Our Little Family Has Been Shook To Its Core.

[cxw1219]

Hello. My name is Ben; I just wanted to use this forum to get a few things off my chest before I go mad.

Janey, my 32 year old wife had a spontaneous SAH 5 weeks ago – and is facing months in inpatient rehab.

We have a 9 month old daughter, Arianna.

This is what happened:

On the 10th of June I was on my way back from work when I got a call from Arianna's Nursery (Jane had recently gone back to work as a nurse).

Nobody had picked up Ari that afternoon.

I thought this was a bit odd, I called Jane but there was no reply on land line or mobile.

My work is a good 90 minutes drive from home, so I called back the nursery – and they kindly sent someone around to our house to see what was up; this wasn't like Jane at all.

Through the front window they found Jane collapsed on the floor.

They called an ambulance, who kicked the door in and were about to take my wife to St Thomas' when I arrived.

On arrival in St. Thomas' A&E Jane was intubated and sedated then taken for CT head.

The CT showed a high grade SAH with mid line shift.

The scans were discussed with the neurosurgeons at Kings College and Jane was transferred there for further treatment.

On arrival at Kings ITU Jane was first taken for a cerebral angiogram. This showed an MCA aneurysm. The Neurosurgeon then talked to me - it was midnight by this time – and said that he wanted to do a craniotomy to clip the aneurysm and evacuate some of the clot in her brain.

Jane went to theatre.

By this time my parents and a couple of our friends arrived. They stayed up with me all night until Jane's operation was complete – about 6am.

Jane was 'flat' on ITU for a couple of days, but when she did finally wake up – it became clear that she had a dense left hemiplegia, being completely unable to move her left arm or leg at all.

******.

There was other neurology of course – droopy face, slurred speech, slightly dodgy memory – but those things seem to be slowly improving with time.

Jane was transferred for inpatient neuro rehab a couple of weeks ago. She has just completed their initial assessments and today we have sat down and had a family meeting with the team.

She has been given a provisional discharge date in October – and their aims are high of being able to get her walking again, and you never know, maybe the arm will come back too one day.

My difficulty is that (quite rightly) nobody can say “everything will be fine” or “No, your wife will never walk again” or make any reasonable prediction of how things will work out for Jane – there seems to be so much variation in how people recover. As a result it is impossible for me to plan or make arrangements for anything. Taking things “one day at a time” is starting to get very tiring now.

Anyway. That is enough of my rambling. Going to go back to hospital now.

Ben

[KelBel]

Hi Ben

Sorry to hear about Jane's SAH. It must be an incredibly difficult time for you with such a young daughter to look after too. I hope your family, friends and work colleagues are all rallying around for you and helping where they can.

Glad you have found the site and I know you will find the support and advice invaluable. There are some amazing people on here.

I would imagine that a great person for you to chat to would be Paul on here. He has a wealth of knowledge with regards to SAH and rehab following his wife Lin's ongoing recovery. I am sure he will pick up on this thread soon and offer you some fantastic advice and support that may be more specific to your situation than many of us may be able to offer from having suffered an SAH of varying degrees.

Good luck for Jane's continued recovery.

Take care

Kel x

[blueday]

Ben...

Your life has been turned over.........at the time.

You have been left in the driving seat for your family....so you will need some strength, and wise thoughts.

It has so recently just happened your life is in turmoil. Right now you worry about the worst...the fears...your daughter. But just stand back, you know Janeys strengths and good points. Even her weak points too.

She went through her own battle on her own. Now you have your own battle too.

It's too raw now for me to say the wrong thing. She will improve, give her time.

One day you'll all be dancing again.

Power to your strength Ben.

[maggie]

Ben you must feel overwhelmed by what has happened,it's frightening I know. It's so hard for our families to wait and see what happens to us but it is like blueday says Jane is fighting her battle,you need to be strong for all three of you so try to get rest and accept as much help that comes your way. Push any negative thoughts away and lets hope for good results soon. Maggiex

[sallym25]

Hello Ben,

It is such early stages for yourself and Janey. I am sure you will find this site very helpful. As Maggie says, you must remember to accept help offered and make sure you rest. You need to keep yourself strong. One of the best pieces of advice I remember was my husbands friend telling him to 'remember, this is not forever.' He was so right, though we did doubt him at the time. Things can and do improve dramatically with the help of time.

Kelley too is right when she says you should speak to Paul. He has looked after his wife Linda for quite some time now since her SAH. He will catch up with you soon I'm sure. Meanwhile I hope you and your family can rally round to help each other. Janey is so young too. She needs you all so much right now.

Look after yourselves and take care. Hope you will keep us updated on progress.

Love to you all Sally x

[JayKay]

Hello Ben - my gosh you are going through it! I'm glad you found us. Everyone on here is so lovely and everyone has experience of SAH and/or stroke. 5 weeks is nothing, as I'm sure you'll get tired of hearing!! But it's true, it's very early days. I've been on both sides as 4 years ago my mum had a severe stroke. When I think back, it was awful - she got all the complications and infections you can imagine, couldn't speak or move etc. But now she is living alone again (has been for a couple of years) with just the help from a cleaner and a home help. My sister just commented this week on how much my mum is using her right arm compared to before, so you see, improvements continue for a long time!

