StephB

I can completely relate to all your feelings and emotions. I didn't listen to advice and didn't leave my husband's side while he was in ITU, it's so hard to leave them but ITU is so draining, I just used to sit there obsessively watching the monitors and the EVD. When Robin first came around he didn't know any of us either. I would just talk to him quietly as if he did know us and I made him a simple scrapbook with immediate family's photos names (and ages for the children). He still uses it now although his long term memory seems to have settled. Robin had to have gloves that looked like boxing gloves put on his hands because he was always going for his tubes but he still managed to pull the NG tube out quite a few times! Determined! He hated them as they would make his hands sweaty but we would be allowed to take them off when we were there visiting as long as we held his hands. Try and look after yourself, although I know that you feel that you are the last on the list of priorities, your Mommy needs you to be strong for her. Be kind to yourself Steph

Thank you Macca and Paul for responding.

On 24th January of this year, I received a devastating phone call from paramedics to say that Robin had collapsed and was unconscious. At the emergency dept, we discovered that he had had what the Drs described, as a devastating and catastrophic bleed on his brain stem. He was rushed to UHW (an hour away) and straight into theatre to have an EVT drain fitted. He was unconscious and GCS 4. I was told to prepare for the worst. 24 hours later, he had a re bleed and again I was told it was unlikely that he would survive. He came through. Our journey continued with another EVT drain needed to be fitted because the other stopped working, a coiling operation (I had no idea how traumatising it would be to hear the potential risks and then sign the consent form) and 7 days in ITU before he regained consciousness. I had to leave our 4 children at home with my mother and move in with my boss to allow me to be at his bedside. He regained consciousness and seemed to know who we all were. He then developed hydrocephalus and his conscious levels dropped and he was in and out for 10 days. He ended up having to have a shunt fitted and then 2 attempts at correcting the shunt (including one life threatening one) before he stabilised. 14 weeks on and he is now in a rehab unit 25 minutes away from home and is doing well. He can walk (with supervision) and is learning to talk again (he whispers). He has massive memory problems, particularly short term, and is still lacking mental capacity. He gets confused and agitated easily, especially when his insight returns. I am now preparing for a discharge planning meeting with the MD team on Weds, and feeling very overwhelmed by it all. I want him home more than anything, (especially as I am less than satisfied with the care provided at this unit) but the effects of his SAH/hydrocephalus are more apparent as we are having weekend leave and I am with him 24/7. He whispers, sometimes quite loudly too, and makes inappropriate comments, swears a LOT and lashes out and me and the children (verbally). I now, compared to others, we have been extremely lucky and we are blessed that he is still here, but that doesn't make the reality any easier to cope with. Robin and I have been together 11 years, married for 6, he is 39 and I am 31. I feel that I am really struggling to come to terms with how he is now and the major shift in our relationship (particularly as I am so involved in his personal care) don't get me wrong, I wouldn't not do it, but I'm in a real "it's not fair" place. The children have had a massive reality shock this weekend (the first with them being here as well) they are 16,14,12 and 6 and have found it hard to accept how Dad is now and I don't feel that I can support them because on the inside I am falling apart. I have already been diagnosed with PTSD (keep having flashbacks at night of ITU particularly and wake up shaking and sweating and can't go back to sleep afterwards) How does anyone get through this? Any tips/advice greatly appreciated, I need all the help I can get. Thank you for reading.