Say the Unsayable

The world is rightly becoming more aware of the needs of people with dementia, and “living well with dementia” is a vital aspiration; but it seems to me that the drive to promote this undoubtedly worthwhile concept can sometimes deny the harsh reality for family carers. 

While it is possible to live well with dementia in the earlier stages and may remain so for some, for others the later stages are a monumental daily challenge, compounded by social and political pressure on family carers to maintain a brave face of positive thinking, “compassionate communication”, and willing self-sacrifice. 

We do them a disservice to pretend otherwise and thus to engender guilt for justifiably feeling overwhelmed, exhausted, angry, resentful, lonely, trapped, scared, and just plain heartbroken at the gradual loss of both the person they care for and the life they shared.  Professionals choose to enter the world of dementia and can likewise choose to leave.  Those whose families are struck by the disease have no such choice.  When dementia comes knocking, it won’t take no for an answer.

Lack of insight – the inability of a person with dementia to recognise their own needs and limitations – is the distinguishing feature that can make this type of caring particularly hard. Outsiders may think of “care” as a series of tasks.  Well, tasks are bearable; you can plan for them and factor them into your life.  I would be happy to undertake any number of tasks for my mum.

What I struggled with was the lack of co-operation or acknowledgement from her (often obstructiveness and fierce antagonism), which meant that I effectively had to go “undercover” to meet her care needs: fearfully rushing to change bed-linen when she had dozed off for five minutes downstairs; putting her clothes in the washing machine when she had gone to bed and getting them in and out of the tumble dryer before she was up the next morning; hastily clearing the fridge of rotting food and replacing it with fresh when she wasn’t looking; calling the doctor, hairdresser, and chiropodist secretly to arrange appointments for her and inveigling her into the car on some pretext; asking the GP for a referral to social services behind her back; hiring a carer to pose as a “health visitor” to check on her in my absence and ensure that she had a meal; and ultimately, when all else became inadequate, arranging a residential care place without her knowledge.  The worst thing I have ever had to do.

It was this suffocating, relentlessly stressful covertness  - not the tasks themselves - that wore me down over the years, together with distressing changes in mum's personality that distorted the previous dynamics of our close relationship.  It is our instinct to protect and nurture those we love.  I chose to look after my mum, in that I would always naturally do whatever I could to keep her safe and well and to make her life happy and fulfilled. But the gradual and mysterious progress of her dementia over the best part of 20 years meant that there was never a conscious point at which I chose to give up my own life in the process.  It just happened – and she has no idea.

In November 2013 I attended the annual meeting of the Dementia Action Alliance in London, at which the Carers' Call to Action* was launched.  One of the speakers was Ray Carver, who talked with admirable candour about the impact of her husband’s young onset dementia.  Like my mum, he remained in denial, and she had the responsibility of all decisions and organisation; like me, she found her whole life subsumed, while he remained oblivious, believing himself to be independent. Formerly a nurse, Ray confessed that her professional background still left her unprepared for the intense emotional trauma of living with dementia.  “I was a confident person”, she said. “Now I don’t know who I am.  I've lost myself.”  I’m sure many family carers will identify with that.

As a freelance scriptwriter in TV drama, I naively thought that my ability to work from anywhere on a laptop would be the solution to mum’s increasing needs.  But I discovered that high stress 24/7 soap writing is not compatible with high stress 24/7 dementia crises (not many jobs are!); and as sole carer with mum necessarily my first priority, I simply fell out of circulation. It wasn’t my decision, and now that mum is in residential care  - the thing I most sought to avoid - I have to pick up the pieces and start again, having lost the most productive years of my career (and personal life).

What seems incredible to me now is how long I soldiered on without knowing or being able to say that my mother had dementia. Although friends noticed that she repeated herself and sometimes mixed up appointments or got confused with money, she functioned reasonably well on a public level to those who would see her for maybe an hour or two at a time; only I was fully aware of the more disturbing symptoms of paranoia, obsessive behaviour, and cognitive malfunction, and had no-one with whom to discuss them and gain some perspective.

By 2007 and again in 2010, I was desperate enough to seek counselling for the utter despair I felt at the all-consuming and apparently manipulative drama our life had become. With no diagnosis of dementia, mum in denial, and no third party to mediate, I came to view these problems as “relationship issues” requiring “boundaries” to preserve my mental and physical health.

Indeed, with hindsight I can see that some of the more extreme paranoid symptoms of dementia can induce behaviours we might otherwise consider to be abusive: intense jealousy, possessiveness, and separation anxiety, leading to the carer’s effective imprisonment in the home and isolation from other family and friends; false accusations of wrong-doing that undermine confidence; round-the-clock harassment by phone, and sleep deprivation; denial of the carer’s own needs and objective reality, leading to a negation of identity.  Ray Carver told how frightened she had been by her husband's out-of-character aggression.

Of course now I understand that my mum couldn’t help these terrible behaviours – they were a product of her confusion and fear, caused by organic changes in her brain.  But for a long time, this was far from clear. 

If professionals ever came to the house, she would appear “normal” for their ten or twenty minute visit – articulate and sociable - and would insist that she was fine, did everything herself, had no carer. She totally believed this herself, and although much of what she said was untrue, they had no way of knowing and would go away satisfied that she was “coping”, when in fact I was on my knees.  Consequently, for a very long time, I did not identify as a carer even to myself, let alone to the authorities.

