Im new and scared my mum has suffered SAH

[Karen]

Hi Clare,

Well that's good news about your Mum ..... I was transferred from a specialist Neuro hospital to my local general hospital within 7 days....so it's not abnormal. They still do the obs etc and keep a good eye on you. I'm sure if there were any concerns with the vasospasm aspect, that they wouldn't release your Mum. I found that coming home to the local general hospital, really boosted my morale and motivated me to drink the fluids, walk and do everything else that I was asked to do......it was another step closer to actually going home.....it was great!

Try not to dwell too much on the vasospasm aspect of the SAH...they really do keep a good eye on you .... in fact, I used to get fed up with all of the attention and really wished at times that they would b****r off! I'm sure that I was still slightly bonkers at that point.....poor nurses!

What I craved, was normality when I got home .... I'm sure that your Mum won't care about the decorating, she'll just be happy to have got this far ... I can still remember the feeling of what it was like when I left the hospital, albeit in a wheelchair ..... I was tired, but ecstatic to be going home....

The familial hereditary thing is a dilemma ..... there's a link on this site to the Val Hennessy Trust .... where there's some info and facts and figures about screening......however, I would strongly advise you to concentrate on having the baby first and then having a good think about it. I was all for testing at the start of my recovery, epecially with my kids, but having a period of time to mull it over, I'm not too sure what I would do now ... as you know, there's a risk to any op that you have to undergo, but there's a small risk of stroke to anybody undergoing coiling/clipping and I suppose that you have to weigh up the pro's and con's of this. I don't think that it's an easy decision to make and I'm still uncertain whether I would want either of my children to have the test. It's a hard one, no guarantees and no easy answers .... my Grandfather died of a SAH, but he was well into his 80's .... my mother in law, also had an aneurysm coiled, but it was found before it ruptured ... many people do have aneurysms that never rupture and I suppose that this is what you have to weigh up. From what I've read, they don't always screen you, unless you have 2 first degree relative that have had aneurysms ... if I'm wrong then I hope that somebody will put me right?

Anyway, not sure that helps you at all, as it's only my own personal feelings ...

Take care....

[Guest Clare]

One thing I forgot to mention and cannot get out of my head is the circumstances under which this all happened;

My dad is a complete workaholic and is up and out early, in the evenings when he gets in he has dinner and falls asleep on the sofa, he complains when my mum wakes him to go up to bed that he cannot get to sleep.

The thursday before this happened dad had arrived home early to find mum curled up holding her head, bad headache! We'd all been suffering with flu, presuming this was the cause dad tucked her up in bed. She stayed there all day friday sleeping too and dad was coming home every couple of hours to check she was ok.

I spoke to him that night and he was telling me how he was looking forward to getting a full nughts sleep on the sofa, I told him that he must go up to bed because I had a really bad feeling, after a protest he duly listened, and at 2am she had her first seizure.

Had he stayed on the sofa, he would have found her dead in the morning I'm sure.

One thing I'm finding hard is to pinpoint exactly when the aneurysm burst, when the headache came or right befor she had the seizure?? Guess we'll never know.

Also she had a small bleed in the brain 7 years ago, only symptoms were a sever headache. She really should have been checked more thouroughly.

I'm relaxing a bit more about the vasospasm now. Mum will definately care about the decorating, she always has to have some sort of project and wanted it done before the baby arrived. I will have the check if they allow me, I have never really cared much for my own mortality but now i know I wouldn't want my parents, husband and babies to go through what we have. As for preventative coiling, I will cross that bridge if I ever come to it.

This site and everyones input has really made me feel so much better thanks again everyone.

