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). 

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

The Crisis We All Dread

The call came at 11.00pm, as I walked home after a rare night out with friends. "Can you ring the police? They’re at your mum’s house...” It was the Aid-Call phone operator. My mother, then 85, had lived alone since my father died when I was a student 23 years earlier – and for at least the last ten, she had increasingly pronounced symptoms of dementia. Clearly, this wasn’t a conversation to have in the street on a mobile phone. I raced the last few yards into my flat, fighting to quash the rising panic. What had happened this time? Was she OK?

It was just after the August Bank Holiday, 2011; I’d been there, but was now back in London 100 miles away. The wonderful next door neighbours, who kept an eye on her in my absence, were on holiday, as were mum’s other friends. Alone and confused, she had gone wandering, the policeman said, and had knocked on the door of a young family whom she had never met before. They had called the police, who traced me via mum’s Aid-Call alarm.

It was not until the end of the week, when I could speak to those neighbours privately, that I Iearned the full story: mum had turned up agitated in the dark of night, sobbing that “a man who used to work for me has broken into my house and is holding my daughter hostage – he’s going to rape her!” As they didn’t know her, they took it at face value - the husband anxiously debating a ‘have-a-go’ attempt to prevent this seemingly imminent attack...

I asked the policeman if he could make mum a cup of tea and a piece of toast while I rang round for help, as she probably wouldn’t have eaten. (I always stocked up the fridge and she assured me she ate, but the rotting food would still be there when I returned). “No problem”, he said. In the background, I could hear mum enthusing, as if high on drugs, about “all these lovely, lovely men!” I don’t know their names, but I’ll always be grateful for their kindness. 

There was no-one available to sit with her that night. I had had a few drinks and couldn’t drive the hundred miles then. I called Social Services’ ‘out-of-hours’ number, assuming it to be intended for such emergencies – but was told they had just two people on duty for the whole town, who could only attend for specific tasks, such as taking someone to the loo or turning them over in bed. My only options, it seemed, were to call an ambulance and get her taken to A&E, or to summon an unknown out-of-hours doctor to refer her as an emergency admission to any care home with a bed. Either would have caused her extreme trauma. I had to risk leaving her unattended overnight.

How could I ever have thought she was safe to be left on her own? Well, I didn’t. I knew she wasn’t capable of taking care of herself. But she had always denied it and vehemently rejected help. In order to protect her, I had had to go behind her back to get a referral to social services and to a psychiatrist who finally diagnosed the condition I had recognised for years.

No matter how much time I or others spent with her, mum was increasingly plagued by dread, phoning me incessantly with lurid delusions and accusations, searching for long-dead relatives, manically packing her bags for the ‘evacuation’ she adamantly believed was coming, and locking herself in against imaginary intruders. She stopped recognising the house, even forgetting which was her own bedroom (where she had slept for 40 years), and became unable to envisage the room on the other side of the door.

And my life had stopped. How can you concentrate on anything other than fire-fighting such random daily crises? How can you keep any sense of yourself, when the very foundations of the life you share with the person closest to you are constantly called into question?

I had started proceedings for a Court of Protection order to formally manage mum’s affairs and had been arranging a care home place. I had felt huge guilt and conflict about doing this without her knowledge or consent - we were each other’s only immediate family, each other’s best friend. I hadn’t been sure I could go through with it. But the events of that terrible night convinced me I had no choice.