Dont know where to begin

[karened50]

Hi all

I am new to the site so please bear with me.

My husband 48yrs old suffered a subarachnoid brain haemorrhage on 8/7/2012, he had an op the next day to put a coil in where the bleed was, he seemed to come thru the op fine, sat up in bed talking, all the usual things he does, next day fine till 5.30pm then he started rambelling nonsence, had to have a drain put in his brain, more cat scans followed and a few days later he had suffered a stroke which affected the right side of his body, both his arm and leg now have little or no movement, he has also lost his speech, he can only say the odd word yes, no, ok, right, fine, and a few others.

He is still in hospital nearly 3 months later,Physio is still ongoing and he is making small improvements he can stand for a few secounds and actually moves and bends his right leg when he puts his underwear on, it seems to be when he is not trying to do it that he does it.

He is so frustrated and anxious and agitated and is now getting quite aggresive pushing the nurses and myself away from him which is very upsetting, he grabs my arm and shakes me and says "fine fine fine" over and over, its so hard as i dont know what he is trying to say to me i can only guess he is saying "i am fine leave me alone".

As soon as he is dressed, which he helps himself to do, he then lies down in the bed and undresses himself and throws his clothes on the floor and then throws all the bedding on the floor.

The nurses say this is not something they have come across before, this started about 5 weeks ago and carried on for about 2 weeks then stopped, it has now started again and no one can tell me why he is doing this and cant seem to stop him no matter what they say to him. Everyday i go in to see him he is in bed with the curtains drawn around him naked and just curled up on the bed (usually on a wet mattress), i am so distressed i usually end up in tears.

They are now looking at him coming home as soon as i have the equipment at home for him that i need, i know it is going to be hard for me but the only other alternative is to go into a care home which is not something i want.

if anyone can give me any info, tips or advice it really would be much appreciated as i am clueless as to what to expect.

very lonely, sad, scared at the moment

thanks

karen:confused:

[karened50]

think i might have posted this in the wrong place ????????????

Edited September 23, 2012 by Karen
Moved to SAH Discussion Forum

[Daffodil]

Hi Karen. what a scary and sad time it is right now for you and your husband. He sounds a very determined man whose trying to wrestle control back any way he can, not easy I imagine to be around as a witness but im sure it will be an asset in his recovery. I watched a fellow stoke survivor pull put their own catheter and brain drain and we do some pretty odd things in the early days; his brain and body is trying to deal with a ischemic and hemorrhagic stroke so there's a hell of a battle going on there. Are the hospital supporting you and him? Definatly call Headway if you havent already. They can offer you some great advice and reassurance with their nurse led helpline. also there is a charity called Different Strokes which supports younger stroke victims and their families. They can offer more practical help after you leave hospital.

Iim sure there will be others on site who will share more experience which will help you but There is book written by the wife of the singer Edwyn Collins ( he sang 'never known a girl like you before'), who had a SAH with some similar impact to what you describe with your husband. (I wanted to read it to understand what my husband was and is going through after my SAH and coiling) . it helped me appreciate the partners view of this situation and it may offer you some reassurance and hope. It's called falling and laughing by grace maxwell.

My very best wishes to you both. I hope things improve in the coming weeks

[MaryB]

Hi Karen,

I have no answers for you but to agree with what Daffodil said. What does his nneurologist and nerosurgeon say? Do you have children or family around to help?

This is still early on - mine was not as severe but I am amazed at my 1 year mark how I am still improving.

Kind thoughts are sent your way,

maryb

[DawnS]

Hi Karen,

I am so sorry to about the scary time you and your husband are both having. Do you have a strong support network around you made up of friends and family? What help will be offered to you when your husband is discharged, will you get help from carers etc?

You have come to the right place - BTG is a wonderful website full of lots of information, advice and support. It's really good to have people to 'talk' to who understand what it's like.

When I was in hospital I had no idea what I was doing or saying. I have few memories of that time (thankfully) but I do know that I was very confused and nothing made much sense. Everything was strange, even my own reflection in the mirror.

I made use of Headway. Just a note though, when I applied to attend I was told I'd need a social worker in order to get funding. That took 13 weeks, so it might be worth trying to find out about that as soon as possible.