It took crisis situations to prove to me that this wasn’t a relationship problem – my mum had an irreversible, degenerative illness that no amount of love, effort, or accommodation on my part could solve.  I finally realised that what I needed was not therapy to learn how to modify my own (perfectly natural) distress response to her behaviour, but practical help to support us both with her debilitating disease.  That meant breaking silence.

So please, if any of this is familiar to you from our own experience, don’t try to weather it alone.  Don’t let the years slip by until both you and the person you care for have become invisible.  Take courage and ask for help now. 

And if you are a friend, neighbour, relative, or professional who suspects that someone you know may be living under these conditions, reach out and speak the first word.  They may not initially thank you for breaching that code of silence; but one day they will.  For the sake of those not “living well with dementia” – both those who have it and those who care for them - let’s be brave and say those “unsayable” things.

NB: For an important ruling on information sharing in health and social care, which may assist family carers in discussing concerns with professionals, see The Information Governance Review, March 2013, pg. 119, Principle 7: "The duty to share information can be as important as the duty to protect patient confidentiality.  Health and social care professionals should have the confidence to share information in the best interests of their patients, within the framework set out by the Principles." 

See also a document published by Carers Trust and the Royal College of Nursing on the Triangle of Care - the best practice partnership between people with dementia, their family carers, and health and social care professionals.

* The Carers' Call to Action was a time-limited campaign to raise awareness of dementia carer issues; it was wound down at the end of March 2015, but its work continues through a new organisation, Tide.

Update 2019: A new charity, Dementia Carers Count, has been set up specifically to support family dementia carers, offering 3-day residential and one-day sole topic courses for respite, education on dementia, coping strategies, practical, legal and financial information-sharing, resilience-building, and peer support.  These courses currently take place in a Birmingham hotel, prior to opening of a national resource centre in 2020-21. More details on link above.

Dementia UK Admiral Nurses and their helpline also offer support, as does UK Alzheimer's Society and its online Talking Point forum (peer support). 

Everything Must Go

We moved in just before Christmas 1973.  It was a time of power-cuts, strikes, and three-day weeks - but that meant little to me as a child, beyond the novelty of candles when the lights went out.  Far greater was the excitement of our new house in a different part of the country.

And it really was “new”.  One of the first to be completed on an estate marketed as ‘Green Willows’, it had been the manager’s office – a fact still remembered and repeated by my mum more than thirty years later, when so much else was forgotten.

We’d lived in a bungalow before, so an upstairs and downstairs, fitted kitchen units, breakfast room, wood-block floor in the living room - and a separate downstairs loo! – were luxury indeed. There were double garages (even though most people then had only one small family car); and, unlike the street we used to live on, all the front gardens were open plan, with just a tiny strip of concrete to mark the boundary of each property.  The houses were staggered, so that none was immediately overlooked by its neighbour – informal, yet private. How aspirational it must have seemed to our parents, who had grown up in the shadow of war and rationing.

My father’s public sector employer had set up a new HQ in the area. Many of the neighbours worked there too and moved in at the same time; they had children of a similar age – a ready-made community of playmates.  In those days, primary school children didn’t have homework, exams, or too many structured activities.  On sunny evenings, we’d wander round to each other’s houses in the quiet cul-de-sacs, and ask if Angela or Julie, Debbie or Mandy could come out to play?

We’d ride our bikes along the paths that ran around the back of the estate by the stream, make bridges and dens with debris left behind by the builders, and lark about in the foundations of unfinished houses at the top of the road – no “health and safety” then!  We’d dress up in net curtains and “ballet dance” to records in each other’s bedrooms, or “show jump” on space-hoppers in the back garden...

Those days are long gone.  Angela, Julie, Mandy, and I grew up and moved away.  And in recent years, the house that was once such a happy home became a prison to my mum – and to me.

My father died in 1988. I had not yet graduated, but the companionable retirement my parents had anticipated was cruelly ripped away. I was at university, having to study for my finals. Mum couldn’t bear to be alone.

For the first few weeks, she spent nights with a variety of friends, but was reluctant to return to the empty house.  It was some time before she conquered that feeling, and on retirement got a bichon frisé puppy to keep her company; we both adored him.  Arguably, though, he kept her tied to the house, when she might otherwise have been able to travel and make new friends.

For a few years, things moved forward.  Perhaps keen to erase the sad memories of my father’s death in that house, mum threw her energies into redecorations.  She had always been a keen browser of soft furnishings, and I was from childhood her partner in crime on many a trawl of interior decor shops.  Now I visited at weekends, to find new curtains, wallpaper, double-glazed windows, and made-to-measure white bookshelves; but the house was still our home.

“Isn’t this a lovely room?”, mum would often say to me in the calm pale green living room with big windows, looking out onto a peaceful copse at the back.  She loved to feed the birds and squirrels. “It’s so quiet here!”

But gradually the mood changed with her dementia.  Those trees, once soothing, became dark and threatening to her.  “What is this place?”, she started to ask.  “Why have you dumped me in this empty hotel?”

