JaneC

Welcome Norima. I am also fairly new to this group but have already found it tremedously supportive and informative. I am sure you will find the same too.

Thanks Louise. Rob has refused to go to physio for the last two days (so much for me saying earlier in this thread that he didn't need pushing) so I've had to tell him some home truths about the consequences of not working at it. And today of all days (it's 6 months to the day since his pop) Hope he will keep his promise of agreeing to go to physio tomorrow. Watch this space!!!

Thanks also to Dawn. I do try and stay positive overall but I certainly get my black moments too. I'm sure that reaching a plateau is just the body's way of saying "I'm all done in for now so let me rest and I'll amaze you a bit more in a while". I'm also pretty sure that as time passes you may not really notice the tiny changes/improvements as they are not as huge or momentous as those great gains achieved in the early days/years. Wishing you all the best too Dawnx

Thanks Penny, Win and Daffodil - your replies are an inspiration, as always. I have already refused to put him in a home ( I told them over both of our dead bodies!) - he's 59 for goodness sake and far from in need of that type of environment. Thankfully at the moment he doesn't need pushing - he's very determined and is totally on board with our own three-pronged escape plan (walking, talking and weeing!). Nevertheless, I still give him a "pep talk" on a daily basis as I have done this since Day 1 in ICU. I shall get the book you recommend Daffodil - always good to have another perspective and maybe even pick up some coping strategies/tips. My overall strategy now is to bide my time. I have applied for a disabled facilities grant from the local council and the OT assessment of our home can take up to 90 days for an initial appointment. I do not intend to chase them for an earlier appointment as the longer Rob receives physio at the rehab unit, the more strength he will gain and be more likely to walk again (if only around the house with aids). I shall of course keep you all informed of our progress and thanks again for your support x

Today, my darling husband Robin has survived for exactly 180 days following a massive non-aneurysm SAH. That's also 180 nights spent alone in a hospital bed and 180 heparin injections into his abdomen. But most importantly that's 180 more chances I have had to say "I love you" each and every day. You may remember that he is currently in a Neuro Rehab Unit where the care is a bit hit and miss, depending on which staff member has been allocated to care for him. Some are outstanding, others leave a lot to be desired and amongst the latter I know I have a reputation for being a particularly demanding wife (I care not). The unit have tried to pressurise me into making decisions about our future based on Rob's condition as he is now, yet they also acknowledge that he is making steady progress. Whilst I am not in denial that our world has changed and our future "normal" will be different from before, I refuse to make monumental decisions until we reach a point where Rob's progress becomes more negligible. Having been told repeatedly from the outset that "each individual's recovery is unique" and "it's impossible to say how long it may take" I am now somewhat bewildered as to how they can say "Rob will be a wheelchair user on discharge" when he is continuing to make progress. When I challenge them they backtrack and say things like "oh we're not giving up on him" , "miracles do happen" and "we love to be proved wrong". I'm therefore wondering if any members or their families have experienced similar negativity/obstacles. I am also keen to hear from anyone who had a similar prognosis and have battled through to actually walk again. But most of all I just wanted to say how very proud I am that Robin is working so very hard to regain his former abilities. Here's to the next 180 days and the progress they will bring.

Cheers WinB143 (Love your pic btw - I am a big Victoria Wood fan and adore Mrs O) Thought I should update everyone that since my "meltdown" I found an inner strength and decided to give Rob a pep talk every day again - it worked in ICU so why not try it again now. Not convinced it's as a result of those daily talks but this week he has progressed in leaps and bounds. We have put together an "escape plan" (a.k.a. how to get home from rehab) which has three strands : walking, talking and weeing. So far he has progressed from a sling to a standing hoist, has today begun talking in sentences in a "loud" voice(as opposed to whispering) and for the very first time pressed the buzzer to call a nurse when he wanted a wee! Those are three mega milestones all in one week so all I can say to those so called "professionals" who want to write him off is BRING IT ON!

