Bacterial meningitis

[Samanthamaryjane]

My mum has been in hospital since boxing day. She was in Intensive care but is now on a ward since Friday. Physically she is getting stronger but her mental health is really worrying me. Her personality has completely changed. She keeps saying strange things like she needs to get out as the nurses make her climb the walls while the building folds up. She has no emotion. Her memory seems fine and she knows who we are. The doctors just say it is early days but I can't help but worry as I really miss my mum and worry she will never be the same again. Is this normal?

[StrawberryCream]

Hi Samantha

Welcome to this site. You have found a good place to express your concerns, seek support and get helpful info about meningitis from those who have suffered it themselves or care from others who have. You will also find that Meningitis Now is also a really helpful organisation and there website has lots of helpful info and you can contact them and they will send you any relevant booklets/info sheets. Plus the helpline is great if you have anything you want to ask or discuss and offer great emotional support.

It really is extremely early days with your mums recovery and you have to be very very patient with your mums recovery. It is far too early to know whether or not she will have any long term effects from the BM as her recovery will be months at the least but could go far longer than that. Her confusion and lack of emotion will be because she has had a very serious BM infection and her brain and body will still be in the very early stages of recovering from it. It is not like a cold or flu for example were you get over it in a couple of weeks and even when the infection has gone and she no longer needs hospital treatment her recovery will still be continuing after discharge.

It is so lovely to read your post clearly expressing your love and concern for your mum. It must have been a very traumatic time for you when she was in intensive care and even now it is still a very upsetting and fearful time to see her behaving so unlike the mum that you knew and wondering whether that lovely mum will ever fully come back. The best you can do is continue to be there for her, to accept and love her for how she is each day but see every little positive improvement however minute it may be. There will be further recovery but it does take time.

Very best wishes to you and your mum x

[Samanthamaryjane in reply to StrawberryCream]

Thank you so much for your comment. It has definitely helped. I have now realised it will take a long time. Tonight she seemed slightly more like mum so I was pleased. Thanks.

[YWurri]

Hi Samantha, so sorry to hear about your Mum.

I was in intensive care with bacterial meningitis this time last year. I lost my short and long-term memory, and was hallucinating (I thought the nurses were robots, and that the walls of the hospital were foldable too! Almost like being in a computer game, but it's hard to describe).

At my de-brief in the summer, the ICU sister said it was because I still had slight swelling of the brain, and the cocktail of drugs would have made me see things too.

It was all very scary, but after 7 days in ICU and 7 days on a ward, I was able to go home (I was in a rush, as before slipping into a menigitis coma, I'd just given birth !).

It is very early days for your Mum, you just have to be patient for now. I looked back and laughed at some of the silly things I said/did when I was in hospital, but it must have been so scary for my family and friends to see.

Wishing your Mum a speedy recovery x

[Samanthamaryjane in reply to YWurri]

Thank you. That has helped a lot. Hopefully we will laugh about it one day. It must have been awful going through all that after giving birth. Glad you are well now.

[YWurri]

You should notice improvements every day now, it will get better. I'm sure you're doing this anyway, but hold your Mum's hand and give her lots of hugs. She will be frightened and need reassurance.

Do try to get some sleep and look after yourself too; you must be in shock.

[ignoreit]

I was POSITIVE that there was a movie projector (this was 1977 & I was 33 yrs old) behind my bed (I was paralized) that was continuously showing snow skiers skiing down the wall in front of me. Somehow I knew there weren't skiers in my hospital room (ICU) but I thought all the doctors & nurses were actors. I knew I was in horrific pain (of course) but I thought my hospital room was in a movie trailer. This is interesting because I've never been on a movie set! I didn't tell any of my visitors that I "knew this wasn't an actual hospital"...but I thought THEY had been fooled.

I remember being impressed that the movie trailer fooled so many people into thinking I was in an actual hospital.

Yes, nutty, nutty, nutty! It was 3-4 weeks before I understood reality.

[PMaz1970]

Hi. You have found a great site for comments and help. My father had BM a year and a half ago, and I was extremely unfamiliar with the disease and it's effect on the loved one's brain. My father was old, but in relatively decent health when the disease hit. It did a number on him. I will never forget the coma he was in for 3 days, and the worry of losing him. There was a recovery when he came out of the coma. BM did affect his mind after the coma, and he did alot of non normal things he never used to do before BM. This included being sensative to touch of people, sensativity to light. Another thing I will never forget was when we were speaking in his room after the coma, and he asked "who is the little boy sitting behind me?". There was no little boy behind me. BM definitely affect the mind and brain.

