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Guest Hannah
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Guest Hannah

Hi all,

Just checking in as I haven't written a post for a while although I do lurk around the boards a few times a week catching up with everyone on here has been up to.

Just a recap really, my mum had a SAH in late September last year and after various trials she is now in a speacialist rehab unit in Norwich. Still. Improvements are coming quickly she can now walk using a frame and is allowed out of her 'cell' on Saturdays to come home overnight. I feel bad for saying it but I can't belive how much hard work this is! Although I say there are so many improvements I suppose I am comparing this to lying prone in an acute hospital ward, when you take in the whole view of how things were there is still a long way to go.

The main difficulties at the moment are dealing with distractability when doing a task and a lack of insight in what she can do. Its very difficult trying to balance safety and keeping her on track with what she is doing when she feels as though I am nagging her. It sounds awful but sometimes mum does act like a child in so far as testing boundaries, almost manipulating a conversation so that I am left with nowhere to go go except where she wants me to. This doesn't seem to make sense, an example is when she tells me that she wants to book a short break away this weekend. Now I know she is only allowed home for a single night and that mobility is still severely limited so this cannot happen just yet, but mum is unable to let it lie accuses me of being unreasonable, trying to put barriers in her way etc etc almost constant niggling, I can't not reply because she won't let me and she can spot a plattitude a mile off.

In someone who hadn't been through what she has you would almost think that she is deliberately trying to wind people up. All in all very difficult and very wearing. Or perhaps its me? I just try and stay patient and know that she is still improving.

I can't believe we are now six months in, in some ways it seems like yesterday. The doctors hope that she will be out of hospital in the summer - which is something that we are all looking forward to.

On a different tack (in my long and rambling post) I remember posts a while back on hereditary issues and Karen posted a good link to the Val Hennesey Trust page. Well, I went to the GP a short while back for various other things and I mentioned what had happened to my mum - imagine my surprise when I get a neurosurgery outpatient appointment through.... now I wonder what thats all about. I'll let people know if its anything interesting or if this consultant has radically different views from everything I've read.

Sorry about the length

Take care

Hannahx

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Hi Hannah,

Really great to hear from you and the update on your Mum. I can imagine that your Mum probably is hard work when she tries to push the boundaries and also your patience....but in a strange way, it sort of tells you that she is feisty and spirited enough to keep fighting and keep going with her recovery and she isn't going to give in....which sounds pretty good right now.....probably not for you though, as you're on the receiving end!

I think that you are entitled to say that it is hard work, being a carer....so don't feel bad for saying it, it's only natural to feel like it....I know that at times, I also have my childish moments.....mainly it's frustration of not feeling that you have any control over your life and how life has altered beyond recognition at certain points in your recovery. I must say that I don't have too many of them, but mine seem to stem from the physical stuff that impairs day to day life and sometimes it just gets on top of you. There are lots of emotions to deal with, for the patient and the family, especially when recovery is slow.

There was a good article in the Daily Mail yesterday, about a lady that had a brain haem ..... all the normal stuff, like lack of physio, rehab etc...but she was very poorly and after 4 years, she's been able to return to work on a part time basis. I tried to source the article from the Mail's website....but was unable to find it....which is typical! Anyway, it just shows what can be achieved if you can get the help.

Interesting to hear that you've got a letter from the Neuro Surgeon....hope that you will let us know how you go.....the heriditary factor is an interesting one. A week or so ago, I found out that my Grandfather died from a SAH......but at least he was in his 80's.

Take care Hannah and sending love to your Mum...

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Hi Hannah

Nice to hear from you updating us, I guess your Mum trying to push the boundaries is she is getting a lot better.

Knowing what my husband went through with me I’d say that it is ****** hard work being the carer so don’t beat yourself up about it, like everything it will take time & pass, sometimes I used to set myself little goals maybe this is your Mum’s one? Wanting a weekend away maybe that could be the goal in the summer when she’s finally out, Ronnie took me out for a meal the night I was discharged I’d moaned & moaned about it, it shattered me something terrible but it was kind of like being normal again………..

Take care sending hugs

Louise.xx

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Guest bthill

Hi... it was very interesting hearing your point of view 6-months in. We're two months in now with my father in law, Gene, and it seems like yesterday he had his fall and SAH diagnosis.

The pace is excruciatingly slow, but the fiestiness is there... and when he's awake... he is funny, trying, obstinate, anxious and everything in between. We know it's going to be a long, long journey... and reading your update gives us a good insight into what to expect 4-months from now.

