Sunday, 25 May 2014

I Don't Know Who You Are

The day had started well. A jewel-bright morning of azure sky and fields fluorescent with yellow oilseed rape, as I made the two-and-a-half hour journey down to see mum. I stopped off as usual at the M&S garage shop, to stock up on flowers, a newspaper, and wine for her meals in the care home. Worried that she’d been eating less in recent weeks, I tried to think of something with which I could tempt her, but the sweet goods that had once been her favourites seemed pointless now that she was even turning down freshly-baked cakes and desserts in the home. At Easter, I’d taken hot cross buns, but she had waved them away with never a look.

So when I spied a strawberry stall by the roadside, I pulled over, pleased to have found a treat vibrant with life from the outdoors – the lush, green countryside of our home county that she never ventures into now. I thought of the many spring weekends like this, when we’d have been setting off out for lunch together at some village inn or wine bar in the town centre, where we’d sit under big umbrellas on the pavement and watch the world go by, eating fish and chips or a Sunday roast with a glass or two of wine… 

Those days are gone. Only I remember them now. 

But I was in light-hearted mood. This week I’d managed to set off a bit earlier and didn’t have to rush to make the early lunchtime at the home. Traffic was quieter too. I would have more time to arrange the flowers in mum’s room, check her supply of toiletries, and tidy myself up before lunch.

Mum was pleased to see me. “I didn’t know you were coming”, she said, “that’s a lovely surprise!”  It’s always a surprise, despite the fact that I’m there, regular as clockwork, every other weekend. Mum has long since stopped having any concept of time, so I don’t correct her or tell her when I’ll be coming again next – only “soon”. 

When I used to visit her at our family home, I would call ahead to tell her I was setting off in the car. At some point, perhaps four or five years ago, I realised that despite this accustomed call, which had been our routine since I moved to London in my twenties, mum would always be surprised when I arrived. In the time it took me to drive there, she had completely forgotten I was coming. Likewise, when I returned, I would call her as usual to say I’d arrived back safely; that had been essential since I’d left home. But latterly it meant nothing. “Back?”, she would ask blankly. “From where?”  “Your house”, I would say - to be met with bewildered silence.

This week, I noted that staff had dressed her in the bright pink jumper I’d bought a few weeks ago, but had not yet seen her wearing. It suited her and lit her up. Like me, mum chose steak and mushroom pie for lunch (in her eyes, we must always have the same), and managed a few mouthfuls. I was ravenous after the long drive, but tried not to wolf mine down too fast, to encourage her to eat more. She drank her glass of wine and seemed to be doing quite well. 

But suddenly she looked at me – a sharp, searching, mistrustful look, as if some black cloud or demon had passed behind her eyes - and I knew something in her head had changed. And then she said it: “I don’t know who you are. Why are you here?”

I choked back the shock, tried to keep calm, show no reaction.  “I’ve come to see you”, I said. “I’m Ming. Your daughter.”

“Pfft!”, she said, with a dismissive gesture. “You look like. But you’re not.”

It was my late father’s birthday that day. He’s been dead for 26 years. Normally, I would never ask mum “do you remember?” this or that; I know you’re not supposed to do that to someone with dementia, because the answer is usually no – leading to confusion and sense of failure. But on this occasion I needed to know – what did she recall now of our past life?  So I asked her, “Do you remember Wai?  My dad?”  “Of course I do!”, she said, outraged.  “Stupid!”

I focused on my meal. She had stopped eating hers and would not be persuaded to try any more; she started to mess it all up.

“Dreadful!”, she exclaimed in disgust.  “Dreadful!!” 

“What’s dreadful?” 

“Me!  This!  Here!  What I’ve become.”

And I couldn’t hold it together. How could it be that she didn’t know who I was, yet was lucid enough for once to know that she was somewhere she didn’t want to be, because something “dreadful” had happened to her? She’s had no context for where she lives for years. Not since she’s been in residential care – nor for some considerable time before that, when she had stopped recognising her own home and was desperately frightened by it. Yet now, in this moment, she somehow knew what she’d “become”. And grieved for it, just as I do.

I fled to her room, as discreetly as I could; and only when the door was shut, a corridor away, did I allow the tears to come. Kind staff followed to comfort me. 

I asked them to carry on serving mum dessert, as she’d be more likely to eat that, I thought. And when I’d gathered myself, I went back into the lounge. Mum was oblivious that anything had happened, although her mood was hardly better. She stubbornly and silently refused her favourite meringue, so I tried her with the strawberries. Miraculously, she accepted one or two. 

