zoe1zoe1zoe1

Hi all, Rich and myself met with his surgeon yesterday and got the news we didn't really want - the coil in the aneurism has moved and is leaking blood back in. Rich now has to have an angiogram in the next few weeks to get a clearer picture but it looks like he now has this one to be re-coiled, the large one on the other side to be coiled and the small one to be potentially coiled but they're not sure about this one until the angi so could have to be clipped. We always new this coil may move as when he had the initial operation and they were doing the coiling procedure they had to complete it quickly as they had to urgently remove some of his skull due to the blood clot risking his life but we always hoped it would be OK. Rich has however agreed to the surgery so scary times ahead. With this next procedure there is the risk (as woith every operation) of things going wrong which could potentially take out his right hand side which obviously would be a problem for him as he has a partially paralysed left hand side but I suppose thats the chance you take compared with leaving the aneurisms and risking worse things if they did go. Anyway, plan is still for rich to come home xmas eve until next tuesday and then he is coming home again the 30th for good. His official discharge is 13th Jan but met with his doctor on Monday who has said that if things don't work out over this period he doesn't have to be dischaged on this date and can be re-admitted so there is a back up if we have problems. Overall, I feel quite relaxed about him coming home. Realising that there is still a lot of the old rich there and yes he can be a pig to me at times and I don't want to keep blaming it on his problems but I do have to remember that he has undergone a major illness which resulted in damage to his brain and a part of his brain being killed off and that not only did I not ask for this to happen but neither did he and that his life has been turned upside down a lot more than mine and that I still love him and we will just have to adapt to our new life. Well after that rather long final sentence I must go and get little uns up and get ready for work. Take care Zoe xx

Hi all, Sorry not updated for a while - been a manic few weeks and just taken a bit of a step back from things. Rich hasn't been getting as much physio as he was. think this is because they feel they have come as far as they can with him. Unfortunately, I think this has resulted in his walking deteriorating - the strength in his leg isn't what it was a few weeks ago. Deep down I think this is a ploy by the hospital. They want us to send him to another rehab centre in Wolverhampton but we have refused as we feel Rich would be better at home but the professionals aren't entirely happy with our decision. His doctor has asked to see me on Monday as I think she wants to try to talk me round but if you could meet Rich and see how desperate he is to get home I think you would agree with my views. We have a meeting on Tuesday with Mr Shaw his surgeon to get his latest MRI results and to give a decision on whether Rich wants the remaining aneurisms coiling. One day Rich says yes, the next he says no - just not sure at all what his decision will be. On a good note, had a letter to say we qualify for the higher levels of mobility and care payments for Disability Living Allowance although we can't get it until he is home. Well, not much more to add. Will update again next week. Zoe

Been a busy week. On Thursday we had Richards latest goal planning meeting. We were hoping to get a discharge date in December but they have said the 13th January. However, he will be home for 4 days over Xmas then back at hospital for 2 days then home again New Years Eve for good - we then have to go back on13th Jan for his official discharge. The carers have said they can't come in for the 4 days a week until January but we are hoping they may be able to do a couple of Mondays in december. Richard is obviously very upset as he was convinced at the meeting they would say he come home straight away. Had a visit this week from the Stannah man for the stairlift and he has to come back Monday to take some accurate measurements. We have curved stairs at the bottom but also not much room in the hall and he thinks things will be tight. No problems, they can take down the porch Rich built, knock part of the wall at the front of the house down, rebuild it all and put in straight stairs. Form has gone in for Disability Living Allowance so just have to wait for the to sort this and have the form ready for ESA which I really need to get a wriggle on and complete. It has just been mad the last couple of weeks and now Xmas is approaching I have various school concerts, carol services etc to go to. My little man Luke goes to school on Monday for a practice half day so feel a bit down that he is growing up and will start school proper in January. Had things gone to plan me and Rich could well have had a new baby by now and at the moment am struggling to come to terms with the fact that realistically this will not happen now. On the plus side finally met John's Julie today at the craft fair at the hospital and had a nice chat with them both. Take care all xx:-D

