If you’ve followed by blog for a bit you’d be familiar with the series of posts I wrote called Travels with my Mother, all about my journey with my Mum’s dementia. Mum passed away last year but the memories of her experiences, and the family’s with her, are still quite fresh. So I was keen to read Dancing with Memories, a unique picture book by Australian dementia care worker Sally Yule and illustrator Cheryl Orsini.
I love the idea of introducing this often misunderstood condition to kids, in an age-appropriate and gentle way. I also applaud the themes of respect, dignity and agency for the person with dementia. Another special thing about the book is that it contributes to understanding of brain health through a little Q&A at the end of the book (by Professor Ralph Martins) and some healthy recipes from Maggie Beer. In this way, the authors plant the idea that brain health starts young!
Best of all, the book tells a story, all about Lucy, who is excited about going to her granddaughter’s wedding.
I am Lucy and I dance with memories.Dancing with Memories
Sometimes I remember.
Sometimes I forget.
Sometimes I remember that I forget.
Sometimes I forget that I remember…
My doctor says I have dementia.
I wish I didn’t but I do.
‘Your brain has changed’, she says, ‘but you are still Lucy.’
She knows that I have a brain AND a heart.
Young readers will go with Lucy on her adventure: she gets lost on her way to the wedding, but a supportive community and local friends set all to rights again and by the end of the story, Lucy is dancing with her granddaughter, along with her memories.
The illustrations are gentle, joyful and colourful and they help to centre the person with dementia within their family, home, and neighbourhood – which is as it should be.
I would suggest that every doctor’s waiting room should have a copy of this book, as well as public and school libraries and places offering services to people with dementia and their families. It will go a long way to demystify the illness and allow kids to continue to love their family member or friend with dementia without feeling frightened or confused.
An interview with the team behind the book can be found here, if you’d like to know more about the project.
Dancing with Memories is published by HarperCollins in July 2022.
My thanks to the publishers for a review copy.
This is the eleventh in my occasional series I’m calling Travels with my Mother. If you’ve not read the first in the series, you might wish to have a look at that one as it gives the context behind these posts.
Watching ABC TV program The Drum recently, I was moved to tears by the story of ‘Jason and Oma’, in which Jason shares his experiences of caring for his mother at home. You can watch it here. It’s a beautiful example of how compassion and family love can make the life of a person living with dementia so much richer and full of joy, despite its many challenges.
Someone once explained dementia as like taking someone you love away in constant tiny pieces. We call those tiny pieces the missing things. And although the missing things keep coming, I’ll just keep topping up the things they take. And as much as I hate thinking about it, I know that one day they’ll take you away completely. And when that happens, I just want you to know that your stories will live safely inside me.Jason van Genderen, on The Drum @ABCTheDrum, @JasonvGenderen
This sums up my feelings exactly. Thank you Jason, for so beautifully and simply expressing what I’ve been trying to articulate in my Travels with my mother posts.
When it comes down to it, at the end of our life we have only our memories – our stories – left. What, then, when those memories are eroded?
When someone we love becomes ill with a disease that causes their memories to disappear, sometimes well before their physical bodies die, it can feel as though that person is being taken from us early. Experiences, emotions, learnings all reside in those parts of the brain most affected by dementia. When the processes of our brain are chipped away, so too are our stories. The funny ones and the sad. The figures that people our past and our present.
That’s why when I’m with my mother, we frequently spend time talking over old times, family events, stories from our shared past but also some from before my birth. Mum often looks surprised when I relate a story from her youth, or one associated with an old photo taken before I arrived in the family.
“How did you know that?” she’ll ask in wonder. Or, ‘You know all the stories!’
I often feel a glow of satisfaction at those moments. Job done. Not completed, of course, but in progress. My role is important. Keeper of the family photos. The tub of family history documents sits in my home study. I attempt to write stories woven around some of the people from our family tree. I will tell and re-tell my mother’s stories as often as I need to, as Jason does, to ensure that they will ‘live safely inside me.’
Our stories matter. They are the bricks that make up our lives and the lives of those born after us. They should never disappear because someone’s memory is chipped away. Their stories, and ours, are who we are. Take away our possessions and they are all we are left with.
This is the tenth in my occasional series I’m calling Travels with my Mother. If you’ve not read the first in the series, you might wish to have a look at that one as it gives the context behind these posts.