And as she stopped recognising the home where she had lived for nearly 40 years, she grew frightened by the very things that were selling points to the young: double-glazing that kept the air in and noise out; privacy, bordering on isolation; people passing only in cars; no shops within walking distance, nor public transport for those too frail to drive.  “There’s nobody about...”

We were lucky that she could afford taxis into town; the regular drivers were kind and looked out for her, helped her with her shopping. But there were more and more incidents of confusion: mixed up appointments, lost bank cards, purses, and forgotten PIN numbers.  Taking mum’s booking became a liability for them.  She was no longer safe to go out on her own.

So during the week she was confined to the house; and increasingly when I was there, I found I couldn’t leave her alone for a minute – if I dropped her off in town to park the car or just got up to pay a restaurant bill at the bar, I’d have to hurry back to where I’d left her, before mum wandered off or got distressed.  Supermarket trips became a trial, as she couldn’t walk far but insisted on accompanying me every step of the way; I could never go out of sight.  It became easier just to stay in.  Even then, I could barely leave the room to put the kettle on or go to the loo.  Neither of us could go out.

The house became run down.  For years leading up to this point, mum had been reluctant to allow workmen in for maintenance; any jobs that needing doing, I would have to organise, often against her will.  Cleaning too became a battle.  Mum insisted that she did it herself, but this was a sad delusion.  In truth, she was neither willing nor able by then.  My visits were no longer relaxing social occasions, but frantic covert schedules of domestic chores and admin, done hastily - and fearfully - behind her back.

Eventually, mum’s symptoms were such that she had to go into residential care.  One day in the early autumn of 2011, I had to manoeuvre her out of that house - knowing, as she did not, that she would never be coming back.

I had to lock it all up and keep it safe in my absence from 100 miles away; gradually clear it of all our valuables, documents, and personal things, and the hundreds of hoarded and hidden items that mum had amassed in the throes of her illness, when she couldn’t remember what she’d already bought: mountains of bed-linen, crockery (especially mugs), make-up bags, purses, mirrors, novelty key-rings, gift sets of toiletries, rooms full of soft toys that had to be “put to bed” each night, scissors, umbrellas, costume jewellery, drawer after drawer of greetings cards and stationery, and scores of M&S canvas ‘bags for life’ (aren’t they just?).  Madness in 3-D.

Nowadays, my wallet is not full of credit cards, but Gift Aid cards for the many charity shops I’ve frequented.  If they gave Air Miles at the local recycling centre, I’d easily have earned a spa break in the Maldives.

I’ve washed and scrubbed and hoovered; made teas and coffees for numerous workmen.  Preparing the house for sale to pay the care fees, I’ve had to stand by and watch a parade of strangers troop through our home, assessing our belongings and by association our lives, and for the most part deeming them worth very little.

It’s taken me the best part of two years on my own.  In all, I’ve been shackled to that house longer than either of my parents.  I’ve sobbed my heart out there, screamed in frustration and despair, knowing that no-one would hear through the double-glazing, no-one passing by in the cocoon of their car would have any idea of the anguish behind those walls.

And as I’ve spent my weekends and Christmases in solitary confinement, disposing of our collective lifetime, I’ve paused to glimpse through the window the new generation of children setting out on their bikes (in crash helmets now) and parents unloading shopping from 4x4 vehicles that always stay on the drive, too big for those 1970s garages.  That’s how we must have looked: carefree and busy with the bright new present, blissfully unaware of what the future might hold.

I’ve looked at our treasured possessions and agonised over what to do with them now. Anything that mum can still use or appreciate, I’ve taken in to her.  But what of the rest?  The silver 1920s tea set belonging to her mother, discovered in the loft?  She fretted over its apparent loss for years.  “Here it is!”, I wanted to say.  “Not lost or stolen after all!”  But she wouldn’t recognise it.  The colourful Spanish dish, brought back by a dear late friend from her holiday?  It would be just a bowl. Even mum’s wedding dress, kept in pristine tissue paper for nearly fifty years?  Would it mean anything to her now, except perhaps a vague reminder of loss?

Things are no more than things when robbed of the memory that gives them meaning.  The silver tea set, once so precious, an auctioneer declared to be just electro-plate of a common design – not worth listing for sale.

So what did I salvage at the eleventh hour?  A sunflower door-stop that had been an everyday feature of our living room; and a musical box – three kilted musicians made of felt, playing the Skye Boat Song.  I can still see the little shop where mum bought it for me on a day out when I was six years old.  She coached children to sing this song in competition at music festivals, as she had done as a child.  I have no children to hand these memories on to; but for the moment, they remain precious to me.

Mum is unaware of all this.  She has no sense now of that house and we never speak of it.  “Home” to her is the place where she lived as a child in the 1930s and 40s with her parents.

So shall I, when I’m 80 and have dementia, be back in this house in my head?  Looking in vain for my mum and dad to a soundtrack of Bay City Rollers?  Perhaps memory itself is a prison.

I always thought I would shed a tear when I slipped the keys through the letterbox and left for the last time.  But when the day came, I was so tired – mentally, physically, and emotionally - I was simply glad to be finished at last.  As I drove away from that town where I don’t belong any more, past the restaurants filling up with evening trade – couples on dates, workmates out for a drink, families celebrating birthdays and exam results - I felt sad, yes; not to be leaving, but sad for all those lost years, when I should have been making a life in the present and the future, not trapped in someone else’s past.

