Thursday, 23 May 2013

It's (Not) So Funny How We Don't Talk Any More

There’s something missing now after News at Ten. No phone call from mum. That had been our ritual most nights in the last twenty-odd years since I had moved to London: a general, rambling gossip of at least an hour about the day’s events, what was on TV, anything in the news. When our little bichon frisé dog, Dill, was still alive, I’d love to hear about his antics.

Mum was a performer. She’d trained as a classical singer from early childhood, broadcasting on the radio, and sang professionally until she married: German Lieder and oratorio, such as The Messiah and St Matthew Passion. Her contemporaries on the circuit of Northern choral societies were Kathleen Ferrier and Janet Baker. Later, as a primary school teacher, she retained that instinct to entertain in her communication with the children.

So when she began to repeat herself in conversation (more than a decade ago, perhaps nearer two), it wasn’t initially cause for concern. It just seemed a feature of her general volubility. Yes, it became more prevalent as time went on, but the change was gradual; there wasn’t a point at which I could identify it as suddenly odd. It only became an issue in the last few years, when it grew extreme – repeating a question or story as soon as she had said it and constantly returning to the same.

Mum in her singing days
There were other warning signs that her verbal communication skills were damaged. She started to use generic words for types of food – “white meat” or just the monosyllable “meat”, instead of chicken, turkey, or pork. And her understanding of language became very literal. Figurative expressions and jokes had to be explained; irony and satire became a mystery – she could not process anything that employed disjuncture between what is overtly said and subtextually meant.     

The phone calls, which had been a shared pleasure for most of my adult life, now became onerous; mum would call me multiple times in the day and night, sometimes redialling immediately, because she couldn’t remember having spoken to me before and still had a pressing impulse to say something – the same thing, over and over, and often of a disturbing or accusatory nature. 

I couldn’t ignore the calls, in case of emergency; and if I put the ansaphone on, it would soon fill up with distressing messages. I realised that mum had lost the ability to distinguish between a recorded message and a live person on the line – if the machine picked up, she would think it was me, refusing to converse. (This explained the numerous occasions when she had described being hurt by friends “not speaking to me”.) 

If I went out for the evening, I always had to hurry back for the 10.30pm call, no longer for an enjoyable chat, but simply to allay mum’s fears of not being able to get through to me, and to assure myself that she was in the house and safe. I came to dread the sound of the phone.

So when she went into residential care, I was relieved not to have that constant stress. At last I could sleep at night and get on with some tasks in the day. Mum could have a line installed in her room, but I agreed with staff that it would not be a good idea. Because she could no longer understand phone etiquette – what times are suitable to ring - it would have to be restricted to incoming calls; and that would encourage her to stay in her room all day, when she needed company and supervision.

Staff could dial on the office phone for her (other residents do take calls), but on the whole it has proven best not to attempt this, as it merely unsettles her.  We take for granted the knowledge that a phone receiver has one end where you listen and another into which you speak; that it has to be held the right way up, close to your ear and mouth; that you take turns to speak and to listen; and that you “hang up” at the end of a call. These are all concepts that can become challenging to a person with dementia. And with today’s cordless handsets, even “hanging up” is now an abstract – a mere press of (the right) button.

With people around to distract her and meet her material needs, there’s no evidence mum is upset by the lack of phone contact. She’s forgotten about it. It is I who find it strange.

And when I visit, there’s little talk now. Not because mum is incapable of speech. Other residents struggle with this, but mum retains a sophisticated vocabulary and can still speak coherently. Only she does so sparingly. Sometimes she will address me in Welsh, and is frustrated when I can’t respond. (I knew a little as a child, but it was a long time ago; luckily, she has a Welsh friend who can chat with her in like kind.)

No, content is the problem for us. So many subjects are taboo. Uppermost in mum’s mind are her beloved parents – both long dead, as is my own father, who died at the age of 52. Talk of them cannot avoid the inevitable question: where are they? To which there is no reassuring answer and little possibility of distraction. 

Mum can’t tell me what she’s been doing during the week, because she doesn’t remember; I can’t tell her what I’ve been doing, because so much revolves around selling the family home and managing her finances to pay the care fees – a distressing scenario from which I have to shield her. She does not know or accept that she has dementia, so we can never mention that. 

And she has no real grasp of where she is – either the care home itself (which she variously believes to be a restaurant, hotel, school, or convalescent hospital), or the town or part of the country. It would not help to try to orientate her in the present, as “home” to her is the childhood home she hasn’t seen since 1944, where her parents would be waiting. I avoid any reference to the actual town where she lives, for fear of reminding her of our house ten minutes away that I have spent nearly two years packing up. 

Oh, there’s plenty of advice for conversation-starters in dementia care: picture books, collages, memory boxes, photo albums, music. These may work with some people or between others and my mum, but between us they are largely irrelevant.  She shows little interest in general pictures, media, or even music, which you might expect to be key. Family photos confuse her, as she can’t place them in time or distinguish between herself, me, and her mother; happy scenes may spark her attention for a moment, but it doesn’t last. And memories reawakened of the life now gone are likely to provoke uncomfortable enquiry... 

