Helping my sister who had an sah and her husband who looks after her

[suetabert]

Hi

My name is Sue and i have joined this group to try and get more information, support and any help that maybe people on here can offer.

My sister suffered a SAH in December 2010. Please excuse my long explanation but she has lots of other health issues too, which may be relevant to how she is today.

She has suffered from Bi Polar for over 25 years, and still has it now. Back in 2004 she started to have seizures which were quite severe and she was in hospital on a number of occasions, one time she nearly died. Various tests revealed she has a benign brain cyst and cerebral atrophy and she was given medication to control the seizures. She has also had macular degeneration in her eyes and is deaf(without her hearing aids)

She then fell over at home and broke her hip, and after struggling to regain her mobility she eventually had a hip replacement. Unfortunately she was unable to walk without a frame, i believe this was more to do with confidence, than any physical pain. But she struggled on, bless her.

The in December she fell down the stairs at home, whilst going up the stairs. Her husband was at work and came home and found her. Nobody knows exactly how long she was lying there for it could have been 3 hours. She was admitted to hospital where she was diagnosed with having had a SAH. Her husband didn't tell me and my partner about this at the time, and we weren't allowed to visit her in hospital or at home for a long time. We live in Bedfordshire and they are in Leeds.

When we were allowed to see her we were shocked and extremely upset by what we saw.There was a hospital bed in the downstairs side room, a commode, a hoist, it looked like a hospital ward. My sister could not walk at all but was able to sit in a chair. You couldn't have a long conversation with her as she got very tired. Her husband then later told us what had happened with the SAH.

Since then she has suffered from recurrent UTI infections and gradually towards the end of 2011 became weaker, sleeping more, and spending less time in her chair and more time in bed. Then in December 2011 we received a call to say she was in ICU and not expected to survive. They discovered she had acute appendicitis. She was operated on and it was a success. She spent 4 months in hospital as she had recurrent UTI infections which led to pelvic infections, she had 2 blood transfusions, septicemia, skin rashes all over her body,the list just goes on and on.On a near daily basis there was something else wrong with her. She also suffered a series of more brain bleeds.

She has been at home now for 3 months, and this is where we are with her. She requires 24 hour care, which they have to pay for. Care workers come in 4 times a day. She is bedridden, and cannot move in bed at all, she is incontinent, she cannot talk to you for more than a minute and spends most of the time asleep.She has little or no appetite, very little interest in what is going on around her, gets confused and very fatigued. I am at my wits end as to what to do. Her husband is a wonderful man who loves her dearly but i think he is in denial. Anything that we(my partner and i ) suggest gets dismissed. We wanted to go and spend xmas with them offered to do all the cooking etc and have been told no. She is my only sister who i love with all my heart and this may well be her last xmas and i would like to see her. I have also suggested they look into continuing health care which would help them financially and nothing gets done.

I have been on so many different web sites to gain as much information as i can about SAH and the majority of people appear to make a good recovery, clearly my sister hasn't and realistically is unlikely to improve further.

If anybody can suggest anything or even tell me i'm being a pushy younger sister i would be grateful as i am at my wits end

Thank You

[paul99]

hello sue

your sister has been through the mill to say the least she has multiple problems which seem to overload the recovery of the sah

as someone who has a partner who has suffered a severe sah and vasospasm and so desperatly wanted her home i in hindsite was overruled lin is now in a nursing /care home where i can spend all day being with her doing things together had she been home like your brother in law i would have collapsed because of the work involved .even with carers coming in three times a day lin being looked after so well i have peace of mind and although im so mentaly tired when i come homei know that lin is being looked after 24/7

i dont think you are being pushy maybe afraid of whats going on and not being able to help effectivly because your not only worried about your sisiter i think you know that brother in law is out of his depth and dosnt know it

i think in all honesty that you need to speak to the dr looking after her at the hospital the neurosurgeon at least and also talk to rehab people at the hospital and occupation therapy people and voice your concerns with the brother in law as you say things are going from bad to worse i would also talk to the social worker and ask for help under the best interest clause of social workers disabled unit either local or hospital this situation appears to have some concerns i will email my number so if you wish to have a chat

the uti does your sister drink a lot of water or fruit juice there is a lot more i can suggest but if you give me a call i will try and help take care i wish your sister well

[Karen]

Hi Sue,

Gosh, what a huge amount your Sister has been through .... Even having a SAH twice and having other medical problems, I don't really know where to begin...

I can only agree with everything that Paul has already said and somebody that knows what they're talking about through their own personal experience and that you need to speak to the medics that are looking after her.

Keep close and in contact with your Brother in law ... I think that there are many of us in denial, including our families .... keep the lines of contact open, once you're both used to doing that, then may be he might be open to other suggestions....just be gentle, as he's in the front line.

I wish that I could offer more, but can see that your Sister has had a tougher time than most of us on here....