That, for so many of us, is the dearest cost of dementia.

It's (Not) So Funny How We Don't Talk Any More

There’s something missing now after News at Ten. No phone call from mum. That had been our ritual most nights in the last twenty-odd years since I had moved to London: a general, rambling gossip of at least an hour about the day’s events, what was on TV, anything in the news. When our little bichon frisé dog, Dill, was still alive, I’d love to hear about his antics.

Mum was a performer. She’d trained as a classical singer from early childhood, broadcasting on the radio, and sang professionally until she married: German Lieder and oratorio, such as The Messiah and St Matthew Passion. Her contemporaries on the circuit of Northern choral societies were Kathleen Ferrier and Janet Baker. Later, as a primary school teacher, she retained that instinct to entertain in her communication with the children.

So when she began to repeat herself in conversation (more than a decade ago, perhaps nearer two), it wasn’t initially cause for concern. It just seemed a feature of her general volubility. Yes, it became more prevalent as time went on, but the change was gradual; there wasn’t a point at which I could identify it as suddenly odd. It only became an issue in the last few years, when it grew extreme – repeating a question or story as soon as she had said it and constantly returning to the same.

Mum in her singing days

There were other warning signs that her verbal communication skills were damaged. She started to use generic words for types of food – “white meat” or just the monosyllable “meat”, instead of chicken, turkey, or pork. And her understanding of language became very literal. Figurative expressions and jokes had to be explained; irony and satire became a mystery – she could not process anything that employed disjuncture between what is overtly said and subtextually meant.     

The phone calls, which had been a shared pleasure for most of my adult life, now became onerous; mum would call me multiple times in the day and night, sometimes redialling immediately, because she couldn’t remember having spoken to me before and still had a pressing impulse to say something – the same thing, over and over, and often of a disturbing or accusatory nature. 

I couldn’t ignore the calls, in case of emergency; and if I put the ansaphone on, it would soon fill up with distressing messages. I realised that mum had lost the ability to distinguish between a recorded message and a live person on the line – if the machine picked up, she would think it was me, refusing to converse. (This explained the numerous occasions when she had described being hurt by friends “not speaking to me”.) 

If I went out for the evening, I always had to hurry back for the 10.30pm call, no longer for an enjoyable chat, but simply to allay mum’s fears of not being able to get through to me, and to assure myself that she was in the house and safe. I came to dread the sound of the phone.

So when she went into residential care, I was relieved not to have that constant stress. At last I could sleep at night and get on with some tasks in the day. Mum could have a line installed in her room, but I agreed with staff that it would not be a good idea. Because she could no longer understand phone etiquette – what times are suitable to ring - it would have to be restricted to incoming calls; and that would encourage her to stay in her room all day, when she needed company and supervision.

Staff could dial on the office phone for her (other residents do take calls), but on the whole it has proven best not to attempt this, as it merely unsettles her.  We take for granted the knowledge that a phone receiver has one end where you listen and another into which you speak; that it has to be held the right way up, close to your ear and mouth; that you take turns to speak and to listen; and that you “hang up” at the end of a call. These are all concepts that can become challenging to a person with dementia. And with today’s cordless handsets, even “hanging up” is now an abstract – a mere press of (the right) button.

With people around to distract her and meet her material needs, there’s no evidence mum is upset by the lack of phone contact. She’s forgotten about it. It is I who find it strange.

And when I visit, there’s little talk now. Not because mum is incapable of speech. Other residents struggle with this, but mum retains a sophisticated vocabulary and can still speak coherently. Only she does so sparingly. Sometimes she will address me in Welsh, and is frustrated when I can’t respond. (I knew a little as a child, but it was a long time ago; luckily, she has a Welsh friend who can chat with her in like kind.)

No, content is the problem for us. So many subjects are taboo. Uppermost in mum’s mind are her beloved parents – both long dead, as is my own father, who died at the age of 52. Talk of them cannot avoid the inevitable question: where are they? To which there is no reassuring answer and little possibility of distraction. 

Mum can’t tell me what she’s been doing during the week, because she doesn’t remember; I can’t tell her what I’ve been doing, because so much revolves around selling the family home and managing her finances to pay the care fees – a distressing scenario from which I have to shield her. She does not know or accept that she has dementia, so we can never mention that. 

And she has no real grasp of where she is – either the care home itself (which she variously believes to be a restaurant, hotel, school, or convalescent hospital), or the town or part of the country. It would not help to try to orientate her in the present, as “home” to her is the childhood home she hasn’t seen since 1944, where her parents would be waiting. I avoid any reference to the actual town where she lives, for fear of reminding her of our house ten minutes away that I have spent nearly two years packing up. 

Oh, there’s plenty of advice for conversation-starters in dementia care: picture books, collages, memory boxes, photo albums, music. These may work with some people or between others and my mum, but between us they are largely irrelevant.  She shows little interest in general pictures, media, or even music, which you might expect to be key. Family photos confuse her, as she can’t place them in time or distinguish between herself, me, and her mother; happy scenes may spark her attention for a moment, but it doesn’t last. And memories reawakened of the life now gone are likely to provoke uncomfortable enquiry... 

The whole context of our shared past and how it’s been changed by death and dementia is so full of problematic association that I daren’t initiate, only react to mum’s own expressed thoughts – now few and far between. 