In conversation with Mum:
‘I couldn’t get on to you by phone yesterday, Mum. You must have been – ‘
Mum broke in. ‘Oh, I wasn’t here, love. I was away for a few days.’
I tried to keep the surprise from my voice. ‘Oh! Where did you go?’
Mum gave a chuckle. ‘There was a competition of some sort, a raffle I think. First prize was a trip away. I walked in on the end of the draw and they said “Well Doreen, you’re the one who organises all of our activities and such, so can you please organise this trip? You’re in charge!”
‘So where did you take them?’
Mum thought for a moment. ‘I can’t really remember exactly where. We went along our highway, in a bus. We just stopped where we liked, all different places.’
‘Sounds wonderful,’ I ventured.
Even over the phone, I could tell Mum was beaming. ‘Everybody said later, “We had a wonderful time!” I felt pleased especially as it came at the last minute. I did feel pressure, hoping the trip would go well, so I was happy it turned out so successfully.’
Classic Doreen, ever the organiser. The epitome of the old saying: If you want something done, ask a busy person.
Back in her day, Doreen held voluntary positions in many organisations, including the Bilpin District Women’s Association (which in the 1960’s raised funds for the Bilpin Community Hall to be built and was an important social connection for women in the village and outlying areas); school Parents & Citizens committees; fund raising for community projects; and later, coach, umpire, and President of her Women’s Lawn Bowling club. Many events and competitions were successful due to her participation and leadership.
Being organised, and being useful. The two guiding principles of my mother’s life, so aptly reflected on her latest travel story. It was not by accident that this one involved taking other people on a pleasant bus trip. So many of her ‘travels’ reflect her need to be helpful, to do something of benefit to others, and to do it well.
Although she could probably recall the names of a very few fellow residents in her nursing home, in her mind Doreen is contributing to the well-being of others there, in her own indomitable way. Heaven help the brave soul who might want to stand in the way of Mum and her to-do list!
I love that she is continuing in this role and using these skills on her travels.
This is the eighth in my occasional series I’m calling Travels with my Mother. If you’ve not read the first in the series, you might wish to have a look at that one as it gives the context behind these posts.
On a visit with Mum, this conversation:
‘Why is there an oxygen machine in my room?’
‘You had another of those funny turns last night, Mum. The nurse decided not to send you to hospital but to keep an eye on you here, and you needed a bit of oxygen.‘
Mum looked perplexed. ‘What are the funny turns?’
I took a breath. ‘Well, they’re kind of like mini-strokes. You come out of them quickly but you’ve had a few lately.’
The perplexed expression gave way to one of enormous disappointment.
‘Do you know, I was thinking about doing some travelling around Australia. But if I’m having these turns then I can’t really ask anyone to come along with me, can I? ‘ Her weakened eyes focussed on me for a few moments. ‘It would be too much responsibility for another person. I couldn’t ask that.’
As always, Mum’s main concern is for other people, despite her own sadness.
My mother is fading. At each visit her inner light appears more subdued, her grip on the world loosening. I don’t know if she knows this, if the part of her brain that would process such information still allows her to understand that her time on earth is now limited. Perhaps it does.
If so, she shows no sign of it, no distress. I am relieved by this, because I feel sure that such understanding might lead to anxiety or regret. When you have lived over ninety one years, do you still wish for more time? I don’t know and my guess is that, as with most things in life, the answer is likely: it depends. If my daily existence were one of chronic pain, or indignity, boredom, a physical and mental tiredness, then I might long for it to be over. Within that longing, though, surely there would be a certain looking back, a nostalgia for experiences from my past, a wish to stay with loved ones?
And here is where the cruelty and kindness of dementia steps in. The process of becoming less aware, less attached to people and places, must cushion the prospect of leaving. But for the people being left, family you have loved and who still love you, it is painful, to put it mildly.
Sometimes Mum hints at disappointment, when reality breaks through and she realises she can no longer do certain things, as in the above exchange about travel, for example. And surely this is where her dream world / fantasies come in, as a substitute for adventures no longer possible for her in the ‘real world.’
My wish for Mum is that in the time she has left, she will continue to dream and go wherever her heart takes her.
This is the seventh in my occasional series I’m calling Travels with my Mother. If you’ve not read the first in the series, you might wish to have a look at that one as it gives the context behind these posts.
