…how do we endure when suffering becomes unbearable and our obstacles seem monstrous? How do we continue to glow when the lights turn out?…We must love. And we must look outwards and upwards at all times, caring for others, seeking wonder and stalking awe, every day, to find the magic that will sustain us and fuel the light within – our own phosphorescence.Phosphorescence p281
This lovely book was a recent birthday gift from a dear friend (thank you Jennie!) and so timely after a year of tragedy and hardship at both the international and local levels. So many people I know have had a difficult year- economic worries, personal health challenges, suffering and death of loved ones, separation from people and places that they care about.
So reading Julia Baird’s book was like applying a balm to raw damaged skin: soothing, calming, but also an invitation to think deeply about life and what really matters. In it, she talks a little about her own personal trials, especially her very serious health challenges, but the book is about much more than one person or one set of difficulties.
It’s a broad ranging exploration of what gives joy, wonder, passion, hope, purpose; especially what keeps people going during the hard times. She includes themes such as the power of nature, connection and community, working to a purpose larger than ourselves, the role of beauty and silence, paying attention.
Each theme is illustrated by examples from the author’s own life but also the lives of others from past and present times. I particularly enjoyed reading about her activism and that of others on issues like feminism, climate change, indigenous, Black or LGBTQI rights, and the environment. Comments on the need to maintain effort over the long term resonated for me, as someone who has at times despaired at the slow rate of change and the feeling that achieving social justice goals is a matter of ‘one step forward, several leaps back.’ As Baird says:
You don’t walk away until the work is done.Phosphorescence p 101
Most moving to me, however, were the two chapters she addresses to her daughter (Letter to a young woman) and son (Thoughts for my son: the art of savouring.) Such beautiful, wry, humorous and hopeful reflections from a mother to her children.
Phosphorescence is a book to be savoured, enjoyed, mulled over and returned to again and again.
It was published by Fourth Estate, an imprint of HarperCollins Publishers, in March 2020.
This is the seventeenth in my series called 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.
As some Covid-19 restrictions began to ease at Mum’s nursing home, the family once again had the opportunity to take her out in her wheelchair to enjoy a (socially distanced and outdoor) cup of coffee. Several of us did so in the space of a couple of weeks, but when I asked Mum about these excursions, she had pretty much forgotten about them.
At first I found this disappointing. I was so excited to be able to venture out with Mum after a seven month hiatus in which her contact with the outside world was through her window. It came as a blow to realise that for her, those excursions were momentary pleasures, forgotten soon after they occurred. And, if I am honest, it seemed a poor return on the effort involved – a round trip drive of nearly two hours and the walk to and from the coffee place – for about fifteen minutes of actually drinking coffee together.
When I thought more about it, I realised that for Mum, the pleasure she takes from these times is now is in the actual experience of them: getting out in her wheelchair to see an expanded array of sights, feeling the sun and breeze on her skin, and having coffee with a loved one somewhere outside her room.
The fact that she forgets it so soon after is probably irrelevant. So is the fact that she can no longer ‘look forward to’ something in the way she once would have done. She is truly and profoundly living in the moment, taking her small pleasures right then and there. Not before, not after. Just in the ‘now’.
It’s a lesson for me. To let go of my own needs and assumptions and allow Mum to lead the way. To value the fifteen, or five, or however many minutes are enjoyable for her and to allow that to be enough motivation for the effort I put in.
Truly, dementia is an exercise in living in the moment like no other.
Image by Daniel Kux at pexels
This is the sixteenth in my series called 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.
Some of my mother’s ‘travel stories’, of imagined trips or holidays, bring to mind actual experiences we have enjoyed together over the years.
Our parents were not especially adventurous but when it came to connecting with their daughters, they went all out. They’d travel to wherever we were: Canberra in the very early 70’s when my sister went to university there; a hippie community in northern NSW where my middle sister lived for a time; the USA and Canada when I was an exchange student. When I lived on a remote island in the Torres Strait, they began making plans to visit, though I’d returned to NSW before that could happen.