Friends whom she knows in only one context (as work colleague or neighbour), may find it easier to engage with her, I believe, because they can limit their discourse and focus on positive things. Staff too are better able to tell white lies or go along with misconceptions to reassure her; I similarly find that I can chat more easily with other residents - because I have no emotional investment in the veracity of what’s said or in their response to me. Mum doesn’t like me talking to them though. As far as she’s concerned, no-one else has claim on my attention!

So my visits pass mostly in silence or the neutral chit-chat of strangers: I tell her she looks nice in that pink top, or admire her new shoes; she asks about the weather and traffic on the roads. And then she’ll doze off, and I just sit and read the paper. 

There is an awareness of communication difficulties in dementia, but it tends to focus on language itself: vocabulary, memory, and the mechanics of articulating words. It’s more complex than that. Conversation is reciprocal, like a game of tennis. If only one person hits the ball over the net, the rhythm dies; it feels redundant after a while for that person to keep serving. I’m reminded of that famous Zen riddle of the “sound of one hand clapping”. Speech – or lack thereof – becomes a barometer of the relationship. 

That’s why I’d suggest that communication in this stage of dementia may be easier for professionals. They have no emotional expectation of the game. There’s no personal disappointment if exchange turns into one-way traffic - net practice, instead of live match.    

When I drove back to London after leaving mum in the home for the first time, it struck me that it was also the first time in my life that I’d have no-one to call when I arrived. For over twenty years, I’d always called her to say I was setting off to join her or had arrived safely back in my own place. Who would care now, if I had an accident on the road, or indeed care about anything I did when I was out of sight and out of mind?

Years ago, I’d had to supervise building works at our family home to remedy subsidence. Already in the grip of dementia (although I didn’t fully realise it then), mum had refused to help and I’d been left to clear out rooms full of junk for the builders to get in. Among some old papers, I’d found a letter she had sent me in college, full of humorous, chatty news about dramas at work and the decorating she and my dad were planning. At the time, I was so angry with her for obstructing me in a stressful task on her behalf that I ripped it up and chucked it out with the rubbish. How I wish I’d kept it now!

Clearing out the house more recently, I found a lot of mum’s old diaries - not reflective thoughts, just notes of my weekend visits and the things we’d done together, hair appointments or lunch with her friends, observations of the weather, and trips to the vet with the dog.  Here, in the minutiae of a daily life long gone, was her real self – my mum’s true voice. I treasure those everyday relics.

I am glad not to be plagued any longer by those terrible paranoid phone assaults of latter years. But I miss the aimless, cosy tittle-tattle of our old News at Ten calls. If I see something that would interest mum on TV, I still have the impulse to pick up the phone and say, “Quick, switch on BBC1, there’s Bargain Hunt in Llandudno!”  I’ll never do that again.

But I will keep throwing the ball in the air and trying to reach her over the net... 

Paranoia - And The Other Fear That Dare Not Speak Its Name

“I’m very angry with you!” The door burst open, silhouetting mum in the doorway in her nightie.  It was about 2.00am and I’d been drifting off to sleep.  But she’d got a bee in her bonnet, and she wasn’t going to let it rest. “You’re getting that man in, aren’t you? Well, you’ve got no business!” It was true I’d booked a plumber to service the boiler before winter. A couple of years earlier, we’d been caught in freezing weather with no heating or hot water, and I had wanted to avoid that happening again. 

I knew she wouldn’t be able to cope with such an emergency if I weren’t there (she couldn’t tolerate workmen in the house), so I’d set aside a few days to supervise maintenance before we went on holiday. It was to be her 80^th birthday and I’d rented a house for a week on the Isle of Anglesey, a special place for us where we had family connections and had enjoyed happy days in the past. I had hoped she’d be looking forward to it, but this white anger about the plumber blocked out everything.

While she might have had a point that I’d “taken it upon myself” to assume charge in her house, I’d come to do this over the years, in order to head off the crises she got into, if left to her own devices. This meant many tedious and time-consuming jobs that were certainly no fun for me - I took the responsibility, to keep her safe and well. 

But mum couldn’t see anything positive in it; to her mind, there could only be one motive – I was doing up the house to sell it and put her in a home.  At the time (2006), there was no question of this.  But she was utterly enraged at the belief, and berated me at great length as I lay defenceless in my bed, culminating in the vituperative declaration that she was not going anywhere with me: “Heaven help me, if I have to rely on you!”

It was a theme she returned to often in subsequent years, latterly fighting my attempts to carry out such innocent domestic tasks as vacuuming, changing her bed-linen, or putting out the rubbish, on the same deluded grounds. Installation of a new cooker and washing machine (to replace broken down old models) was viewed as confirmation of my evil intent, and even delivery of internet groceries provoked hours of aggressively suspicious interrogation.

There were delusions and resentments directed at others too. Friends, she believed, had snubbed her in town, or were avoiding her on the phone; they’d said nasty things to her. She became convinced that a beloved uncle, long dead, had stolen precious things from her mother’s house, when he kindly cleared it out for her more than thirty years ago when her parents died. Numerous times, she called the next door neighbours, adamant that the gardener - with whom she had always been on cordial terms - was “hiding in the house”; they would search it from top to bottom to humour her, and even then she would not be satisfied. “Well, of course, he’s gone now!”, she would say. (The most extreme example of this is detailed in my post, The Crisis We All Dread.)

