaking, she also suffered a stroke early this year which she recovered from however , now her memory is poor at best and is becoming incresingly frustrated and upset as she is aware she is not the same she has lost her confidence.How is best to support when she gets like this? , i try to reassure and redirect at times but she still becomes upset, any experience in this aand how to rebuild confidence?

9 Replies

Hi there and welcome to the site which is a huge source of support and help. Your mum has had a major illness and , yes, if your brain 'breaks' it is not like a leg, it will not just heal exactly as it was. She has been discharged but she has not yet 'recovered' - she is simply past the life threatening, medical intervention stage. The next bit is trickier. We are changed by brain injury, sometimes in obvious ways, often invisibly, with almost all of us losing memory to a greater or lesser degree. She will be angry and upset about the changes but this is normal and understandable and it will pass. What you can do is let her know you love her and not ask her to be who she once was (she can't) or berate her for forgetting things ( not her fault) or laugh at her for being different - she is who she is. Accept and love her, on her terms and let her heal at her own pace. Good luck to you all

Hi sorry to hear about the rough patch your mums been through - personally My dad found it harder once dishchargedbback into his old life - but not the same person.

It's bound to be frustrating, imagine knowing your different but not knowing how - headway have been a massive support for us and after the first half forces visit dad said "they understand what I'm going through cause they are like me " and I think that's pretty big thing post injury is not knowing where you belong especially as a parent who all the sudden becomes the child.

Ask the gp for a neuro occupational therapist referral and a neuro psychology referral, if available in your area - one thing you will become is an advocate and unfortunately as family member you really have to fight for help post brain injury.

If you need any more advice shout up there's lots of experience on this forum 🙂

CarolineLD in reply to TBI2015

Hi just thought that I would mention that after being on the waiting list for almost two years I have now had two sessions with a Neuro-psychologist. Next he is going to test me and then give his 'verdict'! My son always sits in - I am on oxygen in bed so he comes to me. Will let you know...

Hi Vintage.

I too had encephalitis 5 years ago, I was in a coma for 3 weeks and in hospital and rehab for a total of 3 months.

I had to be taught to walk, feed myself, etc etc all over again. I lost myself totally.

It has been a long road to get to where I am today but the brain is a wonderful organ and if you put the work in you can reap the benefits.

My memory can still be a bit patchy, but there are ways round that.

My balance is not good at times and I also have visual problems which I have had help with from a specialised optometrist, the NHS said, yes you have some problems but basically go away and deal with it. The optometrist has given me exercises which I have to do daily to help with the vision and also the balance so it is up to me to do it if I want the improvements.

Encephalitis is a dreadful illness which a lot of people know nothing about, there are not many of us posting on here, it can leave one severely disabled/ affected by it, my consultant and doctors shook my hand when I was discharged, all were amazed at the recovery I made.

In Rehab, the consultant told me. Practice, practice, practice that is what is needed to lay down new neural pathways to compensate for the broken ones.

So, I have spent many hours/days doing jigsaws, paint by numbers, knitting, crocheting, tapestry, I make jewellery, all to improve my fine motor skills, I walk and swim on good days, I can now be trusted not to burn myself when cooking, and, the old me is back.

So, encouragement as you are doing with your mum is just what is required, find her hobbies to fill her time, when she needs to rest make sure she does, I slept for so long in the early days even when out of hospital and often an afternoon nap is in order now.

I even had to learn to write, and had forgotten all my PIN numbers, bank account details , phone numbers etc, so you see, with determination, support and encouragement your mum will improve but it will take time and patience. I have wept many tears of frustration.

I was 59 years old when this struck me and I am now 64. I had to leave paid employment and am now retired. I have regained my confidence travelling alone to places independently even though this scares my husband, but that is me.

So tell her to hang on in there, time truly is a great healer, but I'm afraid it will need input on her behalf.

Good luck and best wishes, come back to me whenever you need any support I will try my best to help.

Love Janet x


Hi welcome to the group, I'm sorry to hear about your mum she has been through so much. What no one tells you is that a person goes through so many emotions a feeling of confusion and an overwhelming feeling of loss. You have had some good advice on here and always will. There is so much support about, some times the hardest thing can be to find it. Headway can give you so much advice, but she would benefit from also seeing a therapist, and maybe get her linked to a group that can offer support and activities that can help with memory and confidence.

This is a great site not just for your mum but for yourself :-)

Hi again Vintage, have you joined the Encephalitis Society too, it costs nothing, but they have supporters and loads of information dedicated to this condition. When I was at a particularly low ebb one day I rang them and spoke to someone for well over half an hour, that person understood exactly what I was experiencing it really helped.

Janet x

Hello Vintage

I feel for your mum and you and herclose family members. I am just into a year after encephalitis and I still remember the confusion and frustration I felt after leaving hospital after a 5 week stay.

My greatest goal was to try to improve mymemory.I had always been the keeper of dates, family events , birthdays etc - all from memory and now that has gone. From having the best memory in the family and being ever so reliable ,overnight I went to the person in the family that you don't ask to do anything because I will simply forget. At one point in my early days of recovery I forgot where I lived and had to have a family member come and rescue me when I was out just going for a gentle stroll. The frustration and shame I felt was devastating.