I wish you and your husband all the best,

Dawn x

[paul99]

hello karen

this is a nightmare for you both hubby having trouble and you not being able to be constructive it is still early days for you both hubby is still suffering from the bleed and trying to ajust to what is and has been happening to him i have the odd day where lin kicks off and i found it hard to deal with i have now mastered the episodes where lin has her bouts the next few months are going to be a huge roller coaster as hubby starts to recover

have you spoken to the neurosurgeon since or a neurologist they will be able to guide you and tell you where the damage occured within the brain do you know which area the bleed was ?

there are other things to consider having hubby home do you have children at home it is a hard question to ask that is would you be able to cope comfortably with hubby at home taking the behaivor into question and his current condition

one thing is that hubbys stroke could have been because of a vasospasm which he may have suffered but which can be short term lasting with phyiso if he comes home that may stop or reduced enouogh to be ineffective for him .

i wanted lin home big time but even though im fit and somewhat healthy the hospital placed her into a home i spend everyday with her all day i know that she is being well looked after and although i miss her at the flat im in i can still bring her home for day trips and im able to get her out and about wih a bit of pestering

please dont let the hospital force you into having hubby home before you have done some really deep soul thinking and what is best for hubby and yourself you cant run yourself into the ground ive been there and got the tee shirt karen there is so much more to offer i will send you a private message and my number take care hugs and cuddles from lin and me

[MaryB]

Karen,

The clothing thing may be that some of us find tight or ill fitting garments very annoying and bothersome. He may just not know or care at the moment that he is stripping them off and surely cannot recall he just got dressed. I personally hate wearing anything other than a giant soft cotton t shirt. Socks bother me etc.. anything tight or "touching" my skin.

Sorrry I just thought of this and thought I would share,

Good lUCk , maryb

[karened50]

Thank you all so much for your kind comforting words.

Social services came round on monday and what a loveley lady she is, she ordered lots of things to be delivered to my home for jimmy, bed coming thursday so looks like jimmy will be home soon, i really cant wait.

occupational health will also be visiting soon to see what adaptions they can do to the house to make life easier for me and jimmy, care services phoned me this morning and have said carers will be coming in 4 times a day, so that will be a big help.

Can anyone tell me what kind of things i will have to buy, i have ordered today a waterproof duvet, 2 waterproof pillows, 2 kylies, 12 fitted sheets, what about pads and wipes and things like that will i have to buy them or are they supplied to me, i really have not got a clue and my head is going round and round with all different things.

I was a carer in a physi nursing home for 11 years when i was younger so do know a bit about what i am looking to do.

Its so frustrating whilst he is in hosplital, i know the nurses and carers are very busy and cant give 1 to 1 care 24hrs a day but when i see some of the things that happen i just get so upset, take for instance last night jim and me were sitting on the bed and i was talking to him, a carer came up and without saying a word drew the curtains around us, i asked what the reason was in him doing this and he said "its just in case he starts to take his clothes off".

It makes me wonder what they do when i am not there. he seems very depressed at the minute, they have put him on mild anti depressants which should have by now kicked in but he is till so upset, i have never seen him cry and sob as much as he has this last week, i think its just sunk in what has happened to him, but we still have some laughs as well, i do seem to be able to get through to him, i tell him i love him everyday and will be allways there for him no matter what and i am always getting lots of kisses and cuddles off him which make it all worth while. Am in tears here as i am writing this lol.

We have 3 grown up children of which 1 the eldest is still at home thankfully, we are both going on a moving and handling course before jimmy comes home. i have absolutely wonderful neighbours, i have not cooked myself a meal in the last 3 months, my wonderful neighbour brenda has cooked an evening meal for me every single day, i really would be lost without her, her husband antonio is built like a brick wall and has told me if i need him morning noon or night to phone him and he will come in.

Forgive me for being ignorant but what is headway?

Think i will be making the most of this site, you have all been really wonderful.

Thanks

karen:confused:

[karened50]

someone told me to start a daily diary for jimmy so that if and when he starts to get a bit better i can read it to him to show him how far he has come, i am not sure if this is a good thing as obviously i dont want to upset him as to how poorly he is.

what does everyone think

karen x

[Super Mario]

I think you should be able to get pads on prescription but don't know about wipes. Contact your GP or his District Nurse who will be able to advice you.