Wishing you all the best. Make sure you get lots of rest, and accept help from family and friends where little 'un is concerned, or hot meals, or what have you. Take care!

[paul99]

hi ben

ive just picked up this thread im sorry about jane yes it is a kick in the goolies ben i know how you feel everything turned upside down and you have no control so to speak you have to rely on others to look after jane and its not nice or comfortable and seeing your loved one in that condition im pleased that jane seems to be making progress and i wish her to continue to do so from what you say it was janes middle cerebral artery that gave out the hemiiplegia would have been mostly caused by the brain being squeezed by the pressure within the skull prior to surgery jane being able to recover this quickly is a promising sign and maybe over a period of time jane may get back some of the movement in her left side .

being that you have been turned upside down and inside out you wont be able to put everything into nice little boxes and its going to take time to get things sorted in your own mind you are right and quite understandably frustrated because no one will tell you whats going to happen and how soon will it be all right this is down to the drs and staff not knowing how the brain will recover no dr will tell you the final outcome because they don't know period i know kings and tommy's very well as they were in my patch when i worked in the ambulance service and i have worked in both hospitals

i know also what you mean by the saying one day at a time grr or stay strong it did my nut in all i can say is that jane will do her best to get as much as she can back she is young and proberly feisty and being a nurse is going to very angry and frustrated as to what has happened to her and will be very despondent this is where you come in and its going to be hard you are going to have to have a smile on your face and always be cheerful for her and ready to give her a cuddle when the tears come and they will because janes going to angry and frustrated the fact that janes going into rehab soon is good and they will work her hard to try and improve her outlook and mobility when jane is ready to come home the hospital will make sure everything is and will be in place at home before she leaves rehab will go on for a fairly long time even when she comes out of hospital they will sort the transport out for her to do to and from hospital so its too early to say what is going to happen. will you have to look after her when she comes home what are you going to do this is questions for down the line a bit i take it you live local to tommy's or fairly local do you have any support apart from the family and your daughter remember you need to have some you time where you can relax and try and unwind god the times i was told that have you started a diary yet for jane so she can read it when she is more able because she is going to ask what happened when it happened this will be painful for you to write but boy does it get it all out of your system its a part of your recovery as well and i still keep Linda diary update every day if you wish Linda's story is under carers support my darling lin don't worry if you don't want to because you do have enough on your plate at the moment i will pm you my number should you wish to talk or rant and shout use it any time i will close for now wishing you and jane and your daughter well chin up ben

[Tina]

Hi Ben...a very warm welcome to BTG you have certainly come to the right place for support and advice at this very difficult time. The others have said it all. Hang in there...wishing Janey, your daughter and you all the best. Look forward to hearing more from you. Take care love Tina xx

[Louise]

Hi Ben

Warm welcome to the site....

Its a very worring time for you everyone has said much of what I would, but it is very early and Im afraid you do just have to take it one day at a time....

Glad you found us tho,

take care

[Liz D]

Hi Ben

I'm so sorry to hear about your wife. I think it's an awful time for family. I know my children and husband struggled with things at first. People would say to me that I must have been very frightened but I always replied that my family were more frightened than me. It is hard taking it one day at a time but recovery is a slow process and we all recover at different paces. You have to look for very small signs of progress, she's awake and that's a big plus. They can't give you very definite answers because her brain will take it's own time to heal. But you have to look after yourself, take every offer of help that comes your way.

Take care.

[Lin-lin]

Very sorry to hear about your present circumstances. It's hard when your world turns upside down.

I hope the last few days has brought some improvements.

The 'not knowing' is very frustrating and your reaction to it, is quite rightly, one of anxiety. You feel that you want to know the exact circumstances so you can plan for the future.

Keep Janey in as good spirits as possible. I firmly believe that the calm environment around me in those early weeks helped.

You will need looking after too. Post your updates and worries to us and we'll do our best to answer.

I wish your family nothing but the very best.

L xx

[zoe1zoe1zoe1]

Hi Ben,

I have sent you a private message.

[Ash]

Hi mate..

I know exactly how you feel, my mum had a SAH 2 weeks ago, so i can relate to everything you wrote. Keep posting here when you can, i know it's been a real help to me and everyone here is really supportive and full of good advice. Good luck with everything and all the best to you and your family...Ash

[laanka]

So sad to read about you and your family.There are no words but my heart goes out to you all.

[cxw1219]

Wow.

I am humbled by the kindness of strangers.

You all really made me feel a lot better, and not so alone.

Jane is continuing in neuro rehab, plugging valiantly away at her various therapies. I must hand it to here, I could never handle this as well as she has. She has been given a provisional discharge date in October.

Arianna is now living with my mum for a bit, as I have returned to work. This has been a huge strain on Jane and I, and we miss having her here so much.

My current worry (aside from the usual) is trying to find a new place for us all to live.