When my son and nephew were young, my two sisters and our parents would take them to Port Macquarie for a week or two each summer. They were wonderful holidays of mornings at the beach, afternoon teas at bangalow-fringed cafes, Grandpa fishing or kite flying with the kids, and nights spent reading or playing rowdy games of Canasta.
As our parents’ mobility and health began to decline, those glorious weeks were replaced by weekends, somewhere closer where we could still meet up and enjoy a seaside break. We’d lost one of our family by then to cancer, but those shorter holidays were still enjoyable, even if long beach walks were replaced by short strolls through town or a drive to a sightseeing spot.
Then Dad passed away and the closest we got to family holidays was a weekend with Mum at Kiama and another quick trip, to Canberra, a year later.
In 2009 when I was recovering from illness, they made frequent trips to provide support, company and practical help. Mum was eighty and Dad eighty four and they were in the final years of having their driver’s licenses.
After they’d both given up those licenses, their trips were chauffeured by family or in a taxi. Excursions became more functional: shopping, banking, doctors; but there were still occasional visits and celebrations with family for birthdays and Christmas.
Reflecting on those times, it strikes me that we usually don’t know when we are experiencing the last of a particular event. I’d no idea that the weekend at Kiama would be the last time Mum would enjoy a visit to the seaside. Or that Christmas last year would be the final time Mum would be able to visit my home. When was the last time we enjoyed a movie at the cinema? I think it was at little Glenbrook Cinema, watching Their Finest Hour. And our last celebratory restaurant dinner together was for Mum’s 89th birthday.
Those memories are now bittersweet, knowing that they are the last times we did those things. Mum’s world has been reduced to her nursing home and Covid-19 has shrunk it further, as I’m not able to take her out in the wheelchair to her favourite local cafe.
I do hope that we have not yet had our last cappuccino together.
All this is to say: treasure those precious moments and experiences with the people you love. We can never know if there will be another. And memories of special times can form a cherished album that we keep within our minds and hearts, full of those last things.
Images by Miriam Fischer & Nastya Sensei at pexels
This is the fifteenth in my series called 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 family had to have some difficult conversations and make a hard decision: if our Mum / Grandma’s condition deteriorates in the near future, as her GP suggests may well happen, what, if any, interventions should take place?
All of the tests and/or treatments available involve a trip to hospital and intrusive procedures. With a very frail elderly woman with dementia, along with a raft of other health issues, hospital is not a place we want her to be – especially right now with Covid19 concerns.
So in consultation with Mum we have made the call to keep her in her nursing home and design a care plan that keeps her as comfortable and calm as possible.
There’s always a little voice of doubt with these things – what if we get it wrong? – but her GP is supportive of our decision and it means we get to spend the most time with Mum in the best possible way, rather than swathed in PPE in a hospital ward where visits will be limited.
Thinking about the fallout of Covid19 specifically, and with ageing and end of life issues more generally, it strikes me that one of the saddest aspects is the fracturing of an elderly person’s world.
When we live 90 or more years, chances are that many of our lifelong friends will have died before us, so our networks shrink accordingly. Add to that the limitations on visiting nursing homes and hospitals. There are many people being denied that precious last visit or connection with those they love.
In my own family I have an uncle who had wanted to visit Mum in her nursing home, because he is her only brother-in-law still living, and they had not seen each other for some time due to ill health on both sides. Then Covid19 visiting restrictions were imposed. Now he is himself in a nursing home with a terminal illness.
I have a dear friend whose sister is gravely ill, and whose brother and brother-in-law are also facing serious health issues. She is unable to help any of them, even with a visit and a hug.
My mother’s brother and sister-in-law and her nieces and nephews will likely be unable to visit her for one last time, assuming Covid19 lasts longer than she does.
