Hello

[KelBel]

Hi Ash, and welcome.

Good luck for your mums recovery.

I hope you can keep letting us know how your mum is getting on, and you can gain some comfort from the kind words and thoughts of everyone on this site.

Glad you found the site and have been able to post your mums story and your worries on here. There is always someone who can help with advice.

Best of luck for you, your mum and the rest of your family

Kel x

[Ash]

Hi again.. sorry i didn't post for a couple of days but been a bit tired out so trying to get a few early nights in!

Mum is a bit better, and today had a trachiostomy which i think went well. She certainly looks more comfortable without that ruddy great tube going into her mouth. She's still recovering slowly neurogically but hopefully things will start to improve. Her chest infection is a bit better too and she's coughing less so that's good.

It's been a tiring week but she's hanging in there and fighting. I'd love to start seeing a little more movement in arms or fingers/legs but we have to be patient i guess. The ventilator is now on a very low setting and they said they may try to sit her up properly tomorrow which will be something. It's still a very long road ahead but we're taking things one day at a time.

My dad's now got a chest infection so i'm trying to keep him away from the hospital and my mum..easier said than done lol. I'm doing ok, eating well, but still in a bit of a daze at times that this has actually happened. Hope you're all doing well too.. Ash

[paul99]

ash

that dazed feeling will eventually go but not for a while and proberly not until mum is in a normal ward and even then your still going to have days where dazed takes over and you go into zombie state i got the tee shirt yes the endotracial tube is a night mare they gave mum a traci to enable the chest to be cleaned and the phyiso's to get any muck up with the suction machine the tube was removed to prevent damage to the vocal cords and is only meant for short term use because of the damage it can cause i know what you mean about dad but its important to keep away mum wouldn't be happy take care ash love to all

[Tina]

Hi Ash...glad your Mum is a bit better...sorry your Dad not well....hope you are ok...you must be exhausted with all the worry....please take care .Tina xx

[Vivien]

Hi Ash, sorry to hear your mum has been so ill, but as the others have said, it is a slow road to recovery and from what you have posted it seems like she is improving. Hope your Dad gets better soon.

I had quite a lot of visitors once I was out of intensive care, I would open my eyes and see my son and daughter, then I would open my eyes again and my best friend would be there! It was confusing but comforting

Take care of yourself

Vivien x

[Lin-lin]

Hi Ash

Welcome to the site. I'm new here myself and I have found it a tremendous help.

Like your Mother I was fit and healthy before my SAH in November 2009. Eight weeks prior, I ran the Berlin Marathon!

This is how my family helped me during my recovery, hopefully it will bring you some ideas.

I was not overloaded with too many visitors. My boyfriend and five relations visited. They all had calm personalities and no one brought problems to my hospital bed.

My friends showed their support through cards, letters and text messages. Ask your Mother's friends to write her letters. I was always more engaging after receiving mail.

I signed a letter of authority allowing my Father to handle my affairs. I had nothing in the 'outside world' to worry about.

My personality changed a bit. I was more sensitive and too placid. Just go with it. Your Mother may find even slight challenges overwhelming and perceive that sometimes a well intentioned comment to be against her. This is not the time for Army style motivational speeches!

Your Mother will be very tired over the next few months, particularly now. She will be totally washed out with the simplest of tasks. It's all normal, but the recovery path is long and there are no short cuts. I'm eight months down the line and still suffer with fatigue and insomnia. (I'm much improved, of course.)

Your Mother clearly has a very supportive son in you. The fact that you're on this site, seeking advice speaks volumes. You seem a nice soul and this will help your Mother enormously. You seem to have the requisite qualities to manage this.

Remember that you need support too and don't neglect yourself. Off load to us and we will try to help.

Best Wishes

L

[Ash]

Hi all,

Sorry i've not been on for a few days. I was feeling a little more positive about things until today. Mum had a CT scan and the consultant told me she has suffered a stroke. She said it will affect her and she will have a stroke weakness down her right side although at this stage she can't be sure to what extent. It was a real hammer blow hearing that i'd just started to feel like maybe the worst is over but i guess that was a little naive. It's like the fear and terror has just returned and now i don't know where we stand at all.

The stroke happened during the week but was only detected today after the scan. They're doing another CT scan on monday so now i'm in fear worrying about what that will show. It's been a really tough day and what made it worse was my dad left hospital before the scan results feeling quite positive and then i had to phone him and tell him what had happened.

I really don't know what to do this is like a bad nightmare. I feel so sad for my mum and worry about her non-stop. There's nothing i can do which makes it worse and i can't stop worrying tonight. it makes me feel sick to think she won't ever be the same after this i'd give anything to turn the clock back 2 weeks when she was fit and healthy.

Thanks again to everyone who replies to me and your advice and kind words are hugely helpful. Hopefully there won't be any more strokes or anything bad and mum can get through the next week. I've read the first 3 weeks are the most dangerous period and sadly that appears to have been confirmed.

Hope your all doing well.

Ash.

