My wifes SAH

[Guest joanne]

Hi Steve

Hope both you and your wife are doing ok. Short term memory loss...still have that (SAH 14 Nov 2008), to the point where I forget mid sentence what I was intending to say...names of people and things are the worst. I went to Asda the other evening for one thing and had to phone home to ask my husband what I had gone for...that made me feel really stupid and a little low for a while.

The aftercare from the hospital I was in was/is non existent, but my GP has been fantastic. However most of my information has been gained from information on the net and this website and forum.

Your wife just needs to listen to her body and rest as much as possible. Some days she will feel like doing things and others just sitting down takes it out of you.

I initially did the food shopping online, it took me hours nad then half of the stuff I thought I had ordered I hadn't. I'm ok shopping now, until I meet someone and we start talking, then I've completely lost it and come home with all sorts of things...but I can smile about it now.

Take care

Jo

[MUTTI]

HI STEVE

I WAS LUCKY JIM TOOK A VOLUNTARY LAYOFF FOR 3 MONTHS. I SEEN 2 NEUROS BEFOR I WAS DISCHARGED I HAD TO BE ABLE TO WALK AROUND THE WARD, BUT AFTER I WAS HOME I TOOK A DOWN TURN AND WAS HAVING SUCH AWFUL SPASIMS I COULDN'T HARDLY WALK OR EAT.

JIM AND I WENT TO THE STORE RECENTLY HE TOLD ME HE WAS GOING TO GET SOMETHING AND ONCE OUT OF SITE I COULDN'T REMEMBER WHERE HE WENT. WE NOW HAVE A MEET POINT WHEN WE GO TO THE STORE SO IF I CAN'T FIND HIM I GO THERE, SOMETIMES I FEEL LIKE A CHILD.

KAREN GREAT ADVICE ON THE RAILS, THEY HELP.

BEST OK LUCK XXX EVELYN

[Guest Beth1957]

Hi Steve

I went to Asda the other evening for one thing and had to phone home to ask my husband what I had gone for...that made me feel really stupid and a little low for a while.

I've done that

[charty]

Before I came out of hospital they did an assessment to see if I could make a cup of tea and also walk up and down stairs. When I came out my daughters took it in turns to stay with me for a couple of weeks, Jo said one day she was worried when she nipped out as to what she would find when she came back! but I was ok. Had to be reminded about turning off the cooker and things that were simple but I learnt them all again eventually. Did shopping on line as well. Much of the early days I dont really remember.

caroline

[Guest stever]

Once again,thanks to you all for your responses,they really are uplifting and reassuring.

I dont know how far this will go,but it might be helpfull for others in the future.

The story is as follows:-Tina was transfered to our local General hospital late saturday (7/02/09).When visiting on sunday,I was told by the staff that a consultant would be round monday to arrange a recovery package for her.

At mondays visit,I was told that the consultant had been and a package had been put in place,but nothing was likely to happen until wednesday at the earliest (everything takes time).

At tuesdays visit I asked what the lastest state of play was, and was told that they were preparing her for home.I questioned this as no-one had seen her for any kind of assessment,and,that I thought I was unprepared to be able to look after her properly at home.The staff said "why what do you want" I said that I had been on the internet and on BTG site,and felt that at least a visit from an Occupation Theropist would be good. The staff said they would arrange this. I said,but why should I have to find out about these things,and then have to ask for any kind of service.This question went unanswered.

NOW THE INTERESTING PART

(for your information) Tinas current status is that she has no physical problems (luckily),but like many has short term memory loss and bouts of extreme confusion.

Tina works for Social Services,so,not knowing what to do,I thought lets use what avenues I have,and see if I can find a way of pulling some strings to ensure Tina gets the best of everything available,and is entitled to,to assist her best recovery now and later.

I rang her employers and asked if they could point me in the right direction,using any contacts they have who could help.

The first contact was Headway,and they have been extremely helpfull,and I am due to meet them soon to discuss what they are able to do.

More interestingly,I was given the name and number of the top serious brain injury administrator for our region(who is based at our local general hospital).I rang this person,not expecting to get a reply,however,this person rang me back within a few hours.

I explained the whole story (as above) to this person,who firstly was shocked that nothing had been done.This person said:-

"do not accept any discharge until a full and satifactory care package has been put in place, this should cover,a social worker,occupational theropist,an intermediate care plan to cover minimum 6 weeks, an assessment to possibly refer to Neuro rehab,and that a whole home care package is arranged and put in place"

This person also said that if I was unhappy with either the speed,or details of the package,to ring this person when I was at the hospital,and this person would come and meet me and the neccessery people concerned to sort this out.

