suetabert

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

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

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

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

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

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