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My Darling Linda


paul99

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i dont know where to start on the 28 aug my darling lin and my self were chatting and laughing on the setee when she sudenly put her hands to her head and screamed that her head and the pain then she folded onto me and was trembling then started fitting and vomiting. i was holding her then realized that something was wrong and dialled 999 the rapid response arrived in five mins and i suctioned her airway and got an oxygen mask on, then lost it and the ambulance man took over and i became a spare wasit and didnt know what to do and waited outside for the ambulance, which took 45 mins to arrive and they decided to get the hems in, to fly her to north staffordshre hospital 7 mins flying time... she was very ill when i kissed her goodbye and told her i would follow as quick as i could.

on arrival at the hospital i was able to see her before they took her to theatre, it was a very long wait and i saw her in the miu which was a type of critical care unit. i was left out in the cold all the surgeon would say was she was criticaly ill. i found out later that she had had a sah where the large artery on the right hand side of the brian had ruptured very badly and he didnt think she would live for the last two weeks.

i have been in limbo not being told was would happen and was never given any type of support, just left sitting there crying my eyes out, praying that she would wake up as i do love her so much and i feel so lost without her. its only this week i have been able or in the mood to seek and find help and what to expect and janet (Brain and Spine website) gave me your address so i am now asking for surport and if poss find out what i can.

expect im frightened that linda wont have a nice quailty of life or if she will remeber me or what it is now three weeks on. all drips and lines have been taken out except for the traciostomy which she still has with extra oxygen flowing. they have taken a large chunk of skull out and she looks awful. she has just opened her eyes but they are roaming sometimes she looks at me, but it looks like there is no one at home.

i spend all my time with her hoping she would wake up and smile but it just like watching paint dry, if you excuse my words i know it can take time, but how long. it is pulling me apart watching her suffer and not getting any response. what can i do to stop me going down so much. i hate myself for allowing her to suffer this way, i just wish i could change places because she didnt deserve this.

the biggest problem is that i have just retired as a paramedic after thirty years with the nhs. the scan shows the brain as grey the left hand side is light grey and the right is two shades darker, but involves the complete right side i know you dont offer medical advise but is there anyone who has gone through the same thing im sorry to go on so long but i hate myself for feeling like this

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A very warm welcome to you Paul, my heart goes out to you , reading your story. I cant begin to imagine how it must feel for you, God bless you. This webite and all the wonderful people here, have been a Godsend to me, helping me through my sah. There are also other carers here like yourself. You are not alone we are all here for you. Hang in there, thinking of you both, take care, Love Tinaxx

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Welcome Paul

My thoughts and prayers are with you at this difficult time. Reading your story is like listening to my husband - fortunately for me though my bleed wasn't so severe.

 

I can't help on the brain scan front, but I urge you to talk to her Doctors to explain the different shades of grey on her brain.

I can imagine that this is very scary and traumatic for you and that you are left in limbo. Don't give up hope though. It will be helping that you are spending time with Linda, even if she isn't aware of it, consistency and support are the best thing for her at the moment.

 

Like Tina, this site has been a godsend to me too and I have made some fantastic friends and been given a heap of valuable advice - I hope that you get the same and also Linda when she is well enough to see the site for herself.

Hang in there and we're always here for you both.

Take care

Sami xxx

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Hi Paul

Welcome to BTG glad you managed to get on. I hope you find that by reading some of the stories and experiences of the members that it will help you to understand more what Linda is going through at the moment.

Keep strong Paul, Linda will need all your love, support and strength as she starts to recover but remember to take care of yourself as well.

Keep in touch.

Janet x

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Hi - really sorry to hear your story; I am Elaine and my mum suffered a SAH In May of this year (you can read my story on this web site). My heart goes out to you as I know ecacly what you are feeling at the moment. My mum was 75 when she had hers in May this year and they gave her a very poor prognosis but she is battling back by the day and at home now after a 7 week spell in hospital.

 

Everyone's story seems to have its differences along with speed of recovery (how old is your wife)? It has been a very slow, traumatic journey over these last 5 months for her and me but just never ever give up hope although at times it will feel pretty hopeless. I can only explain it as a rollercoaster of emotions and events with I have to say more downs than ups but she has come through this and made me a much stronger person. I feel I could deal with anything now after this trauma. Try to look after yourself, eat and sleep which I know will be very hard but you must.