All of this has given our communities a base level of sadness and helplessness that can’t be good for any of us. Into the mix go the frustrations and anxieties that naturally occur during a pandemic. Is it any wonder that people feel on edge, off balance, at their limit?
The only things that can help in these situations are love, kindness and patience.
I wish the world big doses of all three.
Images by Thiago Matos and Lisa Fotios at pexels
This is the fourteenth in my series called 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.
A thirty minute ‘window visit’ with Mum (short chat through a window due to Covid-19 visiting restrictions) left me feeling quite unhappy about her condition. She was even vaguer than usual and related a ‘travel story’ about a recent holiday that had not gone well. Mum’s imaginings are mostly about interesting, intriguing or amusing situations. This one was different: about a poorly planned holiday during which she had to find her own accommodation – an empty house – and awful food. (I probably don’t need to add that the holiday was not planned by her!) She was understandably glum as a result.
And, unlike most of her ‘travel stories’, I was unable to decide on the kernel of truth or reality at its heart. Perhaps it was a general unhappiness or discontented mood that had prompted it? There was nothing in past or recent events that I could connect it to.
I’m not sure why this affected me as it did but I struggled to accept this particular ‘travel story’. What made it harder was Mum’s demeanour during my visit. There are periods in which she’ll sit gazing vaguely around with her damaged, faded eyes.
The dementia is now impacting her speech, slowing and slurring her words. Many times she will search for everyday words that have been blacked out of her memory bank. When she can’t find a suitable substitute, her sentences might trail off into nothingness, or she’s left frustrated and silenced.
My mother, a woman rarely at a loss for words, silenced by her disease.
The unsettling thing is that, while she struggles to speak or relates a story about where her mind has taken her, she looks and sounds almost – but not quite – like my mother, Doreen. Her face, her voice, her expressions and mannerisms, are all Mum’s – except that sometimes, crucial parts of her are either missing or are invisible to me.
Conversations take on a surreal quality as though I’m talking to a woman pretending to be my mother.
And if I’m honest, I have to acknowledge that these times are hard and they don’t get easier.
It’s one of the hardest aspects of dementia for family and friends of the sufferer: witnessing the gradual crumbling of the person you love. It’s as if they are wandering into the mist and in danger of being lost forever.
An irony not lost lost on me is that, when I returned home from this visit, I noticed that the forget-me-nots in the garden were beginning to bloom.
This is the thirteenth in my series called 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 the past two years my mother has been hospitalised twice due to medical problems that required treatment and different care than that available to her at her nursing home. Both occasions saw a dramatic increase in her confusion and delusions, partly due to the medical conditions she was suffering from, and partly due to the sudden change in her surroundings and routines.
This year I’ve been conscious that a good number of our elderly folk have been ending up in hospital because of Covid-19. How much of a strain that must be for the patients, especially so for those with dementia. Whisking away everything that is familiar to a person living with dementia can mean the severing of attachments that keeps that person grounded, if only marginally or sporadically, to their place in time and space.
While Mum was in hospital she scanned the ward from her bed, in a vain search for the two items that connect her to her nursing home room. The first is a colourful bed cover made of tiny patchwork pieces that she sewed herself, many years ago. The second is a small cane chair that she and her siblings bought for their father on his return from WWII service in Palestine and Ceylon (Sri Lanka). Sitting by her bed each day, I was able to reassure Mum that those precious items were still in her room at the nursing home and that she would return to them soon.
How incredibly lost a dementia sufferer in a Covid ward must feel, with no familiar things in sight, no loved ones to visit, a different routine, and staff dressed head to toe in PPE that looks a lot like a space suit.
For Mum, the most troubling thing about her time in hospital was her inability to remember or even imagine what her “home'” looked like or where it was. She asked me about it every time I visited and every time a nurse or doctor mentioned that she might be “going home” soon. Where is “home”? I don’t know where “home” is any more. She took to referring to “home” with air quotes around the word, as if it was no longer a real place but simply a concept, one that she was struggling to understand.