Thanks to you all for the wonderful responses. I feel a little more rational today and determined that whilst I want him home asap, I will NOT compromise his basic human rights and dignity. This whole process is a bit like eating an elephant - you have to do it one mouthful at a time, even when the whole elephant is thrown at you in one go! It would be an awful lot easier if those supposedly caring for him took a minute out to reflect on the way they deal with his family. What is part of their every day is an unique and often mindblowing experience for me so a little thoughtfulness would go an awfully long way.

I'm having a bit of a meltdown today and thought it may help to share my feelings here in the hope of tapping in to other peoples' wisdom from similar experiences. My hubby, Robin, is currently into his 12th week at a neuro rehab unit following an SAH, IVH and resultant hydrocephalus. He is making reasonable progress, given the extent of his injury and looking at others progressing in the unit, I have always held the belief that Robin will be walking (with whatever assistance is needed) at the point of discharge. On Friday, whilst standing in the corridor outside Robin's room while the staff hoisted him into his wheelchair for our first proper outing in the 5 months since this has happened, one of the physios asked me if Robin's consultant had spoken to me and when I said no, he proceeded to very nonchalantly tell me that we need to consider property adaptations as Robin will be a wheelchair user on discharge. I held it together for the whole of the outing then on our return asked the physio to explain things properly to me in private. Having pondered his words and insensitivity over the weekend, I decided to take it on the chin and not confront him about his lack of professionalism so that he continues to work well with my husband. My feelings and upset are insignificant in comparison to my husband's need to achieve as much potential as possible prior to discharge. Then today, I have been approached by one of the OTs saying that she had been asked to visit my home to do an environmental assessment and she was shocked that nobody had mentioned this to me already. She has then basically bombarded me with a barage of information about care packages, room dimensions, door dimensions and even a list of things that are not considered essential for discharge (such as access to bathing facilities and even basic access into and out of our property). The whole thing just overwhelmed me and I became very tearful - I can usually hold it together and be a "Warrior Wife" but not today for some reason. She then backed down a bit when she realised her approach had pretty much stunned me but I am still feeling rather overwhelmed by the whole episode and by the considerations I now have to face. Any advice or words of wisdom would be greatly appreciated. Thanks.

Many thanks everyone for your kind words of welcome and wisdom x

Hi Paul I am referring to the nursing care Robin is currently receiving in the specialist Neuro Rehab Unit where he is a patient. The Physio, SALT and OT he is receiving all appear to be spot on at present but there is a distinct lack of communication between the therapists and nursing staff, despite lengthy MDT meetings every Monday morning.

Hi everyone. I am Jane and am typing this post whilst sitting beside my darling husband, Robin, as he sleeps in a Neuro Rehabilitation Unit following a massive SAH which happened at home in front of my very eyes on January 15th 2014. He has had 3 instances of neurosurgery plus a tracheostomy, been through ICU, high dependency, neuro ward and then a gastric ward (yes, I couldn't believe that either!) before eventually securing a bed in neuro rehab where it is currently anticipated he will remain for at least the next 6 months as he currently has total right sided paralysis, is incontinent and has limited speech although thankfully his cognition does not appear to be at all impaired. Whilst I am thrilled he was accepted on to the unit and is receiving therapies to help maximise his potential, I am less than pleased with some of the nursing care he is receiving which seems to be very "hit or miss" depending on which staff member is allocated to his care. Some staff are exceptional, others friendly but disinterested, one positively draconian! I am a former midwife and appreciate that, as such, I probably have very high expectations of care standards, based on the standards I personally delivered to those in my care. However, I am becoming increasingly frustrated that basic care issues, such as leaving the call buzzer within his reach, are simply not being met despite me pointing this out repeatedly. I am also concerned that if I repeatedly raise such issues, I will be branded a nuisance and worry that my husband will suffer for this when I am not around. I also appreciate that none of these nursing issues are life-threatening but they do have an impact on his rehabilitation and ultimate recovery. How is he ever to become continent if he cannot reach a buzzer to alert staff that he needs the toilet? Whilst I am eternally grateful he has survived and the desperate life-or-death scenarios are behind us, coping with these little irritations on top of everything else is becoming such a struggle. I am sure others on here will have experienced similar issues and I would welcome any insight you could provide. Many thanks.