The best advise I can give is what has already been stated. Be patient. It may or may not be a longer term recovery. Check in here for advise, as there is a vast amount of knowledge here. I wish you the best!

[gb93616]

As everyone has said, it takes time. I was absolutely convinced the medical staff were trying to kill me a few days after I was conscious after being in a coma due to meningitis. Once I felt a bit more human I did tell a nurse, however, I knew they weren't trying to kill me by then, but at the time I thought it was real. For me, recovery was slow, but in some ways, as I was "out of my head" it wasn't scary so much. I couldn't string sentences together, couldn't remember the names of things, including my Wife. I knew who she was, but called her "the lady". I also called my daughter my sister, which she has never forgiven me for I still don't know to this day why I told a nurse she was my sister. I always try to explain as it I was looking through my eyes, but nothing was going on in my brain, which maybe sounds a bit weird, but that's how I remember it. I could see and hear things, but couldn't process anything. I could read words on a page, but couldn't make sense of a sentence.

Every case is no doubt different, but I was in a coma for a week, in hospital for 3 weeks and I guess took me a good 6 months to appear "mentally" normal to most people...

I can understand the "movie trailer" comment above it really wasn't "me" in that hospital bed and I was never aware (and never asked, it never occurred to me to ask either) why I was in hospital and what was wrong with me. Family were told not to tell me unless I asked.

I hope things continue to improve..

Graham

[martinspiller]

10 years ago I was just out of hospital with the same thing. I know that when I regained consciousness the medics asked me questions like "Do you know who the Prime Minister is?" to check I was ok in that area. Thankfully I was, though I remained easily tired and confused for a long time, as well as physically very weak and with changes to my hearing and sense of taste. I also had really hallucinatory dreams. It looks as if every case is different - it all depends on which bits of the brain were worst affected, and how badly.

The positive thing is that with time the brain does more or less rewire itself, so that there will be small daily improvements (and some setbacks) but you must think of this as a journey of months, not days; it was almost a year before I felt strong again, and even then there would be days when I wasn't right or would have sudden weakness, mental or physical. of course, I can't predict what your mother's case will be like, but she's survived a really serious attack on the brain, so the strength is there. Time will help, and you'll need to be patient and strong yourself, and when she seems weird remember it's the illness talking, not her. Time was, people would have said it was a demon possessing her, and you can see why. Oh, and you'll all need a sense of humour!

Martin

[maineknitter]

I had BM, bacterial meningitis, in September 2011. I was in a isolation room, couldn't figure out why there was an airplane next to my room trying to take off. Sure made it hard to sleep. Now, I know that's the air filter that kept my air from the rest of the hospital to protect everyone else.

Then there was the constant migraine that didn't stop until I got put on abortives and other drugs in February of 2012. The neurologist looking after me said, there's lots of healing in the first six months, then less but still gainful healing in the second six months, less still in the third six months, and hardly any in the fourth six months and beyond. At first readings were out of the question. All I did when I came home was sleep and eat and rest on the couch. The curtains were always drawn because that diffused the light to a tolerable level. No tv or radio. Just people talking was enough to wear me out.

I returned to work near the beginning of October 2011. Big mistake. The noise didn't help my head, and having to be "on" for others took a lot of effort. By the end of November 2011, I quit working. I ended up back in the hospital for a migraine of 48 days that January or maybe that was the next one. Both the first two January's were in the hospital for migraine unresponsive to medication. They are blurry in my head. Anyways, now I still get migraines about 66% of the time. I take prevention medicine and abortives to stop in progress migraines. But still find it hard to do stuff. I can do some chores some of the time, I can read sometimes. I have tried to go back to school and if the class has more than a few books, I have had to drop it because I just can't read that fast. It's frustrating not tobe able to define mmyself as I used to.

For your mom. She's going through a tough time with her brain having swollen up and pressed against the skull. This crushed the executive processing branch of the brain. So she's likely experiencing things altered from reality, maybe even knowing that she's hallucinating, but unable to connect what her brain is saying with what her senses are saying and getting freaked out and confused.

My advice. Be a source of warmth and support for your mom. Ask her what she thinks about the walls folding etc. Get at her emotions, which are highly complex things in brains. Encourage her to share how she feels, what she's experienced since you last saw her. Ask who the ni center nurses or funny ones are. Humor was hard to understand, but I still had a kind of sense of humor. Give her chances to express control. I felt so lost and out of control. What does she want to eat? Don't make assumptions unless she gives permission for them. Which pair of socks or color johnny does she want today? Choices give sense of control. Does she want a night light to help her orient to the room when she wakes in the night? It might help lessen the night mares.

