An Act of Remembrance - Update 2019

This Mother’s Day – just like every other day of the year – I’ll be thinking of my lovely mum, Glenys, who has lived with dementia for over twenty years. She’s in residential care now in my home town, and I’ll visit her on the day, as I do most weekends and public holidays. For many years, until 2011, I was her sole carer in our family home and by distance during the week (my own flat being 100 miles away in London).  

I’m a drama scriptwriter by profession, and in May 2017 my play The Things We Never Said went out on BBC Radio 4, starring Lia Williams and Siân Phillips. It later won the Writers' Guild Best Radio Drama Award 2018. In the past, mum would have been thrilled to share such news, would have tuned in with excitement, and called me after to enthuse about the production. Even if it was not to her taste, I suspect she would have praised it anyway – for I was her beloved daughter.

Today there is none of that. Mum has never heard the play or even known it was on; I didn’t tell her, as I knew it would mean nothing. And yet it’s all about her, about “us” – the people we were, and the strangers we have become. I have written before about that journey of unknowing, the subtle, devastating difference between recognition and connection; mum and I have now drifted even further apart. 

Such fracture would have been unthinkable to either of us twenty years or more ago. Both only children (mum widowed, I single), we were each other’s only immediate family, each other’s best friend. But somehow, in those twenty years, the umbilical cord of all our life’s experience started to detach.

Mum has been in care for over seven years now, in two different homes. The rupture began long before that. I see it now, in odd, malevolent looks she would sometimes cast me, as we sat at home watching TV; in strangely inappropriate gifts, more suited to a child; in wild rages and accusations of uncharacteristic vitriol; in the bewilderment on her face, when I let myself in with my key. Now I see: already, she didn’t know who I was.

Back then, in our family home, she still had the social facility to cover it up, pretend to be “au fait” (one of her favourite phrases). She took her cues from the context: this woman is in the house; she knows me; I must know her. And (crucially) there’s no-one else here…  

Looking back, I realise that around this time she stopped driving conversation. Always a prodigious and entertaining talker, she became not mute, but unusually tight-lipped. As if there were some passive-aggressive sulk going on beneath the surface – a silent antagonism that said I had done her some inexplicable wrong. When I served her meals, she would thank me courteously, somehow too polite, ingratiating almost; and as she ate, she might look up now and again and comment, “this is very nice, thank you”, with a gracious nod of the head. I couldn’t put my finger on it at the time, but now I see: she was addressing me as a waitress.

Yet this unspoken estrangement didn’t make her less dependent on me. On the contrary.  She became unbearably clingy. Increasingly unsteady on her feet, she would refuse a stick on trips out, preferring to clutch limpet-like to my arm. At home, I could hardly leave the room by myself, let alone the house. On days when I had to drive back to my own flat in London, it would take until mid-afternoon to extricate myself from her maddening ploys to stall me. As I finally pulled away down the road, I would find myself screaming in the car.

My mother’s as-yet-undiagnosed condition trapped us both and locked us away from the world. Her intense, suffocating neediness convinced me that I was uniquely necessary to her and any attempt to regain my own independence would mean abandonment of her. It caused terrible guilt and trauma when those needs became too great for me to manage alone and I had to place her in care. I feared she would never settle, the distress would be too much. But in fact she has done well.  

She needed someone with her 24/7. She needed someone. She didn’t need me.  

In those latter years in our own home, mum relied on me not as myself, as “Ming”, or even her daughter; she relied on me as her carer (though she never saw it as that) - the person who shopped, and cooked, and cleaned, did the washing, managed the builders, handled the boring finance and admin; the person who always came when she called, who generally kept her alive. She relied on me, just as I had relied on her as an unknowing helpless baby. That most primeval impulse: to reach out to the one who nurtures, cry out in the darkness for “Mummy!”

Rewind a decade or so, to when I worked on the TV series EastEnders. Each new episode of mine would delight her, long after I’d become blasé. She’d call her friends, tell shop assistants, write proud notes in her diary: “Ming’s EastEnders today!  Very good!!” A few years on, things had changed, although I didn’t understand it then.