It does sound good on paper doesn't it. Richard came home this weekend and stopped Friday and Saturday night. I found it tiring as I don't really sleep much with him being downstairs but the stair lift should be in early january so this will be better getting him upstairs. On Saturday night we went for a meal wirth his parents and sister, brother in law and nephew. It was a place where there is a kids play area and he enjoyed being able to watch the kids play. We went then for a meal and he scoffed his scampi down. Didn't do much Sunday. Played a word game with the kids which he managed about 15 mins before his concentration went but Xara really enjoyed it. Coming again for 2 nights this weekend and the plan is that Monday morning the carers will come so we can have a trial run so fingers crossed for this. On Saturday his brother in law and nephew are taking him to see out local team Telford Utd play - he is really looking forward to this. His anti-depressants have been changed and this seems to have improved his mood. He also only asked for fags twice over the weekend so hopefully he is realising that he no longer smokes. Anyway, going to go now and see if I can get than son of mine into bed. Take care everyone.

So sorry to hear this very sad news. I remember being in hospital after Richards aneurism burst being told that if I didn't sign the consent form he would definately die and if I did he would probably die anyway. Thankfully, he did pull through but with many problems but I am so thankful to the hospital for saving his life. Sadly, some people don't make it and my heart goes out to the families. Sending love to your friend through what is surely a difficult time. Zoe.

Richard came last Friday and stopped at home for the night. I was worried but things went fine. It has however, made me realise how much life will change when he comes home for good. The biggest problem at the moment is that all he wants to do is lie in bed all day. We cannot get him motivated to do anything or go anywhere. He won't play games with the kids. I came home from work yesterday as all I kept doing was crying. Having him home was lovely and felt right but just so worried that I won;t be able to do things with kids as I cannot leave Rich alone so if he refuses to go anywhere the kids will suffer. If anyone has any ideas on things we could try it would be appreciated. People who have been through the same may be able to tell me why he is being like this. Thanks

Thank you all for your concern. The hospital feel that they have done all the rehab they can at the moment with Richard in terms of his mobility. They suggested sending him to another rehab unit where he can work on his memory, concentration etc. I get phone calls regularly from Richard as he very depressed and he begs to be brought home. Taking into account the hospitals suggestion I feel it would be in Richards best interests to come home. He misses me and the kids so much and I think to send him somewhere else would just devastate him. I am in contact with our social worker who is sorting out the carers - a company called ABICS who deal primarily with people who have suffered brain injuries. They won't just let Richard sit in a chair all day but will take him shopping, cook with him etc. They will come in Monday-Thurs from 8:00 till 2:00 whilst I am working. We are hoping initially to send him to Headway in Shrewsbury on a Friday which is my day off with a view to increasing it to twice a week. I will then care for Richard the remainder of the time and at nights. Initially, Rich will have to sleep downstairs as the stairlift won't be in until Christmas time but I am getting all sorts of sensors etc that will alert me if Rich tries to leave the house, get up the stairs etc. I am worried about how things will pan out as it is a big responsibilty to have him home but I have explained that a lot of trust is needed as I will trust him not to leave the house, etc. Luke is looking forward to daddy coming home, Xara isn't so sure but I will make sure there are times she can have time away from the house (dance class, brownies etc) so hopefully things will settle down. I know on paper the above sounds the ideal plan and I am certain there will be problems but this is the next stage in our lives together and we will battle our way through.

Had Richard goal planning meeting today. The hospital have said they have done all they can with Richard so we were going with the view to getting him home and they have suggested sending nhim to another place where they can work on his cognitive problems. For the last month he has been told he is heading home so this was a big setback. However, after a lot of disciussion we have decided that itn is in Richard's best interests to come home. He is very depressed and just misses his family so much. He will have his Saturday visit this week then next Friday he will come home and stop the night to see how we get on. We will then do this a couple of times before he can come home. I had been really worried about him coming home but now feel happier - done a bit of soul searching and realised that he is still the same person I fell in love with. Had an assessment this week to see if we qualify for a Disabled Facilities Grant and we can so we will be having a stairlift installed and a few adjustments made in the bathroom. Downside this week was that Richards Statutory Sick Pay ended (knew it was soon - just not quite this soon) so now have to manage on just my part time wage and our tax credits. Need to fill in form for ESA and am off to Citizens Advice in 2 weeks to fill in form for Disability Living Allowance. You have to have a quick assessment with CAB to see if they can help you complete forms as if your income is over so much they can't. Anyway, feel like things are moving forward now.