And slowly, over the next few hours, as I sat with her “watching” TV, we regained some equilibrium. By the time I left, she knew that I was “Ming”, that I was her daughter, and that she loved me – although how far she can put those three ideas together I’m not sure any more.

It’s been several years since she’s really known who I am in context: that I’m her daughter, I’m in my forties; I’m not married and have no children; I live in London; I’ve been a writer of TV drama, and I’ve been looking after her. Sometimes she thinks I have a “sister” (I don’t). I believe this is her memory of me as a sweet, pretty, vivacious young woman, the “Ming” she really loves, from the life we’ve both had to leave behind; whereas the person who visits her now is a tired, dowdy, middle-aged woman called Ming, but someone else. 

It is generally known that there may come a time when a person with dementia does not recognise his or her own closest family. This is sometimes perceived as a sad but benign stage of “blissful ignorance” before the end, like a gentle drift into sleep. Maybe that’s how it is for some. But not for my mum. 

I understood that she hadn’t “known” me, as the real person I am now, for a long time. But this was the first time she’d said so baldly to my face that she didn’t know me at all; and what upset me more was that it wasn’t just non-recognition, but hostile, dismissive, full of active contempt. There was hatred in her eyes.

This is my lovely mum, as I best remember her, in the 1990s, before dementia took its hold. It was taken on one of our many happy pub lunch outings.

It is inconceivable that the mum in this photo would ever look at me with hate or contempt; that she would ever deny me. But as she is now, she does. Not always, thankfully, or permanently as yet. There is still enough of her real self flickering within; but I know that will diminish. Each time I visit, I dread the moment when she looks at me as a stranger and that recall doesn’t come back.

I’m not a religious person, but I can see why the Biblical idea of being “thrice denied” is so powerful. It’s an act of rejection – betrayal – by the person who had previously been closest, most loyal. I’m not drawing comparison with Christ here; but on an emotional level, denial by a loved one with dementia is that ultimate hurt for family. Particularly when that loved one is the only family you have left, the one who loved you most – or perhaps the only one who loved you, to whom you have devoted your life.

Of course, they are not wilfully rejecting you, but are perhaps frightened themselves of not knowing who they are and scared to find "strangers" around them. But understanding that doesn’t make it hurt any less. 

There were times in recent years when I broke down in despair at the situation mum and I shared; although I tried not to let her see how upset I was, there was a part of me that wanted her to see, to be moved by it, to show me she still cared. Yet she would watch me cry in a detached, almost anthropological way – like a scientist examining a subject. 

The last night we spent together in our family home, the night before I took her into care, she found me curled up, sobbing on my bed. She stood and looked on from the doorway for a few moments, not exactly upset, but vaguely disturbed. 

“Why are you crying?”, she asked.  I couldn’t reply: it was too huge.  “Come on!”, she said, “stop that now.”  I couldn’t.  “I love you, as if you were my own daughter.” 

‘As if?’ ‘As if…?’  Then who did she think I was? That was in 2011.

The day before last week’s incident in the care home, when mum had said “I don’t know who you are”, I had been speaking at the Alzheimer's Show in London; I had also sat on a Question Time Panel alongside Jeremy Hughes, CEO of the UK Alzheimer’s Society and Baroness Greengross, Chair of the All-Party Parliamentary Group on Dementia, among other experts in the field.

Afterwards, I met two ladies, who expressed surprise to find me queuing with them for the loos. “We just saw you on that panel”, one of them said, “I’d have thought you’d have somewhere special to go.”  No, I explained, we all have to go in the same place. That strikes me as a good analogy: where dementia is concerned, there are no V.I.P. toilets. We are all in the same queue…

Anyone who saw me speak that day might have thought that I had come to terms with my mum’s dementia, that I’d “got it sorted”.  But the truth is none of us has. 

We learn to accommodate it on a practical level, to accept it intellectually. But emotion can never be wholly tamed; those moments, when the person you love most in the whole world says they don’t know who you are, can still floor you, however much control you think you’ve gained. 

I’m glad there’s far more dementia awareness now – initiatives such as Dementia Friends to teach the public the basics, and much good work being done in professional dementia care. 

But my final thought to policy-makers, media, and professionals at the end of Dementia Awareness Week 2014 is please, never forget how it feels

For families, it never stops hurting. And sometimes the only honest response is to flee into another room and simply bawl your heart out.