And she became extremely possessive of me. She was always inclined to be clingy (we were both only children, and she’d had a very close relationship with her own mother); but as time went on, she couldn’t accept any notion of my developing relationships or emotional bonds with others. Whenever I was with her, I couldn’t speak to friends on the phone or even check emails openly, because she’d demand to know who I was talking to, on the assumption that I was saying bad things about her. It was impossible to reason with her about any of this. 

Yet between these episodes she was her real self: a gentle, warm, kind, loving, generous person, with a lively sense of humour, who would never have harmed anyone – least of all me.

Last week, the Independent published the heart-breaking story of a man with vascular dementia (also my mum’s dominant strain), who killed his wife of more than fifty years, while under the delusion that she was cheating on him:

'She was the love of his life. Then he killed her.'

Such extreme outcomes are thankfully rare. But the paranoid beliefs that provoke them are quite common, although little discussed – they don’t make comfortable reading or positive images.  (See also Dementia-Related Violence a Growing Concern by Paul Bibby in the Sydney Morning Herald.)

Like this poor man’s two daughters, I can understand with hindsight that my mum’s behaviour wasn’t her fault or her true intent; it was the illness talking. And I can now see that all those irrational outbursts were driven by fear. 

A couple of weeks ago, a researcher posed the question on Twitter, “what does dementia feel like?”  From my observations of my mum, I replied that it seems to me a constant anxiety or dread without focus (sometimes finding illusory focus). The person is aware of feelings, rather than thoughts; and with a declining (or absent) context of memory to make sense of these feelings, the mind supplies an alternative logic to explain them. 

For instance, my mum has also had times when she’s been convinced that her parents were splitting up, because her father had been having an affair, or that my father was walking out on us. A very similar scenario to that described in the news story above. I know these beliefs to be nonsense – all the parties are long dead and never behaved in anything like this manner during their lifetimes. But my mum was frightened by their absence; and because she couldn’t remember how or when they died, or even that they were dead at all, her mind came up with another reason: they had run away without saying goodbye, because they had done something shameful. Why else would they leave her alone?

In the dementia unit where she now lives, there are other residents with similar delusions. Some believe that people are trying to kill them, that the food is poisoned, or their property has been stolen. One lady will recount in conversational tones the most lurid and graphic tales of having been sentenced to death on a trumped-up charge or of being a spy, which is why the staff “have it in” for her. Another goes wild if anyone tries to sit in a particular chair, because she believes they’re trying to displace her or the “husband” she wants to sit by her side. 

While there may be some benign delusions, the negative seem far more prevalent, concerning persecution, theft, punishment, or betrayal. Why?  Because they are provoked by fear: fear of loss, of insecurity, of not knowing who you are, where you are, or why. How do most of us answer such questions? From unthinking memory. But enter into the feelings of a person with dementia, whose memories are fading by the day, and you begin to see where paranoia is born. People who experience such fear need sympathy and understanding, not stigma and condemnation.

But, equally, those close to them should be allowed to admit that they too are often afraid; afraid of what is happening to someone they love – and sometimes afraid of that very person. When I was in my own flat, mum would repeatedly wake me by phone with disturbing accusations, of which she would later have no recall; and when I was staying with her, she would often burst in on me during the night when I was barely awake, in the grip of some intense obsession, or, simply having forgotten I was there, intent on looking through my bedroom window to check for intruders. 

I knew that her frailty made physical attack unlikely. But there were times when the unpredictability of her moods and irrational antagonism unnerved me. And yes, there were occasions, particularly at night, when I was scared to be alone with her – and, no doubt, when she was scared to be alone with me. In those awful moments when her memory played cruel tricks, we were not the loving mother and daughter of reality, but two strangers, locked in together.

Mum sat in black silence for that whole day while the plumber did his work. She maintained this deepest of sulks for the rest of the week. I thought I would have to cancel the longed-for holiday. But the day of her birthday dawned, bright and sunny in late September. Miraculously, she allowed me to manoeuvre her into the car, and we enjoyed a week of glorious autumn weather by the Menai Straits. 

One night, over a restaurant meal, she said what a lovely time we’d had.  But you didn’t want to come, I said; you gave me hell about it. “No!”, she said.  “Why would I do that? I think you must be mistaken.” 

I could no longer hold back the tears. Mum looked on perturbed – and totally mystified by my distress.

We did have a lovely time.  It was our last holiday together.  

Mum & me, Beaumaris Castle, 1976

Back in Beaumaris for mum's 80th, 2006

Not Just "Memory Problems"

It was the kind of trip we’d made numerous times together – a few days away in a nice hotel, a bit of shopping, theatre, sight-seeing.  Mum had always been phobic of lifts since getting trapped in one in her youth, so I had booked rooms on the first floor. It was only one short flight of stairs. Hampered by arthritis, she had set off first, taking it slowly, while I waited with the luggage for the lift. We should have emerged on the floor above at about the same time, hardly more than a minute later. 

But when I stepped out of the lift with our bags, she was nowhere to be seen.  I thought she might already have let herself into her room, but no. I looked up and down the corridor, called out for her: nothing. Anxious now, I ran back down the staircase, thinking she might have fallen, but thankfully she wasn’t lying injured there. Nor was she in reception. 