[Karen]

Hi Clare,

As I've probably told you, I had a so called "warning" bleed as well, 4 years earlier ..... I presented that time with many of the classic symptoms...one minute I was fine, no headache nothing ..... next minute I just felt odd, almost as though my head shivered and I knew something wasn't right. I got to the sofa, sat down and then wham .... I felt as though somebody had taken a cricket bat to the back of my head. I managed to grab the phone and walk to the bed .... even my breathing was pounding through my head ... My Husband was working abroad, so I called my parents. I really thought that I was going to die. Managed to drive to the GP's the next day.... and was diagnosed as having a stiff neck due to working on a computer.....it went on like that for weeks, going backwards and forwards to the Docs. In the meantime, I started to feel better, obviously a clot had formed ... I started to research my symptoms and it was telling me back SAH/stroke ... I also had eye problems.....back to the Docs, gave up my job (also diagnosed as stress related) and they eventually gave me a MRI scan with the results as having a probable warning bleed. The eye problem continued and I was advised to stop driving for a while.....I can't believe that they left me like that...neither could the neuro hospital, 4 years later.

4 years on, after a heavy cold and what I thought was painful sinuses...I presented much differently.....this time a continual/severe bad headache and pain around the eye which lasted about 7 days ...backwards and forwards to the GP's again, anti-biotics etc, but nothing was touching the pain. On the night it finally blew, I started to feel a bit disorientated and felt a huge pressure in my ears and that was it, bang, then seizures, vomitting and paralysis .... I can remember yelling for Eric and saying that it's happened again.....he called the ambulance and that was that.

I know that I'm lucky to have survived this, 2nd time around.

[Guest Clare]

Another update.

Went to see mum today, she has all of her drips out and her catheter. Infact she was sitting on her bedpan the whole time (2hours) hoping to wee. I presume that this is normal when you haven't had to think about it for over a week.

She has been sitting in a chair this morning and said her legs felt really heavy.

What I am concerned about is her emotions, she is so normal in herself, but doesn't seem to care about anything, I don't think she realises the enormity of whats happened, maybe it's shock :?

Her memory isn't so good, she doesn't remember anything from about a week before the bleed and forgets things I have told her already, like she had a seizure.

She did write her name today though after I gave her a pen to tick the boxes on her menu.

Am I expecting too much? How hard is it emotionally? Will she be back to the same person as she was before?

Also she had another scan this morning, I'll post the results when I know.

Clare x

[Skippy]

Hey Clare

It took me about 3 weeks to a month for the enormity of the whole situation to hit me. I then became depressed and couldn't stop crying, I was scared to be alone and got very anxious - they call it post traumatic stress syndrome. I found it more difficult emotionally than I did physically but it passes and things regulate themselves. Remember this isn't like having a broken arm that has has to be set in plaster for 6 weeks. Her brain has been insulted/hurt and needs to repair itself and a whole range of emotions can and will take place while its doing so.

Just remain positive and strong and remember that a pair of arms to hug, a shoulder to cry on and loving words go a long long way to aid recovery and are very good medicine.

Take care of yourself too.

Sami xxx

[Karen]

Hi Clare,

It seems as though the brain has a knack of forgetting the stuff that it doesn't really need to know after the bleed .... a good thing about that, is you don't worry or dwell on anything .... perhaps it's the brains way of trying to recuperate and repair after the insult on it. It's just resting up for a bit.

Short term memory problems are very common after the bleed and you'll find that your Mum will get better, but it could take quite a while. I couldn't hold a telephone conversation or fill in forms when I first came home ... I couldn't remember my date of birth, address or telephone No, GP's name etc., my brain would just go blank when I was asked. It does all get better with time and you just have to allow for the healing process to take place.

Being left home alone, like Sami mentioned, is probably one of the scariest points in the recovery ... nearly everybody that I've spoken to, has said the same .... you also hit a point where you get worried about the SAH happening again .... and the "what if's" also come into play. It can take a while to re-build confidence again and for me personally, I suffered quite bad anxiety.....however, a lot of mine was due to having double vision and not being able to walk very well.....so it will differ for everybody.

Emotions can be like a rollercoaster and again, it's different for everybody...I could swing from tears to laughter....but it's normal after the SAH. Think that the family just need to have plenty of patience and realise that it's part of the recovery process.

