Patricia’s Room: a loving tribute defying the invisibility of living with dementia

·6-min read

During the pandemic last year, photographer and art therapist Jennifer Blau was looking for a project to work on. She turned to her mother-in-law, Patricia, who is 90 years old.

“She was elegant, intelligent, glamorous,” Blau tells Guardian Australia. “She was always out, and involved in the arts. I wanted to document that in a woman at 90.”

After a heart operation however, Patricia “really quickly went downhill”.

“It triggered confusion and memory loss,” Blau says. Isolated and confined to her home due to the pandemic, Patricia began to develop dementia.

“This is how the evolution of my project happened. It changed from documenting a thriving 90-year-old woman to actually documenting the sense of what dementia looks and feels like.”

  • FORGET ME NOT – Beautiful, elegant and engaged, Patricia defied the stereotype of a woman at 90. In western culture, we rarely turn our cameras on the elderly, rendering them invisible, especially as they decline. Patricia was surprised I considered her a worthy subject, and said she was ‘amused to be my muse’.

Blau’s new photo series, Patricia’s Room, traces the onset of dementia in her mother-in-law. With the aim of breaking down the stigma associated with living with disorder, the series joins Blau’s The 50 Book in her lineup of photographic work defying ageism. Received well, images from the series have been selected for the National Photographic Portrait Prize, and will be featured at the Head On photo festival, to be hosted at Bondi, Sydney, in November this year.

“People really don’t understand dementia. If you haven’t watched someone else go through it, you have no idea what it’s like.

“People with dementia seem hidden behind closed doors, out of sight and mind.”

  • AGELESS – At 90 with dementia, Patricia became ageless. Although unable to remember moments in the short term, long-term memories remained clear. Having lost sense of time, she would move between eras, thinking she was 40 one day, 60 the next. It reminds us that we are only as old as we think we are, and our younger self is always a part of us.

  • ON REFLECTION – Forever beautiful, Patricia lies on her bed in what seems a moment of quiet reflection. I can only wonder what she is thinking and feeling. I know she is comforted by my presence and I feel privileged to be there to witness the moment.

Blau wanted to change that. “I want to make the subject of dementia visible. I want those people to feel seen and heard.”

Exploring a “new visual language” with her photography, Blau worked to represent Patricia’s world “becoming less tangible”.

“A person suffering from dementia is here, but not really. They’re fading away. You can’t really know what’s going on inside their head.”

  • THROUGH HER EYES – Patricia was active and alert until a major operation left her with increasing confusion, later diagnosed as dementia. As she began to lose words, photography became a way of connecting and affirming her presence. I tried to see the world through her eyes.

Blau says her mother-in-law seemed lost, and in a foggy state of not being able to understand, or communicate. She describes a “kind of distance” between them that wasn’t there before.

“That’s the thing about dementia,” Blau says. “You lose the capacity to find the words to communicate. You lose your fundamental way of connecting to people and the world.”

  • ABOUT 34 – As dementia develops, Patricia no longer remembers her actual age. In her mind, she is “about 34?”. She simply cannot believe that she is 90. However, she is still as glamorous and beautiful in her old age as she was in that photo. It is sad that so often we only equate beauty with youth. Somehow the older we get the more invisible we become, even perhaps to ourselves.

Photography became a new way for the mother and daughter-in-law to connect. Blau says Patricia “adored being photographed with the camera”.

“We would choose an outfit together, she would get dressed up, and she would tell me she couldn’t believe I thought her a worthy subject to photograph.

“One time she made me laugh and said, I’m amused to be your muse. That is so beautiful. It kind of reminded me there’s a person in there. Their feelings are there, they just can’t communicate or express it.

“I imagine that horrible feeling of being locked in yourself. It’s heartbreaking.”

In one image, Patricia sits at the piano. Blau says she wanted to convey how her mother-in-law would “come alive when she was playing”.

“Somehow, she was able to remember. With art therapy, sensory experiences bring up memories and awaken parts of the brain. So she could just sit down and play.”

With almost half a million Australians now suffering from the disease, dementia is the leading cause of death for women in Australia.

Blau has witnessed the deterioration of a person from memory loss twice, after her mother passed from Alzheimer’s disease. “So I feel very connected and passionate about this subject.”

“And it makes me question what happens to your sense of self, when you start to lose sense of time, place, relationships,” Blau says.

  • TRANSPORTED – One thing that cut through the haze of Patricia’s dementia was music. She appeared transported to another realm as she played piano, or listened to a CD. Music offered connections with her family and her past, eliciting clear memories and strong feelings. Although recent memories fade, music remains.

This idea of transience threads through Blau’s images, with Patricia pictured beginning to fade away, while the place she has called home for 60 years remains.

“It seems everything becomes intangible. She just seems to be connected into a different realm.”

Finding ways to evoke compassion for dementia, Blau plays on ideas of invisibility to other people, and oneself.

“That’s why I like the mystery of Patricia’s face hidden behind her mirror.”

  • PATRICIA’S RAINBOW – As consciousness of time and place dissolves, Patricia increasingly loses touch with the world. A global pandemic rages outside but she has little awareness of it. Isolated indoors, visits from family are her lifeline. Faced with impending loss, we try to catch each precious moment.

Blau says reflecting back on her work, however, is a challenge.

“Making my work is one thing, but looking back is really emotional.

“I get a sense of, is it OK for me to share this. That’s been a real dilemma for me, wondering whether the way I perceive her experience is representing her voice, or mine.”

“I just feel privileged to be able to be a witness to Patricia’s experience with dementia,” Blau says. “And to try and convey it truthfully, to help people finally understand.”

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