Sunday, 18 May 2014

Not the Beige Cardigan

Dementia Action Alliance Carers' Call to Action* was a UK campaign that aimed to highlight the particular needs of dementia carers and recognise their rights; I was a member. Along with a number of other family carers, I was invited to speak at the 2014 Alzheimer's Show at the Olympia in London and share my personal story to illustrate the need for the five key aims to be met. 

So why do dementia carers need special recognition? Because, despite much greater awareness of dementia in the media, there remains widespread lack of understanding that it’s not just a bit of dotty forgetfulness, but a degenerative, cognitive disorder that can have all-consuming long-term consequences, not just for the person who experiences it first-hand, but also for the family carer.

Below is the edited text of my Alzheimer’s Show talk of 16 May 2014.  It covers some common ground with previous posts, but was aimed at a general audience at the Show; if you’re a new reader, you can find more detailed accounts of some of the stories and issues via links to my archive.  (And lest anyone think this means I’ve got it sussed, see my next post, I Don't Know Who You Are…)

Some of you may know me as @Minghowriter on Twitter.  I am a professional writer; I’ve written scripts for TV shows such as EastEnders and Casualty, and I’ve worked behind the scenes in drama production.  

But I’m here today because my mum, Glenys, who’s 87, has mixed Alzheimer’s and vascular dementia. It’s been a long journey – more than a decade of pronounced symptoms and much longer since the earliest signs. We’ve both lived with dementia for the best part of twenty years.

Mum’s now in residential care, where she’s been since September 2011. By that stage we were both at breaking point

A bit of background: I’m an only child.  My dad died in 1988, when I was a student; it’s been just mum and me since then.  She was an only child too; we have no other immediate family. I moved to London when I graduated, to find work 100 miles away from my hometown. 

Looking back, I think the shock of my father's death and my leaving home at around the same time triggered early symptoms of dementia: separation anxiety and disproportionate emotional responses to certain situations. So I'd say beware of traumatic life events - bereavement, accident, moving house, divorce - and don't ignore any warning signs of personality change, confusion, or unusual emotion. It may be nothing or only temporary, a normal response to upheaval, as I thought at that time; but perhaps if my mum had had bereavement counselling, those early tendencies might not have developed in her case to such a degree in subsequent years.

Mum’s true personality is outgoing, warm, and generous with a great sense of humour. She was a singer in her youth and then a teacher - a natural performer and communicator. She was always talking! We’d spend at least an hour on the phone every night after News at Ten; and when I was back home for weekends, we’d sit up into the early hours, watching telly in our nighties, drinking tea, just chatting about everything and nothing.  

So when she began to repeat herself, back in the 1990s, it didn’t seem that odd; and yes, it increased, but the change was gradual over many years.  It wasn’t an issue until it became extreme. By 2011, I realised she had literally no short-term memory. I couldn’t ring her up to remind her of something, because she would have forgotten before she put the phone down; and however long I’d been with her, as soon as I was out of sight, it was as if I’d never been there. Upsetting for both of us.

But there were other signs along the way: peculiar obsessions and rituals – hiding the washing up brushes in the kitchen, for instance, because she was afraid our neighbour (two doors away) would see them and disapprove!  And trying to remove a stain from the carpet, she once cut off the pile with scissors.

She would take a sudden, violent dislike to people who had done nothing wrong – friends whom she imagined had slighted her, or workmen with whom she’d previously been on good terms. There were panic-stricken incidents of locking herself in or out of the house, being unable to remember her PIN number at the cash-point, and repeatedly losing her bank card.  

She started to use generic words for types of food – “white meat” or just “meat”, instead of chicken, turkey, or pork. And her grasp of language became very literal. Figurative expressions and jokes had to be explained. Her motor skills declined, leaving her unable to cope with food packaging or household tools.    

I mention these more subtle things, because I’m frustrated by the focus on dementia as just a "memory problem". It’s so much more! A progressive, cognitive disorder, that can affect a person’s daily life in so many different ways.

But on the surface, mum seemed fine; friends who saw her maybe once a week for lunch or spoke to her on the phone would not have been aware there was anything much wrong.  I was the only witness to her more disturbing symptoms (often at night, when there was no-one else around) – and, crucially, she herself didn't see any problem.  

That’s the thing with dementia - lack of insight can itself be a major symptom, leaving a person unaware of their own vulnerability and often hostile to intervention.  

