Poems from the Funeral 1/6

Who’s Turning the Kaleidoscope? Kaleidoscopic fragments of your war-time years spin through my mind: starting Medicine at the Sorbonne, black-marketed nylons and cigarettes, Mercedes hidden in haystacks, people hidden in haystacks poked by bayonets, men in a boat, you amongst them, betrayed by a girl one of them slept with – one of you, I should perhaps say, though I never have till now… The mouth of a cave blackened by gun-powder - yours or your enemy’s? Someone’s ambush. Having to dig a trench – or was it a pit? then line up, all of you, along the edge, machine-guns at your backs: shrapnel in your legs saw you fall with the others, but the miracle was you did not suffocate before the guerrillas found you and one other out of all that lot. Someone has pointed out that you don’t get shrapnel from machine-guns. That’s right, I realise. Don’t know any more if it’s your kaleidoscope or mine that has mingled the fragments, but I do remember those unusual scars on your shins. I remember that word and I have watched your tormented sleep. The camps, you being nick-named Ghandhi after release – so thin from typhoid. You a translator, relied on for your eight languages, able to get privileges – was this the time of nylons, cigarettes and Mercedes? You hungry and unemployed in Paris. No benefits to refuse in the France of ’45. For the Stateless Person: No job without a permit to stay, (I have your Permis de Sejour still) No permit to stay without a job. You spent all day in one queue, next day in the other, you told me. Queue-jumping, meaning refusal to queue, has become a catchword of blame in Australian politics, you might be interested to know, though many of the countries to which it is applied have no queues for people to join. In one of the camps, a woman and child, a little boy you’d later adopt, a beautiful woman you’d later marry. He stuck with you because you stuck with him when she did not. And now he is our family, though you are gone. A child’s satin-covered missal from his first communion holds your joint naturalisation papers: talismans of your new life. He leaves it in my care. Trusts me with that and other things. On his rare trips north, he used to arrive sometimes unannounced, but we came to know who would be sleeping in any van with the dashboard smothered in fallen blooms. Stone-mason sings: At the end of all this, I’ll scoop up frangipanni – handfuls, armfuls, facefuls of fragrant white and gold, cool suede, rich and fresh. In my bed I’ll roll in it, crush its beauty for my own like a cat in catnip.

A link to a booklet about the funeral and the wake

Douglas put together a digital booklet with a few photographs - if you copy and paste this link into your browser you should see a pdf version you can download and print if you so desire: http://www.dugfish.com/Helen.pdf

