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newbie..and rather sad..


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Hello all, thank goodness I have found this site!!!

Mum (67 yrs) had an sah on wed 20th july after a thunderclap headache, she was transferred to Addenbrokes and on the Friday the operation to coil the aneurysim was a great success.

However, on Sunday mum suddenly got agitated..it was like watching a severly agitated dementia patient...they took her down to NCCU and sedated her and put her on ventilation...

scans dopplers, lumber puncture all came back with little idea as to what had happened..she was stable, but they didnt know what had happened. Monday they redid the lumber puncture and drained fluid at the same time of her brain...this proved to be a turning point as they took her off sedation and she seemed to be trying to communicate, the intubation tube came out, but within a few hours she was reintubated and resedated...that night she was taken to theatre to have a drain put in.

On wed. they took her off sedation, she had moments of knowing who we were, Thurs. evening just as I was about to leave she started having problems with the intubation tube so they removed it..she then thanked the nurse.Those few words were so bliss to hear!

within 24 hours she was moved to NHDU and was eating drinking talking off everything bar a small amount of oxygen....

So I realise its very very early days, but mum is no longer mum...such a personality change..huge pieces of memory have gone, nothing really important, but she is so childlike, so like my 98 yr old grandmother, her mum, in so many ways, outspoken, rude at times, talking complete gibberish and with some amazing stories ( I have apparently drowned)

What are your experiences of this stage of recovery? how much has returned for you and yours?

I can truly say this has been a rollercoaster week and Im feeling a little shell shocked by it all....many thanks sharon x

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Hi Sharon try not to let it get you down it takes time for the brain to heal. I told everyone who would listen that there were bees it was the air conditioning and that there was a nurse in the wall watching me lol. She will get better in time. Jess.xxx

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Hi Sharon,

Sorry to hear about your Mum....I had SAH in July 09..I was away with the fairies most of the time.....Stay by your Mum...she needs you like I needed my daughter..Now we argue just as we always did lol......Keep smiling and watch your Mum...you are worried about her . ..remember it's natural.....my daughter argued with nurses but in a nice way about me not seeming right in myself...Hope your Mum gets well soon and you two can have a heated debate just like my daughter and I do..Keep smiling and all will be well for you all .....I kept swearing and singing..mind you my Dad taught me rude songs when young ..lol

Oh also I had shunt fitted in 210 thats when I started getting back to some normality, still get forgetful but mostly ok

People on here will help you ..Great Lot xx

All my Best to You and Your Mum

Love

WinB143 xx

Edited by Winb143
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hi sharon

this is a nightmare you are going through please dont take too much notice of what mum is saying at the moment is is way too early to get a true picture of mums condition please bear with it mum will come round in time its good she can talk this early but have patience it does get better in time make sure you take time for yourself as well

mums brain is all mixed up at the moment and it wiill take time for the brain to sort itself out and reconnect all the pathways i wish you well take care

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When I was in HDU I believed I was been poisened by nurses especially at night so I would spit out life saving meds when they went!!! i would then reconsider and take tablets. A week later when moved up to ward-duing the night I unscewed Cathather and went and told other patients the govrnment were coming to collect me!!!!!!!!!

After brain surgery I think it takes a bit of time to recover. I had 1 anni clipped and the other wrapped. My family told me it took about 3 weeks before I started to be recognisable. Dont worry too much if you can, It should get better. Its not days, weeks or even months!!! Im 10 months down the line and still have panic worrying days and others where I feel great, Just be there showing her how much you love her. It is enough

Love

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Hi Sharon

I'm sorry your mum has had a SAH and wish her well in her recovery.

My husband told me that (when I was in HDU) I was convinced that one of the night nurses was trying to harm me and asked him why she kept putting me and my bed in the staff kitchen! My memory of this is still me sleeping in a kitchen at night! But this was also when I was having halucinations - I kept seeing a rastafarian crawling on the ceiling and an arab waving to me from the circular light in the ceiling, to name a few. I think this was caused by the amount of morphine I was being given to help with the pain but the staff said it was part of the healing process. I was like this for a week but things got better once the doses of medications got less.

If you have any concerns or questions speak with the staff that are looking after your mum. You can even ask to speak with her consultant too if it helps give you some answers. We are all different and our healing can also be very different.

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Liz,

Forgive me for laughing at your reply...but I was like you also do not remember anything.....and if what I dreamt is true..Sorry Nurses ! !

I saw a Railway man coming up to me and told him he is not putting any tubes into me....Don't ask me why a Railway man !

Then when I got ventriculitus, I remember telling the Nurses "You hurt me and I am telling my Mum, Dad and my Doctor" I must have been a pain lol

My Sister used to come and sing to me with my sister in law...We used to have a sing song poor other patients.....

It was hard for my family but I was oblivious of what went on around me......and I only know rude songs ..lol

Keep happy Liz and All and Sharon chin up xx

Love

WinB143 xx

Edited by Winb143
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I thought at one point the hospital had been taken over by a band of terrorists and one of the patients "sacrificed" herself to them for everyone's sake. I was afraid to be alone when I thought this was going on. I later realized there was no way that patient could have done what I thought - she couldn't speak and had no impulse control.

I argued with my husband constantly about things I thought he had brought to me. He would gently disagree and try to show me that it wasn't possible.

I thought I had gone home for the day, scaled the stairs with a coke - I could not walk at that point and was not allowed liquids.

I called my mom a *****.

