Saturday, 22 August 2015

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.)

My Biggest Lie: Part 1

I have put off writing this for a long time – an episode I’d rather forget. But as August has come around again, the city familiarly desolate, friends posting happy family snaps from far-flung beaches and villas, I find myself back in the bleak summer of 2011: the year I put my mum into care.

Ever since I was a little girl, mum had said to me, “never put me in a home”.  It became a mythic dread, a calamitous fate I would do everything in my power to avoid; but even then, at the age of seven, eight, or ten, I was reluctant to commit myself to a promise. Another little girl would perhaps have said “promise”, knowing this was what a beloved mother wanted to hear and hoping the word would be enough; but as a serious and scrupulously honest only child, even then I sensed it might be too big a guarantee – and if I didn’t know for sure that I could keep my promise, I could not say the word.

What I do know is that mum had never imagined the situation we would face in that summer of 2011, when she was almost eighty-five. Her own parents had both died of acute illness in their early seventies, her mother of cancer, her father of a heart attack six weeks later. My father too died of cancer, at the age of only fifty-two, when I was a student. Shocking, yes; traumatic, certainly.  But not protracted, nor degrading. Morphine for pain relief brought hallucinations, but, though distressing, these were temporary – they did not fundamentally change the personality of those we loved or our relationship with them; both my grandparents and my father were still themselves when they died, cognisant of us and of our love for them.

(Tellingly, when my grandmother was diagnosed with inoperable stomach cancer back in 1978, mum begged the doctors not to tell her, arguing that she would “give up”.  So both medics and family were forced into a deception that she merely had “kidney stones” and “a fissure of the bowel”, from which she could in time recover - rather than an untreatable terminal illness, that in fact killed her eight months later. 

Even as a twelve-year-old, I thought mum was wrong: my grandmother, a highly emotional person, would undoubtedly have been devastated by the news, but she was not cognitively impaired – she could have understood, if not come to terms with it.  And as a family we would not have had the added burden of secrecy; we would have been able to plan for her care and that of my grandfather, whom the rest of us knew would soon be widowed.

Mum, in my view, deluded herself that “not giving up” could cure her mother of an organic disease that had already spread unstoppably through her body.  This starkly illustrates the difference in personality between us: she was an escapist, who thought that if you ignored problems, they would somehow go away; whereas I have always been a realist – equally upset by bad news, but believing that you have to face it, in order to deal with the practical consequences.  All this came into play in the dilemma I faced in 2011.)

Mum remembered her grandmother who, with hindsight, had dementia.  But “Nain”* Thomas had lived in a mountain village in the early years of the 20th century, where doors were left open, everyone knew everyone and could guide a confused elderly lady gently home - and, crucially, families were large and women stayed at home. There was always a daughter or a sister, a niece or daughter-in-law at hand; and living into very old age with multiple health problems was comparatively rare. 

So mum’s impression of her grandmother’s condition was benign -  affectionate anecdotes of mildly “dotty” behaviour, remembered from her distant childhood.  She had never herself witnessed the more extreme symptoms of late-stage dementia, much less had to cope with them as sole carer; and all those years ago, when she had said “never put me in a home”, she had not known anyone to whom that had actually happened, nor understood why it might.  She had no template for decades of chronic degenerative disease or of bed-bound dependency, believing that “one day I’ll just pop my clogs”. She could not know what she asked of me.

I have written elsewhere about the long progression of her own dementia – twenty years or more from the earliest symptoms to present date – and the blunt reality of end stage needs.  By 2011, mum was almost completely unable to take care of herself, yet equally unaware of that incapacity.  There is a name for this: anosognosia – commonly known as “lack of insight” or “lack of awareness”.  It is a clinical condition, resulting from brain damage (caused by trauma, stroke, or disease), which renders a person unable to acknowledge that they are experiencing disability. 

I didn’t know this. So for many years l had struggled to support mum on my own (often against fierce antagonism from her), desperately hoping and believing that surely one day, when things got bad enough, she would have to admit there was something wrong and accept professional help. But that day never came. It never could, because she was not “in denial”, as I thought – the brain damage that caused her symptoms of dementia also prevented her from recognising them. As far as she was concerned, she was absolutely fine; I was the one behaving strangely. 

So it was not until the previous autumn of 2010 – after another dreadful August that brought her into the general hospital – that she had finally been referred to social services at my request. I had been finding it increasingly hard to cope, and hoped the hospital admission would pave the way for regular home support. But anosognosia struck once again. Mum discharged herself early and refused the hospital’s follow-up services.

Already at breaking point, I persisted behind the scenes, and mum was later assigned a social worker, occupational therapist, and consultant psychiatrist from the community mental health team; but because she did not accept that she had any problems, all these professionals had to tread softly, in order for her to accept them. 

She would not attend clinics, for instance, so they had to visit her at home, alongside familiar community nurses from the GP’s Older Adult Nursing Team, giving the impression that they were all routine “health visitors from the surgery”.  Even then, she would not always let them in and rejected all their suggestions; there was little they could do. 