Richards nan had a brain heamorrhage. Our 9 year old daughter had an mri a few weeks ago to check whether she has any aneurisms as she has headaches. we get the results next month.

Not posted for a while. Had a horrendous weekend. On Friday, afternoon Rich phoning me constantly to say he wanted to kill himself I had a bit of a breakdown. Mom came round to see if I was OK and suggested perhaps seeing if richards mom and dad would have him saturday to take the pressure off me. Dad couldn't get hold of his mom and dad (pam and tony) so rang his sister. He came back in the house really upset saying that his sister thought it best if I just walked away and my dad said he felt the same way. His siter was going to ring pam and tony to arrange for them to have rich the next day. I spoke to Rich who said he was looking forward to coming home so I rang his dad to say just to bring him home. The argument started then as apparently Richard told his parents I said that if he didn't abide by my rules when he comes home I am going to put him in a home. I ended up hanging up on him. His mom then called my mobile ang I put my mom on which then resulted in some quite hurtful things being said towards me and my family. Anyway, it all got sorted yesterday but things were said that can't be forgotton. Richard seems to say things that aren't true and seem to be landing me in a whole heap of trouble. The end result is that I said what I have said all along and that is that rich will come home and I will see how things go - I can;t do any more then that. Sorry to bother you all with this when peope have their own problems but just want to get it off my chest. Zoe

Had another successful home visit yesterday. Been a busy week - on Monday we had a visit from the OT who made it fairly clear there was little chance of getting a stairlift. Saw Mr Shaw the surgeon on Tuesday. He has offered Richard a coiling on one of the two aneurisms (the one is too small), He pointed out that if Richard leaves it there is a 5% chance it will burst and this will increase year on year. On the basis that he is still young this percentage will be quite high by the time he is 70. If however he has the coiling, he has to realise that he could suffer a stroke which will knock out his right side. Richard has very limited movement in in left leg and none in his left arm so should he lose his right side things would become very difficult for him. He looks to me for advice but I really don't know what to suggest. On Friday we had the social worker visit. She is going to look into which days Richard could go to Headway and then have a carer the remaining mornings when I am at work. We will have to have a financial assessmet to work out how much we can contribute. In terms of Richards progress, he has starting walking this week with a tripod stick. He has had a few falls as his left leg is just so weak. At the moment when he steps forward he is having to drag his leg through. He has spent a lot of time in the gym this week though working on his leg muscles so hopefully it will get stronger. I still don't feel to hopeful about his arm. It has been 6.5 months and still there is no feeling in it. Anyway, we will see what this week brings. Take care everyone Zoe

Yesterdays home visit went really well. I took Rich to the pub to see hsi mates which he really enoyed. He has now had 4 cigarettes. Not sure how I feel about it. He says that you only live once and wants to do what he enjoys. However, he still has 2 aneurisms (one of which is large) and smoking doesn't help them. Does anyone else smoke who has had a SAH or still has aneurisms. I was hoping after 6 months he wouldn't be bothered by it. Still not sure how I feel about him coming home. We had our problems before and his mom has said to my mom that I can just walk away from him and get on with my life with the kids. Not sure what do do - feel I should give it a chance but the thought of him having to have 24 hour supervision worries me. What if he never gets any better, what is he gets out of the house - feel like it is on me and just really scared. Going to leave it there cos am starting to well up. Zoe

