Monday 25th July 2011

My apologies not to have posted while significant things have been happening. I have gone away for work again (and was actually out of phone and internet range for a few days). Helen continued to fluctuate last week but the bad days seemed to be worse - weaker and less able to stand or walk. She had 2 more episodes of pain (which hadn't happened since the last palliative care visit). So in the light of all this - and as we had not heard any results from the blood tests the previous week Louis asked Dr M to visit again on Thursday. Strangely all the bloods had been quite normal (except sodium but it was improved) so they had assumed things were ok for us. When Dr M visited the main focus was trying to find a way for Susan to cope if Helen wasn't able to walk (poor Susan's back injury has flared up again and she definitely can't manage Helen if strength is required) but she also made a comment regarding Helen's sleepiness - basically saying that increased sleepiness is often a sign of the beginning of the dying process irrespective of normal blood tests and lack of changes on imaging/CT scans. She suggested it probably wasn't worth us continuing to look at nursing home options (which had been in our minds again for when Susan leaves us at the end of August) - intimating that Mum may not live long enough for that to be needed.
Friday morning Louis and Susan had a very difficult time with Helen as she woke up complaining of pain in her back (he felt it looked as if she'd slept in a weird position), then when she was walking with Louis her legs collapsed out from under her and they both ended up on the floor! Not good for someone with back pain to begin with and pretty hard for Louis to get her back up and onto a walker/wheely thing. Would have been pretty much impossible for Susan on her own (which she would have been this weekend) so Louis changed his flights to stay in Darwin til Tuesday afterall. Luckily they got hold of me just as I drove out of range so we workshopped what to do and via palliative care Louis managed to get Helen admitted straight into hospice. This might sound easy but - long weekend in Darwin, not many beds, no medical staff rostered to hospice over the weekend - much more of an achievement than you might think! And so worthwhile. Las time Mum deteriorated and I considered hospital I ended up not doing it because I couldn't bear the thought of putting her through the process of being admitted via A and E, sitting in the freezing Main hospital aircon and potentially not getting a Hospice bed at the end of it all in any case. One of Louis' amazing qualities is his capacity for advocacy and Helen (and I) have benefited from this so many times.
I haven't spoken to her yet but Louis and Susan have been visiting and say she is relaxed and peaceful about being in Hospice and not uncomfortable or in pain at all.
The Hospice is a very safe feeling place with lovely staff, good nursing and (possibly best of all) the potential to open the doors and windows and have air at a normal temperature.
I think she is likely to stay in and have a bit more of a "medical" workup next week in case anything that has been happening is reversible plus to support Susan while I am away. At this stage I fly back to Darwin Wed night but leave again Thurs afternoon - then return to stay on Monday. Any Darwin people reading this feel free to visit Helen at Hospice - they are very welcoming and I'm sure Mum would like to see people. She is always happy to be woken if she's asleep when you arrive (really only takes a second for her to drop off again in any case) plus she has very explicitly spelt out that if she falls asleep while you are visiting and you decide to leave she would like you to wake her up to say goodby. Fair enough I guess when you have lost your vision, let alone are having memory issues.