Still my mum: Learning to cope when a parent gets Alzheimer'sby Mary de Ruyter
So what can you expect, and how the heck do you cope, if a loved one is diagnosed with Alzheimer's? Mary de Ruyter wrote this story five years ago, charting much of her mother Kay's experience with Alzheimer's, and how the family managed. Kay died in January 2017, seven years after being diagnosed.
It's now estimated that by 2050, more than 170,000 Kiwis will be living with dementia (Dementia Economic Impact Report, 2016). To find out more about Alzheimers New Zealand and the support they offer, visit www.alzheimers.org.nz
Still My Mum
Mary de Ruyter on the master-class in letting go – and holding onto the light – of her mother’s descent into dementia.
I walk up to her, carrying the green woollen rug from family picnics past. “I thought you might need this,” I say, and she laughs delightedly at the sight of me, and the blanket. “I wasn’t sure if I’d be able to stay, I didn’t realise it was going to get cold,” she says. I resist saying, “You’re at an open-air movie, of course it’s going to get cold.” Instead I give her the blanket and sit, meaning to talk for a few minutes.
I end up staying, sitting under the January sky with my mother and watching Her Majesty – a fictional tale (Mum’s verdict: “twee”) of a young girl’s coming-of-age when Queen Elizabeth came to New Zealand in 1953-54. (Mum lived near Cambridge at the time and saw Liz as she passed through.) As opening-night speeches roll on, we chat quietly, pleased to be unexpectedly out together and ignoring the person tutting from behind. I take an arm’s-length photograph of us.
Today I look at that picture from 2005 and wonder what was happening in Mum’s brain. Were plaques and tangles already forming, disrupting connections between neurons as they carried messages around her brain? Were thoughts becoming slow and sludgy? Or was this one of the last years in the sun?
“By ten o’clock on Christmas morning, the sun wraps Te Parenga round like a hot oilskin, searing the back under shirts, stinging bare arms and legs.” End of the Golden Weather, Bruce Mason
Mum’s life was awash with words. She taught English, speech and drama, had a delightful dry wit, could unleash a reservoir of information about a writer if I threw a name at her. When she began struggling to express herself, we knew something was amiss.
Memory loss isn’t solely caused by dementia, though: depression, thyroid or vitamin deficiencies, diabetes and other ailments can affect memory. That’s why an Alzheimer’s diagnosis can take such a frustratingly long time – the only definitive way is by brain biopsy, so specialists must eliminate all possibilities and conduct cognitive tests.
At first we thought Mum’s word-finding problems stemmed from her weight loss, depression and stomach pain – which, in turn, we thought were caused by cancer (both her parents died from it before I was born). A battery of tests over many, many months, and we ended up in the office of a memory specialist at the local hospital. The most conclusive word he ever used was “probably”.
It was enough. A nagging feeling snowballed into a black mass of unwelcome words: damage, decline, irreversible and – the best one of all – journey. But this isn’t solely about what is lost when someone you love has Alzheimer’s. The more I learn, the more I understand how the light in each person remains. How they experience the world changes completely, but they are still here. As Richard Taylor, a retired American psychologist with younger-onset Alzheimer’s, wrote, “There has not, nor will there ever be a moment in my life when I am not a complete Human Being.” This is the most important thing of all to remember.
You will need to remember this, because if you don’t already know someone with Alzheimer’s, or one of the other 100-or-so forms of dementia, chances are you soon will. According to Alzheimers New Zealand’s Dementia Economic Impact Report 2012, there were an estimated 13,486 new cases of dementia in 2011 – almost seven times the yearly rates for breast cancer or melanoma. One in 10 (48,182) New Zealanders live with dementia, and that number will quadruple by 2050.
Each person with dementia has a story, a life, a past that brought them to where they stand.
“I must down to the seas again, to the lonely sea and the sky,
And all I ask is a tall ship, and a star to steer her by…”
Sea-Fever, John Masefield
The world, and more specifically England and Europe, always called Mum. She grew up on a Waikato farm, finishing her chores before retreating to read under a tree, encouraged by her mother. Although her father didn’t believe it was worth educating girls past high school, my grandma had other ideas. Mum went on to be the youngest student in the first intake of Hamilton Teachers College.