Had another goal planning meeting today and they have told us that Rich will be home in 6-8 weeks. That is fab news except for the fact that they consider him to be too unsafe to be left alone so will need 24 hour supervision. I never really considered this - thought he would come home and one of his jobs would be to pick the kids up from school but that will not happen and depending on his recovery may never happen. On the plus side Richard can now walk a very short distance with a tripod stick but they have said that in terms of him not being left alone walking isn't the best thing as it will be harder to contain him. Richard has gone into some sort of denial about his situation and disability and now spends as much time as possible in bed. He wont go to the dayroom and take part in activities - only gets up for his physio so they have now said he can only lie on his bed at night and between 2 and 3 in the afternoon. Social Worker is coming to see me next Friday to discuss what we need to do for him in terms of care, etc. Just feels so mean that Richard thought he might not walk and now he can he can't be left alone to go places, etc. It looks unlikely that he will work again or if he does it is a very long way down the line. What is hardest for me is that before he was ill we were finding things difficult between us and now Richard is completely unaware of the problems we had but I'm not. If anyone else is in the same position in that they can't be left alone I would be interested to chat as just so worried about things. Thanks for listening Zoe PS - Rich is over the moon though as the end is in sight for him

Yesterday seemed to go a bit better than last week. After Rich moaning about me fussing too much I kind of left him a bit - went to do washing up etc leaving him alone with the kids. Last week he said having visitors was too much for him so yesterday we kept it low key and later said he was bored and didn;t want to come home just to sit in a chair. He wants to come home and walk so I then had to explain that that is what the hospital do - coming home is to make things a bit more normal etc. His sister arrived to take him back to hospital and he suddenly became very depressed. He kept saying he wished he was dead and didn't want to come home again until he is ready. Eartlier in the day when my mom came to see him he said to her that he couldn't handle the noise the kids were making. Not really sure what to do as my kids (espcecially my daughter) only comes with one volume and thats loud. Having him home for a day is a lot more work than I ever imagined - in a way wonder if it would be easier if he didn't come home again for a while. i feel like everything I do for him is wrong.

Thank you everyone for your support. They had a chat with Rich yesterday at the hospital and have gone through things he can't do on a home visit (mess with the car, try to stand up unaided etc). I then saw him last night and reiterated it all so hopefully this saturday will be different. Will update you all again this weekend to see if things have improved. Thank you again.

Thank you to everyone who has replied or messaged me. I think my biggest issue to deal with is how my future has changed. Before Richard was ill we were trying for another baby and I was looking into going to college in preparation to go to uni to do midwifery. I know these things are not out of the question now but they are more out of reach than they were 6 months ago. Our life was all mapped out and then this came along. I am also preparing myself for Luke starting school after christmas and am finding this very hard to deal with - my baby is becoming a big boy. It is very hard when the person you love changes like this. Rich has never been horrible to me, friends used to comment on how perfect our relationship was and it feels like this has gone. I spoke to the OT today and told her about some of my issues around richards behaviour (not just things he said but when I was driving I wouldn't pull up at the shop so he pulled the handbrake on and put the gear into neutral while I was driving) and asked them to talk to him as when I do it I am nagging but he listens to them. Anyway, going to bed cos feel completely drained. Hopefully tomorrow will bring more happiness. Thanks again, Zoe

Hi all, Richard did phone back late last night to apologise. He said he has just has enough and wants to come home. The problem is that he doesn't think he has a disability. He won't socialise with people at the hospital who are 'worse' than him which does limit the number of people he gets on with. Thank you all for your kind messages. I think I am going to get in touch with our Carers Contact Centre and see if there is a group I can go to. I am already on medication for depression which was increased when Richard became ill and even though I still seem to be very down I dread to think what I would be like if I wasn't on it. It is very helpful to speak to people on this site who have had an SAH as you can tell me what it felt like when you were recovering and make me a bit more understanding as to Richards position. I tell Richard that my life has been changed too and he apologises but then I feel bad as he shouldn't be apologising. He didn't ask for this to happen to him. I'm going to stop going on now as I can feel myself welling up again and I need t get the kids out of bed. Thanks.

