It is with great sadness that we report the death in hospital on 7 August 2008 of Maria Mackell, the Association's Carer Support Coordinator, following a short illness. In the two or so months prior to being diagnosed with abdominal mesothelioma in late May 2008, she had also dealt with the illness and death of her brother, and took on caring responsibility for her brother's children.
Maria joined us as our first Carer Support Coordinator in April 2005. Shortly after, she addressed these words to the carers in the newsletter:
"So, I'm starting this new job with a lot of enthusiasm and energy but.... I'm quite a novice in the carer's role relating to Huntington's disease. I'm assuming that it is a huge task.... on-going, sometimes without hope, sometimes frustrating, with new challenges as the disease progresses, and all with little or no support? ...Is that what it's like for you?"
It was to prove a challenging task. Up until that time, the Association had not identified carers as such in its database. So her first task was just to identify and make contact with as many carers as possible. It was in this that her guile and lateral thinking showed itself. When her first ads in the newsletter produced little response, she resorted to direct mail and "give aways" to encourage carers to contact her. The little tea-bag gift packs that she offered not only produced the desired responses, but introduced us to her love of tea. The basic Lipton's tea bags in our office kitchen were rapidly supplemented by a variety of exotic teas!
In other ways, we knew that Maria had arrived and that she was determined to make a difference. The somewhat dowdy surroundings that the office presented to our clients were an early challenge. Vases of flowers and garden pots would mysteriously appear from time to time to be just as mysteriously replaced when their time had passed. The missing dinner plate was probably to be found serving as a temporary pot saucer. Successive generations of new curtains graced the function room windows, until there was one of a shade and pattern that she was satisfied with. A refugee garden bench liberated from somewhere in inner Sydney arrived to provide seating for clients in a sunny corner.
It became clear early on that when Maria had a conflict between obeying the dictates of bureaucracy and giving personal attention to the carers, the carers would win out every time. Maria's energy overflowed the formal bounds of her role - it was not meant to be a "hands on" job, but her pedicures and facials will be long remembered by those who experienced them. If she didn't have the requisite skill, she always knew someone who did. Maria's family and friends were always at risk of being conscripted as volunteers to staff the various functions and activities that she organised. Good looking young men would arrive "out of the blue" at Elsie Court Cottage to perform waiting duties, whilst somewhat older friends would drive vast distances to spend a week as helpers at the holiday camps.
Maria always had time to stop and chat with clients, and to listen to their concerns. This was always done with good humour, and she was notorious for her sense of fun in appropriate situations such as the holiday camps.
Maria's perspective on caring was shaped and enriched by her own experience as a carer. In that same newsletter article mentioned above, Maria also said:
"I come from a community services and aged care background, and have recently returned to work, after caring for my mother-in-law. So, from both my personal and professional background, I have a great interest in carers and the work they do.
On a personal level, my time as a carer was a bit of a roller-coaster, lots of ups and downs, interruptions to my career, big changes at home etc. But it also brought enormous benefits for the whole family. We all changed in some way. My children (2), cats ( 2) dog (1), and yes, even my husband (1) have all had a more enriched life through our experience of caring. I know I now have more insight, more patience, and a different perspective than before. It's a perspective that says that the here and now is important too, and in recognising that, it's possible and legitimate to enjoy the little steps along the way. I gained a very different insight than the one I had while working in the field prior to my experience as a carer. But I also acknowledge the difficulties, and feel very strongly that we need to support carers in their role."
Maria's commitment to "her carers" was demonstrated on the day of her brother's death, when she carried on with a planned trip to Canberra to attend a support group meeting the following day. When it was suggested to her that she should cancel, she said simply that she had said her "goodbyes" to her brother the night before, and that she was needed in Canberra.
We will not soon forget her expertise, her generous spirit, robust humanity and her zest for life.
Our sincere sympathy goes to Roger, who has lost a partner in the prime of her life, Hillier and Austin, Maria's children, and their extended family.