[Guest hellie]

Hello Clare,

Your experience seems very similar to mine. We thought Mum would be at bed ridden for some time, if we got her home, so Dad and my brother built a concrete ramp in to their bungalow and were talking of all sorts of different things that might have to be done around the house. It was a mad panic to get the ramp finished as she recovered so quickly when she got back to our local hospital.

I remember just a day or so after her coiling we were talking about Dad not knowing their pin number for the cashpoint card and Mum piped up from no where with the number, and said there was a tenner in her red coat pocket. Her memory hasn't really been a issue. Emotionally it has been very different, she has no patience at all now and gets very annoyed with everyone. Before she wouldnt have argued with a soul but now she has digs at everyone. A friend of my parents commented on how she swears now, which she rarely did before.

She keeps saying " do people think ive gone doolally?" She is different to before but still my Mum.

She has gone to her GP this week and is now taking 'happy pills' I have tried to drop hints that a councellor might help but we will have to wait and see how she feels about it.

Since Mum was released from hospital she has been back once for another angiogram, that was about six weeks later, to check the coiling was ok, but as far as we know thats it as far as hospital goes. She has regular checks with the GP, to monitor blood pressure and cholestrol, and she also has a nurse who she can ring back at Frenchay if she has any worries.

Clare from what I have read here, every one is different, I have changed myself from this experience, my Dad even does the washing up now.

All we can do is wait and see, and be happy we have another chance.

I wish you both all the best

Luv Hellie

[Guest Clare]

Thanks Hellie and Karen,

In the first few days I was panicking about survival, brain damage and permanent physical disability. Now that we seem to be out of the woods where dying is concerned, I've had to realise very quickly that I may not get the same mum back that I had 2 weeks ago.

I am reasurring myself with the fact that her brain isn't ready to cope with certain bits of info, or emotional stability. I know that healing will take a long time. If we're lucky she will be back to her usual self eventually. I just keep forgetting to put myself in her shoes.

My dad went to visit her this evening and she told him this was all his fault. Which hasn't done him any favours, I spent a hour on the phone telling him to take it with a pinch of salt and that she may say nasty things occasionally.

But she isn't swearing and is "my mum" most of the time, she's so calm about it all at the moment and told me she isn't scared or worried.

The consultant spoke to my mum and dad tonight and the results of the scan were good, he said the coiling was a success and there is some swelling on the left side of the brain which is normal. He say's there's still alot of blood up there and we have to wait for it to disperse, but overall her recovery is good.

Just wish this hadn't happened and I want it all over and done with.

[Karen]

Hi Clare,

I used to have the odd outburst at Eric......you always take it out on those close to you, as you know that you can....that may sound horrible, but you know that they won't run out on you. Speaking for myself, it could be quite hard trying to keep it together and appearing calm, it took a lot of energy trying to keep the act up, as you didn't want anybody visiting you to be more upset than they already were, especially your children. Hope this makes sense? As a Mum yourself, you'll probably know what I mean.

I bet that your Mum hasn't taken her temperament out on you, when you've visited her? Have a feeling that she's saves up her frustrations for your Dad when he visits alone .... she's probably doing her best to protect you all from worrying about her, so I would take the outbursts as letting off a bit of steam and it's not necessarily unhealthy to let her do it at this stage. It doesn't mean to say that her personality is going to change.

So, yes, I was guilty of having the occasional dig too and will admit that I felt the need to take out my frustrations on somebody....which just happened to be hubby.... Give her some time and I know that it's easier said than done, but tell your Dad not to get too upset over the fact that's she's aiming at him .... believe you me, you do feel guilty over it later on.

Take care and put your feet up ..... your Mum is doing well....

[Slim]

Hi Clare, How's your Mum doing?

I'm like Karen, I took and still do take things out on Donald. Friends would visit and be chuffed "Isn't she doing great". And I would put on a slight show when folk were visiting and that does use up all your energy. I was also used to being right most of the time. I can't believe I'm admitting this. But I would rarely argue or push my point unless I knew I was right. Were when I came out of hospital I felt people, Donald included didn't trust my input or opinion. A lot of times they were right! But it still hurt. Also if we were out, i would want to pay but of course friends were trying to spoil me. But I found this lovely gesture very tough and disempowering. Now not a problem I'll say you go ahead and pay. But at the time i felt I'd lost all sense of control and my only way to vent this was to explode in anger and of course Donald copped it most of the time. i suppose we feel we can be ourselves with the people we love.