Helen's Funeral/Celebration, the wake and cremation

The Funeral/Life Celebration Many wonderful people travelled to Darwin to farewell Helen, sent their love and thoughts in physical ways as well as virtually via the web and also gathered from amongst her Darwin community. Notable in the interstate and international visitors were some of her family - Robin, David, Jennifer, Dorothy, Jamie, Alex and Greig: siblings, nieces, nephews, cousins as well as Lyn, a dear friend from Melbourne Uni days and Peta, a special friend and colleague from Brisbane. Also Douglas, Dave, Emma and Susan. Our friends Gabe, Diane, Susan and Emma made food for the celebration gathering and the wake. We had our life celebration at the Uniting Church in Nightcliff and their kind one-time minister Lee made himself available to support us and facilitate our ceremony. As it turns out Lee is also a poet and he particularly enjoyed being introduced to Helen's work. We began with an acknowledgement of the Church and its space, an acknowledgement of the Larrakia and a welcome from Louis. All family members and several friends had brought flowers from the gardens and roadsides of Darwin and the space was strewn with Frangipanni, Poinsettia, Heliconia and those big salmon-tinted tissue-paper flowers that grow near Helen's old house. We had Shirley's portrait and the decoupaged coffin out the front. On the side there was an installation of family photo albums, slideshows of photos of Helen on a computer and this blog running live on another computer for those who had never seen it. Douglas projected a photo of Helen laughing up above the lectern. The music to welcome people was the Cistercian Monk chants that Helen used to so enjoy when she was having contemplative time at home alone. Louis, Sally and I all learnt to enjoy these during her illness. After his welcome Louis invited us all to share a few minutes contemplation in silence. We thought of Helen and what she meant to us and why we had come together. Robin came forward and shared some thoughts of Helen as a young girl and also memories he was given by some of the older members of our family who had not been able to come in person. One I liked (and had not heard before) was how Cynthia - Helen's aunt and an academic at Melbourne Uni used to find messages from Mum chalked on the footpath in front of her office! Nothing too outre - most often invitations to lunch or some-such but still delightfully eccentric. Eccentricity, quirkiness, charm and creativity were hallmarks of all the stories and memories brought forth. Douglas spoke - his memories include Helen flooring it on the Western Highway in a borrowed 2CV and shouting Whoopee! as he held tightly to the car door. He also acknowledged how special he thought she was as a therapist in her combination of art with practice. Helen's dear friend Kaye shared memories of how they met at a writing workshop soon after Helen came to the NT and of their firm friendship thereafter. I read 6 poems from Helen's collected works including one unpublished. I will post them in the next few blog entries. We had another minute or sos silence for reflection then Dave read a piece about Death from the Prophet - Khalil Gibran - a favourite book (and author) throughout Helen's life. "And when the Earth shall claim your limbs then shall you truly dance" I then invited people to come forward and write words on the coffin if they wished, mingle and share cupcakes and tea, peruse the photos and other installation work and if they felt inclined - to choose a memento from the selection of household items, jewelry and crockery I had assembled near the front door. We also had copies of Helen's published poetry for people to take away as well as photocopies of an interview done with Nadia Milosevic which profiled Helen for the Australian and New Zealand Journal of Family Therapy back in 2009 before she got sick. In closing we played the soundtrack to a performance of "The Grimstones" - a piece of music which made Helen smile whenever she heard it. Our celebration was everything Louis and I wanted it to be and many others found the ceremony both moving and appropriate for Helen. The Wake We gathered on the Nightcliff Foreshore as planned. Kaye was the first arrival having stayed in Darwin all day after the funeral. She was sitting under the Casuarinas enjoying the antics of the black cockies , the rainbow lorikeets and the sea breeze but not savouring the sandflies quite so much. It struck me that this too was an apposite experience in memory of Helen, who had many conflicting times between her desire to enjoy time with friends by the sea and her desire to avoid being devoured by midgies! We had an abundance of champagne, cool water, delicious snacks (rice paper rolls, dips and quiches) and lots of people came to spend time with us and remember Helen in a joyous manner. As sunset approached there was a wonderful light-show over the ocean with a wet season storm circling around us. Lightning, thunder, a wonderful breeze and beautiful patterns in the sky. The Cremation Initially we had planned the cremation would happen on the Wednesday - in between the morning and evening gatherings. There were various confusions regarding paperwork and organisation and in the end we deferred it until Thursday. I felt quite relieved about this as it had all seemed a bit too much on Wednesday. In my original thinking I had planned that just Louis and I would go and say goodbye to Mum in the coffin (now added to with wishes and words from many loved ones). It turned out that some of those visiting really wanted to be part of this too and as things transpired - thank goodness! It would have been very peculiar for just poor little us to be there on our own. The company we chose for the cremation is a family business that has been around for quite a long time (since 1954 in fact!). They were the people I originally bought the coffin from and although they were somewhat odd at the time they were also earnest and intent on looking after us as best they could. In the beginning they had some trouble accepting that we wanted to do everything ourselves and in our own way but once this was clear we planned that we would attend for the cremation only. We had been told that the company had recently bought its own new cremating oven and they had also prepared a "viewing room" out the back for families to gaze in at the oven through a small window. We arrived at 7.30am on Thursday - Louis, me, Robin, Jennifer, Dorothy and Peta. The "viewing room" was singularly awful. Very new bessa brink room, painted some bland colour and without any ornamentation. Ugly new sofa in one corner. Tight, "hard-wearing" plasticky grey carpet. A greyish roller blind covering a small window set asymmetrically on an internal wall. And most disturbingly - a horribly pervasive chemically smell which may have been from the carpet and the sofa but seemed very much like burning. In the past when I have attended cremations in Brisbane the coffin has trundled down a conveyor belt sort of thing and then disappeared behind curtains. In this case everything is way more upfront. We were invited into the room with the oven which was a large grey metal machine sitting in state surrounded by a clean concrete slab and plain painted bessa brick walls. Helen's coffin was sitting on a trolley/gurney in front of it. We arranged frangipanis and hair (from our hair-shaving ceremony back in Brisbane at the beginning of chemo) along the top of the coffin, admired it with its new inscriptions and said our farewells. We then retired to the "viewing room" and he raised the roller blind. Looking in we saw exactly where we had been standing a few moments earlier and the machine in all its glory. With a nod (and a certain air of solemnity) he pushed Helen's coffin inside and set the dials to start. It took about 1.5 seconds! He then emerged and stated that some people like to hear about the machine and how it works. With barely a pause to ascertain whether we were that kind or not he was off! A monologue of impressive proportions had begun. He ranged from technical details of cremation, his own practice and beliefs in this area, his philosophy on choosing a wife, his parents' background and reasons for starting the business (including admittedly fascinating Darwin historical detail on how deaths were dealt with back in the 50s), what life was like when he used to work as a musterer (plus how much he earnt a week when mustering vs funeral directing) and then gave us chapter and verse on the great job satisfaction inherent in his current role. It was apparent he feels he does a great job. We were all somewhat hornswoggled. I made a few gentle and then less gentle attempts to wind him up and eventually we left. As Dorothy, Jennifer, Peta and I drove away we marveled at his lack of insight and sensitivity to social cues but also mused on how delightfully peculiar and entertaining the experience was and how much we thought Helen would have enjoyed it. Both Louis and I were glad to have had both the company and social support that we did for this decidedly non-spiritual and non-meaningful experience and glad too that the day before had gone so much as we had hoped.

Venue for Helen's Drinks tonight

Despite the rumblings of thunder and gloominess of sky we are gathering on the Nightcliff foreshore from six ish tonight (Wed 7th). Corner of Jacaranda ave and Casuarina drive. We have eskies with ice, bubbles, water, dips, snacks and a variety of yummy things... So come if you can and watch the storm roll in over the Arafura Sea as we say farewell.

Helen's Farewell

Dear Natasha & Louis,   It is with a heaviness in my heart and a lump in my throat that I write to you at this sad time.   Helen was my first professional supervisor nearly three decades ago. While I had known Frank as a charismatic and somewhat enigmatic teacher, I came to know Helen through many discussions at Weinholt Street. Her practice then left the first indelible etchings on my mind. She charged for her services as supervisor on the basis that one hour of her time was worth one of the supervisees'. Humility has no better definition. And later, she allowed me to be counted amongst her friends. Felt honoured then, still do.  

Helen remained a trusted , wise colleague with whom many clients were discussed over many, many years. Some took place late at night when she would welcome me into her home after I finished work and ply me thoughtfully and generously with food and drink. The conversations often had little preamble. "Hi Helen. Can I talk to you about these people I'm seeing?" No matter that at times weeks or months between contact had elapsed. While her poetry provoked me, her supervision focussed me. Both had characteristic Helen-isms: sharp, astute observation of self and others, confrontation eclipsed by compassion, contagiously wonderful,carefully-chosen expression.

 

Interspersed in my life are intensely Helen experiences. The Ladies Labourers Guild, the Family Court, QPASST, family therapy, introducing my kids to chickens in the back yard, wampi tree planting, a story about being hen-pecked especially for the middle anxious one, gifts of German secateurs(still used) and 9 miniature Israeli vases depicting my pregnancy. The professional and the personal interwoven always. An all time high was her very welcomed attendance at my older kids bat and bar mitzvah. She distinguished herself by being the only guest (including family) to attend the rabbi's talk prior to one service. He was delighted. Such was her whole-hearted involvement.