After a few years teaching in Tokoroa, Mum got on a plane. She was the first of her extended family to travel overseas; it was 1965, and not many women chose (or had the option of) travel before marriage. She slept in a bus shelter in Snowdonia, forded rivers in her little red Mini in France, walked around a Greek island in a “perpetual haze” thanks to retsina being cheaper than water.
To fund her travels, Mum taught speech and drama at Cobham Hall, a private girls’ school in southern England. Her friends Trish and Pat taught there, and Mum loved that their local pub was the Leather Bottle, from Dickens’ Pickwick Papers. She described it as “an ancient [Tudor] pub, heavily patronised by us in times of crisis”. They would also take their dog, a large Dalmatian named Willie Darling, there because it helped them “talk to lots of interesting men. Although two kept talking about themselves and were Conservative, so we dropped them.” She ended up happy with Dad, who owned a jewellery shop in Tokoroa.
These are the memories that, for most people, stick the longest. This relates to which areas of the brain are typically affected first.
A brief neurology 101. The brain contains more than 100 billion brain cells, called neurons. Each neuron has branches that connect it to thousands of other neurons, through chemical and electrical reactions.
When we have a thought, neurons fire an electrical impulse. The impulse shoots off at approximately 400km/h, and a neuron can fire many impulses in a second. This is how emotions are processed, memories stored, events interpreted and reacted to. Dementia occurs when physical changes hinder or destroy brain cells.
Alzheimer’s disease is the most common form of dementia, accounting for 50-60 per cent of all cases. There are currently two theories about how it develops. Both involve plaques and tangles – clumps of abnormal proteins – that sabotage the normal messenger function of brain cells. These knots disrupt communication between synapses (the junction between two cells), stopping messages moving around the brain and eventually killing brain cells. Scientists differ at over the point at which Alzheimer’s develops, and this is what drives varying strands of research today.
Dr Maurice Curtis, deputy director of the human brain bank at Auckland University’s Centre for Brain Research, says many of us have plaques in our brain – 50 per cent of people over 50 have them, in fact. It’s a continuum rather than a have-or-have-not situation. Neurons can continue working even when plaques are present, he adds: “The brain has lots of coping mechanisms.” The problem occurs when the plaques grow too large and smother the neurons.
Areas in the brain’s left and right hemispheres have different functions. The frontal lobes control executive function: planning and organising, controlling social behaviour, starting a multi-step action – such as brushing your teeth. The temporal lobes are the memory centre, and the hippocampus sits inside these lobes, transferring important information from your temporary (or working) memory into longer-term storage. Temporal lobes are usually affected first, preventing memory filing and causing one of Alzheimer’s signature traits: good recall of old memories, but not recent ones. Memories of being footloose during your OE were long ago filed in your brain, and will remain accessible far longer than the name of a recent friend.
The journalist in me was fascinated by the intricacies of the brain. The daughter in me howled with grief as I stared into the abyss and realised what would happen to my mother. Only lately have I realised that I became so caught up in grieving for what I was losing, that I didn’t see what I still had.
After Mum’s probable diagnosis in January 2010, Dad, my brother and I went to a carer education course run by Alzheimers Auckland. Every Tuesday morning for five weeks, we sat down in a room full of people whose lives had been knocked off course by a disease they didn’t see coming. My brother and I were the youngest people there by at least 15 years.
The sessions were useful, sympathetic and terrifying. An appalling decline was laid out before us, tempered with information on looking after ourselves, help we could access, and how we must adapt our communication to suit Mum. “Try and have a little laugh about it too, when you can.” A woman whose husband had Pick’s disease, a type of dementia where the sufferer loses all empathy, burst out with, “But how can I laugh about it? I cut my hand the other day and he just stared at me, like he didn’t care I was in pain. It’s horrible!” No-one could argue.