Donald just reallyed irrated me when I got home, I felt at one point more like brother and sister, I was trying to score points of him, v irrational. Or he was the big bad warden and i would try and push him to the limit.

Now thinking is possibly because I had nothing to do during the day. i was very frustrated, If your mum was a strong personality before, it will be hard for her to relinquish some things to your dads control, and she may resent that i certainly did. Now for me things are a lot better that I'm finding my feet and getting my own independence back. Donald knows I don't mean it. (most of the time)

You and your Mum and Dad hang in there.

Aine xox

[Karen]

Aine,

That's a very good point ... I also felt a loss of control over my life ... I think that it could be partly to do with the life and death thing as well ... and sort of knowing that you do have very little control over life when something like a SAH hits you and knocks you for six. I also know that everybody wanted to be kind and help as much as they could ..... but to go from being very independent, to not having any control at all, was a massive blow to me.

I can remember trying to help Eric put a shopping list together and he wouldn't let me.....I blew my top and cried .... I then went on to explain to him, that I at least needed some control on what food was going to be bought .... it seems silly and stupid when I look back, but it seemed important at the time.

I was probably still a bit bonkers at that point.....

[Guest Firefly]

Hi hun, I am so sorry I haven't written. I have been a bit under the wearther. I know that this is going to be hard on everyone but, it is so normal for her to have a wide range of emotions!! She won't be able to control them so please have patience and don't take it personally! I can remember how bad I was for the first 6 months or so. I still have my days!! She has a lot to work out in her head as well as trying to recover! I still sleep a lot and I am almost 2 years post rupture. I was 45 when mine happen. She is a survivor!! She has a long road ahead of her and love is all you can give her!! I will be keeping her in my prayers!! I hope she heals quickly, if she needs someone to talk to we are here!! Take care hun, it will get better in time. she sounds like a strong woman!!

Tricia

Sorry I haven't written everyone. I have had a bug and my back is out?? I am a mess!! Your all in my prayers!! Tricia

[Guest Clare]

Thankyou for all the replies. I think alot of patience is going to be needed.

I asked my mum yesterday how she feels about my dad, and tried to explain that the anerysm was a little time bomb and it was no-ones fault. She said that she loves him to bit's but he is a strange old man which is quite a normal comment from mum.

She still seems very detatched from everyone and everything although she is very with it. Yesterday she asked me for the first time how my daughter is. She held my hand the whole time I was there. She hates being in hosital, especially in the HDU because it's boring.

We had a giggle and a gossip about things. She is now having to ask to go to the toilet and being helped to walk there. The nurses have made her do laps of the ward, which is tiring her out and she said she doesn't feel she's walking successfully. They are stopping her from cat-napping aswell now.

Basically she's p****d off with it all and just wants to go home and return to normal. She's having an MRI today and then will be moved to a normal hospital.

Although last night she asked my dad how she ended up in hospital in the first place, even though I'd only told her the day before, I'm not sure whether she'd forgotten or just keeps asking because she can believe it.

Her short term memory loss seems to be very selective.

[Karen]

Clare, what you've said about your Mum is so similar to me, that it's scarey .... I also hated the hospital experience...I think that you'll find that once she gets transferred to a normal hospital, then she'll perk up a bit, as it's another step closer to going home.

[Louise]

Hi there

I havent been here for a couple of days so takes a bit for me to catch up but I just wanted to say I was forever asking how I got to be in hospital, my short term memory seemed to be selective, turned out to be things I really had trouble understanding.

Take care of yourself

Louise.x

[Guest Clare]

I'd like to thank everyone on here for taking the time to reply to my posts, and giving me honest reasssurance and advice. I cannot believe it but we have now hit 2 weeks since mums SAH and I know that this site has really helped me keep my head straight.