One Saturday night, I was visiting for the weekend and had an episode of Casualty on. Mum showed no interest in the programme. In fact, she paid no attention – just carried on with her crossword, talked all through the dialogue, dozed off for a while. And when it was over, nothing. I was hurt, I have to confess. (OK, so it’s not Shakespeare, but come on, you’re my mum!) I too said nothing, though. What could I say? I told myself she was getting on and could be forgiven for dozing off; and it was just another episode of soap. Not big news any more…

A few months later: another episode of something. This time, I was in London.  As the credits rolled, the phone rang. It was mum, as usual. But she didn’t mention the show. We chatted for some time, and finally I asked, “Did you see it then?”  “See what?” I named the programme. “Oh, yes”, she said flatly. “Well, what did you think?” A long, blank pause. “Not much”, she said at last.  “Stupid story, wasn’t it?” 

By then, I realised she had forgotten that any of these programmes were anything to do with me, if she was aware of them at all.  She didn’t mean to be unkind. But still it did hurt. Because I had to ask myself, are these her honest thoughts? Is this what she really thinks of my work, stripped of motherhood’s indulgence?  

For her first two years in care, this encroaching “unknowingness” existed alongside our old relationship. She would not remember the context of my life or our relationship outside my visits, or the visits themselves once I’d gone. But in the bubble of those few hours over lunch and then tea, we were still mother and daughter – even if, in her eyes, I was the former and she the latter.  

Christmas 2013 marked another watershed. Each week, I would find mum in the lounge, already seated at the table by the staff for me to join her for our lunch.  Her mobility now greatly impaired, she had acceded to a wheelchair in recent weeks, so I was doubly surprised to meet her walking (stick-less!) toward me down the corridor from the lounge. I went to take her arm, and instinctively she recoiled, her face aghast with mistrust. “What’s the matter?”, I asked. But as I said it, I knew. “It’s me”, I said. “I’m Ming.”  “Ming?”, she said, bewildered. “Oh, Ming…”  It did come back, but I knew: out of the familiar context of the lounge, I could have been anyone.  

I hugged her to me; she hugged me back with skeleton arms. “Don’t forget me”, I pleaded - though I knew I shouldn’t, it wasn’t a promise she could give.  “Please, don’t forget me!”  “How could I forget you?”, she said. “You’re my Ming.  You’re my little girl.”

But by the spring of 2014 she had.

So where are we now? What am I to her? The harsh truth is probably nothing.  She has not just forgotten me as the person I am today - she has no memory of the young woman I was, the teenager, the little girl, the baby in her arms. She does not believe she ever had a daughter.

Yet dementia is not a one-way street; it has countless meandering byways. Up to a couple of years ago, mum might greet me with pleasure on a good day and say I was “a lovely girl”, regardless of who I was.  On a bad day, I’d be met by antagonism or just a blank. Sometimes she’d still call me by name, as if I’d just stepped out for a moment and we could pick up where we left off. But there was no longer any root to that knowledge; it was no more than a reflex – and now even that much has gone. Her eyesight declining, she barely registers my presence at all.  

Her speech too, once so animated, is now eroding, along with the context that had long preceded it. Over the years, I had grown to accept that attempts at conversation must be on her terms, referencing her life before I was born. Now even those memories of her youth, the stories she told me about herself, are remembered only by me. What she yearns for most are her parents – and I can’t give her that.

So I put on a CD; TV has long since become too confusing. She still enjoys music, though not necessarily the same kind as before. I bring flowers, feed her fruit and cake, make her a cup of coffee; she used to drink tea like me, but so many tastes have changed…

As dementia shrinks down your world, small pleasures become more precious.  Very occasionally in recent years, I have been able to wheel mum down to the garden in fine weather. I treasure those rare occasions when she can still enjoy the breeze, the birds, the warmth of sun on her face. I enjoy them too. But I can’t say we do it together. Side by side we are separate now. I miss the light of connection in her eyes.

Some time ago, I had a review with the Office of Public Guardian Visitor, who supervises Court of Protection Deputies like me, who manage the financial affairs of a person lacking capacity. As we went through the bank accounts, he asked me why I visited my mother so often (it’s a two-hundred-mile round trip).  I was taken aback. Surely it’s obvious? She’s my mum. She’s over ninety, with advanced dementia; I’m her only family. Yes, but what is the purpose of these visits, he persisted?  

I have to see how she is, I said; to make sure she’s all right, that she has everything she needs. You could do that by phone, he said.  Some deputies visit only once a year. I was perplexed at this approach. She’s forgetting me, I said; I come as often as I can to keep up the connection…

Is that for her though, he asked; or is it really for you?  