Those mornings were, and the carer-support meetings Dad now attends are, invaluable chances to share the struggles you’re facing with people who utterly understand. Because sometimes friends fall away. A few of Mum’s did – probably because they didn’t know what to say or how to engage with dementia. (It’s not difficult, really. Face the person, speak with one idea per sentence, give them time to process it, and avoid too many questions. The positive emotion of a visit remains long after the memory of it has gone. And don’t be offended if they forget your name – it’s not personal.)
Maybe they were just scared. Alzheimer’s is a potent, unpleasant reminder of decline and mortality. There are also misconceptions: only elderly people get the disease, and within a few years of developing it, you’re in full-time care, dribbling into your soup bowl.
The reality is different. Younger-onset dementia occurs before the age of 65, and accounts for around six per cent of cases. Dementia symptoms can plateau for many months; death can occur between three and more than 20 years later. In between, there can be years of living with purpose if symptoms are managed.
The phrase “while we still can” entered our family’s lexicon. We made an effort to do more together: putting memories in the bank. The irony is that Mum has since forgotten what we did. But they were good times, and yielded unexpected fruit.
One day at the cinema, watching Tim Burton’s Alice in Wonderland, Mum casually said (she’d never quite got the hang of whispering in movie theatres), “Oh, I used to teach her drama.” The screen was full of Helena Bonham Carter.
“And you tell us this now?!” I whispered sotto voce, my brother’s clanging jaw mirroring mine in the half-light. Mum smiled serenely. Later, she described her former pupil as “a natural, though she hadn’t done any drama before”.
Mum and I would also see films or classical concerts together, just us two. She had given up driving, but could still navigate through the city to the right bus stop. Still, I was nervous for her. I’d walk with her to a block away from her bus stop, say goodbye, then step back against a shop window and watch until she reached safety, knowing how vulnerable she was becoming. Hoping I could have a few more outings before I needed to walk her all the way to the bus stop. Hoping I could have my talented, independent mum for just a little while longer.
I never told her that, though. Mum took her medication, we had our family outings, and we barely talked about the emotions involved. Occasionally I would try to broach the subject of her illness with Mum, ask her how she was feeling, if she wanted to talk about anything. She would always say no, she was okay, and change the subject.
A diagnosis usually brings anger, grief and relief – the latter because the terrifying memory blanks now make sense. Some sufferers choose to talk about dementia, become advocates, dose themselves up with supplements, learn strategies to manage the symptoms. Mum chose to treat it as a nuisance, to not give dementia any more thinking power than it was already taking. I understand the quiet dignity in that, but it left her more unprepared for the moments of terror, the emotional turbulence.
People want to hold on to the old view of themselves and avoid others treating them differently. I’ve been guilty of talking about Mum’s care to other family members while Mum was in the same room, and not including her in the conversation because it would mean speaking twice as slowly. As if she isn’t feeling left out enough already – trying her best to keep up, fill in the blanks, say the right things, stop the feeling of her life unravelling.
Mum was diagnosed at 67 – though looking back, things were awry for a couple of years before that. She fell just outside the age limit for younger-onset dementia, 65. It still seems horribly young: Mum had been running book groups at the local library, volunteering at an art gallery, singing in a choir and supervising exams. But she wasn’t as young as Kate Swaffer.
Swaffer, an Australian dementia advocate, was diagnosed just before turning 50. In Wellington earlier this year, she explained in a radio interview what helped her keep her diagnosis in perspective – the fact that she had to use disability services after her diagnosis to continue her tertiary studies.
“Even though initially I hated the label ‘disabled’, it enabled me to see the symptoms of dementia as a disability, rather than as symptoms contributing to my demise,” she said. “It enabled me to focus on finding ways to manage getting on with living.”
Swaffer flies the flag for more early diagnosis – as she explains, the earlier you know, the more you can do. You can get into drug trials, and start drug treatments that might delay symptoms (yes, that’s the best medicine can do at the moment). You can make your own decisions about the philosophy of care you receive and your end-of-life wishes, before you have to rely on family. Early diagnosis means you still have the cognitive ability to set up coping strategies: memory logs, specific brain and physical exercises.
Amid the frustration and uncertainty, Swaffer exhorts, you must focus on living positively. “You are able to,” she says. “I suppose it [Alzheimer’s] is a death sentence, but so is being born.”