The whole context of our shared past and how it’s been changed by death and dementia is so full of problematic association that I daren’t initiate, only react to mum’s own expressed thoughts – now few and far between. 

Friends whom she knows in only one context (as work colleague or neighbour), may find it easier to engage with her, I believe, because they can limit their discourse and focus on positive things. Staff too are better able to tell white lies or go along with misconceptions to reassure her; I similarly find that I can chat more easily with other residents - because I have no emotional investment in the veracity of what’s said or in their response to me. Mum doesn’t like me talking to them though. As far as she’s concerned, no-one else has claim on my attention!

So my visits pass mostly in silence or the neutral chit-chat of strangers: I tell her she looks nice in that pink top, or admire her new shoes; she asks about the weather and traffic on the roads. And then she’ll doze off, and I just sit and read the paper. 

There is an awareness of communication difficulties in dementia, but it tends to focus on language itself: vocabulary, memory, and the mechanics of articulating words. It’s more complex than that. Conversation is reciprocal, like a game of tennis. If only one person hits the ball over the net, the rhythm dies; it feels redundant after a while for that person to keep serving. I’m reminded of that famous Zen riddle of the “sound of one hand clapping”. Speech – or lack thereof – becomes a barometer of the relationship. 

That’s why I’d suggest that communication in this stage of dementia may be easier for professionals. They have no emotional expectation of the game. There’s no personal disappointment if exchange turns into one-way traffic - net practice, instead of live match.    

When I drove back to London after leaving mum in the home for the first time, it struck me that it was also the first time in my life that I’d have no-one to call when I arrived. For over twenty years, I’d always called her to say I was setting off to join her or had arrived safely back in my own place. Who would care now, if I had an accident on the road, or indeed care about anything I did when I was out of sight and out of mind?

Years ago, I’d had to supervise building works at our family home to remedy subsidence. Already in the grip of dementia (although I didn’t fully realise it then), mum had refused to help and I’d been left to clear out rooms full of junk for the builders to get in. Among some old papers, I’d found a letter she had sent me in college, full of humorous, chatty news about dramas at work and the decorating she and my dad were planning. At the time, I was so angry with her for obstructing me in a stressful task on her behalf that I ripped it up and chucked it out with the rubbish. How I wish I’d kept it now!

Clearing out the house more recently, I found a lot of mum’s old diaries - not reflective thoughts, just notes of my weekend visits and the things we’d done together, hair appointments or lunch with her friends, observations of the weather, and trips to the vet with the dog.  Here, in the minutiae of a daily life long gone, was her real self – my mum’s true voice. I treasure those everyday relics.

I am glad not to be plagued any longer by those terrible paranoid phone assaults of latter years. But I miss the aimless, cosy tittle-tattle of our old News at Ten calls. If I see something that would interest mum on TV, I still have the impulse to pick up the phone and say, “Quick, switch on BBC1, there’s Bargain Hunt in Llandudno!”  I’ll never do that again.

But I will keep throwing the ball in the air and trying to reach her over the net... 

Monday, 13 May 2013

Paranoia - And The Other Fear That Dare Not Speak Its Name

“I’m very angry with you!” The door burst open, silhouetting mum in the doorway in her nightie.  It was about 2.00am and I’d been drifting off to sleep.  But she’d got a bee in her bonnet, and she wasn’t going to let it rest. “You’re getting that man in, aren’t you? Well, you’ve got no business!” It was true I’d booked a plumber to service the boiler before winter. A couple of years earlier, we’d been caught in freezing weather with no heating or hot water, and I had wanted to avoid that happening again. 

I knew she wouldn’t be able to cope with such an emergency if I weren’t there (she couldn’t tolerate workmen in the house), so I’d set aside a few days to supervise maintenance before we went on holiday. It was to be her 80th birthday and I’d rented a house for a week on the Isle of Anglesey, a special place for us where we had family connections and had enjoyed happy days in the past. I had hoped she’d be looking forward to it, but this white anger about the plumber blocked out everything.

While she might have had a point that I’d “taken it upon myself” to assume charge in her house, I’d come to do this over the years, in order to head off the crises she got into, if left to her own devices. This meant many tedious and time-consuming jobs that were certainly no fun for me - I took the responsibility, to keep her safe and well. 

But mum couldn’t see anything positive in it; to her mind, there could only be one motive – I was doing up the house to sell it and put her in a home.  At the time (2006), there was no question of this.  But she was utterly enraged at the belief, and berated me at great length as I lay defenceless in my bed, culminating in the vituperative declaration that she was not going anywhere with me: “Heaven help me, if I have to rely on you!”

It was a theme she returned to often in subsequent years, latterly fighting my attempts to carry out such innocent domestic tasks as vacuuming, changing her bed-linen, or putting out the rubbish, on the same deluded grounds. Installation of a new cooker and washing machine (to replace broken down old models) was viewed as confirmation of my evil intent, and even delivery of internet groceries provoked hours of aggressively suspicious interrogation.