I returned to the first floor.  Corridor still empty.  Beginning to panic, I dashed up to the next floor, and the next – and eventually I found her.  “Where have you been?”, I scolded, with the angry relief of a frightened parent reclaiming a feckless child. “Why didn’t you just wait for me by the lift?”  She didn’t know.

At the time, back in 2004, I couldn’t understand how mum could have become lost with only one flight of stairs to negotiate. But now I recognise this as a classic case of disorientation. Unable to read geographical markers, she had simply kept on moving. 

By itself, this incident would have been insignificant. Anyone can have a moment of confusion in an unfamiliar place.  But looking back, it was just one of a number of strange happenings over the years.

There was the time, for instance, when I was struck down with a stomach bug while visiting mum for the weekend.  Afraid I was going to choke after hours of violent retching, I begged her from my supine position on the bathroom floor to call the out-of-hours doctor. She couldn’t make that call. With my stilted prompts, she got as far as dialling the number, but proved unable to describe my symptoms or to give the doctor my address to register me as a temporary patient. I had to crawl on my hands and knees to the phone to speak to him myself.

And as time went on, I noticed that mum found it increasingly difficult to open food or household packaging. Instead of following instructions or doing the most obvious, intuitive thing, she would employ the most difficult, strenuous means – hacking away at plastic boxes with a knife instead of snapping the designated tab, or tearing the ends of a packet of wet wipes, instead of simply pulling the adhesive strip at the front. Attempting to remove a stain from the carpet, she once cut off the pile with scissors.    

Then there was her obsession with the washing-up brushes.  Whenever I went to use them, they would not be to hand by the sink, but hidden in some far corner.  Why?  “Because he’ll see them!”, she would say crossly, meaning our benign neighbour, whose garden backed onto ours. The only way he could see into our kitchen would have been from an upstairs window, and then but a distant glimpse; yet mum was convinced that he would not only be able to see those brushes, but there was something shameful about being thus caught, or judgmental in his looking. Of course I knew this to be nonsense; but if I tried to reason with her about it, she would go wild. 

“Do you have memory problems?”, ask the dementia campaigns.  While this is a simple opening gambit to encourage consideration of a syndrome whose symptoms are many and varied, it can be a misleading over-simplification. 'Memory problems' to most people means forgetting names and facts: where did I put my keys? Who’s whatsisname, you know, that bloke who plays the Belgian detective, him with the ‘leetle grey cells’?

The anecdotal examples I have cited above are bound up with memory, yes; but they are not as straightforward as momentarily forgetting something that can be recalled with a prompt.  They are cognitive malfunctions. 

That’s why the proposed new name* for dementia is Major or Minor Neurocognitive Disorder (NCD) – an unwieldy and controversial term for various reasons, but arguably a more accurately descriptive one.

With hindsight, I can look back on all those strange incidents (over more than a decade) and see quite clearly that they were all part of the landscape of dementia.  But at the time, they seemed just isolated pockets of weirdness, and I grew used to them; it’s only when you step away and view from a distance that the overall pattern emerges. 

Recognising dementia is a difficult business, whether for the medic making a diagnosis or for family trying to care for a loved one.  No two people experience exactly the same cocktail of symptoms (although there may be common themes); those I have described here were relatively low-key in comparison with others in my mum’s case, and surfaced over a very long period of time. 

In subsequent posts, I’ll be looking at some of the more dramatic manifestations, which tend to be less discussed: personality change; emotionally disproportionate responses; decline in language skills; and paranoia, delusion, and confabulation – a confusion of fact and fiction, in which a person believes elements of fantasy to be actual memories.

There is a great deal still to be understood about dementia by both individuals and society.  A first step must be to acknowledge that it’s so much more than just a memory problem.

*American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders (DSM-5), revisions to be published May 2013.

Some behaviour changes , as described by the UK Alzheimer's Society.

A Stranger In My Home Town

My mum used to love Easter. More than Christmas, which was about drawing the curtains and holing up indoors against the dark nights; Easter meant the beginning of lighter evenings and longer days, daffodils in the garden, birds nesting in the eaves - everything fresh and green and full of new life.  

I was always home for Easter weekend, bearing the “Rolls Royce” of hot cross buns and simnel cake from the special bakery down the road from me. We’d sally forth in the car to one of our favourite haunts for a pub lunch or cream tea and potter about at craft fairs and farmers’ markets.  When she got older and more physically frail, we could still enjoy the beautiful scenery on our doorstep: gentle rolling hills, sheep in the fields, and golden stone that seems to smile in the sun.

This year, I could still bring mum cake and hot cross buns.  But they’re surplus to requirements.  She doesn’t register festive days any more, and there are freshly-made cakes* aplenty in the care home where she lives.  I’m grateful for that.  She likes their meringues, cream puffs, and sherry trifle; they keep up her interest in food.  But we’ll never again eat a meal together cooked by one of us in our own home.  And it’s over a year since we’ve been out.

If it were just a question of physical capacity, there would be aids to help. I look enviously at families visiting the residents in the ground floor unit, who might be in wheelchairs, but don’t have dementia. They can go out.  More importantly, they can speak to their loved ones on the phone between visits and anticipate such trips.  