‘Do you know what this is, Mum?’ I handed her a large decorative metal key.
Mum turned it over in her hands, peering at the engraving on it. ‘It’s a 21st key, is it?’
‘Yes, and it was given to you by your dad.’
I showed her the message her father had put on the key:
To Doreen, Love from Dad. March 1950
‘And there’s another one here, a wooden one. It’s a bit of a mystery.’
I handed her the second key, a light wooden form, covered with signatures of people like an autograph book. She traced the writing with her thumb.
‘Whose was this?’ She didn’t seem to recognise it.
‘That’s the mystery! I thought at first it was Dad’s, because he signed it on the front, here.’
I showed her Dad’s flourish, smiling as I did, because Dad had the most dreadful handwriting and he’d clearly made an effort here.
‘But it can’t have been his, because he turned twenty-one before you’d met. And see here, on the back? These are autographs by your family and friends. Do you think your dad bought this one for you as well? Was it the custom to also give a wooden one for people to sign?‘
Mum considered this. ‘I don’t know…perhaps.’
I spent more time reading out the names of the people who’d signed her wooden key, all those years ago. Her brother Art and sister Betty, her soon-to-be sister-in-law Norma, and many others whose names I didn’t recognise. The winter sun warmed our shoulders and small blue wrens pecked at the grass in front of Mum’s wheelchair.
Mum seemed content to know that whatever the mystery of the wooden key, it had once meant something to her. And pleased to be reminded that the people who had signed it had wanted to wish a happy life to the young woman she had been in March, 1950.
This is the sixth in my occasional series I’m calling Travels with my Mother. If you’ve not read the first in the series, you might wish to have a look at that one as it gives the context behind these posts.
This, in conversation with Mum:
Mum: I’m so tired, love. But I’m not doing anything today. I got back yesterday from a trip out, like I used to do, on a pony. Just me and another woman. We’d have a pony each and we’d set out from North Richmond and decide: this way or that way? So this time I chose north.
Me: ‘What was there?’
Mum: Not much back then. I’d follow the river for a bit and find a few people—squatters—on the river bank. I’d say ‘I’m here to help you. Is there anything you need?’ But they were usually very suspicious, like they thought I was there to interfere. They didn’t like the idea of being moved off the land.
They’d say: ‘We don’t need anything, go away, leave us in peace.’
Anyway, all that was a long time ago. Must be twenty years ago.
Me: ‘Did you enjoy those pony rides?’
Mum: It was an adventure. And I felt I was doing good for others because every now and then I’d come across someone who needed my help. But I don’t think I could ride all that way on a pony any more. I suppose if I tried it now I’d get a right old backache!’
As usual after one of these chats, I went searching for the golden nuggets of truth in her words. To my knowledge, Mum has never ridden a horse or pony in her life. To dig deeper, to the emotion of her tale, I see it is about freedom and choice: the ability to make decisions about where she wanted to be; and to be able to move about with ease. Two things no longer available to her.
And, just as importantly, the wish to feel needed – to be of use. Most of Mum’s life has been spent ‘doing’ for others in some way: home maker, income earner, family glue. And outside of the home and family, she took on roles in community, school, leisure activities. Always busy, a wonderful organiser and contributor.
In the tale of her pony rides, she also references early days of settlement of the Hawkesbury district. She married into a family with deep roots in this region going back to the Second Fleet of convicts in the late 1700’s. The Eathers, from whom I am descended through my father, were among the earliest of English convicts and later settlers along the Hawkesbury River. Mum’s own family history also features several convicts who eventually settled along South Creek.
In the past couple of years, I’ve been talking with Mum about our ancestors and about early colonial days. I’ve delved deeper into family history, as I began to write fiction inspired by some of these people and places. Several decades ago, Mum was a keen family historian and did a great deal of leg work in researching and documenting the lives of our forebears. I picked up from where she had left off. So perhaps its no surprise that images of ‘squatters’ and settlers along the once wild Hawkesbury region feature in her imaginings.
I’m glad that she is able to live out stories of colonial days in her thoughts and fancies as she ventures into new territories.
This is the fifth in my occasional series I’m calling Travels with my Mother. If you’ve not read the first in the series, you might wish to have a look at that one as it gives the context behind these posts.
I found Mum’s high school history notebooks, tucked away in a treasure box. On a recent visit, we went through them together. She had written copious notes in beautiful handwriting; no doubt copied from the blackboard or from textbooks, as was customary in the early 1940’s.
