LauraNW

Hi Luke, A little late to the conversation but I just wanted to say that it sounds that you are doing so well for your Mum and Dad. My Dad had a Grade 5 with hydrocephalus, vasospasm and confabulation back in May 2015. Like you, I saw my Dad every day for the first 7 months of recovery, so I thought it might help to just share a few of the things I experienced. The confabulation became increasingly better over time, for Dad it was exacerbated because he was struggling to control his sodium levels post SAH, so that may be something to get checked out. You're doing the right thing with the chalk board and small tasks, it made me smile reading that part as I remember all the prompts that we would go through! Dad's energy levels slowly extended over time and now he is back to 6-7 mile walks and generally only very occasional bouts of 'sudden' tiredness. Once he got in to writing the diary he found it very useful, reading back over what he did the day before and seeing what was planned for the next day too; again he uses it very little now. And the final thing is eating, Dad has always been a very healthy eater with home grown veggies etc, but after coming out of hospital (about 5 months after SAH) he ate 'junky' food all the time, almost half a loaf of bread with jam most days!! That too evened out over time, and whilst he has a sweeter tooth than he used to his appetite for fruit and veg has returned. They say carbs are brain food, so it may just be your Mum's body taking the driving seat - I certainly think this was the case for Dad. Although having said that, if you're in the UK the website My Protein has a LOAD of low fat, low sugar, high protein dessert things, I eat them and they really are quite passable! And the actual final, final thing is - look after yourself too. I know me and my Mum did all of it on our own, and I will always be glad that we did, but take time to go to the cinema or out for a cake/coffee or whatever it is that makes you feel like you. I really do wish you and your family the best Luke, if you have any questions please just reply on here or send me a message!

Hi Caroline, I myself have not had an SAH but I have been on here looking for support for my Dad who had an SAH and hydrocephalus around 6 months ago. Dad has recently seen a neuropsychologist as part of his rehabilitation and I just wanted to share something she said about a similar conversation. It went along the lines of "we all have those moments when we can't remember something being said, or having to think really hard for what we had for lunch yesterday, if you hadn't come into contact with brain injury you wouldn't attach too much importance to it, and would just shrug it off. So do the same now, it happens, its ok, don't try to reason it to the nth degree because this brain injury has happened, it can happen to all of us." Have a lovely Christmas, Laura

Well I would say you guys are making a formidable team and covering all bases! If I'm honest I didn't even know there was a dependency scale, can I ask what the official name is as we'll be asking where Dad sits on all of this. I think the only advice is to be vocal, we've had to 'ask' on a number of occasions to make sure that he is getting the help he needs. I wish I knew more about the movement side to make a comment, but it hasn't been an issue for Dad and he had very little contact with the physios. I would, however, clarify just how much physio he is getting a week as there tends to be a standard for each ward. I know acute care was only 2 visits a week.

Hi Jump, Yeah I'm OK, weird feeling this evening as today we've taken Dad from home and in to the neuro rehab ward - so strange him not being at home. Although we know its positive that he has a bed and will finally be having an assessment and some therapy. Dad was up at about week 2, after the EVD was removed and before he went to acute care neuro. He didn't really have any particular loss of movement or strength as a result of the SAH, so that may be something to keep in mind in respect of timescales. Once he was moving there was no stopping him!xx

Hi James, been AWOL without internet for the last few days, but great to hear that your Dad is eating and about the rehab ward. My Dad was admitted to a neuro rehab ward today, feels really strange leaving him there after him being home for a while, but after the few little tests that were done (the first he's had to assess him in any way cognitively) we know that he needs the input. It is so calm in the ward that Dad is in, I'm sure it will be an absolute tonic for your Dad if his hospital ward was anywhere near as manic as my Dad's was!

