tulip24

My Dad died this morning at 11am. The nurse who was with him said he went quickly and peacefully. He died just before we got there. He fought so bravely, before and after the haemorrhage. I am so proud of him. Just glad he is at peace. One of his best friends have agreed to scatter his ashes on the top of the Cumbrian Dell's, where he was at his happiest.

Well, things seem to be coming to an end. We were told yesterday that Dad will be moved to a hospice next week. His chest infection isn't shifting and there is little left they can do. His muscle weakness means that he cannot cough properly & is likely to keep getting infections. Although it is hard to accept, it's awful to see Dad as he is now. He has fought so bravely, but he's tiring & getting gradually weaker. Don't really know what to say, knowing it is now a matter of time. Part of me wishes he had gone when he first had the SAH but I'm grateful for the time we've had since.

Hi Pam, My Mum & I are in a similar situation. My Dad had a massive bleed on 28th March & is still in hospital. He too has a PEG feed fitted. Although there have been periods where he seem's to recognise us, conversley, there have been times we could have been anyone. It's so hard & frankly surreal. I know my Mum has worried about whether she will be able to keep the house on if Dad dosen't come home. Surely there must be support out there. Have you spoken to the RCN? Surely they might be able to offer some support. I know there is a benevolent fund for NHS workers, but not sure what the criteria is. How have your work been? Are they supportive? Love & Hug's Tulip xx

Hi all, not been on here for a while. Well, the rollercoaster continues. Dad came off the ventilator and also off ICU about 3 weeks ago. He has had pneumonia for the past four weeks, despite repeated courses of antibiotics, he just can't seem to shake it off. Initially he rallied really well. But over the past few days he has gone downhill. He seems really weak, struggling to breathe, not even enough energy or strength to cough. He has fought so hard to get this far. Hate to see him struggling. Xxx

Hi all. Well, the rollercoaster continues. Dad was moved back to our local hospital just over a week ago. He remains on ICU. Things seemed to be improving, with him being weaned off the ventilator. He was managing a few hours on his own. He seemed to recognise who we were & although tired, managed to stay awake longer. Today we saw the consultant. He basically laid it on the line. Dad now has pneumonia. Because of the myositis which affects the muscles, they doubt he will be able to manage without the ventilator. Dad keeps pulling out the NG tube, so they are going to fit a peg feed. They told us he is very weak & the prognosis is not good. If his heart stops, they will not intervene. They are giving him antibiotics & have said they will see what happens. They also asked if there was anyone who would want to see him, which indicates to me that we are likely looking at the end. Today he looked so frail & tired. The other day when we went, he started crying. In my 36 years, I have only seen my dad cry on a couple of occasions. It must be so scary & frustrating as he cannot speak & tell us what he is feeling. Feel so helpless & scared Xx

Hi melody, So glad you found this place. It's a big help. I am in the same situation as you. My Dad had his SAH on the 28th March & is still on ICU. Although he is now off sedation, it is becoming clear that it is going to be a long road. It's a rollercoaster of emotions. Personally I feel so tired, both physically and mentally, trying to be strong for both my mum and dad. My husband is a tower of strength bless him. I hope you have lots of love and support around you. Don't forget you can also come here. Like people have said, you need to take time out for yourself. If you are like me, you will go throughout all kinds of emotions & I have thought & imagined all sorts. But, this is the minds way of trying to deal with & come to terms with what has happened. You said you are staying near your dad. Is anyone there to support you? Stay strong.. there will be good & bad days. If I can help ion anyway, feel free to contact me Xxx

Hi all, Just a quick update. Things feel like they have come to a bit of a standstill really. Dad is still on the ventilator & they are still on about fitting a tracheostomy. Although he is breathing by himself, it's not enough to manage on his own. They have now clamped off the external drain & are observing to see if he can manage. Mum & I went to see him today & monday. On Monday he was awake, but didn't seem to acknowledge us. It felt like we could have been anyone sat there. He looked at us blankly, then appeared to drift off into a world of his own. Today he slept most of the time. He did look at us on a couple of occasions, but seemed so sad it broke my heart. He looked so frail. I know he has done well to get this far, but I WANT MY DAD BACK.

