This is the twenty-first 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.
Dementia is sometimes referred to as ‘the long goodbye.’ It is an apt description for the drawn out grief someone experiences as their loved one transforms from an adult who is competent in all the business of life, to a dependent who needs help with the simplest of actions. This is the process of dying, spread out over months and years.
Thankfully, Mum still knows me when I walk into her room and say my name. The smile that appears on her face lights her whole room. It could light a city. Often it is accompanied by a shriek of joy; sometimes a tear or two. Then she settles back into her bed or recliner, grasping my hand. Of late, my visits are mainly about watching Mum as she dozes. I hold her hand or her arm. When I get up to fetch her a drink, or speak to a staff member, and once again put my hand on hers, she gives a faint smile and murmurs, ‘That’s better. Softer.’ I’m not entirely sure what she means (is my touch softer than the nurses’? or is she expressing pleasure at any touch?) It hardly matters. I just know she enjoys me touching her and that’s what I take from the interchange.
It’s painful – agonising – to observe Mum struggle to sip and swallow a mouthful of water. Some day she can barely hold her head up. But she is calmer now than she was in recent months. I imagine that her inner self is giving up the struggle, relaxing into her helplessness. She is not happy, I’m sure. But neither, I think, is she actually unhappy. She is floating on a sea of something akin to oblivion, small wavelets of time lapping at her, rousing her occasionally to connect with whoever enters her room or speaks to her.
The small expressions of joy at seeing someone she knows and loves have to be enough; indicators that my visits mean something. This morning, as I left her side, I kissed her forehead and told her,’I love you, Mum.’ She smiled back and I knew she was trying to say ‘I love you, too.’ I knew it; even though her speech is now impaired so much that getting even the simplest sentence out is a struggle. Her face, her smile, told me the rest.
This is the twentieth 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.
My phone conversation with Mum today began:
‘Morning, Mum. I hope you have sunshine through your window today?’ ‘
It’s a lovely day and I’m waiting for a lift to Windsor.’
‘Oh? Where are you off to?’
‘We’ve got a play-off match today. The car will be here soon to pick me up, so I can’t chat long.’
I knew then that Mum’s mind was re-visiting her many years of involvement in the sport of lawn bowls. If you know Doreen, or have read my earlier Travels With my Mother posts, you will know that lawn bowls is no longer a realistic option for her. This post is by way of tribute to that aspect of Mum’s life, post ‘retirement’ from her busy years as mother, manager of a fruit orchard and shop, contributor to her children’s schools and to her local community.
Amusingly, when a family friend first suggested Mum and Dad try lawn bowls, she was indignant.
‘I’m not joining those fuddy-duddies!’ she’d exclaimed. ‘Those awful long white skirts and thick stockings they wear.’
But try it she eventually did, and enjoyed it from the outset. She and Dad joined the Kurrajong Heights Bowling Club at first as they still lived in Bilpin, then when they made the move to Richmond they became stalwarts of the Richmond Memorial Bowling Club.
Luckily for Mum, the uniform requirements did ease over the years, allowing ladies to wear white slacks in winter, and eventually softening into a lavender polo shirt and knee length skirt for summer.
As was always Mum’s style, she entered her new pastime with determination and gusto and began to excel, winning championships, as well as playing socially, and travelling for weekend bowls competitions around the state.
Ever the ‘organiser’, she also took on elected positions in her club and the wider Ladies Bowls organisation. She was a selector, secretary, president. She travelled by train to Sydney for training and exams to become both umpire and coach. She helped run the regular fund raising mornings to raise money for the local branch of the charity Legacy. Presidents’ Days and Veterans’ Days were conducted by a band of busy women, including my mother.
Later in her bowling career, Mum bemoaned the leaching away of the community feel of her local club. Some of the younger members, she said, regarded it as nothing more than a sport, an outlet. Less important to them were those activities of the club that were precious to the older women: community involvement and service to others.
Veterans’ Day, for example, was a long standing tradition where older bowlers, particularly those who could no longer play regularly, were honoured at a day of social games and lunch. Those who needed it were picked up and brought to the club for the day. Mum was one of those women who could often be seen driving an elderly lady to the special day. Sadly, in Mum’s view, the importance of these traditions began to fade over time.
In the 1990’s Mum was proud to be recognised at a presentation night, along with lifetime friend and fellow bowler Gwen Cooper, for her contribution to the Hawkesbury district’s sporting community. Her organisational skills and commitment brought a great deal to the bowling scene locally and across NSW.
So I heard with pleasure her plan to go bowling again this morning, and I hoped that in her mind the green stretched, smooth and inviting, before her.
This is the nineteenth 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 an appropriate end to a shocker year, my husband and I came down with a severe gastric flu, three days before Christmas. Our Christmas plans had been made with a wish and a prayer – who knew if any of it would eventuate, with new Covid outbreaks triggering fresh restrictions in some parts of Australia.
Turns out we were right to be sceptical.
We had to cancel our planned Christmas Eve lunch with Mum at an (open-air) cafe. That was to have been her Christmas celebration with her family, but we couldn’t risk her getting the illness we’d just had. There was nothing for it but to postpone.
When I called Mum to break the news, her response was very much in line with her usual pragmatism and easy-going nature: ‘Of course you can’t come, love. I wish I was there to do something for you both.’
She then went on to say, ‘I had a visit from my little daughter yesterday. I took her to visit friends at Bondi. She loves the water so she was excited to go to the beach. She had a lovely time.‘
I admit that, along with relief that Mum didn’t seem too upset by the postponement of our modest Christmas celebration, there was a pang. Who was the little daughter? Was it me, or one of my sisters, going back half a century? Or a new daughter conjured from Mum’s imagination?
It was strange, the sensation of being supplanted by a shadowy memory or a sibling who might not even exist.
Relief won out, of course. I could be happy for Mum’s ability to travel where and with whom she pleased, despite her imprisonment in a body and brain in a long, slow decline.
At least in her mind she was able to participate in a quintessential Aussie Christmas experience – a trip to the beach – with a little daughter who I may or may not have met.
We’ll do our planned cafe lunch a bit later, perhaps in time to welcome in what will, hopefully, be a better year for all.
Images by Olenka Sergienko & João Vítor Heinrichs at Pexels.
This is the eighteenth 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 I showed Mum several of her old school reports from high schools she attended during WWII, when her father was away on overseas service with the Army. There was a clue on two of them which told me where Mum was living and what was happening in her life at that time.
‘See here, Mum, where the parent’s signature goes?’ I pointed at the faded handwriting. ‘These two were signed by your grandmother. Your mum had died by this time and you were living with her mother.’
Mum’s mother died in 1942 from a long illness and her three children were sent to live with different families because their father was not granted permission to return home from active service.
Mum showed no recognition at her grandmother’s name or even at what must have been a traumatic time in her young life.
I tried again: ‘Your grandmother was married to Bob then; her second husband. You always said you liked Bob; though not your grandmother so much. But you really liked Bob.’
At that name, a warm smile lit up Mum’s face. ‘Bob was kind,’ she nodded.
I said, ‘Do you remember why you didn’t like your grandma?’
Mum stared into space for a while before shaking her head. ‘I don’t remember her. Just Bob. He was lovely.’
This exchange left me wondering: was this another of dementia’s strange gifts: the expunging of difficult times and people, leaving only the good? Perhaps it was a transient phase of the disease. If so, at least it offered my mother the opportunity to recall someone whom she had loved and who had offered her a kindly presence at a difficult time.
If only we could all remember the good a little more and leave behind those painful, unwanted or distressing recollections, at least for a time.
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.
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.