[maineknitter]

I had BM, bacterial meningitis, in September 2011. I was in a isolation room, couldn't figure out why there was an airplane next to my room trying to take off. Sure made it hard to sleep. Now, I know that's the air filter that kept my air from the rest of the hospital to protect everyone else.

Then there was the constant migraine that didn't stop until I got put on abortives and other drugs in February of 2012. The neurologist looking after me said, there's lots of healing in the first six months, then less but still gainful healing in the second six months, less still in the third six months, and hardly any in the fourth six months and beyond. At first readings were out of the question. All I did when I came home was sleep and eat and rest on the couch. The curtains were always drawn because that diffused the light to a tolerable level. No tv or radio. Just people talking was enough to wear me out.

I returned to work near the beginning of October 2011. Big mistake. The noise didn't help my head, and having to be "on" for others took a lot of effort. By the end of November 2011, I quit working. I ended up back in the hospital for a migraine of 48 days that January or maybe that was the next one. Both the first two January's were in the hospital for migraine unresponsive to medication. They are blurry in my head. Anyways, now I still get migraines about 66% of the time. I take prevention medicine and abortives to stop in progress migraines. But still find it hard to do stuff. I can do some chores some of the time, I can read sometimes. I have tried to go back to school and if the class has more than a few books, I have had to drop it because I just can't read that fast. It's frustrating not tobe able to define mmyself as I used to.

For your mom. She's going through a tough time with her brain having swollen up and pressed against the skull. This crushed the executive processing branch of the brain. So she's likely experiencing things altered from reality, maybe even knowing that she's hallucinating, but unable to connect what her brain is saying with what her senses are saying and getting freaked out and confused.

My advice. Be a source of warmth and support for your mom. Ask her what she thinks about the walls folding etc. Get at her emotions, which are highly complex things in brains. Encourage her to share how she feels, what she's experienced since you last saw her. Ask who the ni center nurses or funny ones are. Humor was hard to understand, but I still had a kind of sense of humor. Give her chances to express control. I felt so lost and out of control. What does she want to eat? Don't make assumptions unless she gives permission for them. Which pair of socks or color johnny does she want today? Choices give sense of control. Does she want a night light to help her orient to the room when she wakes in the night? It might help lessen the night mares.

[daffodil]

Hi Samantha,So sorry to hear about your Mum,s Meningitis but glad you have found us for support.I am coming up to the anniveversary of my own meningitis and septicaemia,in Jan 2008,so your Mums experience does bring it all back.Re the hallucinations,the others posters are right to say don't worry.They are a combination of the life threatening disease and the drugs,especially the withdrawal of the drugs used to put you into a coma and the antibiotics.I too had horrid horrid hallucinations and was very very frightened.I could hear only but couldn't see at all for the 8 days I was in ITU,but my huge fear was that I heard my ex husband say I had an organ donor card and I thought they were going to switch off the life support! I am not sure I knew where I was at all but could hear the ventilator and all the beeps,so my brain was saying I must be in hospital.My bed was revolving and the floor would open up and something evil would grasp my hand and I was being pulled into a dungeon with lots of tea lights around! All the time I was thinking this is so strange as I didn't know the hospital had opening floors and dungeons underneath! It was very very fightening and I was really scared.Once out of ITU I then was seeing people just pop through the walls and windows and every time I closed my eyes y bed would float up and jam itself to the wall or ceiling,so I though I would slide out of bed.I was so terrified that one of the nurses called in the doctor who explained they were hallucinations and what I was having was "a trip".All I can say is it was horrific at the time but now seems funny as the nurses kept telling me my bed was very firmly on the ground,but I didn't want to close my eyes as Id float away.I also floated in my bed all round Aberdeen and to Edinburgh and imagined that there were no beds in Aberdeen so a nurse was wheeling me along the motorway to Glasgow.

Although these experiences are normal,they can go on for many months afterwards.I was fully 6 months having these hallucinatins and flashbacks and eventually was sedated with sleeping pills to help me sleep.So keep an eye and ear open for your Mum,as others have wisely advised.I benefited greatly from the Meningitis Now helpline and also had telephone counselling which helped me to deal with the trauma and make sense of what had happened.I had a huge need to talk about it -flying beds,revolving beds and openi ng floors and I got very upset when people laughed,as for me the experience was real .The part of my brain which has been damaged is the cerebellum which is the area of balance and memory,and so it seem to tie up with my side effects of loss of balance and memory.Loss of balance and a feeling of the walls breathing and tilting and the floor coming up to meet me was the first strange symptom of Meningitis.