(She would not agree to any kind of formal testing, so diagnosis could only be made by the psychiatrist’s informal observations, and was not registered until the following autumn of 2011, when I had to apply for legal authority to manage mum's affairs.)

The social worker, to whom I shall always be grateful, put me in touch with a wonderful independent care-worker, Jenny, whom I engaged to visit mum a couple of times a week – just to look in and make sure she was safe, help her to prepare a hot meal, and get to know her, with a view to introducing daily care in due course. 

First signs were encouraging; mum warmed to Jenny. But from spring 2011, her symptoms dramatically escalated, repeatedly putting her at risk, and it became clear that she needed 24-hour care that no one person could provide.  The social worker urged me to seek a residential place, but although I agreed this was now the only practical solution, I just could not see how to achieve it. 

Wasn’t this mum’s greatest fear? The very thing she had always warned me against?  Bad enough to go against her wishes; but, given that she believed there was nothing wrong with her at all, how could I even broach the idea of moving her out of her own house, to end her days in a “home” - let alone actually get her to go there?  It seemed insurmountable. 

By the summer, however, I was shocked to realise that she no longer recognised our family home, where she had lived for nearly forty years; she couldn’t remember which of the two main bedrooms was hers, or recall any room on the other side of a door.  Distressed by the apparent “strangeness” of the place, she obsessively packed shopping bags to flee, sometimes sallying forth at night to try and get her bearings.  I knew then that the home she had loved was no longer a cherished sanctuary, but a frightening jail to her; and if it was not a comfort, nor even familiar, would she not at least be physically safer in care? 

So in that terrible summer of 2011, I began my lonely and frantic search of care homes.  Lonely, because I could not consult mum about it or involve her in this, the biggest choice I would ever have to make; and frantic, because I had to contact and visit all these places in snatched moments, behind her back, en route between my flat and our family home, a hundred miles away. 

Novelist Penny Hancock has written about the heartbreak and guilt of choosing a care home with her mother, and writer Pippa Kelly has detailed a similarly harrowing experience alongside her father and siblings. Imagine the pain of having to do it alone in secret, bearing sole responsibility for that decision.

I soon discovered that residential care for those in the mid stages of dementia (as mum then was) is the hardest to find, as most homes cater either for early stage (where residents are still mobile and sociable, and don’t require secure, key-pad entry/exit or all-day supervision) or late stage, where they are mostly bed-bound, in receipt of nursing care. 

This narrowed down the options considerably (something I may discuss in a future post), but I was lucky to secure a provisional place in an excellent specialist unit ten minutes from our family home – by that time, mum could barely endure a twenty-minute journey in the car, so even if I had been able to find a suitable home near me in London, it would have been far too traumatic a move.  The problem remained of how to persuade her. 

With no other immediate family, I knew I would have to do this alone. I considered involving one or two of her close friends, but decided it was too big a request, as I wanted mum to maintain a positive relationship with them in future.  I canvassed the professionals for advice on how to open the discussion with her, but they admitted that, given both her lack of insight and lack of short-term memory (that meant any conversation would instantly be forgotten) there was no easy answer. 

The only practical suggestion, which totally shocked me, was this: as mum and I had been accustomed to going out for lunch and still managed this occasionally, if the worst came to the worst, I might have to take her out one day for our usual pleasant meal and then drive her straight to the home.  Unimaginably brutal!  How could I possibly do that to my mum? 

With any other illness or disability, you would of course expect to plan such a major life change openly and equally with the person needing care over a gradual time-scale, take them to look at potential homes, and help them to make the choice.  But dementia is not like other disabilities: anosognosia, paranoia, confabulation, delusion, and hallucination (all of which mum experienced) are mind-altering symptoms that trample the parameters of judgment and normal social exchange.  And sometimes they confront us with terrible decisions and actions that would otherwise be unconscionable, in order to safeguard our loved ones.

The social worker offered to come with me on the day if I couldn’t manage, and I was glad of this notional support, although wary that her unaccustomed appearance at our house might inflame an already volatile situation. I had reserved the only available room in the unit, and knew that if mum didn’t take it up on the due date, we might lose the chance of a place in the best home in the district, the only one I considered to be at all suitable. With this date fast approaching, I still had no idea how I was going to effect the move. 

Could I go through with it? Wracked with guilt at the impending betrayal of mum’s lifelong trust, I became physically sick with apprehension.  But one final, awful incident just after the August Bank Holiday convinced me I could not turn back: whatever it took, I had to get mum into the home…

Continued in Part 2

* Welsh for grandmother (pronounced "nine").

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

Monday, 6 July 2015

An Economically Viable Unit

I woke this morning to news of an Alzheimer's Society report that states that over 50% of GPs think that patients with dementia don't get enough support from the NHS, and 67% think those patients don't get enough support from Social Services. (The NHS budget being ring-fenced, while the social care budget - encompassing most of those living with dementia - is not.) 

This is not news at all to anyone living with dementia or their family carers.  But still.  It has made headlines and people are talking - indeed arguing - about it on social media.  And of course money is at the root of it.