Just need to come on here and vent my frustration. Richard has just phoned to say he wants a divorce. He says this is no life for him and that I am having it easy being at home. What can I tell him? Compared to him I have got it easy. I suffer with depression myself and do struggle to keep on top of the housework and I haven't been strict with the kids and they run rings round me but it's nothing compared to what he is going through. I know deep down he probably doesn't mean what he says but I am fed up with the fact that most times I come off the phone to him I am in tears. He is horrible to me - makes awful comments about my weight and criticises everything I do for him. He is horrible to the kids too - poor Xara is really going through it as he doesn't hide the fact that he prefers Luke (he has said this to my face too). I know his brain has changed the way he is but I dont like it and feel helpless. Just don't know what to do anymore.

Well Richard came home this afternoon and it went fantastically. As they pushed him down our path he had the biggest smile on his face. The kids were a bit overpowering but he doesn't seem to have an issue with loud noise etc so they didn't seem to bother him too much. He got a bit upset when he had to go back but went with no problems. He is coming home again on Saturday so looking forward to that. I was a bit on edge as he has a habit of trying to stand by himself and walk andd he kept sitting at the front of his chair and I kept nagging so think I annoyed him a bit. At one point he did stand himself which I told him off for but on the plus side he was standing really well by himself so feel quite proud of him. He feels tghat the hospital are holding him back as he just wants to work at walking etc but they are pacing him and taking things slowly which is driving him mad. Anyway, a brilliant day in all and looking forward to the weekend.:-D:-D:-D PS - Thank you to Sally for the messages - it means a lot

:-D:-D Had some good news today. Rich is coming home for a few hours next Wednesday. The hospital are bringing him for a home visit and will leave him with me and I will take him back later. It is such a big thing for him as he is very depressed due to missing home - can't wait. :-D:-D

Now I feel guilty for writing this stuff.

Took Rich to McDonalds again today with the kids but travel sickness took over and as we pulled back onto the hospital car park he threw up in the car. Up till that point the afternoon had been lovely. Realised just how hard it is to look after him when he has one arm that doesn't work at all. I was annoyed with him cos thought why didn't you just open the door or reach for the sick bowl but then realised that he couldn't. Had to get Xara to go and get a nurse to come and help cos I also don't deal with sick very well. On the plus side and ramp has now been delivered so depending on the hospital all is ready to bring him home for the day (they can give him travel tablets cos its an hours journey). Feeling a bit down today. Told my parents that I feel very resentful - I know this is not Richards fault at all but just worry about what the future holds. There is a new side to Richard now that is not a side I fell in love with and it is taking some getting used to. I sound like such a cow saying these things but perhaps if I get them off my chest I can move forwards. Yes, this is very hard for Richard but I am struggling just as much. Going to stop there cos am getting emotional and don't want to ruin my laptop with tears.

The kids have this hand, foot and mouth. Luke is OK but Xara still has some blisters. It doesn't make them poorly - its more of an inconvenience. Thank you to everyone for their continued support - I have no idea how I am staying strong - I definately don't feel it. I remember waking up News Years Day this year thinking it would be a good year. So far: Mom diagnosed with leukeamia Richard had his SAH Luke had meningitis Grandad has skin cancer Risk of losing job I do just feel like giving up but I have the 2 most amazing, adorable children anyone could wish for and they keep me going. Xara has an MRI scan next week to see if she too has any aneurisms so I am praying that she doesn't - my family don't deserve any more bad things. I'm going to shut up now cos I'm waffling. John - I'm well chuffed with the drive - kids love it cos its a smooth surface to play on their scooters

Well on Saturday I took Richard on his first outing to a McDonalds drive thru. He enjoyed it but then kept moaning cos I hadn't taken him home. Was supposed to take kids but they have come down with hand, foot and mouth so they can't see him for a couple of days. Managed OK by myself getting him in and out of the car. Commode has arrived so just waiting for the ramp and we can look at bringing him home for a day.

Richard had his second goal planning meeting yesterday and it went very well. I am now allowed to take him out in the car. He has been getting travel sick in the ambulances since becoming ill so I can take him on small journeys to get him used to the car. Hopefully, in about 3 weeks we can also start bringing him home on Saturdays. The OT's have out in a request with Telford for a ramp and commode so once this is all sorted he's all ours once a week. Going for surgery last week has put him back a little bit but I know he can get this back pretty soon. Feeling really positive even if he isn't.