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Queensland-based carer Ben Stewart-Koster recently shared his thoughts on his Mum, who is living with Alzheimer’s disease, her story and his observations in caring for her.
Born in Myanmar during the twilight of the British colonial era Mum was raised all over the world by parents she still refers to as “Mummy and Daddy”. She lived through India, Kenya, Zambia (northern Rhodesia at the time) and was eventually sent to boarding school in England.
After finishing school, she began a nursing career, being one of the available roles for women at the time. Grating against her Matron did not endear her to the work and very soon she would be studying at the London School of Cinematography. When I was very young I would proudly tell anyone who even hinted at asking about my parents that Mum was their first female graduate, and she made several documentaries in the years after graduating. But this was a different era, where a woman followed her husband potentially at the expense of her own career. And so it was to be.
Sometime in the early sixties, Mum moved to South Africa with her new husband, and together they ran a chicken farm producing eggs for the local market. It was a challenging time with a difficult home life and they separated after 10 years of marriage.
Mum’s second marriage brought the family to her new husband’s home country of Australia. After settling here, Mum and Dad had two more kids, and together we were all raised as siblings. The intervening years brought the death of both of her parents and a battle with breast cancer. Nonetheless, she continued to present herself to the world, flawlessly.
She retired from working in 1994 because she and Dad were asked to lead the spiritual group of which they were a part. This led to 12 years of leadership and counselling for members. She became a well-loved figurehead and leader to many. Mum and Dad separated in 2006, and almost two years later she resigned from her leadership role, but remained a figurehead of the group.
It was around this time that we started to notice how she would tell us the same stories repeatedly, along with increasing mental and physical health challenges. Those first inklings of a sinister decay began to surface for me and my siblings.
It would be another six years or so before Mum was diagnosed with Alzheimer’s disease, in 2015. I remember the call from the doctor. I was Mum’s unofficial carer and so I was the first to find out. I was in a day-long meeting with some senior colleagues and I stepped outside onto a balcony to hear the news. It wasn’t a surprise but it was still impactful. We had a brief conversation, I arranged a time to call back later and then I called Mum.
“Ben, I’ve got Alzheimer’s,” she said. “I know Mum, are you okay?” We talked a little, but she sounded in a bit of shock. I said I’d come to see her in a couple of hours. I hung up and stared out over the street below, a bit numb, and then gathered myself to go back into the meeting. After the phone call, I thought I was managing just fine until one of my colleagues asked if I was okay. I said there was some family news and she suggested I go and deal with it. I did just that.
Now, three years on from the diagnosis, the changes continue. With the decline of Mum’s cognition, her identity has simplified. She is who she was, but the woman of the world, raised throughout the British colonies, who made documentaries in a man’s era, is a ghost that lingers in the long unread books in her book case and photos adorning her walls.
Mum still remembers many places, though she is scrambling some of the details. Having travelled the world and thrived in it, she is now sometimes afraid to travel 15 minutes from home to eat in a restaurant or walk in the park. From the outside looking in, I think the world has become a confusing place with sights and sounds changing too rapidly for her limited mind to process.
While it appears to be a simplification, I do sometimes wonder if she is being reduced to her core human self. Shedding the outward things we associate with her, but retaining the internal core aspects of herself.
In some ways, she is more open to suggestion than ever before. She doesn’t drink tea anymore, something everyone previously knew was her drink. After a suggestion from another resident in her retirement village, she now drinks coffee everyday instead. A simple adventure to discard a lifetime love for something new. Even though the world may move to quickly for her, opportunities for her own explorations still exist.
Whatever the process, the degeneration we witness is a tragedy. But I think it’s also a daily birth. Every day, Mum is a little bit different from the day before. It’s true that change is one way, and that is unspeakably sad for everyone, and of course immeasurably so for her. But every day a new person gets out of bed to face the world the best she can.
You’re just trying to give them as nice and as good a life as possible with the indispensable help of everyone you can find. There’s no recovery. There’s no goal of being in remission or disease free. It’s the ultimate pessimist’s situation. But every day as our loved ones get themselves out of bed to find out what awaits them, it’s up to us to find out who they are today and what they need from us to have as good a day as possible.
May we do that as best we can.