It got me to think about what “home” means to me and what it once meant to my mother, who can now no longer remember the many homes she has lived in over her ninety one years.
Is “home” where we feel safe? Is it the place where our loved ones are? Or a place from our past that we recall with fondness? Many adult children still refer to visits to parents, or the home they grew up in, as “going home.” Can we have two or more homes: those from our past and the one we now reside in?
For my mother, and many others like her, “home” is now an idea. I’m no longer sure if it forms part of her reality.
Tomos Roberts (‘Tomfoolery’) wrote the poem The Great Realisation and launched it on his YouTube channel in March 2020. It’s a poem of simple hope, and a plea for all of us to use the lessons and perspective of ‘2020 hindsight’ to create a better, more loving world once the global pandemic has receded.
Here’s Tomos and his brother and sister with the poem on his ‘Tomfoolery’ YouTube channel.
He has now brought his beautiful and encouraging words to book form with the addition of watercolour illustrations by Japanese artist Nomoco.
Roberts wrote The Great Realisation for his young siblings while in Covid19 lockdown. But I think the poem is for all of us. Its simplicity allows us to put aside our doubts, fears and cynicism and, perhaps just for a moment, imagine future possibilities for the whole world.
The book would be a perfect addition to school libraries and classrooms.
Other videos on the Tomfoolery YouTube channelhttps://www.probablytomfoolery.com/ are worth a visit, for a dose of what I think of as ‘sensible optimism’. I highly recommend A Tale of Two Mindsets for a few minutes of poetry that will help to deter the cynicism and doubts!
My thanks to HarperCollins Children’s Books for a copy of this wonderful book to review.
This is the twelfth 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, due to visiting restrictions at my mother’s aged care home, I had to ‘visit’ with her via Zoom. Not ideal, especially for someone with serious vision and hearing impairments, but better than nothing. At least I got to see her face and she could (more or less) hear me. We had just over thirty minutes together, and Mum began by wondering if she’d just come back from an overseas trip.
That led to talking about Covid-19 and how most international travel had been stopped since earlier this year.
To fill in a lull in the conversation, I asked, ‘If you could travel anywhere you wanted, where would you go?’ I thought I knew what her answer would be (a cruise along some famous European rivers, admiring castles and mediaeval abbeys as the boat slipped past German or French towns – a long time dream of Mum’s.)
I got it wrong. Mum thought for a while and then she surprised me.
‘Somewhere along the coastline, I think. I like looking out at the sea. I think I’d like to go to Scotland.’
I must have sounded as surprised as I felt, because Mum let out a peal of laughter.
‘I’ve never been to Scotland. I think I’d want to go somewhere I’ve never gone to before.’
This, I could understand. I also enjoy exploring new places, although old favourites can also exert their pull. But although Mum has done a respectable amount of travelling in her long life – much more, I’m sure, than she would have dreamt of as a younger woman – she has not been to any parts of Europe or the UK. Somewhere I’ve never been before did leave a fairly wide field to choose from.
So, why Scotland? I’m still not sure, but I had to agree it was a destination that left plenty of scope for our imaginations.
After discussing it a while longer, we agreed that on our trip, we would take in the Shetland Islands (inspired, for me at least, by the breathtaking scenery in the TV series Shetland. Plenty of sea scapes and coastline there for Mum.)
And, the Scottish Highlands, which would also (we hoped) include the odd castle or two.
We were both very satisfied with this itinerary.
In this time of Covid-19, when the only travel that most people can do is to dream, our conversation made us feel that we were aligned with the rest of the world. And given that it was a ‘virtual’ meeting, it seemed entirely appropriate to be planning a ‘virtual’ trip.
Whether real, virtual or imagined, travel does broaden our horizons and often teaches us new things. Mum’s travels continue and I’m happy about that.
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.