I'm glad I can be of help! we must have doubled Dad's calorie intake with all the stuff we took in, so pile it up around him. If the nurses can see that they may also realise what he can or can't have. The continuity of care is an issue, we certainly found it so we made the point of chatting to whichever nurse he had for the day, finding out how he was getting on and making points about how fit, strong and active a 64yr old he is. I think some may make assumptions, Dad said he feels that people do when they read an age on a sheet of paper. If he is trying to get himself out of the chair, tell the nurses and ask if you can help him up etc. No-one has ever told us that there was a plan! but we finally seem to be getting somewhere today having had a positive phone call! finally. Going for a walk and visitors would have been mild confabulation for Dad but he had difficulty regulating his salt level (which can cause a high level of confusion) and then the UTI that wasn't recognised very quickly. Dad was not really ready to accept that he was in hospital either! However, that has gone away since he has come out of hospital and is now more of a case of difficulty of processing a lot of information quickly, so confusion rather than confabulation. You all need to think of yourselves as your Dad's voice for now, and we have certainly had to adopt a different way of working. Question everything, ask why it is the case. I know it can get tiring and you will be frustrated, but unfortunately it seems to be the only way to get things done (well, at least that's how it has been in our case). Make sure you take time for yourselves too, go for an outrageously priced coffee and cake, go for a run or anything that will break the cycle for you a bit. Your Dad will also enjoy hearing the stories of what you have done too, we would take photos of food and places etc, etc so he felt more involved. Your poor Mum with a throat infection too, I can't imagine how anxious it is all making her, take photos, videos, of you and your Dad to take home so that she can see him that way at least. If your Mum needs to be busy (mine did, my house has never been cleaner) perhaps she could make up some food to take in, a lot of stewing fruit is starting to come in to season too. I'll always remember carrying a bowl of stewed rhubarb and custard through a hospital! soldier on you will, and it will get easier!

Hi James, Sorry to get chatting as a result of these difficult times. Dad had a Grade 5 bleed on 14/05, followed by hydrocephalus, vasospasm and an infection that had him at such a fever pitch that he was bouncing off the bed. Your Dad's frustration is well understandable, my Dad was referring to himself as an inmate towards the end of his stay in acute care, but in a really strange way I take it as a positive sign, there is so much going on in there with all the healing that to find time to be bored or frustrated has to be positive. Whilst obviously we are not allowed to comment on the medical side too much, I can offer you a few of my experiences or conjectures here. Dad lost a lot of weight (1 stone in 2 weeks) and we made a point of every day taking in lots of high calorie tempting treats, we also made quite a point of it with the nurses who then referred him back to the nutritionist who upped his fortisips. In my wisdom I ordered protein cookies - well, I know what I'm going to be trying to palm-off on gym friends when I eventually get back in there! I should, however, have bought shares in Capri Sun! It was my experience that Dad, and many others on the ward would be too exhausted to eat their food and it seemed welcome to the nurses when my Mum offered to stay during protected mealtimes to help him eat. The rule was that only 1 visitor could stay. Dad was very weak after a few weeks in bed, but we would take him out in a chair to get fresh air outside and go for a little stroll down the ward in the evening to make sure he was moving enough. Whilst it might be too early for Dad yet, its something to keep in mind as it seemed to be very restorative for Dad, especially going outside. We found out the other day that he initially had weakness in his right side, but that seems to have gone now. You can play quite a roll in his recovery as we all know our medical staff are stretched. On this point, if you don't understand something about your Dad's care, ask why. Have it explained to you, sometimes it gives the flag that is needed. Another large conjecture, which is based entirely on my gut, is that my Dad would have stayed in hospital longer if it wasn't that both my Mum and I were able to make it so that we were at home (both full time 'career' women as some would say). I do feel that it led to him being discharged too quickly from the final hospital, but what I can say is that despite the hugely added stress of caring for him at home it has been more than worth it. Things that worried us whilst he was in hospital, like confabulation, turned out to be unnecessary. And I know that you say that your Mum is coping well, but I have seen my role in all this to look after and protect my mum as much as Dad. It is good that you have found your way to BTG, and it is important to do a lot of reading so you know what to expect for the future and for your Dad's current care, but act as a filter. In the early days my husband read and filtered to me, now I read and filter to my mum. And I read a LOT (I'm an academic)!! There are some things that will give you hope, there are other things that use terrible language (see my earlier rant about 'catastrophe') and if I can take that upon myself then it is a good thing. I also ask about stuff Dad wants to know about on here too, everyone is wonderful and if they have an answer or an experience they can share with you, they will. Dad feels that at the moment he would like to limit his knowledge on it all, but I think that has come after reading the one pamphlet that had catastrophe on it 3 times before I then decided to rip it up! Things will get better, and in looking at the difference of 2 weeks between 'the' night for our Dads and what has happened for my Dad in the last two weeks, it has been huge. Many notable changes. So have hope, that feeling of being simultaneously squeezed and pulled from every direction will start to ease. You have each other, and you can laugh. Our family home has become a hotbed of jokes that outsiders would find inappropriate, but it keeps us bouncing along! If there is anything I can ever answer for you, please just ask! Best wishes to you, your Dad and all your family