I profoundly regret that I didn’t do more research at the beginning, to find what people living with Alzheimer’s can still do in the first years after diagnosis. It’s likely a person has already lost the ability to work or do some of their favourite activities by the time they’re diagnosed – an insidious erosion of their confidence and enjoyment of life. Focus on activities that can still be enjoyed, to reinforce their sense of self-worth and usefulness.
A few months ago, I went to the library and took out every book I could find on Alzheimer’s. In particular, I’m Still Here talked compellingly about modifying activities that engage several parts of the brain: listening to music (this reaches people when almost nothing else can), enjoying visual art, poetry and theatre.
I suppose I thought we had more time. Not so. There have been months of stability, when Mum’s symptoms plateaued. But at times, the disease advanced ferociously. By the time I went to the library, a little more than two years after diagnosis, it was too late for most of those books.
“And Quardle oodle ardle wardle doodle
The magpies say.”
The Magpies, Denis Glover
Now, we are in the mid stages. Words mean less. Or rather, they still mean something, but often Mum can’t access them and construct a coherent sentence.
It seems particularly cruel that Mum’s words were taken first, when others keep this ability far longer. Mum works around it by using some words, accompanied by gestures and indicative noises. Understanding her is often a challenge, so I see it as an exercise in lateral thinking. I filter her sentences through recollections of past conversations, matters which worry her, old photos she’s looked at, the time of day, recent activities.
A raft of symptoms may occur with mid-stage Alzheimer’s. Wandering, sleep disturbances, sundowning (agitation at sunset), hoarding things, repeating questions or actions, shadowing (sticking closely by their primary carer), forgetting how to chew or swallow, stubbornness. Depression is extremely common. These behaviours make it easy for some to write off sufferers as being “in la-la land”. But the symptoms are firmly rooted in logic.
Hoarding reflects a feeling of trying to hold on to whatever they still can in their life. Accusations of theft are because the person doesn’t know where their watch/wallet is, so someone must have taken it. Restlessness or agitation is usually the physical expression of a frustration they cannot explain: an undiagnosed ailment, hunger or anxiety.
Mum excels at shadowing. She has no way of measuring how long it’s been since my father left the room, so after as little as 30 seconds she becomes agitated and scared, and goes to find him. The concept of time is an anchor we take for granted.
Understanding helps, but it’s still a strain to manage. Carers become exhausted (most are themselves at retirement age), external support is needed, and the cost to healthcare bites. In 2011, the total financial cost of dementia was estimated at $954.8 million.
As the disease progresses, to paraphrase I’m Still Here author John Zeisel, the sufferer is less aware of being ill, but just as aware whether they fit in socially or not. If their partner berates them for a mistake, they feel just as bad as they ever did – probably worse, because they don’t understand what they’ve done wrong.
Mum is caught in two worlds: she still understands what’s happening, but the world is becoming incomprehensible. There are large waves of fear. She frequently withdraws from conversation, perhaps preferring to stay silent rather than say something wrong. Always a perfectionist, she still berates herself for not getting things right. She worries incessantly about the safety of my brother and I, and also Dad’s health: she knows how completely she relies on him.
I don’t think any of us understand how brave Mum is doing her best to be. Every situation is “new”, because she has no memory of what went before. She isn’t able to make herself understood – as if she’s travelling in a foreign country without speaking the language.
Just because their communications and behaviours become simpler, doesn’t mean an Alzheimer’s sufferer has reverted to being a child. Infantilising erodes their dignity, and is completely misguided. The wisdom of their years still resides in their brains – it’s just increasingly difficult to access, like a huge filing cabinet with all the labels removed.
Dementia has its share of high-profile sufferers: Charlton Heston, Margaret Thatcher, Ronald Reagan, writers Iris Murdoch, Gabriel Garcia Marquez and Terry Pratchett. Pratchett, author of the phenomenally successful Discworld fantasy-satire novels, faces his future with fierce, clear-eyed honesty. In 2007 he was diagnosed with posterior cortical atrophy, a rare variant of Alzheimer’s. He’s carried on writing, doing interviews, calling for the legalisation of assisted suicide and better treatment of dementia sufferers (particularly younger-onset ones) in his native UK, and fronting the moving 2011 BBC documentary Choosing to Die.