The OT came 'round to our house the other day for a visit. We rent a two bedroom house; but it is far from spacious. When she was saying '...well I THINK the wheelchair will fit through there if we get a slimmer model, and take the wheel rims off, oh and take the door off it's hinges...' I knew it was time to move.

So I am now looking for a larger, ground floor, three bedroom (because someone will have to look after Jane & Arianna when I am working nights) flat in London, for the same money (or less!) than we were spending before.

Once again, thanks for all your kind comments.

Ben

[Karen]

Hi Ben,

Jane sounds as though she's doing well and I know that you and Arianna (lovely name by the way!) and the thought of coming home to you both, will be something that spurs her on.

Good luck with the flat hunting! Hope that you will keep in touch and let us know how Jane is getting on over the coming months. xx

[maggie]

Hi Ben,thanks for posting your up date. Hope you are getting as mush rest in between visits to Jane as you possibly can and hope you get a suitable flat asap.Wishing you and Jane much luck and a good recovery.Keep us posted Maggie x

[Lin-lin]

Hi Ben

Thank you for taking the time to update us. We appreciate you're under a lot of stress and so it was kind of you to find the time to let us know what's happening.

It was very gallant of you to say that Jane is coping valiantly. It's amazing what the human spirit can muster in a crisis.

May I say, that I think you are coping very well too. I appreciate that there has probably been tears, frustrations and anxiety; but this is a normal and healthy reaction to a big event.

Well done to both you and Jane in finding the strength to adapt to your new circumstances and striving to make the best of your situation.

It must not be forgotten that a SAH doesn't just affect the patient; it ripples to family and friends too. Don't forget that you will also need support on occasions.

I hope Jane continues to make improvements and please send her my best wishes.

L

[Skippy]

Hi Ben

Its sounds like Janey is improving already. Taking one day a time can be tiring and very stressul and anxious, but unfortunately there are no rock solid timescales for recovery. Everyone is different and timescales and recovery vary greatly.

Take heart though that she is getting the best care and they are doing all they can to make sure she is home for the October date. You never know, she may walk through the door and will have surprised everyone.

Stay positive and most of all stay strong - Janey will look to you for support and encouragement - I know I did my husband. Take care of yourself too - make sure you eat well and rest plenty when you can.

Take care and so very glad that you found us.

[paul99]

hi ben

its good to hear your janey is doing ok and im hoping she will keep on improving as the days go on

will you please contact the enablement officer at the hospital they are within the social workers unit they are people who help with the change from hospital to home it sounds as if the home is unsuitable for janey to go back there as it sounds like a private hiring the enablement people will help find a place that is suitable for wheelchair users and also make sure that the equipment that janey will need is in place before janey comes home it may mean you will have to move to a place they can find and it will proberly be local authority housing talk to the o/t who visited you and get her to help you find somewhere thats what they are there to do help they wont discharge janey until the property is right for her don't forget you will be able to claim dla for janey and there are loads of benefits which janey will now fall into i will pm you my number if i can be of any help regards to you all and just make sure you have time for yourself take care

[cxw1219]

Just a quick update.

Jane is now starting to make some progress:

The biggest news is that there is now a flicker of movement in her left leg, and her face is now starting to get power back too, but her arm is still the same - and getting quite painful because of her shoulder subluxing.

I have found a suitable flat (ground floor, decent wheelchair access); we be moving at the end of August, and I cant wait to get Jane back in October - I miss her so much.

I have started a new job last week, and unfortunately I can't expect the same level of support that my previous employer gave me - but so far they seem reasonably understanding that I may need to take time off at last minute.

With respect to Paul's comment, we tried to contact the unit social worker about two weeks ago, but they have still not come to see us. It would be nice to know what kind of help to expect from social services when Jane gets out.

I hope this update finds everyone well, and thanks again for all the support everybody has offered to get me through the darkest days.

Ben

[zoe1zoe1zoe1]

Hi Ben,

I have sent you a message as our situations are very similar. Richard now has movement in his left leg but he too is suffering the pain in hi sleft shoulder - keeps asking me to take him some deep heat.

Please feel free to message me back.

Zoe.

[laanka]

Hi Ben

Great to get the update and some positive news.I dont know where you are in the country but in the local area here you would be looking for a full assesment of need prior to discharge .Much easier than waiting until discharge but it is early days as I am sure they wait until almost fit for discharge as things change all the time.Local areas provide diffrent services and a lot depends on the finances available to the local council.However you will be looking for a benefits check and the support of a welfare rights officer .Look about on the hospital notice board for local support groups who should be able to advise of which door to rattle

.There is a saying the noisy wheel gets the oil and sometimes you need to make lots of noise.

Take Care wishing you well

[paul99]

hi ben

im pleased to hear that janey is progressing in respect of the enablement team ask the sister on Janey's ward to ring them and ask for an urgent visit or contact the pals at kings and also ask for a s/worker who will take up janeys care and welfare to help you janey will need a full work up before she is discharged from the multidisciplinary team at the hospital i thought i pmd you my number will do it again tonight just click on private messages if i can help i will chin up mate you are doing well just make sure you have some you time and try to relax somehow hard i know but try take care