I can only send you hugs Sue ......xxx

[suetabert]

hello sue

your sister has been through the mill to say the least she has multiple problems which seem to overload the recovery of the sah

as someone who has a partner who has suffered a severe sah and vasospasm and so desperatly wanted her home i in hindsite was overruled lin is now in a nursing /care home where i can spend all day being with her doing things together had she been home like your brother in law i would have collapsed because of the work involved .even with carers coming in three times a day lin being looked after so well i have peace of mind and although im so mentaly tired when i come homei know that lin is being looked after 24/7

i dont think you are being pushy maybe afraid of whats going on and not being able to help effectivly because your not only worried about your sisiter i think you know that brother in law is out of his depth and dosnt know it

i think in all honesty that you need to speak to the dr looking after her at the hospital the neurosurgeon at least and also talk to rehab people at the hospital and occupation therapy people and voice your concerns with the brother in law as you say things are going from bad to worse i would also talk to the social worker and ask for help under the best interest clause of social workers disabled unit either local or hospital this situation appears to have some concerns i will email my number so if you wish to have a chat

the uti does your sister drink a lot of water or fruit juice there is a lot more i can suggest but if you give me a call i will try and help take care i wish your sister well

Hi Paul

Thank you so much for taking the time to reply, as i am new to this site i am not sure whether you will get my reply it may well end up in the depths of the internet!!

My brother in law was given the option of a nursing/care home but refused.

I don't think my sister would have gone into a nursing home she just wanted to come home which i completely understand.

There is no doctor looking after her apart from her local GP who is not an expert in neurological problems

She has had rehab previously and it didnt work so what happens now is her husband pays for 2 physios to come in twice a week at £78 each per visit to do physio with her and there has been no improvement.

He will not let me talk to anyone. He only told us a year after she had the SAH that she had had it

She doesnt drink much liquids Paul. I suspect the reason she has the repeated UTI infections is that she is bedridden and wears incontinence pads as she is doubly incontinent so you have a massive hygiene issue here.She cannot part her legs and that area excuse me if i offend gets very hot and sweaty and is a breeding ground for germs

I understand completely how hard it is for him, but he can still go to work as he pays for someone to sit with her, he doesnt do the messy bits as the careworkers do so i dont get it to be honest. He is very secretative and i think he is scared but wont admit it.

Thank you again and sorry to go on but i love her so much and just want to help thats all

[suetabert]

Hi Sue,

Gosh, what a huge amount your Sister has been through .... Even having a SAH twice and having other medical problems, I don't really know where to begin...

I can only agree with everything that Paul has already said and somebody that knows what they're talking about through their own personal experience and that you need to speak to the medics that are looking after her.

Keep close and in contact with your Brother in law ... I think that there are many of us in denial, including our families .... keep the lines of contact open, once you're both used to doing that, then may be he might be open to other suggestions....just be gentle, as he's in the front line.

I wish that I could offer more, but can see that your Sister has had a tougher time than most of us on here....

I can only send you hugs Sue ......xxx

Hi Karen

Thank you for taking the time to reply. We have kept lines open i have been gentle, i have been assertive ( sounds like 50 shades!!) i have tried everything. I love my brother in law to bits but sometimes i could slap his **** so hard as he is such a procrastinator. But i will carry on and try and do my best, and trust me Karen i know how hard it is for him, but i cant have a chat with my sister anymore, and i miss that so so much. Her hair is going white and he wont let her hairdresser in to colour it, he wont get her a tv for the room she is in in day in day out. I know this sounds really cruel but she has no quality of life at all.if that were one of my animals i would not wish them to live like that. My sister is one of the most intelligent people i have ever met she was reading Russian novels at the age of 6 she has and now she is just like a vegetable and it is heart breaking.

Thank for the hugsxxxxxxxxxxxx

[KelBel]

Hi Sue

So sorry to hear your sister has had to endure so many medical issues.

It is really sad that her husband is not willing to listen to reason, and accept your help, and let you see your sister. I can imagine that must be heartbreaking for you (((hugs))) x

It does sound as though he is not willing to accept the reality of the situation, but I do hope in time that you manage to get through to him and are able to spend some time with your sister.

You are not being pushy. It is your sister and you desperately want to spend time with her and help out where you can. Don't give up.x

Take care

Kel x

[goldfish.girl]

Hi Sue,

It is so sad to read your posts about your sister & what she has been through. I'm not sure I can say anything to help you.

My own son had a brain operation in Jan 2011 and spent 6 months at home with me as his sole carer. Although he was in no way as seriously affected as your sister has been, he did spend most of that time either in bed or on the couch with a blanket. I find it hard to understand why your brother in law won't even consider putting a tv in your sisters room. My son had his tv, xbox, dvds, books etc to try to keep him stimulated while he was too weak physically to be up and about. I also feel that it is not my place to judge your brother in law as I am not living his life and can imagine how hard & heartbreaking this is for him too.

