My Biggest Lie: Part 2

It was the summer of 2011. After many years of struggle, I had finally accepted that mum’s dementia had progressed to a stage where I could no longer keep her safe at home; encouraged by the social worker, I had found her a residential place. But as mum believed there was nothing at all wrong with her, how could I persuade her to move?

I had spent the August Bank Holiday with her at our family home as usual, but had returned to London to make the final arrangements. This might seem odd, given that the care home was in mum’s town; but I could not visit it openly (or indeed go out by myself at all, except briefly to the shops), neither could I use the computer or phone in mum’s presence, because, if I were out of sight for even a moment, she would come looking for me, and would interpret any outside communication as suspicious. She’d had paranoid symptoms for years; it was a horrible irony that I was now really plotting behind her back.

I needed to wait a few days to speak to the unit manager at the home, who was away on holiday. I was also waiting for the psychiatrist to return, in order to assess mum’s mental capacity for my Court of Protection Deputyship application. This would give me legal authority to manage her finances, which I would need to pay the care fees. The psychiatrist and I had agreed that I would always stay away when she visited, so that she could see how mum was on her own, and so that I would not be associated in mum’s mind with any unwelcome professional approaches. She would usually visit with Jenny, the independent care-worker mum liked, in order to maintain her trust.

A couple of days before this visit was due, I was disturbed to receive a phone call from an old friend of mum’s, whom she had not seen for a while. This friend told me that mum had rung her out of the blue, and said some very strange and upsetting things. She did not go into detail, but the fact that I never heard from her again, despite continuing to send Christmas cards, good wishes, and letters of explanation, suggests that it must have been something extremely offensive. 

The psychiatrist’s visit passed apparently without incident, although she did call me at the time to ask some background details, such as whether our dog and various relatives were dead; as so often the case, mum presented well verbally and socially, but what she said and believed was highly delusional – something you would only know by checking the facts.

I was reasonably assured that all was proceeding to plan. The next day, Jenny reported that she had looked in on mum and supervised her eating an early supper, so I felt it was safe to go out for a few hours with friends. Little did I know that mum’s symptoms had been building to an acute psychotic episode…

It was on my way home that I received a call from her Aid-Call alarm service, asking me to ring the police, who were at our house. At the time, all they could tell me was that some neighbours had found mum in distress and called the police to take her home. It was not until later in the week that I learned the full story. 

Desperate to find someone to stay with mum until I could get there, I rang round her close friends and next-door neighbours, who had often helped us in crisis – but they were all away. Social services out of hours were also unable to help, and I could not contemplate sending her anywhere alone in an ambulance. 

By this time, it was nearly midnight and I knew I was over the alcohol driving limit, but even so, I would have set off there and then, had I not needed to speak to the care home manager the next morning, when she was due back. I knew that once I returned to mum’s, all verbal communications would be impossible.

I shall never forget the despair of that night, lying awake waiting for daylight, fearful that mum might go out again in my absence and come to grief. In the morning, as soon as I had spoken to the care manager, I set off, stopping at the petrol station to stock up on food, as I would not be able to leave mum to go out shopping unless someone could sit with her.

En route, I also spoke to the social worker and updated her on events. When I arrived, I found all the curtains drawn, every light in the house blazing. In the living room, a cold cup of tea and plate of toast that I had asked the kind policemen to prepare the night before stood untouched on a side table. There was no response to my arrival. 

I found mum upstairs in bed, totally inert. Momentarily alarmed that she might actually be unconscious, I woke her. She looked at me with no curiosity, as if nothing had happened and I had been there all along.

For the rest of that week until the date of her admission to the home, we were both prisoners in the house. I had arranged for Jenny to come and sit with mum, while I went “to the shops” – in reality, an appointment at the care home, to go through paperwork with the manager. It was a nauseatingly stressful round-trip of a couple of hours, culminating in a frantic “supermarket sweep”, as I had to return with goods to support my cover story.