The world was at war, Britain fighting to maintain its sovereignty but also its empire. The lessons Mum wrote were all to do with struggles of the past: British royals, the English Civil War, the French Revolution, British dominions in India and Australia. Captain Cook, Arthur Phillip, colonial expansion, ‘troublesome natives’ and ‘lazy convicts.’ ( Mum pulled a face when I read aloud the last two references, rightly shocking today. I was pleased to see her sense of injustice had not been diluted by the years.)
She recognised her old Phillips School Atlas with it’s red cover. Almost half the world was coloured pink back then – pink for the British Empire.
When we discussed her school years, she remembered some things differently. She said she’d had to go to the ‘domestic high school’ because she wasn’t good enough to attend the more academic school. I reminded her that she’d been more than smart enough, but economics and transport problems made attending the more distant school impossible; she’d had to be content with learning domestic science, sewing and cooking at the closer school. She looked both uncertain and pleased by this reminder. Mum was always justifiably proud of her clever mind and aptitude at study and I was saddened to think that this capacity was something she no longer recognised.
The conversation showed that there can be different versions of history, depending on who is doing the telling, when and why. And that memory can be an unreliable narrator at the best of times.
This is the fourth in my occasional series I’m calling Travels with my Mother. If you’ve not read the first in the series, you might wish to have a look at that one as it gives the context behind these posts.
Mum seemed flat this morning: subdued and disconnected. I spoke about bits and pieces for a while and she was polite, but her interest flagged quickly. When I pulled out the items I had brought to show her, her demeanour changed.
In the past few weeks I’ve used a sort of ‘Show and Tell’ on my visits with Mum. While her eyesight is now so poor as to make it almost impossible for her to properly ‘see’ an item, she can still touch, hold, or smell one. She enjoys old photos, not quite ‘seeing’ them, but hearing my descriptions of the people and places in each. I’ve heard Mum’s stories about the photos in the old family album – those tiny sepia images -and I can now tell them back to her. It’s the stories of the photos, not the images themselves, that we connect with. Occasionally, a memory will be sparked and Mum will travel down a path from long ago. At the very least, we talk.
On this visit, the items I took for my ‘Show and Tell’ included a chic little navy blue handbag (circa 1951). Inside were several hat pins, a girl guide badge, and a tiny harmonica, no bigger than half the length of my thumb, in its little box.
I placed the handbag on the table in front of Mum. Recognition was slow, but when I told her my guess that this was a bag she had purchased to go with her wedding outfit, an expression of puzzled pleasure crossed her face. We looked at the wedding photo on her shelf and examined the pretty pale blue dress she had worn on that day.
Next were the hat pins, in their spongy cushion. I touched Mum’s fingers to the rounded bobbles on their ends. She had no recollection of hat pins. When I suggested she may well have used the one whose bobble was a soft blue-grey colour to hold her wedding hat with its tiny veil in place (the colour complementing both hat and dress) she nodded, pleased.
The tarnished Girl Guides badge was another mystery to be explored. It prompted a look through the photo album and there, as I’d remembered, were three cloth ‘merit badges’ which Mum had earned during her time as a Girl Guide. She traced the stitching on the badges with a forefinger, with a look close to wonder. Was she recalling this long ago time? Or pushing her damaged memory to try, try, try to bring it back?
Finally, I placed in Mum’s palm the miniature mouth organ. Her fingers explored it but no idea came to her as to its purpose. I blew into it gently and we heard its distinctive sounds.
‘Dad had a proper mouth organ,’ I said. ‘I don’t remember him playing it but he used to talk about his time in the brass band when he was a youngster. I think he played trombone?’
I smiled: as always, the image of my skinny dad with a skinny trombone was irresistible. ‘I’m guessing this little mouth organ was his too.’
Mum looked mystified.
‘But what would it be doing inside my handbag?’
That, we will most likely never know.
This is the second in my occasional series I’m calling Travels with my Mother. If you’ve not read the first in the series, it may be worth having a look at that one as it gives the context behind these posts.
Mum sounded tired this morning on the phone, her words slurring a little. She agreed she was weary, adding that it was because she’d been on a long drive to Canberra with a car full of youngsters.
‘What were you doing in Canberra?’ I asked.
