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 ninth 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.
Recently, my mother’s aged care facility went once again into lockdown, due to rising cases of Covid19 infections in and around Sydney. It is a completely understandable and appropriate response, given the toll that this pandemic has wrought upon nursing homes in NSW and now Victoria. There is a great deal of discussion in the media and the aged care sector about how prepared facilities and the sector overall were for a pandemic of this type – the answer seems to be, not very.
I’m not addressing that debate here, but rather, reflecting on the impact of lockdown on residents, especially those like Mum who no longer have independent resources to draw on to keep boredom and loneliness at bay: TV, hobbies, reading, puzzles, or knitting, for example.
How must it feel to have been kept in the one place – for half a year, and counting? Apart from visits where she’s enjoyed a short time in the sunshine out in the residence courtyard, her room and the dining room have been her entire world since March.
Family bring snippets of the outside in to her, partly to explain why things have changed so much: why she is only allowed ‘window visits’ with family now, or brief (and fairly unsatisfactory) attempts to connect via Zoom or Facetime. For someone with sensory limitations, they are no substitute for a hug, a warm hand on hers, a hot coffee made with love and sipped outdoors while we chat and listen to the birds in the lavender bushes. But they are all we have and so they have to be enough, for now.
Mum has heard us speak so much about ‘the virus’ (and really, what else is there to talk about in this, the strangest of years?) that she does remember the gist of it. It’s why, for example, her beloved grandson has been reluctant to visit too often, for fear of inadvertently introducing it to her or other elderly residents in the nursing home. Why we are no longer able to wheel her to her favourite coffee shop to enjoy a cappuccino. Why staff are all wearing masks. Why our visits must all be pre-booked and of limited duration and now – for a while anyway – not real visits at all.
I am grateful that Mum has not been in one of the Covid affected facilities and we have not had to endure the heartbreak of knowing she is sick in isolation without a family member there beside her.
But I will be more grateful still when the pandemic begins to fade. It will, won’t it? Surely, one day, we will be able to visit our elderly family again and the wretchedness of this time will be an awful memory.
I am just sad that these months have been so difficult for elderly folk like my mother. When you only have a few years or months left to you, it seems a tragic waste to have to spend them like this.
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.
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.