 

Helen paved the way for me to meet and come to know you both a bit. You're lucky in life when people extend and enrich your tiny world. You both have. From seeing Natasha the circus performer and  experiencing Louis the yoga teacher to some meaningful, cherished conversations. Like your mother, on the occasions we talk, it's unpretentious, direct and allows me to be as honest and complete as I can be. Thank you. I regret I could not be with Helen more and support you in your devoted care of her.

 

In my Jewish world, the term for Helen would be 'A Woman of Worth'. If I could, this is what I would write on her coffin. The description continues"her price is far above rubies". Hers is a life well lived, rich and varied in its gifts. I will miss her.

 

Love,

 

Peta

A few images from Helen's life in Darwin

Bananas she grew at St John's Court - cut down with the bread knife as is traditional in our family!

The tiniest of green frogs - Helen delighted in breeding frogs in her various abodes.

Tropical fruit - also a delight.

The housewarming waterlily I gave her some years ago - it's first flower in the pond that Louis built.

Plans for funeral/life celebration and gathering

Louis and I have planned to have a morning celebration of Helen's life in Nightcliff at 10am on Wednesday 7th December. This will be followed by a morning tea thingy. In the afternoon Louis and I and the odd family member will go out to the Resthaven Funeral Home for her cremation and we are thinking of hosting sunset bubbles on the Nightcliff Foreshore (one of Helen's favourite things to do) as a mini-wake. The life celebration ceremony will be at the Nightcliff Uniting Church at 35 Cummins St, Nightcliff. The Church is a lovely social justice oriented community which has been very welcoming and supportive of our family and although we and our ceremony will be very non-religious they have generously offered to host us and we are very happy to be there. I still plan to ask people to write on the coffin and have been sent a few words to write for other people - if you are coming bring a word in your mind :). As far as the wake goes - please watch this space for more info as I feel the need to go and check it out for mozzies, breezes, sun etc before locking that in as a definite plan. Both events will be casual and open and anyone who has love and caring for Helen is welcome. Those planning to come from interstate it would be good to plan to stay Tuesday night through to Thursday morning at least. We have some accommodation options amongst our friends and neighbours so please let us know if you are coming.

Sad news at 1.15pm today

Before Dave could return to the hospital, or Louis or I return to Darwin, Helen passed away. The hospice staff were with her - David was reading from her poetry book, Hayley the music therapist was playing music to her and between one breath and the next, she stopped. It was peaceful and quiet. I'm glad she didn't have to suffer fevers, cough or breathing troubles for very long. From all accounts she did not seem distressed either during the morning or in the time leading up to death. The Hospice has offered to keep her in her room until we have had a chance to come and be with her. I will arrive at 7.30 and Louis at 10.30 tonight.

30th November 2011

It sounds as if Helen has pneumonia. Dave says he spent a few hours with her this morning and she was not rouse able and had fairly noisy rapid breathing. Later on the pall care doctors came round and said that she has a significant fever as well. I will be back in Darwin tonight and plan to go straight out to the hospital. I think Louis plans to come up tomorrow. In the interim Dave is going to sit with her.

29th November 2011

Doug left Darwin a week ago and Dave and I arrived. Louis is still in Victoria. Restarting work has been busy for me. I've visited Helen 3 times only in the week just gone and I'm in Alice now for work and won't see her again til Thursday. On the visits I have had, I've had a little conversation each time. The first was much the best as she recognised my voice and we spoke intermittently for about 10 minutes - all fantastical things from her mind such as worrying she would crush some eggs she was carrying - but it was lovely to be recognised and to feel that if I joined in and reassured her about the eggs she was reassured. The other two visits she ate/drank a few mouthfuls and recognised me but it was very brief in terms of interaction and she basically fell asleep again for the rest of each visit. I hear from the nurses that Kaye has been in a bit but I haven't crossed paths with her. It was lovely to read Kathy's card to Helen and to receive Maureen and Dorothy's recent missives. I haven't yet been able to try to read them to Helen - she's not really withit enough. Dave is going to visit her today on my behalf. Robin (Helen's brother) plans to arrive next week for a few days and I think Louis will return sometime toward the end of next week also.

Thursday 17th November 2011

Doug is in Darwin now and both Louis and I are in Victoria. Louis found it very hard to leave as Helen has been increasingly sleepy and confused and he felt she was starting to come to the end. This message from Doug this morning was very cheering to both of us: "After being asleep for the last 2 days and hardly eating anything Helen was awake when I came in this morning - she laughed at some of my jokes and ate half a bowl of scrambled eggs, and drank half a cup of milo. She said "this is wonderful food". She also said she would see if Robin and David could take her to Mooroolbark. I said she could look after her chickens there, and she smiled and said "Yes, that'd be fun". I asked her if she had goats there too, and she said "I've seen pictures, but I've never been there"."

13th November 2011

I've just returned to Natimuk. Louis is still doing solo duty with Helen. From the sounds of things it's been pretty hard on him. She is still sleepy, drinking a little, talking sometimes but often confused and talking about things going on in her imagination. He has been trying to visit her 2-3 times a day at the hospice and says he does feel she is aware of him and derives comfort from his presence and reassurance but having said that there's no point making long visits as she is so out of it. The hospice is a 20 minute drive from Helen's house in The Gardens so that is an exhausting regime and he hasn't had any companionship up there just lately. I don't plan to return until the 21st at the earliest and possibly the 23rd. Am trying to think of a way to provide Louis with a respite break that he will still feel gives Helen enough support that he can feel ok about letting go and I can finish my business down here before returning to Darwin.

4th November 2011

Over the last week Helen sounds to have been fairly stable. Last week Dr A called me to say they felt she was deteriorating - drinking less, more sleepy and more confused. Louis was able to come South for my birthday as our cousin Kathy flew up and spent 5 days or so relieving him. It sounds like that went well and Louis has now returned to take over day to day care. I am overseas for another week and don't have regular phone or internet contact so the blog won't be the best source of up to date info until I get back to Australia. Having said that Louis emails me and I will check email often.