In response to a long exchange with someone on Twitter, who argued (in somewhat extreme terms) that the "greater good" of economics is always more important than personal need, here is my dramatic riposte:


The CELEBRANT addresses a gathering. At his/her side, a couple (FATHER and MOTHER, MOTHER and MOTHER, FATHER and FATHER, TRANSGENDER PERSON/S or any state-sanctioned combination of the above; we shall call them “MOTHER” and “FATHER”), with a BABY.


Welcome, friends, to this happiest of days! We are gathered here, in the sight of state sanction, to celebrate the arrival of a brand new Economically Viable Unit.

Smiles and a smattering of applause.

Would the Genetic Donors of the Unit step forward please?

The COUPLE steps forward.

You are the registered Genetic Donors?

We are.


Do you have your certificates of Economic Viability?

We do.

They proffer two certificates. The CELEBRANT peruses them.

I see you have a period of two months out of employment in the last ten years?


It was before the new rules came in…
2015: I was made redundant, in the cuts...


Redundancy is no excuse; you were evidently deemed unviable at that place of work -


- It was 2015! Before the rules came in. You’ve got to take that, by law!

(beat; concedes)
Quite right. Rules are rules.
You, however, have reduced Viability Points -


- Because of the baby -
(corrects; hasty)

Sorry, Unit. I took the minimum time off, just the afternoon, but I had to physically be in the hospital because there were complications -


- The Unit is not healthy?


No! Yes! She’s healthy! Nothing wrong with her now!

Silence. Tension. Worried looks all round.


Please? She is Viable. At least as a future Genetic Donor and Incubator -


- Supporting the economy with future tax-payers, increased GDP.


I know I’ve got to take a hit on Viability myself, but that’s my choice, don’t take it out on her.

A long beat. The CELEBRANT considers.


All right. Let us proceed. You have a name?



We’ve always been supporters of government economic policy.

The CELEBRANT raises an eyebrow.

(rises in testimony)
They have, they have! Praise be!

Very well. Surname?


A look from the CELEBRANT.


It’s an old family name. We got a dispensation to keep it -


- We paid the dispensation fee.

(nods, dismissive)

Another COUPLE steps forward.

Do you both, jointly and severally, undertake Sponsorship of this Unit, Prudence Goodheart?

We do.


Socially, morally, legally, and financially?

Discomfited looks between them.

(bit less sure)
We do.


To be a guarantor, from this day forth, should the said Unit encounter difficulty in meeting approved behaviour, placing Viability at risk?

... I guess so...

The CELEBRANT looks to SPONSOR 2, who hesitates.


The terms of the contract have been explained?

SPONSOR 2 shrugs, uncomfortable.

It was all in the small print. You cannot claim to have been mis-sold? Because you had the statutory fourteen days “no quibble” cancellation period.

MOTHER and FATHER cast a desperate look. A beat.


Yeah, I get it. It’s cool.

The CELEBRANT takes up a register.


You, the registered Sponsors, agree to guarantee the continued Viability of this Unit, throughout its lifetime (or yours, whichever should end sooner); to maintain a healthy lifestyle commensurate with Economic Viability, to fund support of the Unit during any periods of Unviability or to arrange private funding for such at your discretion -


- Now, wait a minute. How long does this “funding” go on for?


It’s all in the T&Cs. In coming here today, you have entered into the contract.


I came to support my mate’s kid. She’s cute. I thought I’d pay for her Prom or something, maybe chip in for driving lessons or Uni fees, if I can afford it by then and I don’t have kids - sorry, Units - of my own; but a whole lifetime...?


The terms are quite clear. There’s been a multi-million cross-platform government campaign. If you have not familiarised yourself -

- It’s cool.
(to SPONSOR 1; hisses)

Let’s just get on with it and get down the pub, OK?

No, but -


- Please! We can’t do it without you. We need her to be on the Register.

But we’ll talk later, right? Do a deal?


You can make whatever arrangement you like between yourselves, so long as government requirements are met and you claim nothing from the state. You mind your own business, we mind ours.


Go on, please. We’ve only got this building for a one-hour slot; there’s penalties...


Just cut to the chase. I could murder a pint.


You, the Registered Sponsors, or any Deputy Sponsor you assign to take on your responsibilities in the event of your prior demise or incapacity, agree to notify the authorities at once and without delay of any ongoing and irreversible Unviability - including, but not confined to, persistent vegetative state, quadriplegia, multiple loss of communicative senses, incurable brain injury, genetic mental defect, or any form of dementia.
(proffers register)
Sign here.


My mum’s got dementia...


(a look)
Have the authorities been informed?

It’s a different case, not your remit -


- You didn’t hear that, OK?
(re SPONSOR 2)
She was confused -

- Not “confused”! There’s nothing wrong with my Viability!


This notification thing? What actually happens? When you give notice?

Then we come.

And do what?

Euthanise the Unit.

It’s all in the T&Cs - and the government campaign. You must know? That’s the basis of our existence: an Economically Viable Unit.
Sign here?