 

Keeping talking to her even though she may not appear to be "with you", god I talked some rubbish. My mum had a trache too for 5 weeks so communication was exasperating for both of us. It does take time, one day may be better and the next day may be poor but there is light at the end of the tunnel. Mum had other complications i.e. pneumonia and persistent vomiting so her recovery has been very limited (up until the last few days) that is. I will keep everything crossed for you and hope your wife makes a good recovery. Any more questions just ask.

Take Care and my thoughts are with you and Linda.

Elaine

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It may seem cataclysmic now with no hope at all, BUT please believe us when we say there is a road back for the majority of people, even from the situation you find yourself in now. It may be long and fraught but there is a road and it can be travelled on.

Scott

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thank you all so much for your comments it has made me feel very humble indeed and having read some of the stories i am horrifed and it makes me ashamed i have just got back from being with linda she has her eyes open but they are vacant and and that is the most disstresing part not getting a response

i caught the dr today and he is still being negitive which hurts he wont even answer my qustions all he keeps sayng is that it is up to linda now

 

and yes i talk to linda and now it seems to be a load of rubbish linda was a viavasious and vibrant and so active and stunning women that i never want to lose i dont want her to be a vegtable i want her back if not the same but close to it i have all the time in the world for her as when im in her company everything else burs into the fringes she does not only float my boat she has told me i float hers too

 

its this waiting and not being able to anything about it at the moment i see her sleeping and despite how many kiss's i give her she wont wake upor give me a sign she has heard me that hurts im back again in the morning just because i want to be with her and hold her hands and tell her how much i love her and how usless i feel without her here with me at home thank you so very much for being here for me xx

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Thinking of you today and in the weeks to come. I got little, if no response at all from mum for the first 5 weeks so it is early days. It's probaly too early but is she able to point to letters to communicate,; that was all I could do with my mum, some days I got the odd word spelt out. What is her favourite song she could listen to it maybe? You will get your strength from somewhere, I did and I was not particularly a person to cope easily before all this. It will be a long journey so try not to expect too much too soon, it will happen when she is ready..

Hope you find Linda a bit better today.

Elaine

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thank you everyone had a bad day today linda wasnt as reactive today sleeping most of the time still hurts but reading all the posts i have up to now has given me hope even htough its so hard but seing her lying there is what i cant take first couple of hours is hard but the renmainder of the time i cant shake the thought that she will remain like this that is what is distroying me

 

the fact that you are helping me is making me try to hold in there its the floppyness and th lack of response which is tearing me up we have no one friend wise we are totaly alone thank you ffor being here for linda and me thats all for tonight let you know tommorrow how she is she is listening to our song which means so so much to both of us islands in the stream dolly parton and kenny rogers and the other one is you make me whole again i think atomic kitten lin is 59 yers young and so beautifull thank you all again

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Paul, everyone here will recognise what Linda is experiencing at the minute ..... being sleepy is part and parcel of the trauma that's happened to the brain .... Sleepiness or fatigue is something that still plagues many of us that have recovered or are recovering from a SAH ..... When I was in hospital, I could barely keep my eyes open when anybody visited.

It will improve with time and it's still only a short time since she had the SAH ..... she'll know that you're there next to her ..... I seemed to doze off every couple of minutes or even seconds, but knew that people were around me, it was just so hard to stay awake. Probably the meds also have a lot to do with the initial sleepiness, but at least you know that she's resting and that the brain is having a chance to heal.

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Paul,

I completely agree with Karen, I used to fall asleep all the time when people visited. Even people that had spent ages trying to drive to the hospital were 'ignored' by me for lots of the time as I just slept all the time. I must say I'm very nearly 2 years on and the fatigue and tiredness is still pretty high. Before SAH, I had a lot of sleep but now I have even more and most nites leave Simon watching tv etc whilst I go to bed but hold in there Lin knows you are there and she will get stronger.

Try to make sure you look after yourself, it won't do you any good either if you get too run down. You need a little bit of time to recover yourself.

By the way, good choice of songs- i love both of them too!