Afterwards, I realised that he wasn’t criticising me, merely pointing out the distinction between my legal obligations as deputy and the personal actions of a daughter. But it gave me pause for thought.  

Each week, I drive down past the country pub where we used to go for Sunday lunch; the garden centre where we spent many a happy afternoon, choosing bedding plants and hanging baskets; the park we used to pass every day on the way to school, where families walk their dogs. It’s as if I’m driving past our old life and it won’t let me in.  

Intimacy has gone; our shared history is erased.

My mother is not dead, but I mourn her every day. I mourn myself too, and that long-gone life we shared. But I will never abandon her. I will never give up. So long as she is still there, I will always continue to visit. Why?  

Because I love her; and I know that she loved me. I do this as an act of remembrance.

Cake: Dunn's Bakery, Crouch End, London

If you are caring for someone who has moved into residential care or is facing that transition, charity Dementia Carers Count offers support tailored to this stage of the journey and end of life issues, among its range of core resources for friends and family carers of people living with dementia. Contact them for details. 

My play, The Things We Never Said, is not currently on BBC Sounds, but can be downloaded to read from the BBC Writersroom Drama Script Archive.  You can also hear an extract from the radio production and discussion on BBC Radio 4’s Fortunately podcast with Jane Garvey and Fi Glover (@ 10’ 33”).

This updated post was published on the Dementia Carers Count website in three parts for Mother's Day 2019: 

Part 1

Part 2

Part 3

[Update 2020: Mum died in January 2020. We were fortunate that it was before the restrictions of COVID-19 and I was able to be at her side, day and night, for two weeks before she died. At peace, at last.]

An Act of Remembrance

On Thursday, 11 May, my play, The Things We Never Said, will go out on BBC Radio 4, starring Lia Williams and Siân Phillips.  In years gone by, mum would have been thrilled to share such news, would have tuned in with excitement, and called me after to enthuse about the performance.  Even if it was not to her taste, I suspect, she would have praised it anyway – for I was her beloved daughter.

This time, there will be none of that.  Mum won’t listen, or even know it’s on; I won’t tell her, as it will mean nothing.  And yet it’s a play all about her, about “us” – the people we were, and the strangers we have become.

I have written here before about that journey of unknowing, the subtle, devastating difference between recognition and connection; mum and I have now drifted further apart in that bleak and lonely landscape… 

Such fracture would have been unthinkable to either of us twenty years or more ago. Both only children (mum widowed, I single), we were each other’s only immediate family, each other’s best friend.  But somehow, in those twenty years, the umbilical cord of all our life’s experience started to detach.

Mum, as I best remember her... (Me, behind in the mirror)

Mum has been in residential care for over five years now.  The rupture began long before that.  I see it now, in odd, malevolent looks she would sometimes cast me, as we sat at home watching TV; in strangely inappropriate gifts, more suited to a child; in wild rages and accusations of uncharacteristic vitriol; in the bewilderment on her face, when I let myself in with my key.  Now I see: already, she didn’t know who I was.

Back then, in our family home, she still had the social facility to cover it up, pretend to be “au fait” (one of her favourite phrases).  She took her cues from the context: this woman is in the house; she knows me; I must know her.  And (crucially) there’s no-one else here… 

Looking back, I realise that around this time she stopped driving conversation.  Always a prodigious and entertaining talker, she became, not mute, but unusually tight-lipped.  As if there were some passive-aggressive sulk going on beneath the surface – a silent antagonism that said I had done her some inexplicable wrong. 

When I served her meals, she would thank me courteously, somehow too polite, ingratiating almost; and as she ate, she might look up now and again and comment, “this is very nice, thank you”, with a gracious nod of the head.  I couldn’t put my finger on it at the time, but now I see: she was addressing me as a waitress.

Yet this unspoken estrangement didn’t make her less dependent on me.  On the contrary.  She became unbearably clingy.  Increasingly unsteady on her feet, she would refuse a stick on trips out, preferring to clutch limpet-like to my arm.  At home, I could hardly leave the room by myself, let alone the house.  On days when I had to drive back to my own flat in London, it would take until mid-afternoon to extricate myself from her maddening ploys to stall me.  As I finally pulled away down the road, I would find myself screaming in the car.

