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.
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.
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 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 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.