An update on the situation today, mum has been moved to a neuro ward now and the care is a lot more relaxed, she still hates it and just wants to come home, but she understands that she will once she is a bit better. She is adament that she has only been there a week and she has been trying to work out the days on her own. She is still slightly disorientated about things and told dad not to worry about putting the rubbish out because she did it herself last night bless. Dad was there last night and apart from telling him off for coming in his dirty work clothes she was very affectionate.

[Karen]

That's good news Clare

Don't worry about the time factor thing....I didn't have a clue how long I was in any of the hospitals, until I came out .... you don't tend to have much of an idea, especially when you're drifting in and out of sleep much of the time. Yes, your mind can play tricks on you.... I can remember thinking that the Nurses were Air Hostesses.....there's been a few of us on the board that have experienced this. I apparently used to talk in my sleep too......I was told that I used to rabbit on about Smarties and the different colours of the sweets......not sure why, as I've never liked them...but it did give the other patients a laugh...

She sounds as though she's doing well and will do even better when she gets home to familiar surroundings.

Hope that you're keeping well and resting a bit easier now...

[Guest Clare]

So I went to see her today with my dad...

She was much happier, but slightly manic. :?

She now won't stop talking and although she is making sense most of the time she is doing things which are a bit out of character.

Like when her drip infuser was alarming she started pressing the buttons and fiddling with it herself.

And out of 4 other people in the room she is the liveliest.

I don't know whether its the drugs, the fact that she hasn't been feeling herself for 2 weeks and is letting off some steam (a bit like cabin fever), or do with have some new and interesting personality traits developing????

I asked her if she felt liberated by the whole experience and she said she just felt "inconvenienced", she know's she's being flippant about it all, but I'd rather that than her getting depressed.

So overall a good day, things are on the up, I think tonight is the first night I won't go to sleep crying.

[AndyH]

Hi Clare,

I am glad to hear things are settling a bit. One of the first words that anyone used to describe Heather, post SAH, was glib. Heather, at the time, was remarkably dismissive about the whole affair and still can be.

Her pressing of buttons sounds a lot like Heather. Heather used to pull at all the wires and and tubes and it got to the point where the nurses bandaged her hands!!!

As for personality traits, I am afraid you will have to wait and see. Heather is far more caring than she ever was and is always available for a cuddle or a kiss these days. I have a wife who is far more approachable than she ever was before. I have changed a lot of the years aswell.

Anyways

gotta go.

Sleep well.

Andy

[Guest Clare]

AndyH- I am pleased to hear how far Heather has come, I spent a while reading your story yesterday and it made me cry, some of the things that you describe were so similar to what we went through only 2 weeks ago. Although your experience was much longer drawn out. Especially the doctors pressing the pen against Heathers fingers. They were doing this to my mum when they were trying to wake her up. I was begging them to just let her sleep, thinking that her brain needed to rest, until the nurse told me that she was sleeping so deeply she was at risk of drifting too deep, and they didn't want her to go into a coma. You and Heather are a truly insirational couple.

An update on mum...

I still think she is going a bit stir crazy. She threw a grape at another girl on the ward today to get her attention, not my mum at all. And snapped a couple of times at my dad and I.

But we had a serious chat about what happened, her memory is coming back slightly, she remembers having the headache and just collapsing on the floor in pain, I asked her if it was the worst in her life and she said it was. I think (if I put my best physchiatrist hat on) she's a bit freaked out by the whole experience and is trying to put a brave face on it, but is overdoing the act a bit.

[Karen]

Hi Clare,

Think that you do go a bit stir crazy when you're in hospital......it's such a long day when you think about how early they wake you up. It used to take me until the early hours to get off to sleep .... due to the groaning of the other neuro patients, because they were in pain and then when that stopped, the snoring started or drip alarms were beeping..... when I did eventually nod off to sleep, I would be prodded by a nurse wielding water and more tablets.

