By Yasmin Noone
Film snapshots (top) Tom cares for his with wife Brenda, who lives with dementia; and (bottom) Michael, who has early onset dementia and wife Jane.
This Tuesday at 8.30pm, thousands of people around Australia will tune into ABC1 to watch, listen and learn what if feels like to have dementia, to be stigmatised by those who do not understand the disease, to be in love and to live life to the fullest.
The documentary, The Long Goodbye, follows the journeys of three families living with dementia as they struggle to maintain the identity and dignity of those they love.
The film follows three families all at different stages in their condition, over three years: Michael, who was diagnosed with early onset Alzheimer’s disease at the age of 49; Myrle, an elderly carer for her husband Ken who requires constant care and supervision; and Tom, a 72 year old carer who is desperately struggling to look after his wife Brenda who is in the latter stages of her Alzheimer’s disease.
Director, Kaye Harrison, explains how the film, which took three years to make, offers a personal, close-up and emotional view of the disease.
“It’s very honest, very open and very confronting at times but there’s also a lot of love and a lot of humour. It features lots of messages and is quite inspiring,” Ms Harrison said.
“I think we struck a good balance in making the documentary. It deals with a number of topics that people find interesting, like the decision to put a loved one into care and tge guilt experienced.
“And fact that even though person has deteriorated there can still be a connection and intimacy with other people and comfort given. That’s something I really hope the audience picks up on.”
Directing the film, she said, really changed her own thoughts about the disease and people living with dementia. She hopes that by watching the film, other people will change their opinion also.
“This film really gives voice to the people who are living with dementia or caring for someone with dementia. They are empowered to have a voice.
“If anyone in aged are wants to get a perspective of what it is like for a consumer or a carer to experience the disease, then this film is worth watching…It would be really helpful for professionals to get a real sense of a [person] is like that, where their values come from and how their decision about care is based on those values.
Producer, Gina Twyble, said that just like Ms Harrison and everyone else involved, she too was moved by the experience.
“The strongest hope is that, through this film, people will see the humanity involved in the relationship [between a person with dementia and their family],” Ms Twyble said.
“It’s really quite an inspiring film. It’s about the way that ordinary people cope in quite extraordinary situations.
“What we were really focusing on was human minds and human hearts – the mind rather than the brain.
“The mind is very much that sense of self and the personality, and the personality stays with a person [with dementia], which is quite incredible.
A wife’s point of view
Jane d’Arbon cares for her husband, Michael, who was diagnosed with early onset dementia at 49 years old. The documentary detailed their story and aims to bring home what it is really like for a younger person with dementia and their family.
Ms d’Arbon explained how the disease hit Michael six years ago, at a time when he was not only in the prime of his life but at the peak of his career. A criminal barrister with four teenage children, Michael was only a few months out of claiming the title of youngest judge in NSW when he was diagnosed.
“I had to push to get a diagnosis as the doctors said, ‘He is only 49’ and laughed at us when we brought up dementia,” Ms d’Arbon said. “I’d like medical practitioners to be aware of this, that early onset dementia exists, that you can diagnose it early and get medicines to stabilise it, at least for a little while.”
She stressed how life at 50 contrasts dramatically to life in retirement. Michael is now supposed to be working and supporting his family. None of his friends are retired and as they all have full-time jobs and there are few opportunities to ‘lunch’. Younger onset dementia can therefore be “very lonely”.
“His needs are very different [than someone who is older with dementia]. As the film shows, he has four children who are all at home. The house is noisy and messy. Then the film cuts to the other couples and there is silence and birds chirping in the background.”
Ms d’Arbon said that being involved in the three-year filmmaking experience put a positive spin on what is, an unfortunate situation.
“We want to be able to help others in some way and to do something,” Ms d’Arbon said. “The disease is awful if it consumes your live and you sit and wallow in it. It’s such as intrusive disease for all the family – not just for the person with the disease.
Through the filming, she said, “I got to see Michael happy”. “I’m happy when he’s happy…If we can help others by doing this film then that is a good end result.”
The documentary was launched at NSW Parliament House earlier this week by the CEO of Alzheimer’s Australia NSW, the Hon. John Watkins.
Ms d’Arbon explained how, after the first official screening of the documentary, she was approached by an aged care executive who inquired about using the video as an education tool.
“She runs several aged care facilities. She said she wanted to buy the video and use it as a teaching tool as she knows that staff sometimes get a bit flippant with dementia patients.
“She said she is also aware that there are staff who tend to push visitors out of the nursing home as they’ve got to get on with their jobs for the day. Through this film, you see how important it is for the family to be around the [person with dementia] and you also see inside the nursing homes.
“From what I hear…[many people] do forget what Alzheimer’s is. It’s not that funny person sitting in the corner putting socks on their head. Aged carers in homes forget who they are dealing with. I think this documentary will jolt it back for them for a while and make staff realise that the person with dementia once had a life and were all sensible, sane people.
“Michael had a magnificent career and an even better career ahead of him. [Individuals who live with dementia] are people and you should treat them as one would treat any other patient.”
The Long Goodbye is a Luminous Films production. For more information about the film, click here.