Helen

  To the blog, I hope (Judith Steele)

 

I did not know Helen as well as many others did. But during 2008 I was lucky to spend time with Helen and Kaye, in triangular poetry discussions, and work on our own writng. Helen was working on "So Many Versions of a Life" at the time . I think she was unwell for some of  that year, but did not discuss how she felt, and I left Darwin at the end of that year. I was shocked in 2009, to hear she had cancer.  I loved Hugh Crago's poem 20/10/09 about Helen being  fiercely caring, fiercely intelligent. Whatever other words I use---integrity, kindness, humour, sharp but compassionate perceptiveness – they are summed up by those phrases.

I saw her again only for a few days in Melbourne in December 2010. I feel as if I have had more contact with her than that, because of Natasha's blog, all the news and photos.  Thankyou Natasha. Thankyou Natasha and Louis for keeping Helen in contact with everyone.

Rereading a letter Helen sent me 7/4/09, I see that the theme of fierceness recurs, although it is as part of a discussion and quote from a poem by Elaine Feinstein I had copied out for her. (Book lost by me in shifting, but it was about putting one's creative life first, entitled Muse).  Helen talks of not doing the things she likes until she can show proper progress  in the area of duty, thus foregoing the " strengthening"of her "fierce and obstinate centre" which could have "defended" her. (words in italics quoted by Helen from the poem).

Well, I am glad there were many times when she allowed her Muse to speak, often fiercely. Helen, for me you are first and foremost a poet, and if I were to contribute any words to your coffin, they would be HELEN the POET. (But I think this will already be all over your coffin) .

Love and thanks from Judith S.

IN THE TRADE

Jars of acid and

exfoliating cream

tools of the poet

(p 66, Helen Pavlin, Collected Poems,, 1993)

 

 

tribute

Dear Natasha, Louis and Helen

I am thinking of you now as the time of parting draws near. Reflecting too on the past - back to Brisbane and my social work training at Queensland University in the late 1960's where I first met Frank and Helen. Frank I knew as my tutor, Helen I knew less well. However there was one important and lovely way in which Helen touched on my life then which I would like to share.

A few of us social work graduates decided to get a job working in Melbourne and we were looking for accommodation. Somewhere in the background Helen's voice emerged, suggesting that her uncle Arthur Turner might have a house to rent. And so it happened. Three of us young women, tottering on the brink of adulthood, the world at our trembling with excitement, omnipotent feet  took up residence in a solid, comfortable house in trendy north Carlton owned by her benevolent, beaming uncle Arthur. That house was a focus and it provided us with a containing structure through the pain and magic of growing up over the following three years, where enduring friendships were also formed.  That was a special experience in my life and Helen contributed to it. She showed herself a generous and sensitive person.

Thank you, Helen.

MB

Tuesday 25th October 2011

Yesyerday Dr A phoned me from Darwin to let me know that Helen is deteriorating again. Apparently she has been even more sleepy, is drinking less and eating less and seems likely to have another urinary tract infection which is not going to be treated this time. Louis is still in Darwin although he will leave tomorrow to come down to Natimuk for my 40th birthday party. Dr A (or course) can't give me any kind of timeline for Helen's death and it is possible she will still be alive when I return on the 14th but it is also possible she may die before either Louis or I can be there again. I have accepted this already (and in fact there's many times when each of us thought she might not be there when we returned from somewhere or other) however it does feel odd and frivolous to be so resolutely absent at the end having been so resolutely present for much of the last two years. Should she happen to die really soon we will at least have a bit of a gathering of our blood family already assembled in Natimuk. The plan to defer our funeral in Darwin until at least late November will stand. Whenever she dies it will be both sad and...OK....and as one of my friend said to me last night "If there's one thing I know about your mother it's that she has impeccable timing" so no doubt it will be a well chosen moment.

A beautiful farewell letter

Dear Helen, As I write a farewell letter to you, I am re-visiting my memories of over fifty years ago, starting our University journey together in Melbourne, when we were students at University Women’s College. You were my first adult woman friend, and for a few years you were a powerful and positive influence in so many ways. We are both now over seventy, but some of those influences are alive and well today, even though I have not seen you for twenty years, and before that a gap of another twenty or so. My memory is getting patchy these days, and only reflects my truth- I think I have long given up on absolute truth. Here are some of the fragments which are still precious to me: · introducing me to Rilke’s poetry, and later your own · sharing flowers from Mooroolbark · long evening discussions about all those big life questions- challenging stereotypes and racism, exploring politics and spirituality, ever-widening my horizons · giving me a sense of non-judgemental acceptance and affection. even though we critiqued everything, including our own selves. At Melbourne University we joined marches against White Australia Policies, developed friendships, and sometimes deeper relationships, with young men from Malaysia, Indonesia, India and Fiji. Perhaps it is no surprise that we both kept a passionate interest in refugees and immigrants- both the strengths they brought to their new country and the issues they faced. Years later, we reconnected briefly as I started a Masters’ on groupwork with refugee women and I learned of your work at the Brisbane refugee centre and your own poetry. Then one day you arrived in Auckland, just as I was moving to work in Perth for a year. We had a few hours for catching up, and you bought a metal candlestick that one of my sons ( Matthew) had made. Such a tangible thing, and maybe now it can hold a candle for the rich memories I have of you. I have been very moved by Natasha’s blog since you became unwell, and although I have never met Natasha and Louis, I hope I will someday, and that our growing tribe ( here and in Australia) can meet them too. So many of your qualities are being reflected as they care for you so tenderly in this final phase of your life. Michael Leunig has touched me with his quirky wise humour, and somehow I think you would like him too. Amongst his list of things that are good for the soul is “a quiet stroll around the mental block.” That’s what it has felt like as I say goodbye to my first best woman friend. Thank you, love from E