Hi everyone, Thanks for all your kind words and wishes. We've had a few great days and Dad is really starting to get his strength back, we've had a great time shopping about for plants for the new house. It gives the trip a nice purpose too as shopping usually would not be Dad's cup of tea! Although I do think now that he needs a bit of space, as in real alone time, but its hard to know how to do it, particularly when the only advice we've had is "don't leave him on his own!" Louise, it is not just you that has re-evaluated relationships as a result, I certainly have and have been disappointed by quite a few but wonderfully surprised by others. I was thinking about it the other day, they really do mean that it is life changing!! Daff, it does give me a little lift knowing that you think they are better after the first year, we have and continue to be caught between so many health boards that we do wonder a lot about our situation, and Dad worries how much of it is due to his age (64). Its as though every time a 'professional' speaks to him they are surprised about his lifestyle pre-SAH. And you are both right, I do need to take a little time, but with work, home-home and new home its all a little manic. I had a bath and read a book this evening and it felt like a luxury. Still, its a good practice for if I ever have children! Macca, I am definitely starting to ease in to the role of scrappy, whilst never normally a confrontational person my Dad and my family are definitely well worth it. The only thing that always concerns me is picking the right fight, so many times it has been a funding-related decision that it starts to wear. The night Dad was taken ill he was in an ambulance outside the house whilst there was a 'political' discussion about what hospital to take him to, it took so long that I was able to run a mile home, get my husband, drive 70 miles and arrived at the hospital the same time as him! And unfortunately thats the first of many! But, as the saying goes - we'll just keep on keeping on!

Hi Sammy, Welcome, you have found a good place here in BTG, and I am speaking from recent experience. Dad had his SAH on 14th May, so a few weeks before you. I am an only child but an adult and married woman, similar questions struck me when all this happened, but I can tell you for sure that this time last week I didn't think I would feel as I do this evening. It really is true that time is a healer in this situation and often just a few days can make so much difference. I have moved home to help with Dad's care and just to be 'around'. the more time that we spend together and the more 'normal life' things we do, the feelings of fear, panic, being overwhelmed and questioning begin to subside. A lot of hugs, a lot of cake and 'treaty' meals, and plenty of giggles have been very restorative for our family. I can't imagine how hard it must have been to be away from your little girl for so long, but as someone who was a visitor to High Care and Acute care for several weeks, it was often the suffering of other patients that rocked me as much, sometimes more, than what was happening for Dad. They are emotionally difficult wards to be on, particularly once you start talking to other people's families. Your little girl sounds incredibly courageous and clear thinking, you must be very proud of her. I also wanted to thank you for asking about lower back and leg pain, Dad has been experiencing this too and he was relieved to hear that he wasn't on his own. He had 3 lumbar punctures after his EVD blocked. You also sound like you are having a lot more aftercare than Dad is too, so that is very positive. We went for our first long drive today to see my new home, it was about 1.15 hours, mostly on the motorway. Dad said he found it tiring as despite being a passenger old habits die hard and he was 'driving' it in his mind, watching traffic and so forth. So that might just be something to keep in mind. I wish you and family all the very best; as we say here, the worst is behind us and it will keep getting better from here.xx

Louise, that's oddly comforting to hear about how vivid the experiences were. Dad has been having a lot of incredibly vivid dreams that he has been talking about with me, including feeding the cat (who has been gone a few years but passed when she was 17), I think they have been worrying him a little. But after those 10 days or so of being very disorientated it seems like his short-term memory has come on leaps and bounds, which is great. Dad has cooked a few meals, we had curry tonight - yum! and is starting to enjoy pottering around a little more, he said he was bored the other day which was great! As for the tests, they didn't happen as it was just a meeting for a referral for an assessment, which could take up to 12 months, hence why I haven't been on here in a while as I wasn't capable of anything but ranting! we're exploring other avenues at the moment, so hopefully we'll come up trumps. it just frustrates me that we seem to have to fight at every juncture and i really do worry about people who have no-one there fighting for them. its something i'm going to pursue in the future. we did, however, find out that he had a Grade V bleed. This makes me think of you Win (Hi again!) and what your family were told, it astonishes me everything you have been through and how positive you are. and I mean that sincerely. take it from me, and other carers like me we would do it all over again in a heartbeat!xx I nearly fell over my Dad's slippers the other day (he has always left them in the middle of doorways) and I couldn't get over how happy it made me! We've been to a few garden centres recently and bought some plants for my new home (in amongst all this my husband and I's house finally came through 6 months late) and we're going as a family to see it tomorrow, which is incredibly exciting for me. Dad also bought some things and used his card (we sent for a pin reminder but he remembered it from reading it the day before), the cashier looked at me daft when i was glassy-eyed! its amazing how you take the little things for granted. This has been life changing for all of us and I am so thankful that I found BTG as the support you have all given me has been invaluable and allayed so many of our fears and questions as a family. thank you all so much.xxx