Thanks again, Didn't visit today. But dad's brother & sister went to see him & they said he was bright, pointing etc. Karen: my dad is 70. He will be 71 in July. Which considering his age & pre-existing condition makes it remarkable (well, in my eyes anyway:)) Hope you are all keeping well xxx

Hi all, Just to let you know. Dad continues to improve. They were gradually weaning him off the ventilator. When we spoke to the nurse looking after him, she told us he is now breathing on his own, with the minimal amount of oxygen to help top him up. They still plan to do a tracheostomy on Monday however. He is now in a room of his own, where he was in the main ICU up until then. When we saw him he was sitting upright in bed, where he has been laid flat(ish) for the past 2 weeks. He was awake & remained a lot more focused than previous. He appears to follow conversation also without drifting off. His brother came to see him. He last saw dad shortly after he became ill. He was amazed at the improvements he has made. He too like us thought the very worst. It was so lovely to see my mum`s expression too. She looked so happy & relieved. We were so downhearted the other day. I think she was really struggling & didn't visit yesterday, I think because she was scared & needed a break (which is completely understandable). I realise that we still have a long way to go yet, but I just wanted to share some good news. Like my mum says, "He's a tough old Turkey" Xxxx

Hi all, Thanks for the replies. It really helps. Went to see dad today. Again he initially seemed a bit brighter, he even raised his eyebrows when I told him I'd brought hand cream in for him. He seemed to be trying to focus his eyes on us at times, but then seemed to drift off. They told us they are now trying to wean him off the ventilator. He is on stage 2 of 19, but it's a start!! Also, they have removed the central line from his neck. He's still critical, but it now feels like they are now trying to push him, rather than just keep him alive. Hard to think that two weeks ago this nightmare started. Time has flown, but it also seems an eternity. Again, thank you all hugs xxx

Hi Phillip I too am new. Welcome. Glad you have recovered so well. All the best.

Hi all, I'm new to this site. My Dad had a massive SAH on 28th March & is still on NICU, ventilated. They only repaired the aneurysm on Monday. I'm really finding it difficult. I don't know what to say to my dad. Due to a pre-existing condition, he cannot regain or rebuild muscle. So rehab will be hard to say the least. I'm trying to stay positive for my mum. But we've had so many ups and downs in this past two weeks already, I'm struggling now. Help

Hi all, I'm so glad to have found this website. My Dad had a massive SAH two weeks ago on the 28th March. Prior to this he was already in a wheelchair as he has a muscle wasting disease. All his life he has been active, having been a member of the Royal Air force for nearly 20 years & was a member of the mountain rescue team for 25 years. He was already finding it hard to cope with being immobile. When it happened he was trying to transfer out of his wheelchair when he had a massive headache and asked my mum to call the ambulance. When I got to the hospital he was being sick, but was still awake. He was given some painkillers & then started dozing off. Mum & I weren't for concerned at the time as Dad sometimes has periods where he is overcome with tiredness due to his condition. So we just let him sleep. I had no idea- I'm a nurse, so feel I've failed him in some way. The Dr eventually saw him & sent him for a CT scan straightaway. Next thing we knew he was taken into resus & was then transferred by blue light to Sheffield. He has been on ICU ever since. The first night he was given a 15-20% chance of survival. They put a drain in. Then his heart stopped. A few days later his kidneys stopped working. They have been having problems keeping his blood pressure stable. On Monday they coiled the aneyursm as he has been too unwell up to that point. Yesterday we went to see him & were so happy that he seemed to be bright, responding to us even though he's still on the ventilator. Then today we went, to find they had replaced the drain because it had blocked causing fluid to build up. He seemed so flat & looked so unhappy. Hardly moving. They are now talking about a tracheostomy. We spoke to the Dr who said he is still critical.That it's a waiting game. It's been two weeks he's been on critical care. Yesterday we felt so optimistic. Now, I am so scared of the outcome. My Dad has always said "never let me get like that". It is compounded by the fact that when he loses muscle, he cannot regain it. He already had swallowing problems as his condition progresses, weakness in his arms, unable to walk etc. The longer he is immobile the more muscle he loses. I realise that nothing could have predicted or prevented the bleed. I just hate to think what is going on for him at the moment. He must be so frustrated, scared, angry. I feel so hopeless & helpless. I also don't know how my mum is coping, although I think she is really struggling. She nursed both her parents through long illnesses. Then my dad developed this wasting disease. Along with other horrible times which I won't go into, I feel so angry. Neither of them deserve this. They have both worked so hard all their lives. Anyone who says you make your own luck in this life has never met my parents. They are the two kindest, easy going, hard working people, but life seems to kick them back. Sorry for ranting. I'm just so scared of what is happening. I want what's best for my dad & mum, whatever that may be.