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.
Ben - a beautiful piece of writing about your cherished Mum, her past, her accomplishments, her love and her current day to day life. I noticed ever so slight changes in my Mum in say 2011 perhaps. Still subtle yet noticeable in 2012/13 and now in 2019 she has a diagnosis and as you say re your Mum - each day a different person emerges from sleep. Mum is still Mum. She may have Alzheimers related dementia however she is no fool nor stupid. She has no pretence and the child within is more pronounced to me as her son than ever witnessed. Mum remains kind despite frustrated, caring despite frightened. She doesn't enjoy grand adventure and big brassy events anymore but rather good food, coffee and gentle company with the feeling of safety in her predictable home life with me as her primary carer. I know I will have to let go soon enough for her safety, well-being and yes at times for my own well being and health. I feel I've brought her almost as far as I can but it doesn't mean abandoning her. We've been described as co-dependant. The noise of the expert commentary from 'friends' and 'family' is all just noise. People who have not done the heavy lifting all think that a care facility is the answer after they spend twenty minutes with her. 6 years later I still have my Mum, she loves the company and the care and having her basic needs met. People far too often walk away from their own projections however that's their fear, their issue and their lesson to be learned re empathy and understanding. Essentially others can't imagine themselves doing what I do so it's all too hard and the expert opinions flow like Texas crude. You and your Mum's story is one I shall read with great comfort many times. Thank you for writing and for inspiring me to do the same. My warmest regards and thanks. Michael
Thanks for sharing Ben.
Ben,such a warm and loving article about your mother. The last time I saw Diana possibly at Michael Marshalls wedding,whilst there are obvious changes she still has that beautiful bone structure. Give her my love have lots of memories . Liz Marshall keeps me up to date.
Beautifully written Ben, the last time I saw Diana was at Michael marshals wedding. Liz Marshall keeps me posted. I got a shock to see her photo but still the beautiful bone structure there.You are a wonderful son with so much love there.
What a wonderful positive story. After my mum was diagnosed everyone kept saying bad and sad things which made it really hard for me. So I decided I wasn't going to see it negatively but instead focus on the facts that she is physically here and that she is still my mum but she is just a little bit different. Thank you so much for sharing your story .
Thank you for sharing. One day I hope I will share my story in this way too. It can be hard to talk about and not everyone understands. My mother is in care and has been since December 2017. That decision was a tough one for the family. Anyway, thanks again.
I loved reading this. Thank you. My husband is dealing with much the same thoughts and process as you with his own mother. A daily new birth is a very realistic approach to the glass half full. I will pass on your thoughts to him.
That last paragraph says it all. I had to watch both my mother and father go through dementia. Mum had Alzheimer’s and dad had vascular dementia. Mum survived 14 years with her Alzheimers but dad only lived just over 2 years with his dementia. I didn’t want to but I had to put both of them in a nursing home at the same time. While all that was going on my partner of over 30 years was diagnosed with Frontotemporal dementia. What can you do. The main thing was to carry on and keep a positive attitude. Eight years after my partners diagnoses, he’s still with me and I am determined he will never go into a nursing home. We’ve had a fabulous life together so he will get the best of everything. He’s still the same man I met 38 years ago.
Ben. This was a beautifully written piece. I lost my Mum to this disease just over a year ago. She was 62. I wish I had this type on personal insight whilst I was going through this. Be kind to yourself and keep doing what you are doing. It is one of the most hardest journeys you will take, when all you want to do sometimes is get off the crazy ride. Best wishes Laur (HOBART, tAsmania)
What a beautiful, insightful reflection. Thank you for these words, they resonate strongly with my previous work in aged care.
That is a lovely way of looking at it. My Dad is not the same person anymore but he is still my Dad and even if he doesn't know me as well I still know him and all that used to make his tick. My love for him doesn't change even though I am reduced to someone he recognises without a name anymore.
What a beautiful article. You are a wonderful son
My Mum resides in age care and has for last 7 yrs. Due to frontal lobe dementia and other health conditions. I work in Age Care as an Asst. in Nursing/Personal Carer. It is hard time to see my own Mum let alone each resident I have dealings with in the Nursing Home where I work with daily changes even minute to minute changes from mood to what their wanting to eat and or drink. We just have to remember they are still human even though they might decline in ways whereby we have to help them with their daily needs - they are still with us even if they forget things at times. My Mum sometimes slips back in her past but this is a wonderful moment to talk about the past but I always bring Mum back to the time in moment and future ahead. I wish you all and others the best of health for your loved one/s suffering some type of dementia/alzheimers.
Ben, thank you for your story. Every time I read these, it helps me realise that we are not the only ones going through this, and the similarities in the stories, is a familiar feeling. Mum is not the same Mum, but she is still Mum. And even though part of my Mum's disease is that she is isolating herself, I think from confusion and embarassment of not remembering names, etc, we are still doing the best we can to make her life easy and good - and she still loves her crosswords, even if she can't always finish them now. Thank you
Very well written, Ben