There were delusions and resentments directed at others too. Friends, she believed, had snubbed her in town, or were avoiding her on the phone; they’d said nasty things to her. She became convinced that a beloved uncle, long dead, had stolen precious things from her mother’s house, when he kindly cleared it out for her more than thirty years ago when her parents died. Numerous times, she called the next door neighbours, adamant that the gardener - with whom she had always been on cordial terms - was “hiding in the house”; they would search it from top to bottom to humour her, and even then she would not be satisfied. “Well, of course, he’s gone now!”, she would say. (The most extreme example of this is detailed in my post, The Crisis We All Dread.)

And she became extremely possessive of me. She was always inclined to be clingy (we were both only children, and she’d had a very close relationship with her own mother); but as time went on, she couldn’t accept any notion of my developing relationships or emotional bonds with others. Whenever I was with her, I couldn’t speak to friends on the phone or even check emails openly, because she’d demand to know who I was talking to, on the assumption that I was saying bad things about her. It was impossible to reason with her about any of this. 

Yet between these episodes she was her real self: a gentle, warm, kind, loving, generous person, with a lively sense of humour, who would never have harmed anyone – least of all me.

Last week, the Independent published the heart-breaking story of a man with vascular dementia (also my mum’s dominant strain), who killed his wife of more than fifty years, while under the delusion that she was cheating on him:

Such extreme outcomes are thankfully rare. But the paranoid beliefs that provoke them are quite common, although little discussed – they don’t make comfortable reading or positive images.  (See also Dementia-Related Violence a Growing Concern by Paul Bibby in the Sydney Morning Herald.)

Like this poor man’s two daughters, I can understand with hindsight that my mum’s behaviour wasn’t her fault or her true intent; it was the illness talking. And I can now see that all those irrational outbursts were driven by fear. 

A couple of weeks ago, a researcher posed the question on Twitter, “what does dementia feel like?”  From my observations of my mum, I replied that it seems to me a constant anxiety or dread without focus (sometimes finding illusory focus). The person is aware of feelings, rather than thoughts; and with a declining (or absent) context of memory to make sense of these feelings, the mind supplies an alternative logic to explain them. 

For instance, my mum has also had times when she’s been convinced that her parents were splitting up, because her father had been having an affair, or that my father was walking out on us. A very similar scenario to that described in the news story above. I know these beliefs to be nonsense – all the parties are long dead and never behaved in anything like this manner during their lifetimes. But my mum was frightened by their absence; and because she couldn’t remember how or when they died, or even that they were dead at all, her mind came up with another reason: they had run away without saying goodbye, because they had done something shameful. Why else would they leave her alone?

In the dementia unit where she now lives, there are other residents with similar delusions. Some believe that people are trying to kill them, that the food is poisoned, or their property has been stolen. One lady will recount in conversational tones the most lurid and graphic tales of having been sentenced to death on a trumped-up charge or of being a spy, which is why the staff “have it in” for her. Another goes wild if anyone tries to sit in a particular chair, because she believes they’re trying to displace her or the “husband” she wants to sit by her side. 

While there may be some benign delusions, the negative seem far more prevalent, concerning persecution, theft, punishment, or betrayal. Why?  Because they are provoked by fear: fear of loss, of insecurity, of not knowing who you are, where you are, or why. How do most of us answer such questions? From unthinking memory. But enter into the feelings of a person with dementia, whose memories are fading by the day, and you begin to see where paranoia is born. People who experience such fear need sympathy and understanding, not stigma and condemnation.

But, equally, those close to them should be allowed to admit that they too are often afraid; afraid of what is happening to someone they love – and sometimes afraid of that very person. When I was in my own flat, mum would repeatedly wake me by phone with disturbing accusations, of which she would later have no recall; and when I was staying with her, she would often burst in on me during the night when I was barely awake, in the grip of some intense obsession, or, simply having forgotten I was there, intent on looking through my bedroom window to check for intruders. 

I knew that her frailty made physical attack unlikely. But there were times when the unpredictability of her moods and irrational antagonism unnerved me. And yes, there were occasions, particularly at night, when I was scared to be alone with her – and, no doubt, when she was scared to be alone with me. In those awful moments when her memory played cruel tricks, we were not the loving mother and daughter of reality, but two strangers, locked in together.

Mum sat in black silence for that whole day while the plumber did his work. She maintained this deepest of sulks for the rest of the week. I thought I would have to cancel the longed-for holiday. But the day of her birthday dawned, bright and sunny in late September. Miraculously, she allowed me to manoeuvre her into the car, and we enjoyed a week of glorious autumn weather by the Menai Straits. 

One night, over a restaurant meal, she said what a lovely time we’d had.  But you didn’t want to come, I said; you gave me hell about it. “No!”, she said.  “Why would I do that? I think you must be mistaken.” 

I could no longer hold back the tears. Mum looked on perturbed – and totally mystified by my distress.

We did have a lovely time.  It was our last holiday together.  

Mum & me, Beaumaris Castle, 1976

Back in Beaumaris for mum's 80th, 2006