When I had my re-coiling done I was fully cognizant when I awoke in the neuro ward and then I realized all of these types of things are pretty normal, especially early on.

Kelly

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To All,

The things you have put on here about us coming round after SAH/coil etc fitted is so funny

I know at the time it isn't funny but looking back on it does read funny.....please keep them coming

or write a book on it lol cheer others up....well it has me !!

Love to All

WinB143 xxxx

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Yes WinB143 (I also remember waving back to the arab, lol!). It's not much fun for family at the time. After my coiling I needed to be monitored constantly and had a nurse sit by my bed 24 hours a day for 5 days. As they moved people in and out of the ward I was in, I kept wondering why they never moved me as I didn't think I was that poorly! It's only now that I realise how many tubes I had in me, including a tube stitched into my artery in my right leg and another stitched into an artery in my left arm. I knew it upset my youngest son seeing them all but I thought by putting my hands under the covers when he came to visit he wouldn't see them. Forgetting that they were plugged into the wall behind me! We can now laugh (and do laugh about it) but I know they found it a very scary time.

I hope this helps you in some way Sharon and helps keep you positive. I had a brain stem stroke during my coiling procedure and had to relearn quite a lot after I came home and still have left sided weakness. I do remember a teacher friend saying that I was like a child, but not childlike, because of the things I had to relearn. But my SAH was Feb '09 and I've been back at work since last July and I'm still improving! Time IS the best healer. Sending best wishes to your mum and all your family.

Edited by Liz D
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When i was in the first week of recovery i thought the nurses were trying to make me sick and each night my temperure would go up i thought they were lying.When hubby arrived for the 2 hour afternoon visit i sent me out to get me a thermoneter and made him go around until he got me the same one as the nurses so i could tell them they were wrong £40 quid lighter and they temp did go up at night SORRY NURSES :oops::oops:

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Hi All

When I was being taken to the HDU after coiling apparently I started fighting with the porters in the lift because I wanted to go the loo, apparently they had difficulty controlling me (after a general anaesthetic!!!). On arrival at the HDU I then accused the sister of standing on my catheter and was quite rude. By the time my wife came I was eating a cheese sandwich and can't remember any of it. I still feel sorry for the porters I'm a big bloke.

Cheers

John

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I didn't have surgery and wasn't completely out of it but I did leave my suit pants on for 2 of the 3 days I was in hospital because I was so certain I would be getting up and going back to work at any time... Ok... Maybe I was kind of out of it! Lol!

Sandi K.

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Aw Sharon, I'm sorry to hear about your mum. As plenty of others have said, don't be too disheartened just now, it's very early days. I was a bit weird after my SAH and surgery, but I know what it's like to be in your position because my mum had a stroke (a clot) 5 years before mine and it was horrible seeing her so poorly. She is now 79 and living alone with just a cleaner and a home help a couple of times a week. Considering she was in nappies and couldn't speak, and it was a struggle to take each breath, I now know that miracles happen!!

Glad you found us. Don't hesitate to ask any questions you may have. Take care!

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My hubby kept holding my hands away from tube I had up nose.....I only wanted to blow my nose lol

My Sis visted me after my return home....Before shunt ...she said I took toast off her plate and put it in my

bed..she thought I was hungry so left in my bed....I wonder if I ate it !

Keep Happy all

Love

WinB143 xx

Edited by Winb143
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mum had started to improve, I had a couple of wonderful conversations with her, then they took out the tube...Now once again we are back to confusion...awaiting to hear Drs plan shes back on hourly obs, Im guessing ( and only guessing ) that the fluid is building up again..

However, all your stories are wonderful, they prove to me patience and time is crucial...thank you all so very much for giving me back my hope when I was starting to lose it xxx

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Hi Sharon,

I'm so sorry to hear about your mum. Hang in there and stay strong. Today I talked to my sister for the first time about those early days. She doesn't live local but was with me when I came round from the op. I luckily don't have much memory of it all,don't remember going in the ambulance,being in a and e,or even the first ct. But a have very clear memories of the angiogram. Don't remember going down to the op etc etc. But I do remember the hazy faces of my sis, and my dad putting his hand into mine.

My daughter who was 10 at the time only saw me once about 10 days after surgery for about 5mins, but that's ok,she's been through a lot in her little life and we are very very close. She has been a star and accepted the new me better than i have,tells me to lay down when she sees I'm tired,makes sure I do things like remember to put my seat belt on,the list is endless really.

Your mum will always be your mum even if she will be a little different now.

I wish your mum a good recovery,and remember that the strength you get from those around you will be your strength.

Big hug to you.

SarahLou Xx

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Hi Sharon,

Welcome to the forum. Sorry to hear about your Mum. Don't give up hope. I think you have helped us too by making us all look back and realise just how much we have improved over time. I know I behaved very strangely in hospital and my husband has told me he queried his ability to look after me long term should I stay that way. Now, 2 years down the line, he leaves ALL the housework to me .:nonod: ( I remember he promised not to do that too)!

Your Mum will improve, it just takes time. Some things longer than others. Look after yourself too. She will come to understand just how hard this has been for you. I personally think my family had a harder time in the initial stages than I did. Most of it I have no memory of, and it's likely to be that way for your mum too. I do remember all from around the third week on and know I came to a point where I thought " I owe these people (medics and close family) so much, how can I ever repay them?" Am still certain I never really can.

I hope things improve quickly for your mum and you feel less anxious about the situation. Hang on to hope and keep us updated with her progress. Hopefully we will be conversing personally with her before too long.

good luck

Sally xx

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