This year Pratchett appeared at the Hay-on-Wye book festival, in conversation with his assistant Rob Wilkins. I noticed small things. Wilkins did the readings instead of Pratchett. Wilkins also did more of the talking than your average interviewer, asking longer questions that provided more information before letting Pratchett entertain.
Maybe I’m looking too closely. Still, it showed off the best of Pratchett while not dwelling on areas he might struggle with. Here was a person still doing what he loves – writing, travelling, and staying engaged. It’s a fine example of how to treat dementia as a disability rather than letting it rule your life.
“Alone we are born, and die alone
Yet see the red-gold cirrus over snow mountain shine
Upon the upland road, ride easy, stranger
Surrender to the sky your heart of anger.”
High Country Weather, James K Baxter.
Having a loved one with dementia is a master-class in letting go. Of what you hoped for your future relationship, of what you expect from them, of what you once believed really matters.
It ends up not mattering that Mum can’t remember my name sometimes – two years ago I’d never have believed that, but it’s true. She’s always happy to see me and I know she loves me. That’s more important. It may be different when she doesn’t recognise me, but I’ll tackle that when it happens.
This disease teaches you to be in the moment. Those with Alzheimer’s are acutely sensitive to non-verbal communication, picking up if you’re distracted, rushed or impatient. It invariably unsettles them. To have a calm, enjoyable interaction (each day’s Holy Grail), you must be wholly present and focused on them. In our multi-tasking, scattered world, there’s a relief in putting everything else aside.
My measure of success has changed: now it’s about making Mum laugh, calming her, coaxing her to eat more than three bites of a meal, dancing with her in the chilled-goods aisle of the supermarket to Scissor Sisters’ “Take Your Mama Out All Night”. A passing shopper looked at us like we were loons. It couldn’t have mattered less.
I cling to moments when a spark breaks through the insidious sludge in her brain. One day our family was in the lounge, talking about something of little importance. I said, “… there were less than five of them.” “Fewer than!” Mum corrected instantly – always the teacher. A moment of stunned silence, then we all burst out laughing. When she smiles, she’s still radiant.
I keep discovering pieces of Mum. An art exhibition flier from 2009, with one of her favourite poems written from memory around the edges – I read her that poem now and she comes alive, mimicking the rhythm and chiming in with a line here and there. A diary she’d started to write about her childhood; she laughed when I read passages out to her. “At the age of four, being an inquisitive child, I drank petrol from a beer bottle in the garage and was rushed to Waikato Hospital to have my stomach pumped. Mother was frightened to light a match near me for several days after.”
I wish she’d written more. I wish I could remember how Mum used to speak. I wish our family had owned a video camera. The subtle, ever-shifting grief makes me feel at once very old and very young. I’m amazed at the enormity of losing an anchor I didn’t know I relied on.
I’ve learned what marriage really means by watching Mum and Dad since the diagnosis. All Dad says is, “I married her for better or for worse.” In a birthday card to Dad two years ago, Mum wrote, “To the best husband in the world.” So much meaning the heart almost can’t hold it.
A diagnosis of dementia does not suddenly end a person’s ability to experience joy, love and laughter. Research in the field of neural plasticity (how the brain can change and regenerate) indicates those with Alzheimer’s are still emotionally able to learn and care. Combating stigma is an uphill battle faced by everyone touched by Alzheimer’s. Pratchett nails it: “When you have cancer, you’re a brave battler. When you have Alzheimer’s, you’re an old fart.”
This image isn’t helped by the reality of aged-care facilities where they deal with incontinence, severe loss and near-total dependence. Walking into one of those places with a view to sending your mother there, even if only overnight, is grim – I wince at this brutal accuracy, but I’ve never been in a room with so many demented people before. Even though she’s looked after by generous, caring staff, Mum still doesn’t like the prospect of going to the place we chose for respite stays. I feel guilty every time I’m at home and she’s there.