An email from a longtime friend

>> >>> I have so many memories of Helen and Frank, going back to the time when they arrived in Brisbane as a relatively newly wed couple and Frank took up his lecturing position in the Social Work Department and Helen forged her career moving impressively upwards through various areas of the profession. Both exerted a very significant influence on the students they lectured and supervised.
>>> >>> I've jotted some snippets as they come to mind :
>>> >>> Helen was an extremely competent person. I admired her sheer determination and ability when she came to Paris with two small children and her mother, to take delivery of a French citroen that Frank wanted to drive in Brisbane. Driving in Paris was no small feat, especially as the car's steering wheel was on the opposite side of French cars. Helen used to take the car for short drives around the area they were staying, in preparation for driving it all over Europe and the UK. She succeeded with great aplomb.
>>> >>> Another of her characteristics was her thoughtfulness. I had told her of my small daughter's desire to have a cat of her own when we moved back to Brisbane after living overseas for an extended period. A few days after our arrival Helen phoned to say she had a kitten ready to deliver to my daughter for her birthday .
>>> >>> I was always impressed by Helen's keen intellect, her love and knowledge of literature, and her own creativity, both with words and with her hand craft. Natasha, she would so much have approved of your project of making a beautiful and unique coffin for her. What an appropriate final home for such a creative woman .
>>> >>> Helen, Natasha and Loius, you have been an inspiration to many in the way in which you have chosen to live these past two years. You have focussed on Life and have lived it to the full, in spite of enormous challenges. My hope is that these final days may be a time of gentleness and peace for the three of you and for those who love you.
>>> >>> >>> The word I would choose to characterize Helen is thoughtfulness.
>>> >>> With very warm wishes to the three of you >> >> >

Monday 17th October 2011

I am in Natimuk now and have not heard any updates on Helen just lately. Waiting to see how Louis finds her when he returns.

Another beautiful email from a friend of Helen's with some words for her coffin

Dear Natasha and Louis,

 

For a long time now, I have wondered what I would say about your mother as her death draws near.

 

I suppose the first place to begin is with you both. Your devotion to doing whatever you could for Helen, no matter how small, was everything that could be done to make her time comfortable and meaningful. For those of us not in Darwin, the blog has allowed us to share in your pain and anguish, but, until I read the recent e mail from a former colleague, I don’t think that I appreciated the personal cost to you both.  And like the colleague, I am sorry that I was not able to be more supportive of you both.

 

I have been thinking quite a lot about Helen in recent weeks. I tend not to throw out postcards that friends send me because they are happy reminders of them. So, I have been going through a number from Helen, some in English, others in French. All have Helen’s particular gift of making even small interactions personal, and an occasion for sharp, witty observation. All are written with that care for the right word, or the phrase that had just the nuance to describe a person. I recall one occasion when an American women was loudly berating her husband across a large dining room. Helen described her as “foghorning”. Who else would have thought of that?  This attention to words flowed into reports she prepared in children’s disputes. Always fastidious to ensure that people were listened to accurately and described fairly.  I will miss that most about Helen.

 

I wonder if that unformatted poem was written about the mid 90s as the result of certain events in the Family Court?  I can recall that it was her practice, when she had been away from her office at the Court, to go straight there on her return to Brisbane, and catch up on the correspondence and other papers that had arrived in her absence. I remember her ringing me one evening to say that she had just found a letter abolishing her job. No one had bothered to tell her. Not even a phone call. She was just left to find the letter. It was a disgraceful way to treat someone who had given so much to the Court. Certainly, the mood of the poem reflects my recollection of that time and some of the issues of which we spoke then.

 

So, they are my memories of Helen -  a wonderful observer of the human race and a passionate fairness for describing them. If there was room to put something on the coffin, perhaps it could be those words.

 

Thinking of you all,

 

 

Saturday 15th October 2011

I am about to leave Darwin and won't be back until the 19th November or so. Helen has been quiet over the last few days. She has been eating a little (7 spoons of scrambled egg this morning) and drinking. I have enjoyed holding hands with her, massaging her hands and feet, oiling her skin, kissing her forehead and doing miscellaneous grooming activities but there has not really been any conversation to speak of. I have passed on greetings and love from Louis and Sally, from Max and Barbara and read Dorothy's letter to her. I have put Shirley's picture in for framing. Louis plans to return early next week and will be in Darwin until closer to the time of my birthday (26th) when he will come down South also. The coffin is pretty much finished. If Helen does die soon) before I can easily come back) we plan to defer the funeral so it is likely to be later in November. Having said that I am hesitant to predict anything with her as I (and others) have been wrong so many times. The way she is right now could easily go on for a few weeks and she does seem comfortable in her body and her mind and generally at peace. Her skin is still improving as the bruises from the clexane and dex resolve and although sometimes she looks a bit dry she is still drinking. Today I gave her a hot chocolate milk which she drank all of and yesterday a whole cup of juice.

A poem of Helen's I found whilst shuffling paper for the coffin project

I don't remember this one - perhaps it hasn't been published, perhaps she didn't feel it was finished, or maybe I've just forgotten it. Kaye may be able to tell me when it's from - sounds like it might be a while ago though. I like it. I reckon a lot of us can relate to this feeling at some time or other. Warning - it's a bit sad! But emblematic of resilient nonetheless as she stayed on the road for a good twenty years or so after the time this refers to! So sudden this mental turnaround of mine I who've earned my bread from dealing with hard cases, am suddenly drained dry. Should I report in sick? Should I soldier on? Should I take leave? Who'd have thought I was some binary system my responses like a computer ON?OFF? It takes me by surprise. It makes me frightened, useless, a dried shell. Where should I go? Like old bike-tyres the tread is worn off me. I didn't do wheelies nor burning skids, but on the long rides of the last two years and the thirty plus before I didn't know the rubber had worn so thin. Are there retreads available? Bald tyres get put off the road. Unsafe. BTW apologies for the lack of formatting with this poem - that is not how she intended it to be laid out but seems to be how it's coming today...

Friday 14th October 2011

I've enjoyed coming back up to see Mum. Having said which I don't think she has really got that much out of me being here in a conscious sense. We have held hands and I have massaged her skin, hands, feet and brushed her hair. I've talked to her about various things but no idea if she is getting any of it. She has been peaceful when I have been with her and does not seem in any pain or discomfort. Her skin is healing since she stopped dexamethasone and clexane so all the bruises are starting to resolve. I'm here until Sat midday and I think Louis plans to return on Monday. The hospice staff are lovely and as she seems to be off in her own world I don't feel so bad about her having some days alone .