I also didn't want to accept help from others if the help was looking after my son. Looking back now I can see that my family must've felt very hurt & snubbed when I refused their offers but at that time I couldn't really care about anyone or anything other than my son & what I thought was best for him. I believed that no-one could care for him as well as I could and that other people wouldn't be able to read his unspoken signs of being tired or in pain as well as I could. I had to be there 24/7 myself to make sure he was ok. I know your brother in law goes to work but wonder if there may be a slight element of this for him too?

What an incredibly difficult situation you are in. I hope you can make some head way with your brother in law soon and that he will let you in a bit more, allow you to help and to spend time with your sister.

Good luck,

Michelle

[paul99]

sue i didnt get your reply could you call me tonight does your brother live in the midlands or lancs

[Louise]

I sue welcome if I havent said it glad you found us.....

Kel's right her husband is being very unfair to everyone including himself I think too in a way,

Im sorry not much I can add take care.

[Winb143]

Hi Sue

I had sepsis ventriculitus etc after SAH..my husband was asked if he wanted me in a home..both him and daughter said "No Way"

My daughter quit job to look after me..none of this I remember ..I had SAH in 2009...and in 2010 I had a shunt fitted for hydrocephalus.

I am really doing well.....cannot keep me away from shops lol...I could not sit straight before 2nd op......cannot walk all that far now but considering my hubby was told I would never walk again...60 yards is better than nothing ...now I do not rely on others as much..well sometimes lol ....

All of you don't give up...keep the faith and when down come on here

Been there, done it, got medal..lol Good luck to your Sis xxx

All the Best

WinB143 x

Edited August 7, 2012 by Winb143

[suetabert]

sue i didnt get your reply could you call me tonight does your brother live in the midlands or lancs

Hi Paul

Thanks i have nearly lost my voice adam says i sound like minnie mouse!!! so i cannot speak to anyone at the minute sorry

Edited August 7, 2012 by Karen
removed text speak

[suetabert]

Hi Sue

So sorry to hear your sister has had to endure so many medical issues.

It is really sad that her husband is not willing to listen to reason, and accept your help, and let you see your sister. I can imagine that must be heartbreaking for you (((hugs))) x

It does sound as though he is not willing to accept the reality of the situation, but I do hope in time that you manage to get through to him and are able to spend some time with your sister.

You are not being pushy. It is your sister and you desperately want to spend time with her and help out where you can. Don't give up.x

Take care

Kel x

Hi Kel,

Thanks for you message. I know it is really really hard for him to see the woman he loves so much being like this. But i believe you have to be realistic and life goes on. What i cannot understand is why she has not recovered like so many other sah sufferers have and why she was never operated on.

Will just keep on trying thats all i can do

Sue

xxxx

[suetabert]

Hi Sue,

It is so sad to read your posts about your sister & what she has been through. I'm not sure I can say anything to help you.

My own son had a brain operation in Jan 2011 and spent 6 months at home with me as his sole carer. Although he was in no way as seriously affected as your sister has been, he did spend most of that time either in bed or on the couch with a blanket. I find it hard to understand why your brother in law won't even consider putting a tv in your sisters room. My son had his tv, xbox, dvds, books etc to try to keep him stimulated while he was too weak physically to be up and about. I also feel that it is not my place to judge your brother in law as I am not living his life and can imagine how hard & heartbreaking this is for him too.

I also didn't want to accept help from others if the help was looking after my son. Looking back now I can see that my family must've felt very hurt & snubbed when I refused their offers but at that time I couldn't really care about anyone or anything other than my son & what I thought was best for him. I believed that no-one could care for him as well as I could and that other people wouldn't be able to read his unspoken signs of being tired or in pain as well as I could. I had to be there 24/7 myself to make sure he was ok. I know your brother in law goes to work but wonder if there may be a slight element of this for him too?

What an incredibly difficult situation you are in. I hope you can make some head way with your brother in law soon and that he will let you in a bit more, allow you to help and to spend time with your sister.

Good luck,

Michelle

Hi Michelle

Thanks for your reply. It is indeed a very difficult situation. They have been married for over 30 years, no children and no close family members. Our and his parents are dead. My sister and i have a brother who is in a nursing home whom Adam my partner and i have now taken sole responsibilty for in his care, which is fine. My sister has always been very stubborn and i am the same!! I know John is finding it hard to cope with he actually needs his work he told me if he couldnt work he would go mad, which again i understand. Because we love so far away its difficult as we cant just pop in, it has to be a planned visit. Luckily we work from home so can usually rearrange things. We/I just want to help thats all. I thought going to see them for xmas would be nice we could do all the cooking etc and not make them feel they are on their own. Lets be honest every day for my sister is Groundhog day there is no change no alteration to the routine. Why is her condition so so much worse than many others i have read.

Hope your son is on the mend and good luck to you and your family. Its a challenge at times

Sue

xxxx

[Karen]

Hi Sue,

Not all of the members on here who have had a SAH are operated on. We have quite a few members that have had a non-aneurysm SAH/Perimesencephalic SAH where no known cause is actually found and we have another forum on the site if you want to ask those members a question. xx