Into the unknown

A touring exhibition is shedding light on the difficult journey of Alzheimer’s disease. Anna Dunbar talks to the artist and interviewer, Halina Ogonowska-Coates - The Christchurch Press 9th September 2002

Brian McNaughton, a pharmacist of Wyndham, has multiple infarct dementia. His is just 65. Six or seven years ago he began to forget things that he had just done, like whether or not he had dispensed a prescription.

“I try not to think where it (this disease) is taking me….the neurologist has told me what is down the road…. that slowly and surely lights are being switched off. There are pathways in the brain that are being destroyed. It is not lonely, in so far as I have Jean and the family and the dogs….. it’s lonely because I haven’t got Me.”

Brian is one of ten New Zealanders with dementia or Alzheimer’s disease who were interviewed by oral historian, film maker, and photographer, Halina Ogonowska-Coates.

Halina was commissioned by Alzheimer’s N.Z. after a staff member, Dave Alton, saw her touring exhibition ‘Have no shame’, which tells the stories of people with mental illnesses.

Interviews were recorded as far north as Whangarei and as far south as Wyndham where we worked with Jean and Brian McNaughton, with whom she also made a Radio N.Z. documentary called ‘Silence Talking’.

“This was not the traditional interview in terms of questions and answers. We would meander slowly around people’s lives, talking about the past…. and the present… going at an easy pace and listening carefully, connecting stories together,” says Halina.

“My Grandmother has Alzheimer’s disease and this has been rather difficult for our family, and for me personally. My attitude towards people with dementia and Alzheimer’s was one of compassion, but at the same time I knew that they inhabited a different world- a world where perceptions are muddled and where communication is often difficult. I was also aware of the fact that people with Alzheimer’s disease and their careers can become isolated.

“It was a big ask, really, to go into people’s homes and talk with them about a disease which doesn’t have a happy resolution, but I was warmly welcomed and shared many rich and worthwhile hours talking about what it is like to live with and alongside dementia and Alzheimer’s disease.”

“What amazed me was how keen people were to talk to me. I had the feeling that I was going into an area where no one cared, no one listened. It is so hard to understand what happens when someone is diagnosed with dementia, and yet the stories of life were so engaging even though so many people were marginalised by the ‘aloneness’ of living with the disease and the full on commitments of caring.”

Halina Ogonowska-Coates’ brief from Alzheimer’s N.Z. was for a series of ‘Memory boxes’, and Wellington designer Andrew Thomas developed a series of boxes that open out to become tables. The text of the edited interviews is screen printed onto the tables with typography by Aaron McKirdy. Opposite the stories is a photo album of the people who are part of each interview.

Halina says she sought to reference the domestic setting in which the stories are recorded. So the tables are all of found material and the table tops range from oak to ‘formica’. Each table has a set of wonky legs, representing the different/missing/changing way people with dementia see and relate to the world.

“Oral history for me is a powerful tool for passing on experiences and stories of living. The recorded personal history can offer an intimate insight into experiences that may be sidelined or marginalised, and can be a tactile and visual link between different worlds.”

‘Remember me’ was launched by the Governor-General, Dame Silvia Cartwright, at Te Papa, our national museum, in Wellington and will eventually tour New Zealand. In October, the exhibition will be showcased at the International Alzheimer Congress in Barcelona.

I was asked to give some thoughts from the perspective of having participated in this remarkable experience. I decided I would like to speak on behalf of all ten of us involved. As a matter of interest, there was only two of us who were not in residential care.

Here follows my short but hopefully worthwhile words.

An Awakening

Your Excellency, Dame Sylvia, respected guests, ladies and gentlemen.

As a small child I had a great fascination with the large drawer at the base of my parent’s wardrobe.

It was a virtual Aladdin’s cave. Not only did it have the old jerseys and clothes long grown out of but perhaps of use someday, it also had my wooden top, confiscated so many times for as many different reasons. It had old watches that did not go but were great to pull to bits, there was an old triangular bandage printed with the different slings and applications it could be put to. Sometimes I found a Christmas present, all wrapped up but overlooked on some long passed Christmas day.

The most loved treasure was always left on top. It was my Mother’s fur muff. The one she always wore to church on winter’s mornings. As I snuggled it to my face I could feel her warmth and the protection she gave me from my stern father. I could also smell the little pink lollies she always kept in there for me when I got restless in church. Even now, as I recollect those times I can still experience some of the excitement of forbidden places and the love and warmth of my mother.

Some memories are never lost. At least I truly pray that will be so. All that is needed is a converging set of circumstances that trigger an ability to understand and experience again some presumed ‘lost for ever’ delights. To perhaps rummage once again through that bottom drawer.

The coming together of this presentation ‘Remember Me’, the privilege for Jean and me to be asked to be involved and the only choice possible of Halina to be our story taker is one of those unique sets of circumstances.

With gentle and loving care Halina breathed on those latent memories and experiences.

We could express thoughts and feelings we did not even realise we had. The love and deepest thoughts Jean and I shared were able to be given light and shared, not in a voyeuristic way but as a revealed treasure, to be carefully handled and explored, then rewrapped again, closeted once more in the deepest parts of each of us.

There they could remain safe and undisturbed.

But Jean and I would like to make those parts of our lives, that Halina helped us to recall again, our gift to you. Many of us have told our stories and we pray that all involved have each found love and healing as we have. I ask you each to treat our collective words and images as gifts.

Gifts given to bring hope in the face of despair,
love in the face of indifference and pity,
knowledge where there is ignorance
laughter to unite the tears of sadness with the smile of God.

Dame Sylvia, Halina, Ladies and Gentlemen, we will forever remember our part in making this event a reality and thank you from our innermost depths as we live with dementing diseases and care for those we love.

We ask you to remember us all.