My Wife after Bacterial Meningitis

[Teameric]

HI

I am new to this forum. My wife suffered BM last December and nearly died, but pulled through physically. Since then she has spent around 5 months in 3 different hospitals before getting a place in May at a good rehab unit/care home specialising in neuro disorders. Problem is that she is still non-responsive although from time to time I feel there may just be the tiniest of signs of response, but am I kidding myself? After all this time I wonder what are the chances of some meaningful improvement.

[StrawberryCream]

Gosh I am so sorry to hear of the devastating impact of BM that your wife has suffered. I cannot answer your question and I think you have to seek answers to your questions from the rehab unit. They will know what responses they are getting from her and any signs of things improving. My best wishes to you too as the impact on you must be horrendous. Take care

[Teameric]

Thanks StrawberryCream. I think the unit are beginning to see some of the things I think I have seen. I spend far more time with her than anyone and so may be best placed to see any changes however small, but equally I am not trained as what to look for, plus I am biased and desperately want to see things. It scares me that I may be kind of imagining stuff. Yes the impact is pretty life changing, but I can't imagine what she is feeling and frankly it has been more so on her. From my still healthy position I sometimes feel guilty about feeling down or sorry for myself, but I just can't help it. I am finding this so hard.

[daffodil]

Hello -welcome to this forum -we are all here for you. So very sorry to hear about your wife's present state but please do not give up hope and please know that you can find emotional support from the folks on here, all who have suffered Meningitis or who have had experience of the devastation it causes.When you say your wife is non responsive,is she in a coma or awake but not responding?I read an excellent kindle book about a young woman who suffered a massive brain haemorage and was "locked in" - she was conscious but could not move,or speak but could hear.I will check the title and post it later.What was very hopeful was that she totally recovered,but only after she was diagnosed as having locked in syndrome and not massive brain damage.In the book I remember her husband and friends saying they though she smiled at comments,but no medical staff ever did.As you are with her more,you are the one she will be trying to teach out to,s don't give in and tell the staff.Obviously I only know what you have shared and am no medic,but do go with your gut feelings.I say from experience,having been in a coma with meningitis and septicaemia,that there are times when you can hear and feel touch(last senses to go) even when you are unable to move,see or speak.I remember my husband saying that I had a donor card at one point and being terrified that they wrer going to switch of my life support as I was still alive and could hear what was being said!!

Even if your wife isnot seeming to respond -do talk to her,play music and touch her-it may be the only thing that is keeping her holding on.I remember feeling so calm when a nurse stroked my brow and said I was doing grand.

It is good that she is receiving specialist care and I pray for her recovery and hope you can find support here-you can also email anyone on forum privately-just click the usename and it will take you to their profile.

[Teameric]

It is now nearly 10 mths on. She was in a coma for about 2 mths, but when transferred from Royal London was said to be in a vegetative state. I feel that whether her eyes are open or closed she has waking and sleeping times albeit a bit screwed up. In the former she can be persuaded or cajoled somehow to open her eyes. This is usually through physical touch or movement. I do all sorts from holding her hands, stroking her hair, arms, etc. to more rigorous movement in exercising her joints. However, I think I see on rare occasions that she opens her eyes to voice request though not instantly. Problem is that it is not consistent so I fear she may be about to open them anyway and I link that with my repeated requests to her out of my own desperation. There is also a difference that I see when she does have her eyes open in that the kind of default position is a blank stare to her left, but sometimes I can catch her attention it seems and her eyes will follow movement be that me, someone walking across the room or perhaps a video or something. Her eye movement and possible attention only come once she starts to blink which may take several seconds from when she opens her eyes. Her carers and the SALT assistant have told me they think she smiles at them sometimes and/or responds in some way to show them she does or does not like something. She is so different now from before and any movement or possible expression so tiny and obviously hard for her I cannot tell. I just hope.

[corps1]

I will never, ever feel sorry for myself again! My clash with viral meningitis was long but not as serious. Very best wishes to you and your wife. She really has a lovely, caring husband. I know what that means.

Corps

[legless7397]

My thoughts are with you and your wife, I had BM in 2006 and as a result had to have both legs amputated below the knee but I am now pretty much back to normal. All I can say is stay positive and talk to her, as I am sure that whe I was in a coma and the song from our wedding was played I was seen to cry so although I have no memory of this all the family witnessed it and something must get through.

Don't forget to look after yourself during this as you will be no good to her if you take poorly.

I am not religious but hope all turns out well for you both

Mick

[Teameric]

I appreciate the kind thoughts and yes I will stay positive. She is my lady and my life and I will do everything I can for her. I am certain that I do see some tiny things from time to time and am hanging on to the hope that for whatever reason she is doing these things now, it is something to work with to try and get her to do them when asked, etc. The biggest thing for me is that however small, these things are changes and changes for the better so I just have to find a way to help her along to the best she can achieve.

[greensleevesmaverick]

It took me well over a year to get back in the swing of things after having Bacterial Meningitis in 2007. I was given a 10% chance. It has been 6 years and I still feel like I need more improvement. I just keep on working at it.

[stagehand5]

Being someone who has bacterial meningitis it takes a while and everyone is different.I became ill over two years ago. I have been lucky I lost my hearing but was able to have a ear implant put on my left side to partially restore my hearing. I also have balancing problems due to hearing loss. So it might be a long road to go down but give your spouse the love and patience