rod123 Posted May 17, 2009 Share Posted May 17, 2009 Hi again merrill my wife has had three precedures in the last 7 weeks the first a coiling on the 30/3/09 the 2nd a clipping on 4/4/09 and on the 9/5/09 she had a shunt fitted to sort out hydracephalus, does anybody know if this will be a draw back in her recovery or will her recovery be the same as what i read about for sah, only sometimes the comments she come out with i find quite alarming like she has spare clips and coils in the kitchen cuboard and will swear blind that people who we hav'nt seen for a week have only just left,every night we argue about her medication as she will always argue that she's already had it, i got her a book to write it down every time i give it to her but now she say's that she must have forgotten to write it down there are lots of bizare thing she say, is this all typical confusion as i don't read much about this and the hospital just send you home with the minimum amount of info, than Rod Quote Link to comment Share on other sites More sharing options...
paul99 Posted May 18, 2009 Share Posted May 18, 2009 rod its sounds like you are going through the mill didnt the hospital give you any support i find it very strange if they didnt have you spoken to headway since we last spoke the shunt should help in the recovery is as far as the shunt drains away csf its still very early for mell and it will take time for mell to recover and as someone has said they dont know how long it will take its like the old saying how long is a piece of string i think you need to talk to headway who should be able to help take care will do a bit of looking for you take care love to mell i hope you do get some help and advice Quote Link to comment Share on other sites More sharing options...
Janet Posted May 18, 2009 Share Posted May 18, 2009 Hi Rod Merril has been through the mill. I only had a SAH with third nerve palsy not additional procedures and my behaviour in the first few months was very similar. I used to get very confused and sometimes garble a load of rubbish I also used to get words mixed up and struggle to find the right words so very frustrating. It might be useful to find out if there is a dedicated SAH nurse at the hospital where Merril was treated some also have support groups and for your own peace of mind it may be worth going as you will meet other SAHers and be able to see that Merril's behaviour is very similar to others. I know the first time Morris came with me to meet a couple of members from the site all three partners breathed a sigh of relief when they realised that all three of us displayed similar traits that had worried them. The information sheets on leaving hospital only cover basics and recovery is different for all of us. Give Merril my best wishes and big hugs to you. Janet x Quote Link to comment Share on other sites More sharing options...
Guest ElaineW Posted May 18, 2009 Share Posted May 18, 2009 Hi Rod - I certainly don't think the comments Merrill makes are anything to be alarmed about I get some wierd and wonderful things coming from mum even now and phone calls followed by another phone call a minute later about exactly the same thing. As regards remembering to take tablets -I would get a little pill box - you can buy them with several compartments and some in fact have timers on. Mum puts hers in each day - morn, aft and evening. It does help. All the best Elaine \ Quote Link to comment Share on other sites More sharing options...
rod123 Posted May 19, 2009 Author Share Posted May 19, 2009 Hi thanks all very much for your comments i learn a little more every time and it really does help me to understand what is happening thankyou Rod Quote Link to comment Share on other sites More sharing options...
rod123 Posted May 19, 2009 Author Share Posted May 19, 2009 Hi again and before i start thanks for help i've received fromeveryone. the last couple of days have been very good for Merrill and when she has a good day i have a good one as well. when she got up this morning she was the best she had been since the start of this, after about 3 to 4 hours after she has been up tiredness kicks in again things start to get a little worse which i think proves just how sleep influences this illness but fingers crossed for a continued improvement and hopefully not too many more steps backward, all in all feeling much happier today. Hope your day has been just as good and if not maybe it's your day tomorrow, Thanks for reading Rod Quote Link to comment Share on other sites More sharing options...
Karen Posted May 19, 2009 Share Posted May 19, 2009 Hi Rod, The key to recovery in the early days, is definetly recognising the need to rest up and take some quiet time, a nap or a full on sleep..... You seem to be able to recognise those signs, when Merrill is starting to tire ...... sounds as though she is doing really well, considering how poorly she has been. Really glad that you've had a good day and with time, things will get better and better.... K x Quote Link to comment Share on other sites More sharing options...
Louise Posted May 20, 2009 Share Posted May 20, 2009 Hi Rod In the early days naps are good, even full on sleeps, Merrill day should revolve around them at the moment, even now sometimes Ronnie know's I'm tired even when I think I'm not.....there's nothing like a 'power nap' maybe for a bit you should write down in the book what meds are taken, do it together its as lot to remember to do.... I found it very difficult to remember everything in the early days.......for me I'd argue too but it was more frustration that I'd forgotten or didnt understand Ronnie had to remember that I had trouble understanding & that the short term memory was exactly that..... take care Louise.x Quote Link to comment Share on other sites More sharing options...
AndyH Posted May 21, 2009 Share Posted May 21, 2009 Hi Rod, Its very early days mate. I have been looking after Heather for 4 years now although these days she is pretty much independent! In the early days, in hospital Heather was incredibly confused. She would overhear other peoples conversations and for a while what she heard would be her reality. She once told one of the nurses that she was a dog called Sally and she lived with a woman called Hazel. Another time she told me that Kurt Cobain was married to her Aunty. As alarming as these incidents were at the time nowadays they are a source of amusement for Heather and I. Nowadays she may be slightly confused but only on occasions when she is extremely tired such as on waking etc. The memory thing in regard to medication was one that we had to deal with as well. We eventually got a pill box with an alarm fitted. If Heather does not take her medication I get a phonecall! It is a service based in Leeds for people with issues like Heathers, its free too! Not sure where you are from or if the service exists in your area but have a chat with the hospital social worker about it. Or even Headway. Things will change and move on. Be patient, recovery takes time even when its just a broken bone, this is the brain we are talking about! Take care Andy Quote Link to comment Share on other sites More sharing options...
Slim Posted May 22, 2009 Share Posted May 22, 2009 Hi Rod and Merrill Hope you've had a good one today. I can only echo what everyone else says it is indeed very early days. Like Merrill I also had hydrocephalus. In the first few day I had a very limited memory (A bit like Dory in finding Nemo) My Husband is a gem, but in that first year particuarly the first few months he bore the brunt of my frustration. I feel awful about how I treated him but I genuinely couldn't help it. I can't explain it but he did really tick me off. If things went missing I was convinced he'd hid them on me for a laugh, in the hospital I told the nurses he'd stuck his finger in the drain in my skull to wake me up. bizzare things like that. I genuinely believed that, after all it could be the only reasonable explantion. I was happy for my mum to look after me, I found it really to hand over the reigns to my partner, sort of loss of control. made me less equal somehow. (Obviously I only see this in retrospect) The emotional outbursts where the hardest things to cope with for both of us. I thought I had lost the plot but then about 9 months into my recovery It was explained I was suffering from emotional lability an that it was an extremely natural part of recovery to have these outbursts. For me after that first year they had gone. Now it just feels like a very bad dream. Ask Merrill what you can do to help her, the book is a great idea. she will recognise her own hand writing and trust it. I found structure very helpful, meals at set times etc. (I personally completely flipped, I never had set meal times) found that I was reassured by knowing what was happening. Couldn't cope with anything sprung on me. Most important and best advice from this site is for Merrill to Listen to her body and rest when she needs to. You take care of yourself as well you've both had your world turned upside down. Take heart in the fact it is still very early days. Take Care Aine xox Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.