An excerpt from a lovely email from an old friend and student of Helen's

I have wonderful memories of Frank and Helen from my student days. Frank was such a bon vivant with an amazing personal history who challenged us to think outside the square. We had never met anyone so exotic in our lives. Dear Helen was such wonderful teacher with a developed sense of propriety (I know my behaviour gave her palpitations at times during my 4 month placement with her at Child Health and again when we worked together at the Family Court). She had a wonderfully quirky way of looking at the world at times which I enjoyed immensely. I remember her coming into the Court one day wearing some sort of mad hat and a red nose. She had driven from home with these on. I sure some of the boring conservatives at the Court were nonplussed but I thought she was fabulous and admired her for daring to be herself. When I think of Helen, it is with great affection. I am really sorry that I have not had the emotional energy to have been more involved and supportive over the last couple of years. My loving thoughts are with you both and with Helen at this special but difficult time. I hope you will be able to tell Helen how fond I am of her and that I am sending her love every day. If it is not too much to ask, could you write on her coffin for me – respected, sensitive teacher. Thank you.

A lovely email from a friend of Frank and Helen's

Dear Natasha and Louis, I keep following the blog. These are hard times for you both, waiting and wondering. When I look back across the decades to the years when Frank, Helen and I were together almost every day, and remembering so vividly what they were like then, I know they would have been incredibly moved by the quality of love and care you've been giving your mother. I can see and hear him with his immense passion and intellect, and her with her gentle wisdom and humour, discussing it over the table with incredulity, pride and great concern for you. Though having very different backgrounds and personalities, each in their own way would have given you the same core message - Know if possible that we love you, even at moments when barriers divide us. Be proud of and true to who you are. Be real. Do what you can. Try to be safe. Engage with the world but celebrate the little things in every way you know. But remarkable parents often have remarkable children. Hang in there, the two of you. The Natasha/Louis cheer squad is with you. Warm wishes, MC PS If it's OK for her, please give her a hug from me.

Monday 10th October

I've been away from Darwin since Friday - initially in Hobart and now in Melbourne. Louis and Emma spent the weekend visiting Helen and this morning have both headed back to Brisbane for a while. Over the weekend Louis says she had some really great moments with them. He brought her fresh squeezed orange juice one morning and a home made beef soup another time and she really enjoyed both. Whilst she was sleeping he and Emma were befriended by another patient from a few rooms up who sounds like a wonderful person. They all read Helen's poems together and later the other patient came in to see Helen and share with her how much the poetry had moved her. Louis found this very special. He is planning to reprint "Refugees: Living on the Margins" as there are not so many copies left of that volume and it is his favourite. In the interim Louis and I have received a number of very touching emails and messages from friends and family around the world. Thank you to all those who are thinking of us. I have the urge to share one of them with you all as it is from a friend who know both my parents well when they were young and reflects beautifully on that time but I guess I should ask his permission first :). One friend from another country asked me to explain the coffin decoupage in more detail as it was hard for her to understand long distance and in her second language. "Decoupage (or découpage) is the art of decorating an object by gluing colored paper cutouts onto it in combination with special paint effects, gold leaf and so on. Commonly an object like a small box or an item of furniture is covered by cutouts from magazines or from purpose-manufactured papers. Each layer is sealed with varnishes (often multiple coats) until the "stuck on" appearance disappears and the result looks like painting or inlay work. The traditional technique used 30-40 layers of varnish which were then sanded to a polished finish. This was known in 18th century England as The Art of Japanning after its presumed origins." So...in my case...supported and inspired by David and Louis I have bought a very basic coffin made from mdf. I have begun tearing and gluing pieces of paper on it - each has Helen's writing on it and they vary from the banal (shopping lists etc), the outre (mad writing from her manic phase), the profound (snippets of poetry and philosophical musings) to the confidential (letters to and from supervisees and clients - all thoroughly deidentified and damaged I hasten to assure you). For some colour and contrast I have added pieces of fabric Helen dyed or screen-printed in her time making art with Lil Smith and Helen Peake in Darwin. It's not finished yet but has progressed a long way from my initial shots and looks fantastic already. My vision for our Darwin funeral ceremony includes inviting Helen's friends to come forward and write a brightly coloured word on her coffin that means something to them about Helen and their relationship with her. We plan on cremation so it will be evanescent but then that is the point... Louis is going to come back to Darwin at some point and plans to stay there until my birthday. I will fly back to Darwin early this Wed morning and stay there until Saturday when I will return to Melbourne and head on to Natimuk. I won't go back up to Darwin until after my birthday, the Nati Frinj and my trip to Galapagos Island (my 40th birthday present to myself for the week after Frinj!) and probably the AGPN Forum conference which is on in Melbourne mid November..