I have made a new linked blog at posterous: Helen's Coffin and Funeral Plans "A blog where those who love Helen can follow the evolution of my coffin decoupage project - I am layering a basic mdf coffin with strips of paper covered in helen's beautiful handwriting as well as the odd piece of fabric she printed or dyed in the past. I hope this will be a place people who are far away can contribute some words they would like to share about Helen and her life and also the words they would like me to write on the coffin on their behalf before cremation" The web address for this is http://helenfuneral.posterous.com/ and the main reason for doing it is that is easy for others to post to via email which the main Helen blog is not. New posts on the Funeral blog should autopost onto the old one so you don't really need to follow both (I think!) and if you want to contribute some words you should be able to just send an email to helenfuneral@posterous.com. We'll see how it works :)

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.

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.

Monday 29th August 2011

Lots of changes in the last week - although not in Helen herself. She remains off her anticancer drug and the itch has mostly resolved. She is in no pain or discomfort. Sleeps a fair bit. Enjoys her food - but needs to be something she likes and needs to be fed. Sometimes still sings and hums to herself.
Regular visits from Kaye and Shirley, the occasional visitor from far away - Camille, Gabe (my new housemate), and Louis has been here for a week and is spending many hours with her a day.
Over the weekend Louis and I tried to fill in the forms for the Pearl Nursing Home in Darwin but as we talked we began to revisit the idea of moving her interstate.
Basically if she stays in Darwin I will remain the primary person. There are two major problems with that - I have plans to be away from Darwin for most of October and November (a combination of work and personal travel including organising a fabulous 40th for myself and participating in the Natimuk Frinj) plus - in general - I am not going so well emotionally and I can't face the idea of being Helen's main person supervising and supporting the care in the Nursing Home at this stage. That brought us to considering Melbourne and Brisbane again. Louis is very committed to his life in Brisbane and although we know Helen would love more contact with her siblings who are all Melbourne based we have decided to pursue Brisbane in the first instance. I am sad about letting her go. Sad too that she won't have Kaye and Shirley in her life as she has done but on the other hand - I can step back to being the less responsible intermittent visitor and focus on the rest of my life a bit, the Brisbane summer will be more comfortable than either the Darwin BuildUp/Wet or the Melbourne half-summer and she will love seeing Louis regularly. Other Brisbane friends may agree to join a roster of visits too - Louis is going to start thinking about this.
Renting out rooms in her Darwin house will help to pay for the nursing home costs in Brisbane - the place we are looking at has "extra service" beds so we need a bond etc but it does seem as if it is quite well staffed and resourced. Louis and I visited it together last Easter and were impressed that they had fertile eggs hatching into baby chickens for the residents' amusement.
I can visit Brisbane, and so can other family and friends from down South and as Louis points out it is a shorter flight and a bit cheaper than getting to Darwin.
At this stage we are working toward discharge and transfer (with one of us as escort) on ~ the 12th September. I hope Kaye will be back by then.

Sun 21st 2011

This morning Stuart, Michael and I visited Helen. We shared poetry and anecdotes, a hot chocolate and massaged her arms and legs with yummy oils and moisturisers. She said her itch was not bothering her. Her L foot was quite swollen (it's the L leg that probably has a deep vein thrombosis). We brought her mangos (new season) which she liked the idea of but wasn't ready to eat so they stayed in the fridge. She said she'd been looking forward to seeing them and it was a warm and lucid morning.