As the days ticked by, tension mounted. How, how could I ever raise the subject of the impending move with mum? Slipping out for another supermarket trip (covered by the next-door neighbour), I called the home from the car park. The room, they confirmed, would be vacant in a couple of days; ready when you are.  Amid the groceries, I had stashed away toiletries and make-up for mum’s sponge bag; it seemed so pitifully underhand and final. I broke down and sobbed in my car, as boisterous children scooted by on trolleys and mothers loaded their weekly shop. I have lost count of the car-parks and lay-bys I have now wept in.

So how did I do it?  What did I say?  In the end, it was mum who raised it first. Watching TV in silence, she suddenly turned to me and said: “What’s going to happen to me?”  It was a heart-stopping moment.  How did she know?  What did she know? It seemed that somehow, despite having no reasoned knowledge of the situation, she sensed that she was in crisis and that something was afoot.  How could I answer?  I had never lied to her, but neither could I explain the full truth. 

“I think you need to go somewhere, where you can have people around you”, I said.  “People to keep you company when I’m not here and look after you at night, when you get frightened.”  “I don’t get frightened”, she said, despite having repeatedly told me that she was, without ever really knowing why.  Miraculously, we managed to have a tentative discussion along these lines and she didn’t go berserk at me, as I had feared for so long - although there remained an uncomfortable silence at the end. I was hugely relieved to have it out in the open at last.  And yet… 

By the time I had put the kettle on to make a restorative cup of tea, the whole tortuous conversation had of course been forgotten. I would have to broach it again the next day – the very day of the move.

That night, as I lay curled up, weeping, in my bed, mum opened the door and looked at me, strangely dispassionate, more bemused than upset.  “What’s the matter?”, she asked.  “Why are you crying?”  What could I say?  That this was our last night together in our own home?  The house we had moved into in Christmas 1973, when it was new and my father was still alive?  Her last night in the outside world?  The beginning of the end of a relationship that had started with my birth? 

Impatient at my inability to respond, she chided: “Now come on! Stop that.”  Then: “I love you, you know. As if you were my own daughter.” As if? Then who did she think I was?  Were we strangers already?

On the day of the move, I surreptitiously packed an overnight bag, as instructed by the manager - best not to take too many things at once, you can bring in more once she’s settled – and put it ready in the back of the car. Mum came downstairs at lunchtime; I made us something to eat.

I had forwarded her “life story” information (material facts, key events, likes and dislikes) to the home from my phone, filling in the form in my bed overnight. Far from ideal, but the best that I could manage in the circumstances.  I had emailed the social worker to ask if she could stand by to come with me if needed, but she had to be in a meeting that day. All that remained was to get mum into the car.

After lunch, we sat in silence, while I steeled myself to come out with it.  And once again, mum took the lead.  “What are we doing?”, she asked.  “We’re going to look at this place”, I replied.  “What place?”  “A place for you to stay in the week, when I’m not here.  Where they can take care of you…  Shall we go then?  Just have a look?  We can have a cup of tea…?”

And that was my biggest lie.  The only way I knew, to do what had to be done.  “Just a look… Just a cup of tea…”  When I knew it was forever.

She let me zip her into her jacket and got into the car.  The staff, from the manager to the receptionist and finance controller, had been primed to greet her as a visiting guest for tea.  I took her upstairs to the unit at tea-time, and, as instructed by the manager, waited for her to be distracted in conversation, and slipped out quickly without any fuss.  Just like a mother, taking a little child for her first day at school.

A move into residential care is at least as much a watershed for the family carer, as for the person with dementia – and the grief arguably greater, for we know the full story of loss. No-one does this lightly.  One might consider it similar to abortion: a choice you make when it has become the only viable option. A similar stigma, maybe.

To carers, I say it may seem an impossible decision, an overwhelming task.  But sometimes you have to face it and you can survive.

To parents, I say please, please don’t elicit impossible promises from your children; have the courage to confront your own mortality before you lose capacity; have the discussions while you can, be realistic, draw up power of attorney, put some plans of your own in place.

To everyone: don't fear care homes.  The sector is woefully underfunded and undervalued, yes; there are bad homes, true.  But there are also many good ones and wonderful people doing essential work to support the most vulnerable in society.  Don’t let’s stigmatise them. It is not a fate worse than death.