As the others have said,your Mum is in very early days and the recovery will be long.Depending on how strong she was before M. and her age also,but everyone takes their own time.She is lucky to have you by her side and her recovery ( whether to pre M or not) will be aided by knowing others are there for her.I know all I wanted was to get home from hospital to see my children,so I persuaded the doctor to let me go home (after a month in hospital)instead of to a rehab unit -very big mistake,so if there is suggestion of rehab then please take all the help you can,as once out of hospital that's it.

Personality can change - I became very much less anxious with money and having previously always saved for a rainy day,I decided that I may not reach another rainy day.I unfortunately added to my problems by running up a huge bill on ebay on things I didn't need.Again this was attributed to a lack of normal inhibition.These are all things to look out for as there is help there if you recognise that there has been brain injury.Strawberry cream pointed me to a braininjury sight -Headway - and there is lots of info there which Meningitis survivors can definitely relate to.I also became depressed and anxious about going out and without the help of MN counsellor I would not be here.

Sorry what a rant,but just to let you know there are many here who can identify with you and your Mums experiences.Please keep us posted on you mums progress.

[legless7397]

I can completely empathise with you, nearly 9 years ago I was in the same situation and can vividly remember have extremely strange feelings, mine included the doctors were pimping out the female patients, the Germans were attacking the hospital, I though I was in a completely different hospital and as far as emotions although I have very little memory of them but have been told that at the time I was told that I would be loosing both legs below the knee I became very upset but soon after just seemed to accept my fate and move on.

Each of us are different and all of us deal with things in our own way, all I would say is be as supportive as you can be without overstepping the mark, my strategy on leaving hospital was if I can do it myself I will do and if I cannot I will ask for help, it is very difficult for family and friends to understand that you have been through a major trauma and need to be given the time to regain your independence.

I returned to work after 11 months on a phased return and it took about 3 years before I could get back to full time hours. I now have a more carefree outlook on life and live very much for the day as you never know what is going to happen.

I sincerely hope all goes well for you and your mum, stay strong and be as positive as you can be it may take a while but things will get better

[Lorna26]

Hello there, I am so sorry to hear about your Mum the speediest of recoveries. I had BM 2.5 years ago and have to say, I went through a week where I may have been quite like your Mum. I was very poorly, looking back on it, I wouldn't have known what day it was, whether night was day, day was night etc - it was all a blur, I was on masses of meds and could certainly not sleep much for the discomfort etc. Anyway, I remember watching, almost every hour, these big cracks forming up and down the hospital wall in front of me. They would magically disappear, and another time I would watch them re-appear, and the paint, would appear to 'peel back' from the walls... Eugh, it was quite ugly and creepy, and sometimes I would be alone and in the dark as I could watch this happening, but I was 34 and just kept it all to myself. Until now!!!!!!! I didn't like frightening my parents any more than I think they already were and just kind of assumed I was hallucinating as I was on that many meds. To be honest, no wonder anyone acts and sees things that are not normal! I didn't that this was actually a relatively common (from this thread anyway) side effect of the situation and drugs... I do look back now and chuckle. What a state I must have been in, and though its been a long road, and in fairness, not one I would wish for anyone, your Mum will get there. Please just be there for her, and look out for her, help her with whatever she needs. My family were for me, and I can honestly say, if they had not been, I don't know where I'd have been, as I was just too much at times to handle for the stretched nurses - ie - when I needed pain relief, I really needed it - NOT 2 hrs later, when they would give me it, so you being a person who can do that chasing around etc for her, is gold for her.

So Samantha...what I am trying to say is that this is just part of the process. It will be frightening to see your Mum so poorly. I often also remember thinking, though I felt like death inwardly, I actually thought it was probably worse for my family as they were more aware of what was happening and how I looked. I just had to 'feel' it, but they had to witness it, which can be more traumatic. So look after yourself too, I'm sure she is in good hands. My neurologist was amazing! Still is And know that I'm sure everything she is going through is part of the course.

Wishing her as speedy recovery a recovery as possible, and all the best to you too.

Lorna xx

[Samanthamaryjane]

Thank you very much for all your experiences. It has really helped me. I am pleased to say mentally mum is a lot better apart from being fed up and her eye sight and hearing are improving. At the moment she can't move her left leg at all and can't move her right arm much. She is having a body scan tomorrow. Thanks again.

[Jeffery]

Hello, This is really early on in her recovery. Having said that I recall some very vivid sights and sounds when I was coming out of a coma into consciousness so maybe just keep presenting her with reality. I underwent some personality changes and had distancing from my daughter. I think that she was really rocked by my illness and unable to cope with it all at the time. We talk a bit now but it is 4 years post Bac. Men. I did change. Something about almost dying that makes you rethink your life. Your Mom needs your support so there is a role reversal going on. Best Wishes and Kind Regards, Jeffery