Continued success and hang in there. You're doing the right thing for your mum. bob and susie

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Hey there

Glad that your mum is improving. Hang on in there and try to stay strong, thnk of her as a child when she has a strop and just do what is best for her regardless of how she may make a fuss.

From the hereditary point of view, I read an article in a health mag about SAH's and apparently GPs are sayings that they will send any sibling or child of a, SAH sufferer for a routine scan to rule out any hereditary factors - sounds like its a precaution. I found out a few months ago too, that my great grandma died partly of a ruptured aortic aneurysm amongst hypertension and emphaseamia - so the hereditary factor has to be looked at I guess.

TTFN

Sami xxx

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Guest Hannah

Hi all,

Thanks for the support and comments. Things have gone a little bit wrong since my last post. You may have seen on the news recently about the C-Diff outbreak in Norfolk, well my mum has had D+V for the last couple of weeks, so in the past week shes had a few tests - luckily she is clear of the bugs, but they are not sure what it could be - maybe hydrocephalus... If so this would certainly fit in with how she has been recently with the irritability and increased headaches.

They have booked her in for an emergency scan this week to see if she needs a shunt. I have read around the shunt subject a bit and I know that there a few risks attached infection, over/under draining etc - I know that there are a couple of people on here that have had shunts fitted, how was the experience? Was it as late on in the progress as 6 months? Have you suffered any complications? Do you have to take any special precautions in day to day life?

Take care all, Hannahx

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Hi Hannah,

Sorry to hear that your Mum is going through the mill again.....hope that she gets better soon.

Yes, some of the guys on the site have had shunts.....so I'm sure that they'll be able to help you out ....

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Hi Hannah

Sorry to hear about your Mum, up's & down's

I've got a shunt, sorry I cant tell you anything about the experience I knew nothing about it, its just part of me now (no pun intended) no, no precautions maybe though I just watch that I dont hit my head a bit more but then who dosnt :roll:

Hope you let us know how she gets on, take care of yourself

Louise.xx

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  • 2 weeks later...
Guest Firefly

:D I am new and it is nice to meet you. I am so sorry about your Mom!! I know how difficult this is on you and God bless you for taking care of her!

I know 6 months seems like a long time, but it is very short for her condition! :( It sounds like she is having her share of complications too.

I think it is harder on the care takers than us who are the patients sometimes!! I am going on 2 years of a rupture with complications and I am still re-learning... It takes the brain a while to heal and re-learn things.

It sounds like she is a tough lady! A fighter. It is normal for people with brain injuries to act out violently or unpleasantly. So don't take it personally!! She can't help it, and she doesn't mean it or understand what is going on. You are a wonderful daughter tackling a big job!! :wink: I will keep you in my prayers!! Take care and keep us posted on her recovery!Love Tricia

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Guest Hannah

Hello all,

Thanks for the comments etc. Well - Turns out it was the hydrocephalus. Easter was spent back in Addenbrookes for shunt surgery..... wow that bought back bad memories waiting in the same room as last time. The surgeons were clear to point out that this was a whole different ball game from last time and although I'm sure there is no such thing a 'simple' brain surgery, this was at the easier end.

Mum has done so well! Obviously she now has a new and interesting hairdo but the effects are great. It's quite difficult to get her to gauge how she feels now in comparison to before the latest surgery because of her memory, but as an informed outsider she seems to be doing great. Her mood has improved, headaches have lessened, incontinence has improved and now she is back in the rehab hospital, her mobility and balance seems to have improved no end. She walked today using walking sticks for the first time!

And of course.... the constant projectile vomiting has ceased...which is nice :D

Soooo... all looking good again.

Take care all

Hannahx

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Guest Firefly

:D I am so glad they got your Mom fixed up!! She should improve more and more as time goes on! It just takes time and patience!!

The more stimulation the better! Love and a sence of humor at home help me get through it all!! I am glad her nausia is better!! Make sure she stays hydrated, gets lots of rest, sleep & love!! :wink: I will keep her in my prayers and God bless you for taking care of her! Try to take care of yourself to! I hope she comes along quikly, she sounds like a strong woman!! A true survivor!! :) Keep us posted, love Tricia

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Hi Hannah,

So glad that your Mum's op went well.....she really sounds like she's on the up now, which must be wonderful for you all. Considering how poorly your Mum was when you first posted on this board, she's doing so well now.

Long may it continue ..... :D

Thanks for the update, it's always lovely to hear how your Mum's getting along...

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