Here are mum and I, as I prefer to remember us, about twenty years ago, outside our home, now sold to pay mum's fees. (Not, by the way, a “mansion”, as so often assumed of those liable for 100% self-funded care at circa £1,000 per week, just an ordinary suburban house.)

So if anyone thinks it’s easy to “put your mother in a home”, read this back. Imagine all those lonely years, when I had dreaded having to break mum’s trust in me, her only child.  I did it to save her. She is still alive today. I have no-one left. 

It will be a long time, if ever, before I can think of August as a happy holiday season.


(This two-part post - read part one here - is a companion piece to an earlier post concerning the issue of "truth-telling" in dementia care.)

"Truth" or "Lies"?

In my previous post I discussed confabulation, a lesser-known variant of delusion or hallucination, which can be experienced by some people with dementia. The challenge these symptoms pose to carers is how best to respond, in order to minimise distress?

Broadly speaking, there are three approaches:

Reorientation: attempting to reassert the factual truth, to override the delusion.

Distraction: changing the subject or focus of attention, to make the person forget the delusion.

Collusion: accepting the delusion and going along with it.

Any one of these approaches may be applied at different times and in different situations with the same person; you may find that one or other is more effective with their personality, or in the context of a particular relationship; and there may be no consistency – what works on one occasion may not on another, even moments later.

In my experience, reorientation is ineffective beyond the earlier stages of dementia; distraction too can be of limited use, if the person with dementia is inclined toward obsessiveness and cannot easily be diverted.

There are also ethical questions involved in each decision, either to disabuse someone of a (perhaps comforting) delusion or to collude with their misconception; and we may consider the significance of whether the respondent is a family member or a professional – in whom do we place greater trust for “truthfulness”?

In summer 2014 I was invited by the Mental Health Foundation to give testimony at their inquiry, Dementia and Truth-Telling. This was a major study into the ethics and practicalities of responding to altered states of perception in those with dementia. I was asked to consider a literature review commissioned by the Foundation, to discuss the contents and make observations from my experience.  

These are my headline points:

“Truth” or “lies”? 

There is of course a wider philosophical question, “what is truth?”, for “truth” as a concept is largely subjective. But for our purposes here, I use the term to mean fact: when responding to a person with altered perception, should we assert fact or not? 

I would say context is key. Acceptance of benign misconceptions can sometimes be justified, if this acceptance allows the person with dementia to feel more content or helps them to be compliant with necessary actions for their material good (e.g. eating/drinking, personal hygiene, medical treatment, accepting admittance to a place of safety, allowing responsible management of their financial affairs) – and if such delusions are not themselves harmful or do not create material difficulties.

For instance, it would not be helpful to collude with a delusion that a friend, family member, or tradesman has stolen from the person with dementia or otherwise done them harm, if there is no evidential basis for this.

Constructive collusion or “white lies” may however be easier and more effective for professionals than for family, because they have no shared personal history to create a knock-on effect. 

Where the carer has an emotional investment in the veracity of what is said - a shared history and ongoing emotional relationship with the person - the issue is much more complex. See my post, It's (Not) So Funny How We Don't Talk Any More.

I cannot see a justified role for proactive lying in daily care – i.e. deliberately creating an untrue version of events for reasons other than the contentment and well-being of the person with dementia. If someone is already experiencing paranoid symptoms and is generally mistrustful, it seems doubly important to me not to give them any cause for justified mistrust, if this can possibly be avoided. 

For that reason, my own approach is largely to be reactive to my mum’s beliefs and expressed thoughts, rather than proactive. If she asks me a direct question, I try to be as truthful as possible, while perhaps omitting or steering her away from the more distressing details of that truth. 

For instance, if she asks where “Daddy” is (either my father or hers), I will say “he’s not with us any more” and hope she will leave it at that. If she goes on to say, “He’s not dead, is he?”, I will say yes, but in as low-key a way as possible. I will not proactively “remind” her, nor make a big deal of her having forgotten, nor go into any details unless asked, as that is likely to distress.

I generally try to accept whatever she believes in the moment, unless it has a negative result for someone else – e.g. an accusation of wrong-doing against an innocent party (myself included).

Emotion is more memorable than fact.