Headway is a Brain Injury Association and very good for support. Jimmy will have an aquired brain injury.

https://www.headway.org.uk/home.aspx

You may also have a Stroke Support Group locally who will be able to help. Ask at the hospital or Social Services.

[paul99]

karen

the pads and cleaning items should be supplied by the gp via the district nurse including the kyles and waterproof pillows there should be someone to help get everything you need you shouldnt have to pay anything you can claim all expense's back been there and got the tee shirt

the diary is a very good idea i have been writing lins everyday since her bleed we are now just starting volume eleven i put in everything that has happened including the good and bad news any visitors can put in it as well so when jimmy is able he can either read it or have it read to him i also put in how im feeling when the good things happen so go for it

some carers dont think before they act and can be not as thoughtful as they should be

im really pleased you have some support by lovely neighbours and family but please take note take some time for yourself please if you become so tired you wont be able to do what you want for jimmy good luck on the manhandling course and mind your back

headway is a support group for people who have suffered a brain and head injury a good support group who will help you and jimmy take care

[goldfish.girl]

Hi Karen,

I'm so sorry to hear what you & Jimmy are going through but it is so heart warming to read about the kindness of your neighbours.

I think the diary is a brilliant idea. As Jimmy is improving it will help him to look back and see how far he has come. Sometimes we don't notice the smaller improvements in ourselves unless someone points it out - like when I get frustrated at not managing to have a full day (most days I have to sleep in the afternoon) & someone will point out that a year ago I would sleep much longer or need to much earlier in the day. It's things like this that we sometimes need to be reminded of to realise we are improving, especially in the early stages of recovering. If you think the diary might upset Jimmy, you could just do it for yourself discreetly & when you think the time is right, share it with him then?

Good luck. I hope he is back home very soon & that all the support promised will make things as easy as possible for you both.

Michelle x

[karened50]

Bad day today. Had an appt for a family meeting and honestly thought that with everything getting rolling this week with social services and occy health getting involved it would be about a discharge date for jimmy to come home. well it certainly wasn't. The physio was there and stroke co-ordinator and sister of the ward. they said they are very concerned about the growing aggitation and aggression jim is showing and they are worried that i will not be able to manage him when he gets home.

I pointed out to them that jimmy does get angry when anyone including myself do something for him that he does not want you to do. The thing is jimmy gets very muddled with "yes" and "no". i'l say to him jim do you want a shave and he will say yes then when i go to go in the draw for his razor he will sit up put his hand out and i will admit quite forcefully say "yes" and then i know because of his reaction he actually means "no" so say ok then thats a no then and move away from the draw.

So i asked if they had realised this and got looked at as if i am stupid. Surely if they realise he means no when he says yes then stop doing what your doing and he calms down. The nurse said they have to take what he is saying as correct otherwise they are taking choices and decisions away from him.

GRRRRR i feel as if sometimes i am banging my head against a brick wall.

The physio who spends between 45mins upto 1 and a half hours with him a day says she has not seen any aggression or inappropriate behaviour of him at all, saying that she is so lovely with jim and i know jim likes her very much, when i talk to him about her her is always smiling.

I mentioned to him today about doing a diary and i could put in things like what he has done on that day and new words he says and he said "correct" and we both laughed because that was the new word of the day.

So now for the next 2 weeks i am to go in for 5 hours a day to do all his care for him to see how we go on, they have given me a behavoural chart so we will just wait and see how the next 2 weeks go.

Frustrated is what i am feeling today, i know we will get there its just so frustrating for jim as he cant say what he wants to say and i do know this is why he is getting so angry.

Thanks for listening to me nag on and on.

karen xx:frown:

[goldfish.girl]

Hi Karen,

You are in no way nagging on and on here. You have been flung into an awful situation and you are the person who knows Jimmy best. Staff change overs & the pressure on those staff while on duty do not allow them the time to get to know him well. I only ask as the familiar face of the physio has not provoked any aggressive behaviour.

Good luck with 5 hours per day for the next 2 weeks but with carers coming 4 times per day when he is back at home, is that a realistic time related test of how you can cope? Obviously overnight isn't included in these 5 hours, is he sleeping throughout the night?

If Jimmy understands the concept of the diary and can add a new word and laugh with you about it, do you think he will understand how he will need to behave with you in those 5 hours for the next 2 weeks to be allowed to go home and realise that he will need to continue that behaviour once he gets home in order to be able to stay at home?