Afternoon on the 5th October 2011

Louis and Emma spent the morning with Helen - pretty sleepy by the sound of things. I've been here for a few hours this afternoon. She has recognized me twice and at one point said " can you help me with this dear?" but sadly I couldn't figure out what she wanted. We have held hands and I've had a few little weeps.

Coffin beautification- the beginnings of the decoupage project

Tuesday 4th October

Yesterday Louis and I had a meeting with Dr M and Dr N about what next in terms of treatment options, palliative care and accommodation options for Helen. It was good to be able to talk with Dr M as she has been involved since Mum first got sick. She's visited us at home, she was part of the attempts to arrest Helen's vision loss, she's got to know all 3 of us and the carers and has advocated for us at various times. We all agreed that it is time to cease active treatment for Mum/Helen and move into the truly "palliative", "keep her comfortable" phase of her dying. She has never regained much wellness since the infection/s that prevented her going to Brisbane and it seems very unlikely that she will or could even with maximal medical intervention. As such there really seems no point going on with the preventative antibiotics and blood-thinners and even the more routine regular medicines are probably no longer worth using. It is a big decision. We both feel sad. It does, however, feel like the right time. Louis has changed his plans to stay up here and his friend Emma has quit h job in Brisbane and come up today as well so he has some support and company and she is able to spend some time with Helen too. Both Kaye and Shirley have talked with Louis about Helen and ceasing treatment and it sounds as if they too think it is the right thing to do now. I have still not decided what to do. In the short term I am supposed to fly to Hobart tomorrow for a conference. Then I was to have returned to Melbourne on Monday and headed out to Natimuk to begin pre-Frinj, pre-party and post-breakup logistics (have taken all my annual leave in a lump). I could cancel conference and stay a little longer, then go South as planned. I could go to the conference but then come back up here for some/all of next week. Either way I really want to be in Natimuk by the 15th October and I won't be free to return to the NT until the 15th November. Dr M was good at talking through with me - how will/would I feel if I'm not here when Helen dies and in particular if I don't get to see her or be with her body before the funeral? I think it will be ok. But I still want to see her and be with her before she dies. And I really really don't want her to be lonely or to feel abandoned or unloved. I am really glad Louis and Emma are here for her. I have no idea how quickly she will deteriorate without treatment - although I know that she will. An interesting morbid reality in the NT is that it is fairly commonplace to have delayed funerals as in the Wet Season they can't dig holes out in Arnhem Land as the water table is too high. Strangely I found this fact very comforting as it means we have time to plan an unhurried ritual when we are ready.

Sunday 2nd October

Just a brief long distance update. I am still away from Darwin and Louis is Helen's main person. I will return briefly this week but then go away again and be away until ~19th Nov. Louis also has to come and go a bit throughout that time. Although we have good friends in Darwin who are visiting Helen we would love it if she had a daily person who was really there for her. Any family or old friends interested in an" all expenses paid" trip to the NT plus a stipend for some part of the next 6 weeks or so would be very welcome....please think about it... Louis is the best to talk to in a way as he has the most current connection with what it's like being with Mum but also he mostly manages her finances. It still remains very unclear to us both how long we need to be planning for and sometimes I think she will die quite soon...but as we and her medical carers have been wrong lots up until now we just have to go ahead as we are.