Thanks Gemma, Dad was definitely a savoury person before too. It is also a good point about the tests, unfortunately his is booked for 3.20pm which is when he is usually having a doze and the assessment is 40mins motorway drive from our house, so I have a feeling he's going to be exhausted before he even starts. The way we are looking at it is that it will be good for the consultant to see Dad at his worst rather than his best. Did anyone experience disorientation that you recognised sometimes and then was fully immersed in at others? We've been 'living' in Jersey for the last 10 or so days (we live in Wales with a sea view). Sometimes Dad will say he had a vivid dream about going to Jersey and then not very long after he will say something that is totally logical IF we were indeed in Jersey. His blood test this week showed that his salts were OK, just worried that its the pressure building again or something else entirely different...

Daffodil and Super Mario, thank you for sharing your experiences. Dad did a lose a massive amount of weight quickly in hospital (a stone in 2 weeks) which he had mostly regained by the time he was discharged. What was worrying us was that he was going downstairs to get the food himself, so it became a case of sleeping with one eye open just in case something happened! Although we have all joked that me and my mum are possibly a bit 'hyper' in our care, but we are all sinking in to a nice routine taking it in turns to make teas etc. Dad's appetite also seems to have calmed now, but his tooth is sweeter than ever and I think he can hear a biscuit packet being opened at 1000 paces! We finally have a date for a cognitive assessment too, so in a very odd way we're all looking forward to this next phase. We have also made a visit to the GP who gave a very informative printout from patient.co.uk that used the word 'catastrophe' within the first few sentences....sigh! Really not the type of phrasing I anticipated in the first bit of literature on SAH that Dad would read!

Hi all, sorry for the radio silence, its been a whirlwind few weeks! Dad is now at home with us and is awaiting cognitive therapy, unfortunately it looks like its going to be another 3-4weeks before he gets it and he has been 'medically stable' for 2 already. I don't think his neurospecialist nurse is happy that he was discharged but that's a battle with all the different healthboards! I also know we can't talk about that stuff here...but he seems a lot happier and more settled at home. He was originally listed for inpatient but now is on outpatient so that he could be seen quicker, for the life of us we (Me, Mam and Dad having the conversation about it) don't know which option is best. Does anyone know of any sources of stuff that he could do that may help him cognitively? It just seems like such a long time for him not to be having any guidance or support. What I did want to ask is did anyone notice a big increase in their appetite post SAH? We are a family who eat 'proper' meals (meat, veg etc) but I have noticed that Dad seems to be always hungry at the moment and seems to be going through half a loaf of bread a day! He is also getting midnight munchies quite a lot too! I have also realised that there is a section for carers, my apologies that I posted here, its only now things are a little calmer I have had a good look at all the different sections/groups. Thank you all for being so kind and informative.x

Its been 4 weeks this evening and it is such a strange feeling; its hard to put in to words, thankful, hopeful and cautious all at the same time! Colleen, thank you so much for your kind words. We are so thankful that he is with us and know just how lucky we all are! He can walk, talk, feed himself, has his witty humour and all the same mannerisms. He has lost a lot of weight over the last few weeks but thankfully after all the cake and yoghurt and treats we have taken him he has put some back on. He has been saying a lot over the last few days how he's ready to come out now, we know that it will be a while but I think its more that he's ready for some peace and quiet as the ward is on is very busy! He asked for his phone so we have taken him one in that has just our numbers on and he just phoned my mum for a chat, which was wonderful to hear! Daffodil, when Dad was frustrated yesterday I told him about this website and it seemed to encourage him a lot. As you say Colleen it made him realise that these things were to be expected and not to worry. He has in the last few days started questioning if things were dreams or had they happened. Macca, thank you for the advice about remembering more when you are doing things; we have taken a few trips outside and the fresh air/change of scenery seems to have benefited him greatly. Subzero, Louise, thank you for your concern for us. We are both lucky to have very supportive family and friends who we have to actively discourage from doing everything for us! I may 'bank' some of the house cleaning offers for a later date however! Mam is living with me and my husband who makes sure that we eat well too! Thank you all for your advice and support, it really is a help. I keep it in mind when we are with Dad and try to make sure that we don't get carried away in the length of our chats and making sure Dad knows that we are happy just sitting there quietly. Maybe an odd question, but were there any phrases or ways people spoke to you that you found/still find jarring? As with any scenario I am sure there are a number of stock phrases that people use that are irritating to the person in said situation...

Daffodil, I also meant to thank you for the diary suggestion. Dad is a big reader/in to his books, so I think it would help him to write it down. we ourselves have been keeping a diary of his treatment to help ourselves remember and for Dad should he ever want to look at it.x