That’s why aim one of the Carers’ Call to Action is that dementia carers have recognition of their unique experience, due to the character of the illness: like me, they may have to work under the radar or against fierce antagonism to meet their loved one’s needs.  

As mum’s faculties declined, I gradually assumed responsibility for the things she couldn’t manage: finances, admin, cooking, cleaning, laundry, household maintenance, appointments with doctor, dentist, optician, chiropodist, hairdresser – all crammed into my weekend visits or arranged stealthily by phone or email during the week, because mum would go berserk at any suggestion that she was less than 100% independent.  “I’ve got all my marbles, you know!”, she would often say to me.  

And in the meantime, my career fell by the wayside. I was still technically “available for work”; but as a freelance, with no office hours, I found that my days were increasingly taken up with emergencies at mum’s and I simply fell out of circulation. Mum had no idea.

I tried to persuade her to accept at least a bit of paid domestic help; but she refused even a weekly cleaner, let alone any kind of personal care.  

But in 2009, I needed major surgery and was unable to drive for 6 weeks. So I called her GP. I’d spoken to him privately before; but without mum’s co-operation, we both felt powerless to act. 

Now I asked for health visitors from the surgery’s Older Adult Nursing Team to look in on mum more often during my absence. Friends and neighbours rallied round in practical terms; but I was frustrated that the health visitors couldn’t see the symptoms that were so clear to me. Of course, I understand why.  

They would pop in for twenty minutes once in a while, and (if she let them in at all) mum would chat to them quite normally. Even now that she’s in a dementia nursing unit, she’s still quite articulate. But articulacy can co-exist with quite severe cognitive malfunction. She’d always been a good talker. How were those nurses to know that almost everything she said was factually untrue? They didn’t have the facts to compare.  

If mum told them that she had eaten three meals that day, had no problem getting up and down stairs and had a bath every week, that she did all her own washing, shopping, and cleaning, she wasn’t lying. That’s what she genuinely believed. And if she told them she hadn’t seen her daughter for months – well, they could see that she was sad…

In fact, apart from those weeks convalescing from surgery, I was there at least every other weekend from Friday to Monday, and we spoke on the phone every day; and despite having both a bath-lift and a stair-lift, mum was unable to use either even with help, and had completely stopped bathing. But how were professionals to know? Only by talking to me.  

Aim two of the Carers’ Call to Action: family carers of people with dementia are recognised as essential partners in care.  

The GP finally referred her to social services. She was assigned a social worker, an occupational therapist, and a clinical psychiatrist from the Community Mental Health Team. All these people had to visit her at home, pretending to be “health visitors from the surgery”, in order for mum to accept them; even then she generally rejected their efforts.  

And the subterfuge was a terrible strain on me. I desperately longed for mum to acknowledge her needs, so that we could plan for them openly together; I didn’t understand that she never would or could.  

Christmas 2010 was a turning point. That winter of terrible snow. I’d struggled to get there in blizzards, mum totally oblivious, and we were snowed in together for a week. On Boxing Day morning, I got a message on my mobile. It was mum – tearfully pleading with me to get in touch, devastated not to have seen me for ages…

She was upstairs in bed; and I was downstairs in the kitchen, putting bacon under the grill.  When she came down a few minutes later, she had no memory of making that call. And as the New Year went on, I realised that there were times when she didn't really know who I was.  

By the summer, mum could no longer recognise her own home, where she had lived for 40 years. Paranoia made her constantly anxious and suspicious of me for trying to complete basic tasks, such as doing the hoovering or putting out the rubbish; she started obsessively packing bags and fleeing the house, which she thought was “an empty hotel”.  

And one night, I got a call from the police: mum had been found in distress at the house of new neighbours; she’d knocked on their door, terrified of “an intruder, who’s holding my daughter hostage – he’s going to rape her!” Of course there was no intruder. But the poor neighbours, who had never met her before, didn’t know that; they had called the police, thinking this terrible crime was actually taking place.  

All year, the social worker had been telling me that I needed to find residential care for mum; it was the thing I’d most dreaded all my life and had done everything to avoid. But now I knew I couldn’t keep mum safe on my own twenty-four hours a day. She couldn’t be left alone for even a minute; we were both prisoners of her fears.

Finding the right residential care is another story. But we were extremely lucky to get a place in a good specialist unit.  

The week I took mum there, on my own, was the worst of my life. But I know that she wouldn’t be alive today if I hadn’t done that.  

