Practical advice: ‘Before Dementia’ by Dr Kate Gregorevic
Dementia hit the headlines this week, having achieved the dubious honour of becoming the biggest cause of death in Australia, surpassing heart disease. This guide to what we can do to prevent, prepare, cope and understand the illness is very timely.
Dr Kate Gregorevic is a geriatrician who works at a Melbourne hospital, and the book is peppered with real life anecdotes from her research and practice.
Twenty questions frame the book’s structure and content, including:
What is dementia and are you at risk?
What are the symptoms?
What causes Alzheimer’s?
What is life like for a person living with dementia?
Do people with dementia have the capacity to make decisions?
Can improving diet help to avoid dementia?
How do we live well with dementia?
Most people have been touched by dementia in some way: we have a loved one who lives with the disease, or we know a workmate, neighbour or friend who has been diagnosed, or who cares for someone who has been. So, these very practical questions and the wealth of information included are welcome and useful guides to the illness and what we can expect as it progresses.
There were sections that resonated strongly with me after watching my mother’s decline with the condition. For example, the insidious way it often begins, creeping up slowly at first, often confused with ‘normal’ age-related memory loss:
The onset of dementia is so insidious that it often takes something really obvious, an example of memory loss that is so stark, so unforgiving, that it is impossible to look away. This is often when the reframing begins, when all the little things that were so small in themselves start to coalesce.Before Dementia pp23-24
Other points that especially resonated with me because of my own experience included the nature and role of delirium, the phenomena known as ‘sundowning’, the creation of false memories, and the sometimes-catastrophic effect of hospital admissions,
There is a fair bit of technical information in the chapters to do with the causes and types of dementia. I admit I glazed over a little here. However, I appreciated the author’s desire to translate the latest thinking and discoveries in what is still a contested field, into language that can be read by a non-medical person.
Ethical challenges are presented openly, and it is up to each reader to decide where they stand on issues such as the capacity of a person with dementia to make decisions about their future care and living arrangements, consent for sexual activity, the right to autonomy and independence. A point that strikes me as a tricky but interesting one, is what Dr Kate terms the ‘dignity of risk’:
Living well with dementia means accepting the dignity of risk. Many people with dementia will be able to live independent lives, but they may not be perfectly safe.Before Dementia p295
I appreciated the plea made in this book for adequate funding for aged care services, for recognition of the disadvantages faced in all areas of life by Aboriginal and Torres Strait Islanders in Australia, and for the value of putting into place as many protective measures as possible as early as possible: improved diet, regular exercise, giving up smoking and excessive alcohol consumption, social and cognitive activity.
If I were a patient or a family member, and lucky enough to be a patient of Dr Kate, I am sure that I would value her humanist and person-centred approach to living well with dementia.
While I’m certain that most of us would much prefer NOT to have to think about this disease, and just hope that we or our loved ones won’t ever have to deal with it, I can highly recommend this book. It tackles a difficult subject in a helpful, practical way that removes the ‘overwhelm’ and allows the reader to learn from the experts.
Before Dementia is published by HarperCollins in February 2023.
My thanks to the publisher for a review copy.
Travels with my mother XXIV: Postscript
This is the twenty-fourth in my Travels with my Mother series. If you’ve not read earlier posts, this is the first one in the series for context.
Grief is a strange companion. My mother died in late May. We had the funeral—thankfully with next to no restrictions—and then the Delta variant of Covid19 began to make its presence known in cities and even some regional areas around Australia.
It has served, at times, as something of a distraction. The routines of the daily briefing from authorities on latest case numbers and new public health orders. Remembering to take a mask and do QR check-ins whenever I leave home. In reality, leaving home rarely, other than for a daily walk. Attempting to keep exercise levels up, along with a healthy diet. Sometimes, resisting the urge to open a bottle of red wine and / or a chocolate bar takes a lot of focus. Keeping busy; projects that require considerable time and attention now absorb my daylight hours.
But other, older, routines still keep me company. Around 9.30 or 10 am each day, my hand wants to reach for my phone. That was the time I usually made my morning phone call to Mum. Mornings were best: by the afternoon her mind was fuzzier and she was tired. They were quick calls because Mum could no longer sustain a long conversation, apart from occasions when she would venture out on one of her ‘travel stories.’
I remember quickly, of course. Mum is no longer there. And the space in my morning is filled with other tasks and activities. Sort of. That daily connection, while meant to nurture Mum and assure her she was not forgotten, was possibly just as important to me.
My awareness of that Mum-shaped gap in the world is very real and, while the pain is not acute now, it lingers. Despite my knowing and understanding that her death was, as some told me, a ‘blessing.’ She had so little quality of life and comfort in her last weeks and months that I often wished she could just quietly sleep and not wake again. That’s almost what happened and for that I am grateful.