My mother’s (as yet undiagnosed) illness trapped us both and locked us away from the world.  Her intense, suffocating neediness convinced me that I was uniquely necessary to her and any attempt to regain my own independence would mean abandonment of her.  It caused terrible guilt and trauma when those needs became too great for me to manage alone and I had to place her in care.  I feared she would never settle, the distress would be too much.  But in fact she has done well. 

She needed someone with her 24/7.  She needed someone.  She didn’t need me. 

In those latter years in our own home, mum relied on me not as myself, as “Ming”, or even her daughter; she relied on me as her carer (though she never saw it as that) - the person who shopped, and cooked, and cleaned, did the washing, managed the builders, handled the boring finance and admin; the person who always came when she called, who generally kept her alive.  She relied on me, just as I had relied on her, as an unknowing helpless baby.  That most primeval impulse: to reach out to the one who nurtures, cry out in the darkness for “Mummy!”

Rewind a decade or so, to when I worked on the TV series EastEnders.  Each new episode of mine would delight her, after I’d become blasé.  She’d call her friends, tell shop assistants, write proud notes in her diary: “Ming’s EastEnders today!  Very good!!”  A few years on, things had changed, although I didn’t understand it then.

One Saturday night, I was visiting for the weekend; we’d gone out early to eat.  I had an episode of Casualty on and wanted to get back quickly to watch.  Mum showed no interest in the programme.  In fact, she paid no attention – just carried on with her crossword, talked all through the dialogue, dozed off for a while.  And when it was over, nothing.  I was hurt, I have to confess.  (OK, so it’s not Shakespeare, but come on, you’re my mum!)  I too said nothing, though.  What could I say?  I told myself she was getting on and could be forgiven for dozing off; and it was just another episode of soap.  Not big news any more…

A few months later: another episode of something.  This time, I was in London.  As the credits rolled, the phone rang.  It was mum, as usual.  But she didn’t mention the show.  We chatted for some time, and finally I asked, “Did you see it then?”  “See what?”  I named the programme. “Oh, yes”, she said flatly.  “Well, what did you think?”  A long, blank pause.  “Not much”, she said at last.  “Stupid story, wasn’t it?”

By then, I realised she had forgotten that any of these programmes were anything to do with me, if she was aware of them at all.  She didn’t mean to be unkind.  But still it did hurt.  Because I had to ask myself, are these her honest thoughts?  Is this what she really thinks of my work, stripped of motherhood’s indulgence? 

Now I visit her in the care home most weekends.  For the first two years, this encroaching “unknowingness” existed alongside our old relationship.  She would not remember the context of my life or our relationship outside those visits, or the visits themselves once I’d gone.  But in the bubble of those few hours over lunch and then tea, we were still mother and daughter – even if, in her eyes, I was the former and she the latter. 

Christmas 2013 marked another watershed.  Each week, I would find mum in the lounge, already seated at the table by the staff for me to join her for our lunch.  Her mobility now greatly impaired, she had acceded to a wheelchair in recent weeks, so I was doubly surprised to meet her walking (stick-less!) toward me down the corridor from the lounge.  I went to take her arm; and instinctively she recoiled, her face aghast with mistrust.  “What’s the matter?”, I asked.  But as I said it, I knew. “It’s me”, I said. “I’m Ming.”  “Ming?”, she said, bewildered.  “Oh, Ming…”  It did come back, but I knew: out of the familiar context of the lounge, I could have been anyone. 

I hugged her to me; she hugged me back with skeleton arms.  “Don’t forget me”, I pleaded - though I knew I shouldn’t, it wasn’t a promise she could give.  “Please, don’t forget me!”  “How could I forget you?”, she said.  “You’re my Ming.  You’re my little girl.”

But by the spring she had.

So where are we now?  What am I to her?  It’s impossible to say.  Dementia is not a one-way street; it has countless meandering byways.

On a good day, mum will greet me with pleasure and say I’m “a lovely girl”, regardless of who I am.  Sometimes she’ll call me by name, as if I’d just stepped out for a moment and we can pick up where we left off.  But there’s no root to that knowledge.  It’s no more than a reflex.

We don't talk much; I have to accept it must be on her terms, her life before I was born.  Now even those memories of her youth, the stories she told me about herself, are remembered only by me.  What she yearns for most are her parents – and I can’t give her that.