Love and hugs

Laura

xx

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hi evryone another bad day linda still in coma i realized it when i went to kiss her there was no reaction at all from her eyes

but i still talk to her but run out of things after a while do just sit and hold her hands and just look into her eyes and pray that she comes round soon and listen to the records as they play telling her that i love her and want to get her to blackpool and scotland which we were to do this weekend already paid for and we were looking forwards to going

she looks so beautifull just wish would would move over so i could cuddle her and lay with her but i will hang in and hope things improve very soon still cant sleep just cat nap still walking around like a caged tiger that all for tonight thanks again for being here for me xx

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Paul,

I'm so sorry it was another bad night. I know its hard but hang in there, Lin will improve. You need to take time for yourself and if you are not sleeping go to the docs yourself. You need to be in a good condition to help Lin and getting no sleep won't help your welbeing.

Love and hugs

Laura

xx

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Hey Paul

The brain is a complex thing, my NS told me that sleep is the best thing to help the healing process. I know it is frustrating waiting and waiting for a change, anything at all that it positive. Each day is a day on the road to recovery....sending hugs to you and Linda xox

hugs

shiree

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Hi Paul

Warm welcome to the site glad you managed here.....

doctors told Ronnie it was up to me hes told me how frustrating and upsetting that was, all you can do is be there talk let Linda know your there.....

look after Yourself

Louise.x

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Hi Paul

So sorry to hear what you're going through but welcome to the site, it's a godsend to all of us that visit, both patients and carers. I have been in N Staffs twice, once for a SAH in September 2006 and then last year for treatment on a second aneurysm. Who is Lin's surgeon? Mine was/is Mr Howard Brydon, a genius in the brain surgery department but really hard to talk to and to get information from. However, all the staff at N Staffs (Ward 23, no doubt?) are absolutely brilliant, so dedicated, that she is in the best possible hands.

Thinking of you and trusting each day gets better. Stay strong.

Sarah x

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hi evryone

sarah lins under mr dias still havent seen him since lin was in the miu for two weeks and now as you say she is in ward 23 and the staff although short handed are great . i spent a lovley 6 hours with her today the staff gave me permission to stay i held her hands and talked to her all the time she had her eyes open and she looked at me quite eye to eye quite a bit but im not sure wether she regonized me or even was awake as her eyes also went down to the right side

 

she has stunning eyes and to be able to look into them reminded me of why i fell in love with her and why i love her so so very much still no movement as of yet but it dosnt stop me from moving her hands into mine and she dosnt stop me from twiddling her hair on the left hand side it used to do something to her :wink: i hope she remembers when she wakes up and brush her lips with my finger and lips just cant stop kissing her and i never will i would love to shove her over and get in and cuddle her i think i might be in for the long haul i really hope not does anyone know the answer to this question

 

i dont want to sound to pessimistic would the hospital allow me to nurse her at home with help from district nurses and they just have her on oxygen suppliment and a humidiefer and would they supply a bed with a ripple mattress to stop any sores occurring it is just somethng that has been going through my mind as they are contemplating moving her in about two weeks to stafford hosp but that is still up in the air for now i hope she wakes up by then i know it is hard work and very tiring but i think with surpport i think lin would be better and sleep and recover in her own bed at home

 

has anyone done this or had experinance of looking after their love ones at home your thoughts would be very much appreciated well im gong to try and go to sleep today was a beautifull day with lin and to see her eyes looking into mine has made my day just something else i thought of today linda had three wishs she wanted to do in her life one was to give up smokeing she only did 10 a day [now four weeks with out one] second she wanted to fly in a helicopter [she was asleep] thirdly she wanted to lose weight [not eaten for four weeks ] i suppose i will have to raise the money together for when she wakes up to take her on a helicopter ride just my luck im sorry for my rambling

 

i will say goodnight give to an update tommorrow thank you all again for being there for me you are really helping thanks

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Hi Paul I doubt they would let her come home the way she is sorry. God there was a few of us at that hospital then I was there too Sarah I saw Brydon but he didn't operate on me I had the same one as Lin Stay strong Paul she will get there sounds to me like she had a big bleed I was in hospital nearly a month for mine, however when I was ready to be transferred back to Stafford they let me come home instead so ask just in case. Jess.xxx

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My thoughts and love are with you both dear friend.Take each day as it comes being there for your lovely Linda but you must care foryourself too.You will need rest and meals Paul---wish I could help more but will give you my support here.Take care Paul just being there with your support and love is what your Linda needs at the moment----talk to her,encourage her and reassure her.

Carol

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