Saturday 20th August

Several days run together...
On Thursday Helen's fried Camille (previously of Darwin but now of Brisbane) visited and read poetry and spoke with her for several hours. Helen remembered the visit when I saw her on Friday and had really enjoyed it. Unfortunately Helen's itchy skin has continued to be a problem - which it was when we first started the Iressa. The ward round Friday morning happened to be with Dr M who is the palliative care doctor we first met when Helen was diagnosed and whom we have had the most to do with. She and I talked the options through and have decided to trial stopping the Iressa again. My only reasons for staying on it are that in the last few weeks of restarting Iressa she has really improved mentally and most of the "para-neoplastic" weird things have resolved. She (and we) find the bizarre cancer side effects distressing. However, it is possible that the mental improvement is down to treating her UTI, the itch is really unpleasant and has not responded to the anti-itch drug we used to use and we just don't know with the weird para-neoplastic thingies so...seems worth ceasing it again, especially while she is still in hospital and can have bloods to monitor her sodium etc.
The other medical/nursing issues I have referred to...she has started on a treating dose of Clexane again (which is the daily injection of a blood thinner she used to have before). In itself this doesn't bother her - or so she always says - but I am in two minds about whether she should stay on it as she has 2 skin tears at the moment and both are continuing to bleed a bit. She is still on oral steroid but at least back on the dose she used to have at home (they doubled it when she came in to hospital. As far as her mobility goes and the idea of rehab - it is not good news. The rehab physician came to assess her and found her cognitive capacity too low to imagine she would be able to get any benefit out of a rehab program - mainly due to memory issues. I actually agree with this and it is part of what was not-so-good when she had her rehab at the Epworth. A big improvement initially due to increased activity and concomitant increased strength but no capacity to retain and build on this improvement on her own without someone else (e.g. me) standing by as coach. Also it was pretty well impossible to stop the carers from dressing her and washing her and drying her...and often wheeling her to the toilet rather than assisting her to walk.
Currently Helen is rarely helped from bed and the nurses have asserted to be on several occasions that it takes three of them and is not safe for them or for Helen. When I heard that on Thursday I asked if I could help/see what the problems were. The nurse I spoke to wasn't up for that - I think she was more interested in letting me know that they weren't keen to move her anymore - I felt quite upset and angry and had to ask her not to talk to me about this anymore. I think I was having flashback emotional fallout from other times when she has deteriorated through what I perceive as poor care and neglect, distress at her current physical state and deterioration and just a general melt-down owing to the last week or so of feeling stressed and trying to be Helen's advocate again. After I got over this I went down to Helen's room and got her out of bed on my own and popped her in the shower chair. I didn't strain my back. I didn't hurt Helen. Her nightie was stained with blood and food and she had pretty much only had bed baths since arriving in hospital so I thought a real shower would be good. i also wanted to see for myself what the problems/issues are with her mobility.
There are 3 main issues - all due to being allowed to lie in bed for 2 weeks as far as I'm concerned. Her achilles tendons have tightened again so her feet cannot bend to 90 degrees. This means that standing is very hard as her centre of gravity is pushed back and she tends to respond to this by leaning away from you with all her weight. Her overall strength - in legs and core is decreased - balance is harder in any case as she has not even being sitting in a wheelchair let alone walking. Weakness in her legs also makes standing more difficult and she has a tendency to try to do this with bent legs which actually makes it harder - like doing a partial squat exercise. Stamina is obviously very poor. Finally she became fairly breathless as I transferred her and then when she actually had her shower was somewhat confused. The nurse (same one from before) and I showered her together, cleaned her skin tear, and shampooed her hair then rubbed in moisturisers and creams. Helen enjoyed it all as a sensual experience and was much cleaner at the end. However she did tell me "she wanted to let me know what she had won" and also told both me and the nurse that we should"go and look at the place where the number plate goes, on the front, on any car!" When we asked what we were looking for she said "I think it will hit you in the eye when you have a look" a phrase which caused the nurse some puzzlement until I translated.
After the shower she was tucked comfortably into bed for a sleep as she was exhausted. But the process of transferring back to bed was much harder than getting her out (partly due to tiredness and partly due to the "too many cooks" phenomenon).
The upshot of all this is I am prepared to accept the rehab physician's assessment and the nurse's assessment and...Helen's personal preference to stay in bed. I hope that we can manage to organise/provide good enough nursing care that her skin remains healthy and she doesn't deteriorate too rapidly.
The next step if she lives more than a few weeks will be transfer to a nursing home. Helen, Louis and I are all accepting of this and there is a pleasant new one nearby the Gardens. The biggest downside from my point of view is the staffing ratios (very light on I gather) and the food. Helen is eating so much less quantity, quality and lower deliciousness food since leaving her home and her personalised care with Jo and Susan. It does seem a shame. I have been thinking perhaps Jo will agree to some more part time work and "special" her at the home but will leave this for now as it is all unclear what is to happen next. For now she will go on as she has done and certainly the nursing care in the hospice is far and away the best we have had in any of our various hospital and nursing home stays. So despite my complaints above we will continue to appreciate it as best we can.

This weekend Susan and Freckles have left our household to return to their lives in Castlemaine. A sad time for all of us in many ways. My new housemate Gabe and her baby Tenzin came to visit Helen with me on Friday morning. Tenzin is 10 months old and a charming babe. Helen enjoyed meeting him and expressed welcome to Gabe and her family. This weekend my friends Stuart and Michael are visiting for a few nights from Qld and we will all spend some time with Helen on Sunday morning.
Next week I will be away for five days and Louis will arrive on Tuesday.

Wednesday August 17th

Tests came back on Tuesday showing multiple clots in Helen's lungs so as planned she has restarted on blood thinning injections.
Susan visited later that day and found Helen in good spirits and lucid although having the odd element of confusion between dream states and reality as evinced by her request that Susan assure Louis that she has bought some chickens for Auchenflower now and they're waiting at home for him...

A medical update

Helen is still in Hospice. She and I had a very frank conversation this morning about death and dying. She has been quite lucid over the last 3-4 days (presumably as a result of them treating her UTI)...she is still sleepy and easily tired but much more withit and rational and answers/converses appropriately.
I initiated the conversation this morning because of 3 things: her immobility - likely to lead to lung collapse, pneumonia, skin breakdown and clots in legs and lungs, the anti cancer drug Iressa seems to be causing an itch again which is unpleasant for her but it also seems to be working interms of stopping all the yukky para-neoplastic phenomena and finally because when I went to rub some oil into her legs and feet I noticed her L calf was quite a bit bigger than her R and quite a bit bigger than it was a few days ago. To my mind this means a deep vein thrombosis in that leg is very likely. The other trigger for talking about it (apart from treatment decisions) is that a number of people have commented to me that they think her reluctance to get up, to sit, to move around or try walking are signs that she has "given up fighting" and is ready to let herself die.
When I suggested this to Helen she was quite shocked. She says she is not ready to die although it's true that she doesn't want to do anything in particular and is enjoying resting quietly and enjoying her visitors.
I outlined possibilities such as having further tests on her leg or lungs, having blood-thinning injections again, taking tablets, stoppin her anti-cancer drug to relieve the itch but potentially having more para-neoplastic phenomena emerge. She was clear that she does not mind tests, tablets or needles and clear that she wants active treatment to continue.
I asked her what comes to her mind when she thinks about death or about dying. She said she thinks about the funeral and about what a lovely job Tim (my cousin by marriage) did of organising/speaking at her mother's.

I asked her whether she would like me to ask Tim to speak at her funeral and again she reacted with shock and said "I'm not at that stage yet!".

So...the process continues.

Helen's friend Shirley came for a visit while I was there and showed me a beautiful pencil portrait she has been doing of Helen - still in progress but looking lovely. Shirley feels it is a sad image but I didn't find it so.

The ward round happened while I was there so we spoke with Dr A about all of the above. She thinks a pulmonary embolus/DVT is fairly likely and Helen will have a test soon to find out if this is true - if so probably will restart on Clexane injections. As far as the Iressa and itch goes her skin looks much better despite the itch and I think we will continue with soothing creams and some night time anti itch medication. Apparently the rehab team are interested is a "restorative" admission but this will go on hold till they sort out the leg/lung issues.

Next week I will be away for work for 6 days and Susan will have returned to Victoria so hopefully Louis will be back and able to visit her. This week I am taking a fair bit of time off work and will go out to hospice as often as I can.