‘Well there were young people here in the nursing home wondering what they should be doing. I asked if they’d like to get a singing group together and they said yes! So that’s what we did.’
‘Fantastic! Were they a nice group?’
‘I got to know them quite well. They had to be escorted from one stage to another but they got used to it. Some of the songs were poking fun…’
‘Satire?’ I wondered.
‘Yes, I suppose so. Some satirical songs and some others.’
‘It sounds a lot like the National Folk Festival in Canberra. Going from stage to stage. Was it like that?’
‘A lot like the Festival, yes.’
‘Any wonder you feel weary today, Mum. You’ve been doing a lot.’
‘Yes, I think I’ll just rest today.’
For many years, Mum was a regular attendee at the annual National Folk Festival held in Canberra, Australia, over the Easter weekend. She’d stay with my sister who at that time lived in that city, and they’d come to the festival site each morning equipped with warm clothes, sun hats and water bottles, ready to enjoy a variety of concerts, dance displays, spoken word presentations and other cultural delights.
The festival is held over a large open site with most venues set up in large marquees. Wandering around the festival site is always a pleasure, as is sitting under the trees with their autumn tints, sipping a coffee and chatting with friends. Mum loved these times.
As her physical aches and pains increased and her eyesight started to weaken, her hours at the festival began to shrink. When my sister moved away from Canberra, going to the National was no longer an option. So these events are now in Mum’s past.
It’s a pleasure that is no longer available to her except through her memory and imagination. I’m certain that these earlier experiences are at the root of our conversation and her carload of youngsters, as she drove them to Canberra for performances on various stages.
After a long life lived with intelligence and a shrewd awareness of the world around her, my mother’s mind is failing. Not in a ‘railing at the world’ kind of way; hers is a much gentler decline, expressed in a vague blunting of her wits and a profound forgetfulness. I think her memory loss must feel like falling into a black hole every five or ten minutes. She often can’t recall answers to a question and will ask the same one over and over. Once a teacher, mentor and sounding board for her daughters and grandson, her attention now wanders, so it’s hard to maintain a conversational arc for longer than a few minutes at a time.
I treasure my connection with Mum, and this is painful to watch. She was the person who supported my learning and my studies: the boring parts (spelling lists in primary school, equations in high school) and those that were more fun (discussing books we’d both read, bouncing around ideas for an upcoming history essay for uni.) Mum and I enjoyed trips to the movies, watched classics together on Bill Collins’ Golden Years of Hollywood TV presentations, held season subscriptions to the theatre, talked politics and current affairs, and debated social issues over cups of tea and home made cake.
She was a vibrant conversationalist with a keen interest in and knowledge of world history, geography, literature and politics—much of it self-taught, and squeezed into rare moments of leisure from her demanding roles as orchardist, store keeper, café owner and home-maker. A sounding board for ideas or problems big or small, Mum was my ‘go-to’ person to share news, to fine-tune plans, and to swap stories.
Now, my heart aches as I witness her vagueness, her struggle to follow a conversation; her reduced engagement with the things and people around her. On my visits and daily phone calls, I keep up my chat about my life and things I’m doing, and also current events and important things on the news. But these are no longer meaningful for Mum in quite the same way.
I grieve for the connections we once had over ideas, places, people, books.
There is another side to this. As the insidious progression of her dementia damages parts of my mother’s brain and cognitive function, other facets emerge in original ways that are always fascinating, often surprising. After each visit or phone call I wonder about the conversation we just had, trying to parse the things she said or did, to pinpoint their meaning or origin. There is generally an echo of an event or comment from earlier that day or week that somehow makes sense in the fresh arrangement of Mum’s mind.
What this has meant for me is the possibility of engaging with my mother in novel ways, not informed by sadness alone. I am learning to see and appreciate the pleasure she might take from her perception of the world. Instead of mourning the erosion of her faculties, I strive to notice the beauty of her utterances and be intrigued by her sometimes startling statements. There is often humour, too—conversations with Mum are frequently hilarious.
All this is to say that I have recently embarked on a new journey with my mother, travelling with her on her winding pathway through the last months and years of her life. As I like to write, and writing helps me to make sense of my own experiences, I thought I’d begin a series of occasional blog posts about our explorations. Together, Mum and I will time- travel, meet people from the past, and venture into unknown territory. We will do some amazing things.
I invite you to join me on my travels with my mother.