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Dementia in focus - living and dying in a foreign land

This is an excerpt from Gwelup Chaplain Kerryn Monger’s presentation at Bethanie’s recent Spiritual Journey Conference. The theme for 2021’s event was ‘living and dying in a foreign land’, as dementia can feel like a foreign land for many people.

I start by thinking about the perspective of a person living with dementia. While my kids would tell you I frequently forget what they tell me or ask me, I do not have dementia. I recently asked one of them if they thought my memory was getting worse. “Not at all,” she reassured me. “Nothing’s changed. You always forget what we tell you.

To capture the experience of living with dementia, I have to rely on the words of others. I’ve also learned by listening to the clients I’ve known as a chaplain in aged care. I currently have a client, Linda, who loves a coffee and a chat. She misses catching up with her friends but feels they don’t know what to say when they are with her. Now she has a companion she calls Alzy, who spoils all her fun and won’t let her do the things she enjoys. Linda’s metaphor for dementia is a constant, unwanted wet blanket of a companion she can never escape.

It’s not uncommon for people with dementia to use metaphor to explain their experiences. Writing about dementia in her book ‘Listen to the talk of us’, Perth author Trisha Kotai-Ewers suggests that people with dementia have a more developed sense of metaphor than most of us, and often use words figuratively.

What I have seen is that many, though not all, people with dementia long to maintain their connection with the world they know. They are doing the best they can, but the way the world depicts dementia often overrides their efforts.

In our culture, it is considered important to construct your own identity, tell your own story. We tell children: you can be whoever you want to be. People with dementia lose the ability to tell their own story. The stories told by doctors, nurses, friends, family and society eventually overwhelm their own story.

Dementia definitely has an image problem.

Christine Bryden described her journey with early-onset dementia as one of self-discovery in her book, ‘Dancing with Dementia’. But it wasn’t a solo journey. She needed family and friends. She also made new friends and even married again. People living with dementia need community more than ever, if they are going to live well. It’s the connections section of the well-being puzzle.

Wellbeing puzzle

Even in the very last stages of dementia, I’ve seen people light up when connection is made. I recall a visitor to a facility recognised his former teacher from Wanneroo High School. “You probably don’t remember me, but you were my teacher”. John, the resident, had difficulty expressing his thoughts in words. But we didn’t need words to understand his feelings – his face lit up. The connection was made.

Another time, I was walking with a newer staff member taking a resident back to his room. He was in the late stages of dementia, and no longer able to speak. I’d known Gerry for quite a few years, so I was telling the staff member about Gerry’s work as a warden at Fremantle Prison. She had been to Fremantle Prison and expressed her amazement. Gerry’s face lit up. Another connection.

Sometimes our team has set up a dementia simulation to help people understand what it would be like to live with dementia. At the end of that we asked them to reflect on what it was like. They told us it was frustrating, and they found people trying to help them were often more annoying than helpful. One man said, “I hope if I do get dementia that people will still treat me like a person.”

That would be my hope too. I hope that I would still be welcome in my church, and in my community. That I could still go to the café with my friends for coffee, even if I couldn’t drive myself. I hope that my children would still ask my opinion, rather than making decisions for me. I hope that if I do get dementia that people will still treat me like a person."

Kerryn Monger, Chaplain Bethanie Gwelup
Kerryn has close to 20 years’ experience in aged care chaplaincy and is a sessional lecturer at Perth Bible College lecturing on chaplaincy. Kerryn is also a mental health first aid instructor and a proud grandma.

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