I have been looking on-line at Advocacy Services this evening for another issue but did come across some in my area for adults who are unable or have difficulty in speaking up for themselves for whatever reason when facing 'officials'. Can you look these services up in your area to see if that would be helpful to you both?

You are facing a massive undertaking in a role as carer but I'm sure you will know what your capability is and would like the chance to be able to prove this, knowing that there is someone you can ask for help & support if you should need it.

Michelle x

[Sandi K]

Hi Karen, I don't think I've welcomed you yet so welcome to BTG!

My brother-in-law had a severe stroke about 4 years ago. It impacted his ability to walk, move his arms, and his speech.

He said 'no' everytime he tried to talk. This went on for the first couple of years regularly. It's less often now but he still starts many conversations with 'no' and then he will shake his head because he didn't mean to say 'no' but that's what came out. He can always say 'no' easily but has to think and concentrate before 'yes' comes out without a 'no' first. I can see that this frustrates him to no end.

You've got your hands full but from what I can see you are doing a great job. He needs you to advocate for him and you are doing it well. You will need support too and hopefully there are some services available to both of you as Michelle suggests.

Sandi K. Xoxoxo

[Winb143]

Good luck to the both of you and make sure you get a break when he is home via family

I had SAH in 2009 and my husband was told I would not walk and I should be put in home, He disagreed ..phew!!

I was awkward also. I had rows with physio's and cried (pain in the butt)

My daughter saw me sleeping a lot, but coming home was best for me although the house looked different, Then I had shunt fitted in 2010 and it was like hello I am back...

Good Luck to You and husband , hope he makes a good recovery

Wishing you both well

WinB143 xx xx I found singing helped me, my sisters used to sing and I sang along, try it lol it helped my words.

Once again Good luck to you both xx

Edited May 4, 2013 by Winb143

[paul99]

karen

it seems like the staff need to change their attitude but in all honesty you know him and you already know how to handle jimmy i wish you luck but dont let the hospital try to bully you if jim cant do something try another way which he can handle you have my number use it anytime take care

[karened50]

YEAHHHHHHHHHHHHHH

what a wonderful husband i have, the new word of the day was "kaz" for the first time in 12 weeks he finally said my name, yes you'v guessed i cried.

he was on top form today, no taking his clothes off or throwing the bedding on the floor.

we had so much fun today, he's found the brake on the bed and was doing wheelies across the ward and laughing at himself, i even managed to take him for a little walk in his chair.

Bed (no mattress) ha ha, comode, rotastand, riser chair(which is ever so comfy) slip sheet, crash mat and a straight back chair all arrived today,true to her word the social worker has done us good.

havin an early night tonight will definately sleep well as i feel so at ease.

night night

karen x

[MaryB]

Wonderful to read your post!

[goldfish.girl]

Fantastic to hear Karen. I hope there are many more days like this for you both!

Michelle xx

[karened50]

Had the best nights sleep i have had in a long time, feel so refreshed. Lets see what today brings.

hope everyone feels the same as i do today, POSITIVE XXX

[Daffodil]

That's a good thing to hear Karen. Enjoy your day with jimmy, hope he catches your positive vibe and teases you some more. best wishes for a good day.

[paul99]

hi karen

thanks for sharing your good feelings its nice when it happens enjoy the moment sweetheart regards to jim

[Winb143]

May You and Jim have many more good Days Karen xx

Keep smiling the pair of you

Nice to read a positive post ..Well done

Love

WinB143 xx xx

[kpaggett]

Karen,

Sometimes I said yes when I really meant no. I also talked to others when I really didn't want to have anything to do with them. Sometimes even now, I yell 'No!!!' even before my husband finishes asking me the question...Like a 2 yr old. I think it's like you go back to basics at first, then you have to relearn your way back as far as you can go. I hope you continue to have good days and that you continue to be such an empathetic person to the needs as you see them arise!

The other thing that really made me crazy at first that I had a hard time expressing was all the visual stimulation. Even the little tiny power light on the back of the computer really bothered me. It was sometime before I could actually get it across that the nurses needed to turn the computer OFF not just sleep or after dark. Hospitals are so awful for stimulation and irritations. I fared much better when I got home.

Good luck!

~Kris