Edited July 16, 2010 by Ash

[paul99]

hi ash

im pleased you had a few days to have some me time im gutted about mum suffering a stroke it may not be as bad as you might think ash it could be from the damage from the bleed pressing the brain during and before the op as apposed to a vasospasm lin suffered the same although hers was agrevated by the vaso spasm lin still moves her left arm and leg and moves her right arm quite well it lin has always moved her limbs except the right leg mum may be able to recover herself once she is more mobile and regain some if not all movement yes you are in a very dark place and the helpless feeling dosnt go away the what ifs and other question's keep coming it seems to be the norm for us carers your not naive in any shape or form so don't go there if you can help it it is a ****** nightmare but things will change believe me the dread dosnt go away but the improvements mum will make in time some of it short some long term makes up for it yes you will feel sad but on the other hand your there to support mum in her recovery and there is so much you will be doing over time then you will get a glow knowing your there for mum mum may be different in the way she talks and moves but its still mum inside take one day at a time ash i did you cant change things now but you can help in other ways your love for mum will boost her no end mum has a second chance of life abit changed a bit but its still mum i think mum hopefully is now out of the woods and continues to improve has she opened her eyes yet? and clocked your face he he i know when lin went into another ward and continued to improve the look i got with clear focused eyes made up for all that had happened the fact she was back with me meant so much to me ash you still have to go through the trauma of the healing process and mums recovery its still early days don't give up adapt to your new style mum give her smiles even though you and the family are in pain don't let her feel sorry for herself mum has a very long rd to travel and with you and the family side by side with her she will improve at her own pace god willing tickling her feet may give you a reaction you would most like to see especially if she had ticklish feet thats what i did with lin and still do to this day we would all wish to turn the clocks back but we cant and also wish it was me instead of lin but we cant ash just take one day at a time please im looking forwards to any update on mum take care and regards to the family take care mate and DON'T feel to bad

[JayKay]

I'm so sorry to hear about the added stroke. I hear you when you say you feel sick to think she'll never be the same. My mum had a severe stroke 4 years ago and I was exactly in your position - however, she has made incredible progress and she is still HER, even though it's a slightly different her, if you know what I mean. Take each day as it comes. No one can tell you how much she'll improve, how long it will take etc, but that's normal. And remind yourself (and others) that improvements continue to happen over a long period of time. Take care, and come here when you need support.

[Lin-lin]

Oh Ash, I am so sorry you're going through such a difficult time and that you've had an added worry regarding your Mum's health. I hope she's stable at the moment and is able to make improvements over the next few days. Clearly, I'm no doctor and so can only give you the patient perspective, but I hope it does something to keep you strong.

The initial hours of any SAH sufferer, or indeed stroke, are pretty gloomy affairs. No one can tell you exactly how things will pan out and you fear the worst. From the patient perspective, I was unconscious a lot in the first week and was under very strong medication. I only know the fears that friends and family had, after the event. At the time, I was calm. Irrespective of your Mother's ill health at the moment, she may feel quite peaceful within herself. I have to say, regardless of what was going around me, I have to describe my time in High Dependency as 'comfortable.' I hope this is your Mother's experience too.

Again, I'm no health professional, so I'll just comment on my experience. When I had my recent follow up appointment with my Consultant, the waiting room was full of SAH survivors and those who'd had strokes. So they are not impossible conditions to come through. Your Mother's previous fitness will stand her in good stead.

Will be thinking of you over the weekend and I wish your Mother well. I hope Monday brings better news.

Keep in touch and let us know how she is.

L xxx

[Liz D]

Hi Ash

I'm so sorry your mum has had a stroke. During my coiling procedure my left arm was paralysed for a while. The day after my op I was told that they had no idea what had caused the paralysis but didn't think it was a stroke. I now know it was a stroke in my brain stem. Ash I'm left handed and can write, although I find typing much easier than writing. I have balance problems, I can't walk fast and certainly couldn't run, if I'm going to miss the bus then I miss the bus! But people who meet me now for the first time are very surprised at what I've been through. I had 4 months of pyhsio which helped a lot. I know it's big ask but try and keep your positivity, you never know how it may be for your mum. I hope you see some improvements for your mum, take care.

[Skippy]

Hi Ash

So sorry that your mum has had a set back. I can only echo what the others have said. Try to stay positive and believe me I know its hard, but I also know that you staying positive will help your mum to feel positive too.

Sending your mum, you and your family love and best wishes.

[Tina]

Hi Ash...so sorry to hear your news....thinking of your Mum and wishing you and your family best wishes...take care love Tina xx

[Ash]

Hi everyone..once again thanks to everyone who replies to me on here it really is nice reading your kind words.

Well since i last posted mum has had another CT scan and that didn't show up anything untoward so as a result the EVD drain has been removed For me that's a bit of progress. She's opening her eyes now for most of the day and the nurse said they have a low level on the ventilator and are trying to ween her off of that over the next week. She's still not really moving much, little flickers down her left side which does worry us but we're trying to be patient and take it all very slowly. It's 2 weeks today since her op so it's still relatively early days for recovery after something of this magnitude.

We've had some more of her friends and other relatives visiting now which is nice and i've spoken to people i've not heard from in years who are all sending their best wishes. Sometimes things like this can help bring people together and that's something my mum would love as she was always the sort of person that liked to build and keep relationships..a real people person.