There is much to be grateful for. Mum did not die from Covid, stuck in a Covid ward where her family could not reach her. She is no longer in a locked down situation in her nursing home, with no visitors or (at best) ‘window visits’ with her family. She does not have to experience the bewilderment brought about by the upheaval caused by this latest wave of Covid. I feel for every older person and their family going through these this right now.
I am very glad about all of these things. But still I wish, sometimes, that Mum and I could go on one last travel together.
Photos by Jess Bailey Designs and James Wheeler from Pexels
Amusing, troubling, insightful, and occasionally annoying: ‘Should We Stay or Should We Go’ by Lionel Shriver
Lionel Shriver (US born, now based in the UK) is a controversial author. She picks up on contemporary social themes and preoccupations and interrogates them with razor sharp wit, in the process holding up a mirror that reflects modern society back to itself, mostly with less than flattering results.
Kay Wilkinson and her husband Cyril are middle class Londoners with respected careers in the NHS – she as a nurse and he a doctor. When in their fifties, she and her husband are both appalled at the possibility that they will suffer from dementia (as both Kay’s parents did before they died), or become disabled by a stroke or another debilitating health condition. So they make a pact that when they have both turned eighty they will suicide together. In the discussion leading to this decision, Kay says:
Everyone thinks they’re the exception. Everyone looks at what happens to old people and vows that it will never happen to them… They value quality of life. Somehow they’ll do something so their ageing will proceed with dignity... Then it turns out that, lo and behold, they’re exactly like everyone else! And they fall apart like everyone else, and finish out the miserable end of their lives like everyone else…Should we stay or should we go p12-13
Okay, so some of these arguments touch on tender points for me just now. My mother is 92 and suffers from dementia and several other long term illnesses, and there have been plenty of times when my best wish for her is to close her eyes peacefully in bed and not wake again. Also, I have had discussions with friends and family about voluntary assisted dying which sounded very like another of the arguments put forward in the novel, this one by Cyril:
You said everyone imagines they’re exceptions and they’ll surely arrange an early and merciful exit before submitting to the intolerable, And then they do submit to the intolerable. That’s because, in order to retain agency over your own end of life, you have to be willing to give up some small portion of it that’s not particularly rubbish. Otherwise, you go downhill, doctors and relatives take over, and you’re apt to lose the very part of yourself that makes judgements and takes action. We have a very narrow window in which to exercise control.Should we stay or should we go p30
So, the couple seem united and sure of their decision. And then, as the book cover blurb says: they turn eighty.
What follows is a twisting, circular, whirlwind of a time travel novel which explores and expounds on multiple final outcomes for Kay and Cyril, and indeed the whole nation and humanity more generally. The scenarios played out are by turns horrific, fanciful, eccentric, far-fetched, almost believable, idealistic or depressing. Scenes, sentences, characters appear and re-appear in different guises and surroundings as ‘sliding door moments’ take the characters one way and then another. It’s almost a grown-up ‘choose your own adventure’ story. I admit to feeling breathless a few times as I was carried away on the author’s imaginative tide of possible outcomes.
There are plenty of darkly funny moments, and it’s hard not to admire the wicked ways in which the author has made national and global preoccupations at the time of writing – Brexit, climate change, ageing populations, the Covid19 pandemic – symbolic of so much that Kay and Cyril are grappling with.
Should We Stay or Should We Go is a clever novel that skewers and taunts as much as it poses serious questions. There are laugh-out-loud moments but a word of warning: if you are already by nature or mood pessimistic, worried about your own future and old age, or dealing with themes of death and illness in your own life: be careful. This novel could either shake you up with a good belly laugh at its audacity, or leave you deeper in the gloom.
Should We Stay or Should We Go is published by The Borough Press, an imprint of HarperCollins Publishers, in June 2021.
My thanks to the publishers for a copy to read and review.
Travels with my mother XXIII: The final travel story
This is the twenty third and final post in the Travels with my mother series. If you’ve not read the earlier posts you may wish to go to the first one as it gives the context for the series.
Thank you to all who have been following along on with Mum and I in the last years of her life. Her travel story came to a close a week ago when she died on Saturday evening. She had lived for 92 years. I think the best way to complete her story and pay tribute to the long and remarkable journey she had taken, is to post the eulogy I gave at her funeral yesterday (Friday 4 June 2021).
Here it is:
Doreen was born in March 1929, on the precipice of the Great Depression. She was the eldest of three children born to Bertha and Harold.
One of Doreen’s earliest memories was perching on the back of a borrowed truck with her father; her two siblings in the front with their mother and the driver. They were being evicted—like so many Australians at that terrible time, they could no longer make their rent. They were offered a small cottage on a plot of land at controlled rent in a new ‘charity’ estate in Sydney’s southwest, now the suburb of Hammondville.