The nasty thing about encephalitis is that it takes part of you away but also leaves major parts stillin place. So it is a bit hard to explain. On one level you know that you are still you but you also know that you are not the same. Emotions? Wow well they are well up there. Crying? Bucketfuls. On reflection a lot of my tears come from frustration and a sense of confusion. I say come (as in present tense) cos that confusion is to some degree still with me. But you do learn to adapt and accept and believe it or not improve - I promise.

I eventually decided after many tears to try tomake the best of what I had - at least I was still here and that was a megga bonus - I too like your mum had been very ill.

I still have bad days but a year on the good days outweigh the bad. Have read the other replies you have had and they are all good and full of wise and truthful words.I struggle to verbalise or write exactly what I am thinking but would like to point out that the important thing is that I try - and in time I hope to get better at it. So I am going to pinch what Janet has said "So tell her to hang on in there, time truly is a great healer, but I'm afraid it will need input on her behalf." I guess both Janet and I, like others, speak from experience.

Hope this helps, but please also remember do take care of you.



Welcome to the forum and I'm sorry to hear about your mum's problems. Apart from the tips from other members, I can offer one of mine. My mum got post concussion syndrome from an accident. She hit the back of her head very hard on a tap when washing her hair, so the brain hit onto the front part of her skull and it meant a frontal lobe injury too. She lost a lot of blood and fortunately, was able to call her friend who heard her say she was bleeding and pass out on the floor. Her friend called an ambulance. Mum had concussion and was disorientated. They let her out after 2 weeks when her memory score had improved but she was not right when I got her home. She did not know if was her house or which room was her bedroom, etc. Even months after the accident she came out with strange things. However, I googled around and found various websites including headway. One website mentioned a cook book, Tina M Sullivan, Nourish your Noggin. You can get it on amazon and similar. It's not expensive. She is a nutritionist whose son had PCS and was referred to Dr Diane Stoplert (see her website ) who uses diet to treat patients. Tina Sullivan decided to make a cook book using Dr Diane's advice. There are nice recipes in it too. Your mum can have some dark chocolate. Foods like avocado and eggs feed the brain. Raw organic coconut oil is also advised for cooking. Lauric acid in coconut oil has proved in studies to be beneficial for the brain and memory. She also mentions herbs and spices to help the brain and inflammation. eg ginger, tumeric, cumin. One favorite is smoothies with almond milk and fruits like berries. Use cinnamon instead of sugar to sweeten.

It can take a long time to see someone improve but I'm sure the diet can help your mum.

Keep her off too much sugar and too many bad fats like Palm Oil. It's in a lot of bought products.

One recipe you can try out would be something like a thai green curry. I make one with vegetables, coconut oil, fresh ginger and the thai curry paste from Tesco which I put into 200ml of coconut or almond milk. If I want it to have a thicker sauce, I add a couple of tablespoons of natural yogurt. You can easily make a huge pan of it and keep another portion for the next meal. My mum enjoys it.

Take care and hope your mum improves soon


I had encephalitis at the end of 2013 and spent several months in intensive cares, various hospitals and an neurological rehab unit. I am a different person in so many ways. Probably more than I even realise. But, I'm still me in the most important ways. It took me a long time to realise that though.

I have epilepsy now which is awful enough but my memory loss is the worst part of it all. I would give anything to have my memory back. I'll get a notification later on today if someone replies to this and I will have forgotten that I even wrote this and reading my post will be like reading it afresh for me. Its scary, its overwhelming and it takes a long time to come to terms with. I still get upset about it from time to time...its a horrible feeling to realise that you are meant to know something but have absolutely no idea what is happening. To be told about a conversation you had earlier that day, and not even remember seeing the person let alone the conversation...or to see photos of yourself and not remember where you were.

I find it very hard to deal with when someone without a brain injury tells me they have a bad memory or not to worry because my memory can't be worse than theirs. I know they don't mean any harm by it but it is so frustrating and it takes a lot of self control to tell them that not remembering where you put your keys is very different to not remembering where you live. I've only realised after all of this that I had no idea what a bad memory was before encephalitis.

I keep more notes than you could even imagine and have learnt to bluff my way through things a lot. I don't know the name of some of the people in my team at work, they just will not stick in my memory, and I (so far) have managed to hide that by being very careful in the words I use or the way I act.

I moved house about 18 months after coming out of neuro rehab and despite it only being a 15 min walk to the train station, I got lost every single morning and evening for about 6 months. Even with writing detailed directions down. It wasn't enough. Even now, I know my set route and that's it, if I took a detour from that I would be lost.

Memory loss is hard to explain and it's hard to deal with and I have found myself depressed about it many times - it's the thing I've found hardest to cope with over the last few years - like you said about your mum, you do lose your confidence and your sense of 'you'. I wish I could give you some magic tips, I really do, but for me it's just been time that has gained me a bit of confidence again and has helped me come to terms with it as much as possible. I hope that'll continue to get better but we'll see. I do understand what you are going through and am more than happy to help you/your mum as much as I can x

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