I suspect guilt hangs over most family members. I’m only there some of the time – Dad carries most of the weight. Am I doing my best for her? Does any carer ever feel like they do enough? Primary carers (usually the spouse) face a melee of grief, impatience, exhaustion, frustration and constant adjustment.
We keep going. We tell Mum we love her, distract her, try to keep her engaged in the world. Going out to dinner is trickier, but we still do it. “Are you OK?” I asked Mum as we stepped out of one restaurant into a cold June night. “Good as gold,” she said, smiling at me. And in that moment, everything was.
“It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.”
Invictus, W.E. Henley.
You cannot control whether or not you get Alzheimer’s, but you can help guard against it. Broadly speaking, what’s good for your heart is good for your head.
So, the pillars of a healthy life stand. Diet: low in saturated fats and sugars, high in fish oils and all the other good stuff. Enough restful sleep is incredibly important for brain repair. Exercise, watch your blood pressure, minimise stress, maintain social contact, and keep using your brain through puzzles, reading, playing a musical instrument and so on. Carrying out an action or learning a fact more than one way creates more than one neural pathway in the brain. So if one connection is disrupted, you still have another way to get to that information.
Talking about dementia is imperative. Once, cancer was the word said in hushed tones. Now, people rally round. We need the same for dementia – we need to push for earlier diagnosis, acknowledge the emotional complexity and make life better for those affected.
Do I worry about developing Alzheimer’s? I’ve surprised myself with my fatalism: that particular genetic die has already been cast. Genetics can play a part, but having a parent or family member with Alzheimer’s doesn’t necessarily mean you’ll get it. I note new research, but don’t count on it. My plan is to live as well as I can and let life unfold.
Death is part of life. In his acclaimed BBC TV series The Human Body, Robert Winston makes the salient point that cells in our body are constantly dying as our life continues, at the astonishing rate of approximately one million cells per hour. Even becoming human required cell death: when we were in the womb, our hand formed first as a mass of cells – then some self-destructed to take the shape of a hand.
If life places the particular challenge of dementia in your path, I can tell you this. Yes, you are suffering a loss. But you still have more than you think, especially in the early stages. Read as much as you can stomach, then get on with enjoying your loved one. There are major, often heartbreaking adjustments ahead, but there is also much joy to be had. Don’t let it pass you by.
Should I Be Worried?
Many people wonder whether a memory lapse is just that, or something more serious. Alzheimers New Zealand provides this general guide to differentiate between forgetfulness and memory loss. Even if you have symptoms of memory loss, other health matters may be the cause. If you’re concerned, see your doctor.
The Stats (as of 2012)
- Dementia cases are set to double every 20 years: 74,821 by 2026, and 147,359 by 2050*.
- Only 60 per cent of people in countries like New Zealand have been formally diagnosed or documented**.
- An estimated 36 million people worldwide live with a variant of Alzheimer’s. It’s projected to grow to 115 million by 2050***.
- The total financial cost of dementia was estimated at $954.8 million, and the value of healthy life lost (either through lost quality of life or premature death) at a staggering $12.4 billion*** .
- Government, carers and taxpayers shelled out $4.04 million for pharmaceuticals***.
- Delaying the entry of people with dementia into residential aged care by three months could save $62.3 million*.
*Dementia Economic Impact Report 2008, Alzheimers New Zealand.
**World Alzheimers Report 2011.
***World Alzheimers Report 2009.
****Dementia Economic Impact Report 2012, Alzheimers New Zealand.
Alzheimers NZ: Find links to local branches and support services, a library, advice on diagnosis and care, and how to donate.
Centre for Brain Research: Neuroscience research partnership between University of Auckland scientists, clinicians, and community NGOs. Volunteer for clinical trials, donate or attend their annual Brain Day.
There are many books on dementia – I found the following invaluable. Still Alice, by Lisa Genova; I’m Still Here, by John Zeisel; The 36-Hour Day, by Nancy L Mace and Peter V Rabins; Contented Dementia, by Oliver James.
This was published in the October 2012 issue of North & South.
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