In 1940 Harold enlisted in the army. He lied about his age, dropping it by ten years. The desperate act of a father who needed a steady income to support his family. He was on a troop ship from Palestine to Singapore when news of Singapore’s fall to the Japanese shocked the world. His ship was sent to Sri Lanka instead, where he saw out the remainder of the war.
Tragically, his wife became very ill and died while Harold was away. Doreen, aged 13, and her two siblings were considered too young to manage on their own and the three children were split up to live with different relatives. Doreen took from these years a fierce sense of independence, a belief that being a girl or woman should not stop her from doing the things she needed to do, a longing for family life, and a steely determination to make the best of things.
Still in her teens, Doreen worked as a seamstress at a Surry Hills clothing factory, and moved in with workmate Norma , who was to become her closest and lifelong friend and her sister-in-law. She experienced a brief period of carefree youth: sewing her own frocks, dressing up for an occasional night out with her girlfriends, and beach picnics.
It was Norma who introduced her to Doug, the brother of the man Norma was engaged to marry.
Harold returned home from the war and Doreen, her brother and sister moved back to live with their father for a while. Doreen adored her father and they had a close bond.
When Doug and Doreen married in October 1951, she made her own dress. No ivory satin or bridal veils for Doreen: her wedding outfit was a knee length frock in pale blue with a matching hat. A modest outfit for a very modest wedding, but also I think, in line with Doreen’s personality: pushing a little against the norms and expectations for women at the time.
Doug and Doreen began married life with next to nothing. They moved to Bilpin for Doug to work at the service station there, with baby Karen and toddler Kris, renting an old workman’s cottage on Ghost Hill Road.
Doreen, raised in the suburbs, now learnt to live in the country, drive a car, and be a mother, essentially through determination and gritted teeth. She ran the little café next door—known then as ‘Midways’. I came along in 1960 and six years later, we moved to an orchard and farmhouse at ‘Glenara’, outside the village. Now Doreen was also an orchardist who baked apple pies, made jams and jellies, and sold produce at the roadside fruit shop. In her ‘spare’ time she knitted and sewed clothing for her family, participated in community events and her children’s schools. Life was busy.
For both Doug and Doreen, the little family they created became the all-important crux of life; the thing they worked for, struggled and sacrificed for. Neither had experienced stability in their own childhoods and they went all out to provide it for their daughters. Both had been denied a full education and it was important to them that we had that opportunity. They could rarely afford things that were new, not home-made or hand-me-down. But if any of us needed them, both Doreen and Doug were there. No lives go 100% to plan and through our ups and downs, our tragedies, disasters, joys and achievements, we all had reason to feel blessed to have those two as our parents.
Glenara was eventually sold and we moved to a new house, designed and built by Doug and Doreen, in the Bilpin village. This was the first new house that Doreen had ever lived in and she’d made sure to include mod-cons like a dishwasher and a second toilet. After years of washing dishes in the café and home, and an outside toilet, I think she was entitled, don’t you?
Doreen was now ‘retired’, which meant that she had more time for community events and also a chance to pursue her own interests. She took up pottery and later, lawn bowling. In typical Doreen style, she threw herself into such ventures wholeheartedly. She had a stellar bowling career, winning championships, becoming club President at Richmond, coach, umpire and selector.
Her interest in genealogy, at a time before anything was on line, resulted in some fantastic work on our family history, tracing back to six convicts (and some free settlers) in colonial times.
During those years she also enjoyed some travel, something her keen interest in history and geography suited her to. She and Doug went on a cruise to Fiji and Vanuatu, visited north Queensland and the Barrier Reef, and made a trip by Greyhound Bus across the western parts of the USA and Canada a few years after that. She travelled the Murray River on a paddleboat, took the ferry to Tasmania and camper-vanned through much of NSW. They took their camper to a hippie community in the bush near Glen Innes, to visit Karen who lived there in the 1980’s. When I lived for a short time on a remote island in the Torres Strait in far north Queensland, Mum and Dad began making plans to visit me there.
She loved reading and we have always been grateful that our parents passed on their love and respect for books to us. 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. She was also an avid movie goer; I have very fond memories of movie outings and watching classic movies together on TV, especially seeing her all-time favourite movie, Gone with the Wind, at least several times together. We enjoyed many drama productions at the Joan in Penrith. These are all precious memories.
Tragedy struck in 1994 when Karen was diagnosed with an untreatable brain cancer, and died three months later, aged 39. It was a shocking event that hit hard; Doreen coped by providing as much physical help and support as she could to her daughter and to Karen’s carers, and being the family bedrock. We stayed in a Brisbane apartment during the two weeks that Karen was in hospital there; I remember one night getting up and finding Mum, sitting in the lounge room, trying to smother her sobs with a pillow so as not to wake anyone.