I'm doing a bit better now, still have moments of fear, but trying hard to stay positive and remember this is a long-term recovery and try to take each day at a time. I've been at hospital every day for 2 weeks but we're trying to get into a pattern where my sister comes to visit in the evening, while i can go home and eat/rest up and then be there during the day.

I hope you're all doing well too and many thanks to you all, especially Paul, who's been a real help over the last 2 weeks.

All the best.

Ash

[paul99]

ash

im pleased to read that mum is holding her own and that the evd has been removed and chuffed that there is no sign of further damage now the hard work for mum is starting once they have mum off the vent things should start moving don't worry if mum relies on the vent for a bit longer and she is sat up more the flickers are a sign that the brain is starting to repair the neuro pathways which have been interrupted during the bleed so don't panic at the moment its normal

its nice you have been able to fit friends in to see mum and have a break yourself as it is mentally tiring for anyone and that you are getting some me time you will also have people who will shy away because they wont know how to handle things but they will come round in time those moments of fear will fade in time but not until mum is home or out of hospital

just take it as it comes ash as you quite rightly say its going to be a long haul but don't forget we are here for you and the family love to your sister and mum and dad and yourself chin up

[maggie]

Hi Ash good to know that things are moving forward for mum.It all takes alot of patience and is slowly slowly but it sounds like progress is being made. Take care of yourself your mum must be so very proud of you. LoveMaggiex

[KelBel]

Hi Ash

Thank you for giving us an update. It is great to hear there was nothing untoward in your mums recent CT scan, and it certainly does sound like her brain is starting to recover gently, causing the flickers.

Keep us posted when you can. It is great to hear from you

Sending lots of love to you and your family.

Take care

Kel x

[Lin-lin]

Thank you for the update.

I find myself regularly 'tuning in' to see if any progress has been made! I'm happy that improvements have began.

You have acknowledged that the recovery is going to be long and this acceptance will make the journey a bit more bearable. Remember a long journey is not an impossible one. Projecting forward always seems a longer journey than looking back.

You are handling this brilliantly. Maybe this site should hire you out as a professional SAH visitor! I have no doubt that you bring support, calm and joy to your visits.

Keep up the good work. If able, let us know how your Mother is doing, we'll be listening eagerly and more than happy to help.

L xxx

[JayKay]

Sounds promising Ash! Yes it will be a long haul, and I'm sure it'll not be easy for you all, but there is hope, even when things look dire, people can make miraculous recoveries. Chin up, as my grandma would say. Take care!

[Ash]

Hi all,

Just a quick update on how things are going. They have now moved my mum from intensive care up to a ward. She went to high dependency unit for a night but the next day they felt she was stable enough to be on the ward so that's good news. It was a big relief to get away from intensive care, although i can't thank the nurses there enough, they were fantastic to us.

It's a lot less intensive on the ward although all the usual checks and stuff are still being done. Mum is off the ventilator but the trachi is still in.

The concern now is that her neuro recovery seems very slow. Apart from opening her eyes she's really not moving or doing a lot. They are planning to do another CT scan on Monday which will determine their next plan of action.

I'm trying not to worry about that too much yet. It does concern me that she's not moving anything or responding but everyone says time is the key and we need to be patient. I don't want to set any targets or have any hopes because noone can be sure what sort of recovery she will make.

Some of you on here have made wonderful recoveries, i just hope she can do the same. I don't know how long it takes most people to start moving or responding after an SAH but it's bound to be an individual thing. The doctors aren't saying anything specific right now but we'll know more on Monday.

Thanks for all your continuing good wishes and take care all of you

Ash

[JayKay]

Crossing everything for you Ash. Like you say, there have been some brilliant recoveries on here, so don't lose heart. And you're right, each case is different. Good luck!!

[paul99]

hi ash

im pleased that mum has made it onto a normal ward at long last i think dad and you and your sister will be a lot happier and so will mum i believe you said it was a big bleed this in itself will affect mum quite a lot try not to worry too much now mum is on the ward the physios can now start working mum fairly intensively so see it they can gear mum into doing things herself it took lin quite a while to kick herself into gear but she had a class 5 plus bleed i think when mum realizes that she is out of the beeps and alarms world i think she will surprise you i hope so i really do i hope the family are able to relax a little more now and you will be able to have a more pleasant a time with mum and that you get very little treats along the way courtesy of mum fingers crossed ash will await more from you in time take care and chin up

[Tina]

Hi Ash

Thank you for your update.....great news your Mum is now stable enough to be on a normal ward all positive Take care love Tina xx

[KelBel]

Hi Ash

Glad to hear your mum moved so quickly from ITU through HDU then onto a normal ward. It sounds positive.

Wishing you all the best

Take care

Kel x

[Skippy]

Hi Ash

Sounds like things are looking up. You're right not to set targets for recovery, everyone's recovery is a very very individual thing - even the experts wouldn't be able to hazard a guess.

Moving onto a "normal" ward is a great step in the right direction, but remember, your mum still needs rest and recouperation. I'm sure the CT scan will show if there's anything "wrong".

Sending your mum, you and your family love and best wishes