I don't think the gravity of the situation hit me really, until I returned home ... perhaps it's because you feel as though you have to keep your guard up, when you're in hospital and you don't want to upset anybody....like I said in my own story, once I got back home, things could swing from laughter to tears quite easily .... I was told that it was quite normal to feel this way for a while.

[Guest Firefly]

I know this is pretty hard on the family. I hope you are getting her test result & surgery reports from the Dr's. It is your right! You have to be an advocate for her heath care and be very involved. If something is not working have them do something different. Do they have her on a breathing machine so she doesn't go into a deep sleep and stop breathing? It is the same thing Sleep aptnia patients use?

I have a bad habit of holding my breathe sometimes??? I know what your Mom is going through! It is normal for a person with a brain injury to cuss, lash out, cry, get ****** easy, be confused, memory loss!!!! I am 2 years post rupture and I still have days when I get in a mood or get emotional... I am still working on my skills, it just takes a lot of time and patience from everyone involved with her!! The brain is an amazing and delicate organ, it also takes time to heal. I hope you find the book "The mild traumatic brain injury workbook"!! It is a good tool for the family involved in her care. It explains all the different catigories of aneurysms, brain injury from trauma, strokes... It will give you an idea of what to exspect. Tells all the symptoms, after effects, what to do, has workbook things for her to do with someone when she is ready. It helped us so much!!!

The family can't take what she says or does personally, she doesn't even know she is doing it and won't remember. I know it is hard, but she is going to need a lot of love and help during her recovery!! Esp. love and encouragement. This is a tough situation hun and all we can do is pray for her! She is going to go through a lot of different emotions as she heals, many of us suffer from bad memory problems!! We can give her encouragement if she can get well and get on here and talk to us. It helps so much talking to others who know how this feels! We are all different and all have to come to terms with this in our own ways!! I write poetry, listen to music, play games, try to draw or paint... Support groups are great!! We know how it feels! I will keep her & your family in my prayers!!

Andy, I found your story touching also! You and Bernie could prob. swap some stories!! I hope she continues to heal!

Good night or should I say morning all, it is 12:34 now! Love Tricia

[Guest Clare]

Karen- I think she is definately keeping her guard up. My dad left before I did last night and the minute he left she really calmed down and had a chat with me about what had gone on, and she was trying to recall the events and days. I think she knows how scary the whole ordeal has been for him and is tyring to put his mind at rest by acting happy.

She's just like mum with half a bottle of wine inside her

Firelfly- We need to have a chat with the doctors and find out the latest, I have been doing this all along and took matters into my own hands. I have also done a lot of research so I know what they are talking about. They were trying to stop her drifting inot a coma in the first 2 days, she is now breathing fine and in a low dependancy ward.

She had moody days before, as every woman does so I think if this is the case when she returns from the hospital we can deal with it.

I have every intention of tracking the book you recommend down. Thankyou for suggesting such a useful tool.

She might be quite willing to show her face on the boards once she is home, on the other hand she may be sick of it all and want to start a new chapter. Whatever happens I will probably be on here for a long time so I can get help with the various obstacles we are yet to overcome.

Again thankyou for all of your support.

Clare xxx

[Karen]

Hi Clare,

It took me about six months before I used any of the existing m.boards.....I was hoping that I was going to make a fast recovery and be able to leave it all behind me, return to work etc ....so couldn't see the point in using them.....unfortunately, this wasn't to be in both cases and it was good at this point to make contact with others going through the same.....think that it staved off the depression at that point, to be honest.

Your Mum handles things the same as I did.....you try to protect those you love....she'll open up gradually, once things settle down and she's back in her own home. She's doing really well, by the sounds of it.

[Guest Clare]

We had the best visit today.

There is a small area outside my mums ward where they have chairs and and stuff. My husband and daughter Kate waited there and the minute my mum knew she was there she jumped up out of bed and said lets go. She hobbled out of the ward, she appears to be weaker in her left side. It was a very emotional reunion as my daughter is my mum and dad's life. My mum sat out there for a few hours, all in all we had a lovely evening.