So I put on a CD; TV is too much stress.  A former singer, she still enjoys music, though not necessarily as before.  I bring flowers and cake, make her a cup of coffee; she used to drink tea like me, but so many tastes have changed…

There are things for which to be thankful.  As dementia shrinks down your world, small pleasures become more precious.  If the weather’s fine, I might wheel mum down to the garden and we’ll sit out there for a while.  We’ve only been able to do this a few times since last spring; she was bed-bound for eighteen months before.  So I treasure those rare occasions when mum can still enjoy the breeze, the birds, the warmth of sun on her face.  I enjoy that too.  But I can’t say we do it together.  Side by side we are separate now. 

This picture was one of those “good days”.  Dressed in her favourite bright pink jumper, hair newly washed, mum looks animated here, caught in mid-conversation.  Except she isn’t talking to me.  Her incessant stream of whispered monologue is directed at a person on the other side of her, whom only she can see.  Her hair looks nice; the staff have blow-dried it with care.  But it’s not her style, the mum I used to know; and if she looks at me, it’s with a stranger’s eyes…

The other week, I told a friend how hard I find this now - to see mum looking so changed.  “She’s ninety”, said my friend, “no-one looks the same”.  But it’s not just the physical change.  I look at other friends’ mothers of a similar age: white-haired, yes, and frailer, but still emphatically themselves.  Hairstyle, clothes, and make-up are only part of the equation.  I miss the light of connection in her eyes.

Another garden afternoon: mum is oblivious to me

We don’t share lunch any more.  Mum eats little and early.  I bring a sandwich to eat in her room; and in the awkward intimacy of that act, each bite audible in the silence, she watches me with something approaching distaste.  The mechanics of eating are not pretty, I admit.  Yet such clumsy-grotesque bodily function can be endearingly familiar in those we love.  Her distaste tells me I am no longer of her flesh.

On a bad day, she won’t engage with me at all.  Sometimes barely awake, others alert with antagonistic spark.  Last week, for something to say, I showed her a photo of us together that I’d glued to an Easter card (the written word mere hieroglyphics to her now). “I’m not interested!”, she said and batted it away.  On days like these, anything I say, everything I try, will be met with a blank, a dismissal – at best a humouring nod. 

That day, I slipped out early.  Across the fields at the back of the home, lambs bleated in the distance.  I walked down to take in the view; sat for a few minutes, breathing in the peace and cool air before my long journey back to the city.  How strange, I thought, to be sitting here on my own, while behind me there’s mum’s window, and behind that she will be sitting alone there too, oblivious to my presence a few short metres away. 

A couple of months ago, I had a review with the Court of Protection Visitor, who supervises appointed Deputies like me, who manage the financial affairs of a person lacking capacity.  As we went through the bank accounts, he asked me why I visited my mother so often (it’s a two-hundred-mile round trip).  I was taken aback.  Surely it’s obvious?  She’s my mum.  She’s ninety, in end stage dementia; I’m her only family. 

Yes, but what is the purpose of these visits, he persisted? 

I have to see how she is, I replied; to make sure she’s all right, that she has everything she needs.  You could do that by phone, he said.  Some deputies visit only once a year.  (If you are in care with no immediate family, your deputy may be a distant relative or legal professional.)  I was perplexed at this approach.  She’s forgetting me, I said; I come as often as I can to keep up the connection…

Is that for her though, he asked; or is it really for you? 

Afterwards, I realised that he wasn’t criticising me, merely pointing out the distinction between my legal obligations as deputy and the personal actions of a daughter.  But it gave me pause for thought. 

Every week, I drive down past the country pub where mum and I used to go for Sunday lunch; the spa hotel where she once booked us a swanky post-Christmas meal that proved to be a wash-out; the garden centre where we spent many a happy afternoon, choosing bedding plants and hanging baskets.  It’s as if I’m driving past our old life and it won’t let me in. 

Intimacy has gone; our shared history is erased.

My mother is not dead, but I mourn her every day.  I mourn myself too, and that long-gone life we shared.  But I will never abandon her.  I will never give up.  I will always continue to visit.  Why? 

Because I love her; and I know that she loved me.  I do this as an act of remembrance.

[In January 2018, the play won Best Radio Drama in the Writers' Guild Awards 2018. Listen to a discussion and extract from the play on BBC Radio 4 Fortunately (@ 10' 33") and read the script here via BBC WritersRoom.

There is also an updated version of this post as at April 2019.]

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.)