She was again a refuge of warmth and care when I landed on their doorstep, essentially homeless and penniless, with baby Dakathirr in my arms. We stayed with them for eighteen months and experienced the no-nonsense practical and emotional support that Doreen gave so generously.
Doreen was an affectionate grandmother to her two grandsons, Alex and Dux. She loved her verbal spars with Andy, her son-in-law, and always liked to believe she had the upper hand. She became step-grandmother to David and Connor, and later Great grandmother to Liam and Aubrey.
As Doug’s health began to fail, Doreen took on the role of his carer. After his death in 2016, her activities and horizons became increasingly limited by deteriorating eyesight, ongoing mobility problems and dementia. Thankfully, she was still delighted when one of us walked through the door of her nursing home room.
As many mothers do, Doreen had some oft-quoted aphorisms to guide her daughters through life. The one I most remember (and try to live by, not always successfully) is:
Edith Piaf’s famous song, No Regrets, sums up Doreen’s attitude to life perfectly.
We can forget, as we watch our parents age and witness the physical and mental ravages that time can inflict, that they were once robust young people with full lives ahead of them. Their joys, passions and talents can fade over time and become invisible.
Looking back over old photos, I was reminded of Mum’s fun-loving nature: she loved to dress up for events with her bowling club, for example; loved an occasional weekend away at a bowling competition with ‘the girls’; loved being at the beach with her grandsons on precious family holidays. She had as much fun on our day in Disneyland as I did. She and Dad taught us how to play cards and board games and it was an enduring pleasure of our times together to get out the Canasta cards or Pictionary game – a tradition which continued on with the grandkids.
She was also someone who did not always ‘toe the line’: as evidenced by some of her less conventional choices and her determination that her daughters would have every opportunity in life, including ones that had been denied her due to poverty, family circumstance, or the fact that she was female.
Doreen’s early life was hard, and the untimely death of her own mother meant that she entered married life and motherhood with little support and guidance. She learnt it all as she went along. None of that stopped her from being a committed, energetic mother, active in her girls’ lives and education. As a grandmother she carried on in the same vein, until frailty and infirmity got in the way.
I like to think that Doreen has been a role model for me in my own life, and my experience of motherhood and now, grandmother -hood. It’s certainly something that I have aimed for.
I am heartbroken that we have lost Doreen from our lives. Mixed with the sorrow is the knowledge that her last years were not happy or easy ones and that she no longer has to endure the difficulties of old age.
I believe that those who die are never really gone if we remember them.
I’d like us all to remember Doreen as she was before her illness: determined, smart, energetic and loving. It’s the best tribute we can pay to her.
Travels With my Mother XXII: Go on, make that call
This is the twenty-second 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 week my sister and I made the decision to disconnect Mum’s landline in her nursing home. Since moving into her new room there, she has forgotten how to answer the phone, or perhaps no longer registers the ringing as an incoming call. On top of that, she is rarely positioned in her chair or bed within easy reach of the handset. Paying $35 a month for a service that is no longer being used seemed wasteful and pointless. So, I closed the account and the line was disconnected.
For some years now, I have spoken to my mother as close to every day as was possible: either in person when I visited, or a morning phone call. In the last couple of years the calls had by necessity got shorter: Mum’s span of attention on the phone diminished, as did her inclination to chat on. Prior to that, our conversations could be amusing, bewildering, or sad, depending on her mood on the day, or which particular fanciful byway her mind took us down.
I will admit that some days, making the call was harder than others. I’d have to search for a topic of conversation: when an elderly person’s world has shrunk to the four walls of a room and they can no longer remember what happened an hour ago, this is understandable. I would try to talk about things I was doing, about the kids and grandkids – Covid lockdowns last year made that harder, too, because even for younger and healthier people, physical worlds shrank somewhat. And at times I’d be seized by a sense of guilt: was it fair for me to chat on about my activities, my life, when my mother had so little in her own? Irrational, I know, but still.
Yet, over the past few days since the disconnection of Mum’s phone, I’ve gone to make my customary call and stopped short, remembering that it was no longer a possibility. I’ve had moments of thinking, That’s something I can talk to Mum about when I call her, only to remember: no phone line.
So, if there’s someone in your world with whom you have not connected for a while – parent, sibling, aunt or uncle, old friend or new – maybe it’s time to reconnect? Pick up the phone, write a letter or an email, send a WhatsApp or Facebook message. Not only do we not know what a difference that contact can make in someone’s life, or in our own; we can absolutely never know when it will no longer be an option. Or indeed, what we’ll miss. Go on, make the call!
Photos by Min An & Sound On at pexels
Travels with my mother XVIII: Remembering the good
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.
Travels with my mother XVII: Living in the moment
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
Travels with my mother XVI: Last Things
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
Travels with my mother XV: Fractured
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
Travels with my mother XIV: Lost in the mist
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.