Dementia erodes a person’s capacity for reason, logic, and factual memory. Emotion is what remains. Therefore, a person with dementia will be more likely to register an emotional impression than the factual content of what is said or done. 

Negative emotions, such as fear, anger, hurt are unfortunately more powerful than positive emotions in my experience. My mum will remember being upset far more readily (and for longer) than any pleasurable incident. 

So it’s more important to me to support her in feeling content, than to reinforce any factual message. Whether this involves “truth” or “lies” will vary according to context; the content is relatively unimportant, as it will be instantly forgotten – it is the emotional impression (if anything) that will be retained. 

Powerlessness.

It’s noted in the Literature Review (pgs 22-23) that less time is spent by carers on social interaction than on task-based care. While I would agree that time and resources are the main determinants here, particularly for professionals, I would suggest that a feeling of being powerless to ameliorate mental distress is also a factor.

Beyond a certain stage of dementia, it seems that nothing can truly answer the fear, hurt, and loneliness in a person’s head, because it is impossible to reason away fears, and efforts at emotional comfort are limited by the difficulty of being unable to acknowledge the truth of distressing life circumstances. 

Therefore the family carer may tend to focus on practical things, as these are elements where some positive difference can be made.

Contented Dementia/Compassionate Communication: effect on family carer.

The principles of contented dementia and compassionate communication are now routinely espoused in public (in media, specialist literature/websites, and by some professionals), to the extent that dissent can be perceived as unacceptable.

These principles can roughly be summarised in layman’s terms as: don’t ever argue with or contradict the person with dementia; enter into their reality and accept that they can’t enter yours.

While I would agree that this approach can be helpful in promoting contentment in the person with dementia, I think the potential negative effect on the family carer is largely unacknowledged. 

If, as the primary carer, you feel constantly told by everyone that your reality does not matter, it can seem tantamount to being told that you don’t matter; and any distress, frustration, grief, or resentment you may feel is selfish, ignoble, and to be stifled, because it is “bad for” the person with dementia.

This can be hugely destructive to the carer’s mental (and indeed physical) health. It can lead to the carer effectively living under similar conditions to those of domestic abuse: e.g. always subservient, walking on eggshells for fear of upsetting the other person, constantly censoring or modifying their own words or behaviour, denying their own needs, isolated from wider family and friends (of whom the other person may be jealous or mistrustful), and trapped in the house (by the other person’s separation anxiety or paranoid fears). 

A constant negation of the primary carer’s factual reality can lead to their feeling that they have been “erased” from the outside world. This can be mitigated to some extent by other family and friends supporting the carer’s “real” life; but for a sole carer in a domestic setting, the long-term effect can be catastrophic.

I would like professionals (and lay commentators) to acknowledge these issues and consider the holistic good of both parties, when advocating the principles of “Contented Dementia” in the home. 

See my posts, Paranoia - and the Other Fear That Dare Not Speak Its Name and A Stranger in My Home Town.

Environmental "Lies"*.

In recent years, artificial retro environments have become fashionable in some care homes and developments. I can see that it's a positive approach to try to accommodate and support the perceptions of the resident; and artefacts from the time of a person's youth may create a familiar ambience and trigger memory for some people some of the time.  

But I'd beware of investing too much (effort, faith, and finance) in such things, as they can become management gimmicks, not truly responsive person-centred care - which primarily requires human interaction.  A "one-size"  time-zone (e.g. 1950s street) is unlikely to chime with the mindset of all the residents all of the time - there may be a range of ages within a residential group, and even for the individual, different eras may be important (or conversely meaningless or disturbing) at differing stages of their condition.  And how often can a home afford to update decorative features in response to changing social needs, when most now struggle to meet daily running costs?  

Given how hard it is to second-guess a person's internal reality in the moment, it's really not possible to create a consistent (and future-proofed) "alternative reality" that will answer all the confusions and insecurities attendant on dementia; and a fake environment, however well meant, is fundamentally dishonest.

My Biggest Lie.

I have said that I don’t proactively lie, only “collude” or lie by omission when necessary for mum’s peace of mind. But there was one very big exception, which posed a terrible dilemma for me.  I’ll return to that in another post…

* This point added in March 2017.