The hospital,on wednesday,had contacted the discharge department,and in liason with myself,would be putting together a total package.

I will keep you informed as this progresses,but it would seem a lot of people may be missing out on assistance that they should be receiving.

[Super Mario]

Glad you have been able to put actions into place for when Tina is discharged.

I didn't say earlier because it seemed so negative that all I had to do was climb some steps, which I did with difficulty, balance no good, to see if I was fit for discharge. This was at the general hospital I had been transerred back to. I have some horror stories of there that I won't go into, memory was rubbish but there are certain things that stick.

I was sent home with no care whatsoever and I thought that was that. It was only by a chance meeting with someone I knew who worked on a specialist stroke ward who suggested I went to my GP and request physio for my balance problems. It was only then that I was seen by an OT as well and given aids to help me. That was 6 months down the line. I do feel though that had I been given physio earlier in my recovery I may have been able to overcome some of my balance problems.

Aftercare, as far as I can see, is almost non existent unless you have someone to fight for you.

Again all the best to Tina and yourself.

[Cal]

Hi Steve,

My husband Jim also suffered a SAH. His was a non-aneursym SAH. Jim was the same as Loz is. Very confused and scared. I do think it was in part the medication he was on along with the fact that he was truly afraid of what had happened to him as it was a frightening event.

I know it can be hard but try to put on a brave face and think positive. I found that talking to Jim about everyday happy things did help somewhat. Time, love and hope will get you both through this.

My thoughts, prayers and love are with you both.

Cal

XXXX

[Guest Beth1957]

<snip>

I will keep you informed as this progresses,but it would seem a lot of people may be missing out on assistance that they should be receiving.

Interesting! Thanks Steve.

[Cal]

Steve,

In reference to your question regarding taking care of your spouse after an SAH. When Jim came home, (which was way too early and without any type of plan in place other than putting him in a wheel chair and pushing it to our car) nothing was given to us other than a prescription to fill. BTG was and still is a huge part of coping with recovery for us.

My job thankfully has wonderful caring people. I was able to stay home for a couple of weeks with Jim and then slowly started back to work a few hours a day for a couple of months until I was comfortable enought to leave Jim.

You seem extremely lucky that you have the contact in place to help your wife with her recovery. Jim did not receive any physical therapy and has been told that he is weak in his legs because he could only sit for weeks without moving.

I am thrilled that you have researched and found help. Do not let anyone tell you NO. Fight with all you have to get the help you need. I am sure it will make a big difference in recovery.

Cal

XXXX

[paul99]

one thing reading this posting and i have spoken to steve you are entitled to have the following before discharge from hospital reguardless

1 a full work up by phyisos

2 an assesment by occupatianal threpy including a home visit with sufferer to make sure they can manage at home in respect of moving around hand rails toilet aids and hand rails

3 a care package for long term nueroligical conditions includeds confusion and short term memory loss thats the govenment policy and part of the nhs and social services mandate its the law

4 they are also responsible to ensure that aftercare is in place before discharge and if appropriate day centre care up to three days a week as part of the rehab of long term nuerological care issued by dept of health may 2007 updated april 2008 and is on their site under longterm nueroligical care i hope this will help anyone who falls into the no info from hospitals steve as i said in pm this stuff is available to anyone and the system cant buck the law if they do then they leave themselfs open to legal issues i hope no one objects that i have placed it on for everyone to see if it helps one then its worth it

its making very hot under the collar because it seems that people are being neglected in what should be readly available and you shoudnt have to shout to get the help you needed right at the beginning

[Guest ElaineW]

Hi Steve - I am a carer - my mum (aged 75) had her SAH 8 months ago and from what I can gather short term memory is one of the most common (if not almost a definite side effect) of this traumatic event. My mum's short term memory is I would say the worst way in which she has been affected so although very frustrating (more so for your wife) I should try not to worry too much about this. Mum was also hallucinating in hospital and talking lots of nonsense. Everyone's journey is different and there will be a lot of ups and downs, my best advice to you is not too get too depondent if your wife seems much better one day and then not so good the next - I think this is part and parcel of the months ahead. It will get better and if you are anything like me I always had 101 questions every time I visited the hopsital but don't be afraid to ask. This site offers a host of advice once you find you way around it and you can follow lots of peoples stories (who often have posted weekly if not daily) so you will find very interesting reading. Find some time for yourself too as it is very hard on us carers too.

Elaine