Wednesday 21st September

This morning I am writing from Helen's bedside. Playing the "Grimstones" soundtrack which has been one of her favourites through the last few years. I can see that Kaye and Jo have both been in to see her. From what the nurses say the overall impression is that Helen is deteriorating (although things still fluctuate). Apparently she has not had any more fevers but does seem to benefit from regular panadol and occasional morphine. She sleeps much of the time and is not as responsive as before. Sometimes she accepts breakfast and seems to enjoy it but sometimes she declines - or falls asleep half way through. When I arrived today she recognised me/my voice. I asked her to open her eyes, which took a while, but she did. When I asked how she was she said "alright" and she gave me half a smile when I was holding her hand and weeping! It's still a blessing that others' distress doesn't seem to distress her. I feel able to be myself with her. The nurse looking after Helen today was very keen to catch me and update me on various things. I found that process upsetting (again!). One of the things I intend to feedback (when I am more rational about the whole thing) is the suggestion that rather than coming in as soon as I arrive, or grabbing me in the corridor as soon as I arrive, and then talking intensely and/or asking me questions about Mum, they just let it be known that they would like to speak before I go, or offer a specific time to talk about her. Otherwise what has been happening is I start out open to them but then get frustrated and upset as I haven't even had a chance to say hello to Mum or see how I think she is myself and someone else is filling up all the space telling me about her (and often telling me things that I actually know better than they do which is extremely irritating!). Why don't we (health professionals at large) remember the basics of checking where people are at with knowledge/emotions before telling them things? Even just asking permission to talk about stuff is a good move. I really feel the need for a little bit of solo time to reconnect with her before someone comes in to tell me things.