Some people in mum’s unit can still do those things too. But not my mum. Formerly a prodigious talker, she now struggles with the technology and concept of phone conversation. (We take for granted the understanding that a voice on the other end of the line can be the same person we know in real life, just not in the same place, or that a recorded message can’t answer back; a person with dementia may become confused about such things).

With no short-term memory, she can’t look forward to future plans or recall pleasurable incident just past. She can’t remember having been in one room, once she has passed into another. Going in and out of the unit – even downstairs to function rooms or to the gardens in summer – is too disorientating for her.  

It seems unbearably sad for her life to be confined to just two or three rooms and a corridor. So for the first few months of her residence, I persisted with attempts to take her out, naively thinking it would be no different than our regular pre-care home jaunts to country pubs, our favourite restaurants in town, the theatre, or cinema. 

I finally came to accept that it caused more harm than good. In truth, the wider world had already become a threatening blank to my mum, long before she went into care. For some months, I had been shocked to find that she had no recall in conversation of the most familiar places – the main street she’d browsed in daily for 40 years, the restaurants where we ate each week, shops where staff knew her well and always welcomed her for a chat.   

At times, I became frustrated; I simply couldn’t believe that she didn’t know what I was talking about.  How can you forget so completely the everyday local knowledge that binds you to the place where you live?  The network of usage that makes you part of that community?

She’d been a teacher, and when I was a little girl I attended the same school. Before and after lessons, I’d wait in her classroom, sharpening pencils, helping to pin up children’s work on the walls, or playing the glockenspiel; and then we’d head home together. The journey took us through the town centre, where we’d have to change buses. Every day, we’d walk through the department store, sometimes looking speculatively at furniture (one of her perennial obsessions!), or more often lingering in the perfume department.

She would gossip with the assistants, while I was fascinated by the toiletries: not the expensive fragrances from Chanel and Christian Dior, but lemon-shaped soaps by Bronnley, in their waxed paper wrappers like Christmas tangerines; bracing 4711 Eau de Cologne in sprays and perfume sticks that I’d surreptitiously test on my wrist; hippy scent Aqua Manda, in its dark brown apothecary’s bottle, heady with orange and spice and patchouli - and, most exotic of all, Maja.

Maja came from Spain. There was eau de toilette, talcum powder, and soap in a dramatic red, black, and gold box, proud flamenco dancer in full flight. The soap came wrapped in black tissue: unusually khaki-coloured and very grown-up to a young girl, with a subtle, woody, spicy aroma. It wasn’t always in stock, which made it a treasure to find in any other store; and sometime in the 1980s or 90s it was discontinued in the UK.

A few years ago, I was then delighted to find it available online. It would make a lovely Mother’s Day gift, I thought, recalling memories of that time when mum and I were always mooching in town together. So I had it shipped all the way from the US and excitedly presented it to her. She opened it with only mild interest; sniffed and quite liked the perfume; then casually returned the soap to me. I was disappointed and not a little hurt by this reaction.

Looking back, her dementia was more advanced than I had realised at that time. She still functioned well in other respects.  But now I see: how could she recall the memories evoked by that scent, when she already struggled to recall the department store in town, the main street where it stood? These are landmarks known by all who live there, as familiar to us as our own house. And now she doesn’t remember that.

Of course it’s possible the soap meant less to mum in the first place, and that memory from thirty years ago was understandably hazy. But a person without dementia would have remembered something of it when prompted, or had the social grace to cover it up. Dementia just leaves a blank.

I had moved away to London when I graduated in the late 1980s, but continued to visit every other weekend and for longer spells. As mum’s dementia grew worse, I found myself spending more and more time back at the family home – to the extent that I often felt I was living her life more than my own.  That town was as much my home as hers, as much my home as my own district of London.

Suddenly it’s over. I still go to some of those places on my own, but it’s not the same. I can't talk to mum about them, in case it disturbs her fragile sense of where she is now. And with no personal connection, nothing to root me in that community by everyday engagement (stocking up with mum at the supermarket, browsing for clothes together in the town centre, paying her paper bill, taking rubbish to the dump), I’m an outsider.  

All the things we used to do that were bound up with that place – our shared rituals, the life we lived there with my late father – are only in my head now. No-one else remembers.

Dementia, we are told, attacks short-term memory: “they still remember the past”. Well, only selectively in my mum’s case, and only her own past - mostly her childhood or youth, long before my time. My past - and much of my present, the memories we shared of my lifetime - has gone.

A few weeks ago, she asked me out of the blue if I had a husband. I don’t and never have. I laughed it off at the time. But if she has no idea of something so fundamental about me, how much of me does she now remember?

The bereavements of dementia are many, and some are better known. I have come to realise that this cruel disease has not only robbed mum of much of the life we shared - it has left me alone with my own memories and made me a stranger in my home town.

(*This post was written in 2013. Sad to say, by 2016/17 the excellent selection of freshly-made cakes had largely disappeared, due to budget cuts at that home - a common scenario in the current climate of the care "industry".  See my four-part post, Five-Star Hotel, Five-Star Care?  In May 2018, I moved mum out to another home. 

She no longer knows me at all. You can read about our more recent situation in this post, An Act of Remembrance - Update 2019.)