| 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 p[assign 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.
|