Saturday Dress Ups - Helen, Susan and Natasha

A quote from Helen

Yesterday Dave spent the day at Hospice with Helen and it sounds like she had a pretty good day - ate well and was pretty alert and lucid most of the time.
A notable quote "Some people might think otherwise...but...I...don't want to go anywhere else!"

Photos of our visitors: Dave and Dorothy

Thursday 11th August 2011

Cousin Dorothy departed yesterday and Brother David leaves tonight. All 3 of us spent most of Tuesday out at Hospice with Helen. I had a detailed conversation with Dr A and Kate from palliative care in the morning then David, Louis (via skype) and I met with Dr A and Sheryl the Palliative care social worker in the afternoon. It was not a good day for Helen - she was pretty confused most of the day, didn't eat much and was frequently asking for help and reassurance but couldn't articulate what exactly she was worried about. I found the day exhausting and distressing but having said that it was good to be there and able to offer reassurance and she was quickly soothed by our contact.
The essence of the medical feedback on tests and suchlike is that she did hav a UTI on admission which was treated but has recurred and is currently on antibiotics again for this; she has restarted Iressa (I think is a little itchy since this but otherwise no change), she had an abnormal inflammatory marker - CRP - 180+ (normal is <5) - which they think is too high to be explained by infection alone and could suggest cancer activity or some other significant inflammation like a vasculitis; the bone scan did reveal a metastasis in her R arm but in fact the changes in her upper back were just crush fractures (likely due to bone thinning from being on steroids, not getting much sunshine and not doing much exercise). It's not clear whether the one in her arm could actually have been there for much longer - even back as far as initial diagnosis as this was her first bone scan. The main issue about the arm metastasis is it predisposes her to pathological fracture so anyone helping her to move in bed or stand etc needs to be conscious of not hauling on it. The only treatment thing they would offer is prophylactic surgery to pin it which neither Louis nor I nor Dr A think is a good idea so we will just leave it be for the time being. The other conversation we had was about immobility, decline in function and prognosis. Since she went into Hospice she has declined markedly in terms of what she can do - not sitting up in bed at all (except when propped by the bed itself), no standing or walking apart from with me the other day, not feeding herself, not participating in dressing or washing herself - in fact mostly having a bed-bath so not even using the core strength required to sit up in the wheelchair/bath-chair while she has a shower. When I helped her with food she was not able to figure out how to lift her hand to her mouth without help and became exhausted very quickly. Anyone who has tried to talk to her on the phone will no doubt have noticed a similar issue - she fatigues so quickly she can't hold the phone to her ear plus she loses capacity to think and speak as she gets more tired. Sad though this all is it would be more acceptable to me if I felt she was really at the end of her life - part of a natural letting go process.
Dr A and I talked frankly about prognosis and she was clear (unsurprisingly ) that it is very difficult -even impossible - to predict however she thinks it is possible that Helen could go on for some months.
In this light Louis and I agreed that we would like Dr A to consider a rehab referral and see whether Helen can regain any function as we think this will greatly improve her quality of life.
Yesterday I didn't go to the hospital but David was there and reported to me that not only was Helen a bit better and had some normal conversation with him as well as eating a moderate amount of food (still not feeding herself) she was withit enough for him to talk to her about the rehab plan when they came round to assess her. On having it explained that the rehab people were going to "try to get her up and more active" Helen responded "well they're a bit of a pain aren't they?!" A Helenism which brings wry smiles of recognition to Louis, Susan and I and chuckles of admiration from some others.

Tuesday 9th August 2011

A big day...will post more detail soon but couldn't resist this photo.

Friday 5 August 2011

I visited Helen twice yesterday - morning and lunchtime. She was better than the night before. Much more alert and connected. We talked and I shared her breakfast and lunch (she only really likes the eggs, the toast and the desserts). I moisturised and oiled her dry skin bits and brushed her hair (including untangling the tiny dreadlocks starting to form at the back from being in bed too much). We both enjoyed the idea of her having dreadlocks like me but I don't think she's really ready. At my second visit I crossed over with Robert the physio and together we helped her stand and walk through the room and out to the outside area. It did involve me being pretty bossy so I'm not too surprised she hasn't done it with anyone else - particularly the palliative care nurses who are sooo nice. She was very weak and shaky by the time she got there and had to sit down for a rest but she did do it!
My impression after these visits was that they don't think death is imminent and that we do need to seriously plan for discharge so I have asked Kate the junior doctor to organise a case conference next week involving: palliative care, GP, rehab team, NT Carers, Jo, Susan, Louis, me and possibly the nursing home if that looks like the best option.
Robert the physio suggested Helen could go into either the public rehab or for a private rehab admission as an alternative to the nursing home and to see if she can improve her functionality at all. To my mind that really depends on prognosis. If it is likely or possible for her to live a reasonable time longer - a month - more? Then it's worth it because it makes it possible for her to come home to us again and it makes general quality of life better even if she does hate the actual exercise bit. If she is likely to die in the next few weeks then I am perfectly happy for her to spend all of her time lying around peacefully occasionally eating a morsel of dessert.
So...hopefully I can covey those opinions well at the case conference and that will help us get some clarity. If she does go to the nursing home - Pearl at Fanny Bay - it is newly built and pretty nice, and close to the Gardens for visiting.

Thursday 4 August 2011

Medical updates: The bone scans from last week showed metastatic cancer in Helen's thoracic spine plus a vertebral crush fracture, also a spot in her right upper arm near her elbow. The xray was to check this out but apparently didn't show anything too major. She is still weak, sleepy and confused. Has become unable to weight-bear on her own again having had a few days where she was doing better. When I saw her yesterday she was doing the "teeth clenching" thing she used to do in Brisbane. So...all seems to fit with more active cancer...
They have decided to try restarting her Iressa although I don't think it is expected to improve strength or cognition at all.
We are anticipating a visit from Dorothy and David from Sydney and Melbourne respectively plus I have 2 friends and their baby arriving from down South to move into the Studio on Friday so life at The Gardens is all about shuffling stuff from one place to another.
Heading out to see Helen again this morning and hoping I can help with her walking (or at least see what's going on when she can't do it).

Helen going for an xray