So I’m incensed when I read statements from politicians saying that families should just “try a bit harder” and care for their loved ones at home, instead of “‘dumping them’ in care”. I don’t think anyone who says that can have any real idea of the years of anguish that most of us go through before we get to that point, or the intense level of need experienced by people with advanced dementia.

As carers, we want to preserve the dignity of those we care for, so we tend to shy away from complaining or being explicit about behavioural problems: we don’t want to talk about double incontinence, paranoia, or aggression.  

But now I think we have to be honest about the practicalities and the emotional impact of caring, if policy-makers and the wider public are to understand what we face every day and acknowledge our needs too; and if those who follow the same path are not to feel that they’re failing if they can’t “live well with dementia”.

I couldn’t be here with you today, if mum were not in residential care. During the years when she was still at home, I knew nothing about dementia services or events like this, because I didn’t have the time or energy to find out. Every day was one long challenge of firefighting crises. We were on our own.  

So I’d like professionals to reach out, to meet aim three of the Carers’ Call to Action: that family carers have access to expertise in dementia care for information, advice, and support.

It was only through the Alzheimer's Society Talking Point Forum, websites, and social media that I began to find information and support. I read blogs written by people whose experiences were just like mine. At last, I was not looking down a tunnel at our private issue, but outwards at a syndrome shared by many, who could tell me first hand what to expect and how they got through it.  

So what else helped?  

Good neighbours, a retired police couple, who supported us both in numerous ways. They never complained when mum called them at 4.00am or asked them to climb over the gate yet again when she’d locked herself out! (It was, of course, not fair on them, but I’ll always be grateful for their generosity.)

Counselling, for a couple of short periods when I was at my most desperate.  No-one offered it to me, because I didn’t live in the same local authority as mum, and wasn’t identified as a carer.  

Hence aim four of the Carers’ Call to Action: family carers should have assessments and support to maintain their own health and well-being.  

Under the terms of the new Care Bill (now passed as the Care Act 2014), carers will have a right to be identified and offered a carers’ assessment for their own needs; and I believe that the revised GPs’ Directed Enhanced Service for Dementia will now have some provision to share this information between different GP surgeries, where the carer is not registered to the same practice. 

But in my case, I had to ask for counselling myself (privately and via my own GP). It was useful, if only to show me that what I really needed was not therapy, but practical help with mum!

It was the social worker, whom I could never meet face to face, who was the greatest professional support by phone and email and put me in touch with a wonderful independent carer who helped to look after mum at home for the last few months before she needed residential care. Of all the professionals, these two had the most hands-on understanding.

And ultimately, the staff in the care home helped us to make the transition. I know how lucky we are to have found a good place with good people. This should not be a lottery.

Aim five of the Carers’ Call to Action: family carers should have confidence that they are able to access good quality care, support and respite services.

Eighteen months after mum went into care, I started this blog. It’s called (Dementia Just Ain’t) Sexy, because it’s a subject increasingly in the news – but still groan-inducingly “worthy”, always illustrated by those doddery, wizened hands on a walking stick; not “sexy” for journalists or politicians. It’s not their subject of choice. But then it’s not our subject of choice either.  

Whether you’re a person living with dementia or caring for someone who does, your life should be about more than this disease. Before it came knocking on your door, you had just as much right to be vibrant and interesting and “sexy” as anyone else. Why should that be taken away from you, on top of so much else?  

You are not the pull-on trousers and the beige cardigan!

Photo: Eloise Ross
In professional dementia care, there’s an awareness of the phrase “see the person”. Well, I say that goes for carers too. Professionals may sometimes see the family carer as just a ghost in the background of the “client” or “service user”.  

And as the carer bogged down by daily trauma, you tend to put your own needs last and can end up losing your identity.  

But we’re people too! With hopes, dreams, desires, and abilities beyond dementia care. We had a life of our own before, and we should still have that life after. Caring for someone else shouldn't mean losing yourself.

Hold onto that. Because we too have a right to ask: “Don’t you know who I am?”

Please go online to find out more about the Carers' Call to Action and sign up to our shared aims to support family carers.

Thank you.

*Carers' Call to Action was a time-limited campaign, which was wound down in March 2015. Its principles and campaigning activities, however, continue through a new organisation, Tide

Update, 2019: A new specialist charity, Dementia Carers Count, offers support courses for family and friends dementia carers.  Contact them for details.