Monday 26th September 2011

Over the weekend Helen has varied a bit. I had a sad visit on Saturday where she seemed miserable and wouldn't really talk to me much at all. Later in the same day however I gather she was in good form and when I visited on Sunday much better again. She managed to have a short talk to Sally on the phone and seemed to really enjoy that. I shared a hot drink with her - instant coffee with 1 sugar and plenty of milk which she really enjoyed and mostly managed to drink on her own with the odd bit of supervision in case of spillage. I am away from Darwin until next Saturday and Louis arrives today - I told Mum both of these things and she seemed to take them in. Overall she remains pretty sleepy but comfortable. I wish there were more of us to spend time at her bedside as her good times are unpredictable and it seems I only catch them when I spend a fair bit of time there. I have begun my project to decoupage Helen's coffin with her handwriting and screen-prints - I'm happy with the start although it has a long way to go.

A visit from Hayley the Music Therapist

Helen asleep in bed and Umphy waiting patiently outside

a little more on Wed 21st September

I read Mum a few poems from her own collection. After 3 poems she said "That's terrific. I did enjoy that." I asked if this meant she'd had enough - but couldn't really understand the answer. Lest she be burdened by politeness and good manners I decided to give reading a break and resorted to massage and Cello music for a bit. She fell asleep again. A bit later she woke up and asked for chocolate! A new taste for Helen - pre the last few months I would have been pretty sure she didn't like chocolate. Ate a piece of chocolate, a sip of a hot chocolate and about 4 spoons of custard and ice-cream. Smiled sweetly at me when I held her hand and said "You're all brushed and ready." Now playing Leonard Cohen - and she's drowsing again.

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.

Monday 19th September 2011

Yesterday morning Helen was not good at all. Barely responsive to me. A few words for my friend Dave who was there with me - as he said her urge to be social and socially appropriate seemed to kick in! Sadly one of the things she managed to convey was that she was "not ok" but could not tell us how or where. Breathing through her mouth which seemed dry but not able to swallow water let alone food. She was hot to the touch so we took off her blanket and asked the nurses to check her temperature - 37.6 degrees so I asked could they please give her PR panadol regularly. As she has been on IV antibiotics for 5 days or so I guess this either means she has something new or they are not really working. I found it upsetting to see her yesterday - my emotional reserves for responding to this rollercoaster are thoroughly depleted. Thank you to those who have sent messages and phoned and my apologies for lack of response - I just didn't really feel like talking about it yesterday. As far as I can see the idea of her moving to Brisbane seems pretty unlikely so I imagine Louis will probably come up again this week which will be nice for Helen. Partly as he is not working up here but partly as he is coping better than me at the moment he is able to spend much longer periods of time at her bedside than I can and there are certainly still times where she appreciates that. In the last week her friends Kaye, Shirley, Lil, Bilha and Jo have all spent some time with her. Sensual pleasures such as massage and reading to her are still enjoyed. The nurses told me that the day before (Saturday) and also on Sunday night (yesterday) she was much more with it and able to enjoy being read some poetry and to eat a cool mango. I haven't seen her when she has been good for about 6 days - either my timing is off or I'm wearing the opposite of rose-coloured glasses - but it's good to hear that it does happen sometimes (even if only with others). She mentions Dorothy often who is back in Sydney but would love to be more in touch with Helen. Alas telephone communication really doesn't work very well with her at the moment. In my current life schedule I am supposed to leave for a conference in Canberra on Tuesday the 27th and then start on the annual leave plus other conference time that leads up to my birthday celebration in Natimuk plus the Natimuk Frinj and then a short trip overseas. Certainly the initial conference is flexible/cancel-able and so is the beginning of my leave but I am fairly determined to follow through with plans as they stand for my birthday and Frinj. Anyway, as I have observed before this whole experience is a lesson in taking one day at a time so we will see what happens next. Family members reading this - I apologise again for being out of contact. Visitors are welcome and I will endeavour to be more available for phone catch-ups in the next few days.

Thursday 15th September 2011

Louis and I have spent the morning at hospice with Helen. In the book I can see she has had some visits from Jo and Shirley since Louis was last here. This morning she is still pretty sleepy and monosyllabic and although she responds to Louis appropriately will only give me a quiet mmm. We have had a big talk with the doctor on duty - about what's going on for her, what's going on for us, what may/may not happen with treatment/without treatment. At this stage plans for Brisbane are suspended until mid next week. We have agreed to let the staff continue as they are - with a course of antibiotics, ongoing clexane etc until then and then re-visit plans at that stage. If she doesn't pick up or worsens then Louis and I both think we would prefer to stop active treatment and see what happens - bearing in mind of course that you never really know what will happen... If she improves a fair bit maybe she can still go to Brisbane.

Wednesday September 14th

Photos from yesterday. Today she is still improving - ate breakfast and is much more alert!

Tuesday 13th September 2011

I visited Helen this morning and she was very very sleepy. Seemed to recognise me but barely and did not open her eyes nor use words at all. I went away feeling things were fairly dire (knowing she would already have had at least 2 doses of the IV antibiotics and she looked not to have had any fluids for the last day and was very dehydrated). Louis arrived at lunchtime and he and I headed back out to the hospital. Louis and she had some time alone and she was remarkably more alert and perky - spoke to him, ate a whole mango and some strawberries, some yoghurt and some jelly, drank ~ 1 1/2 cups water and most of a hot chocolate! I joined them just now and she is still enormously better than this morning. Coughing a bit so perhaps a chest infection is the more likely issue. Not too unlikely with her immobility. I feel rather amazed and am reminded again that there is no point jumping too far into the future with my thoughts and plans ( a very difficult resolution to uphold). Several of Helen's friends had made a special effort to see her over the weekend to say goodbye - in the belief she was moving to Brisbane today. Some have been back to sit with her since she deteriorated. Thankyou to them all. Shirley has finished her drawing of Helen's face - and left her sketchbook at hospice with a lovely note for me and Louis. I'll upload a picture of it soon.

Monday 12th September 2011

Things continue to change... On both Sunday and Monday Helen was very very sleepy. This morning I spoke to the palliative care registrar and he told me she had a temperature of 37.9. He thought it was likely to be due to another UTI and planned to take some bloods, urine and start IV antibiotics. We agreed that flying tomorrow was unrealistic so I put the flights off til Friday. Louis has just told me that he has had multiple contacts with the hospice today - doctors, social worker and nurses - all keen to impress on him that Helen is almost unrouseable. He plans to come up tomorrow. I don't know what to make of it all. If she does have an infection that might be terminal and all it is doing to her is making her sleepy maybe we should let her go...? Conversations for tomorrow I suppose.

Monday 5th September

Helen is still in Hospice in Darwin and remarkably well considering.... We have made definitive decisions about the next step: Louis will return to Brisbane tomorrow and I will escort Helen down next Tuesday. In the first instance she will go into a palliative care unit in Brisbane to be re-stabilised and then to BUPA in New Farm.