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... 

12 comments:

  1. Thanks Ming, there's so much to say and learn about changing communication as a person's condition advances, but what really resonated with me was your paragraph about the phone calls.

    My wonderful mother-in-law had dementia, and my fantastic father-in-law cared for her as best he could, but had multiple health issues. My husband and I had what seemed like an interminable period of numerous daily / nightly calls from one or the other of them. She was confused, frightened, paranoid, frustrated and angry with him. He was exhausted, angry, resentful and guilt-ridden. (Or worse, it was a real emergency). For a while we were slaves to the phone, seriously sleep-deprived, and dreading and jumping at every ring.

    Gradually she lost the ability to hold conversations and use the phone, and the calls tailed off. It was partly a relief, but each new loss of communication skills triggered sorrow. I missed that contact. Her voice, the chatter, being able to joke about the men together and make her laugh and cheer her up. Some of that could still happen, but had to be done face-to-face, through smiles, touch, and use of comforting familiar phrases. My husband, father-in-law and I were so lucky to have each other for support. So many people must be completely isolated.

    They both died within 6 months of each other in 2011, and left a huge gap in our lives, but also some time for rest and recovery. I'm grateful for that respite, because now my own Dad's vascular dementia is advancing and he's just entering the repeated phone call phase!! What I've learnt from hindsight is to draw comfort from just hearing his voice, to celebrate every successful interaction, to cherish every new positive memory, and to remember that this is a phase and will pass.

    Keep up the great work Ming, personal stories are so powerful!

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  2. Thanks so much Rose, for reading, commenting, and for your support. This phone issue is so common and very distressing/exhausting for all concerned, yet there is no real solution.

    You can't unplug the phone, because you want them to be able to get through to you if they need help; and call screening makes no difference, as you are still disturbed by the messages, which can often be more heart-rending in content than live conversation.

    I think there's something very particular about the combination of cognitive skills involved in phone contact - so simple as to be taken for granted by those without dementia, but quite a sophisticated process in cognitive terms, requiring both motor control and abstract thinking (what's "real"/live and what's recorded; tapping out this code results in this effect, etc.)

    Perhaps when researchers understand this better, a solution or better coping strategy can be found. For the moment, yes, as you say, we should at least try to value the contact itself and not take the content and repetition too personally. A hard ask though!

    Thanks again (for your persistence!).

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  3. Once again - so many thoughts and experiences that I can connect with. Thought I would share my most recent. I am struggling to explain to my father, who has dementia why when he is upstairs he cannot phone my mother who is downstairs - as it is the same phone number. He keeps telling me he gets an ansamessage which means my mother has gone out and left him. No amount of talking convinces him that it is because he is phoning his own number. I keep reminding myself that it is so important to retain my sense of humour and not argue - but it is hard. Jeanne

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  4. It is, Jeanne. I'm going to post on some of these difficulties from the carer's p.o.v. in the next week or two.

    The Christmas before my mum went into care, I got up first on Boxing Day and started to prepare a cooked breakfast. Mum left a pitiful message on my mobile, asking when she was ever going to see me again, as it had been ages - I was only downstairs in the kitchen! (And she never normally called my mobile; goodness knows how she managed to dial the number. Presumably tried my landline first and got the anasphone there...)

    When she came down, some time later, she of course had no memory of having made that call. By that time, I knew to ignore such messages; but it's still upsetting - the more so, for having to be suppressed, because you know it's unfair to let on to them that you are hurt or angry.

    Thanks again for reading and commenting.

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  5. My mum has dementia and has been in Residential Care for two years now. She also has Parkinson's disease and is blind. She was a beautiful singer and has always loved music but even that now seems lost to her. I just feel like it's an ongoing bereavement. I long to tell her things and like you say have a two way conversation. I know it sounds silly coming from a grown woman but I feel like there's no-one to go to with even just day to day ups and downs who will listen and always be on your side. Basically I miss having a mum and yet there she is. PS I used to ring my mum everyday during the 6 o'clock news!

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  6. Hi, Kathy -

    No, it's not silly at all. We always look to our mum for those daily confidences, however old we are; after all, she's the person who has known you longest, every minute of your life, and the loss of that easy intimacy (that we normally take for granted) is indeed an ongoing bereavement. It's so hard to explain to others, who don't experience it first hand, how the relationship changes with dementia - that you can still "talk" to some extent, but it's not a conversation any more, just skimming the surface like polite (or sometimes not so polite!) strangers.

    The other thing I find difficult is not being sure from one moment to the next who my mum thinks I am - she'll be talking to me quite normally as "Ming", then ask where Ming is, or what's happened to "all your brothers and sisters" (I don't have any). Sometimes she thinks I'm her mother, or a Chinese relative of my dad's, even though she "knows" me on the surface. So I tend not to say much myself.

    And yes, that sense of no longer having the one person who's always on your side is a particular sorrow, as is the loss of shared memory (don't know if you've read my earlier post from April archive, 'A Stranger in My Home Town'?). There are things that only you and your mum know, both big and small, and when she can't share those any more, it's so lonely.

    It must be even harder for you with the blindness; that's my great fear, as there's history of that on my mum's side of the family too. I hope it may be some comfort to know that you are not alone in these feelings; dementia can be such an isolating condition on so many fronts.

    Thanks for reading.

    (P.S. If you ever want to chat, I can PM my details to John on FB.)

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  7. I really appreciated reading this. It's so similar to our experience. My mum is in West Wales, now in a residential home, but my sister (n Glasgow) and I (in Cheshire)went through the phone calls stage. Like you, I'm never sure whether my mother knows me when I visit. She does usually recognise me as her daughter but the recognition comes and goes during the visit. My mum was a piano teacher and I'm so grateful to the care home that they have a focus on music therapy so she can still sing and play the piano if she chooses and be entertained with concerts and guest singers.

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  8. Thanks, Ann. Good to hear about the music therapy where your mum is. Sadly, my mum won't join in with communal singing, but everyone is different and I still believe such approaches are very worthwhile.

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    1. Apologies for commenting on an old post, but I've only recently come across your blog and am reading posts randomly.

      I was interested to read that your mother won't join in communal singing even though she was a singer. Does she still enjoy singing on her own? My mother taught cookery and was an excellent home cook/baker; but for the last 6 years she won't cook, make a cup of tea or even butter a slice of bread. My late father took over all domestic tasks, and I do absolutely everything for her now. They seemed baffled in hospital and the home she was in for rehab. They thought she would love helping out in the kitchen. To me it seems as if she cannot bear to be reminded of the deterioration in her skills, and how much she has changed. Cooking, preparing food for the people she loved, was a big part of her identity. She did manage to cook some set pieces (scones, crumble etc using recipes my Dad had typed up and ingredients he'd weighed out) for the occupational therapist a few years ago, mainly because she wanted them to sign her off and go away, but found it quite traumatic (she covers up her distress in front of professionals a lot of the time, then it pours out later).

      The therapeutic value of doing things she used to enjoy simply isn't there. There also seems to be a focus on encouraging people with dementia to reminisce. My mother hates it. She doesn't want to revisit past traumas and finds other people's questions intrusive and stressful.

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    2. No apology needed; read & comment in any order! I wrote this post a couple of years ago, when mum was still in the residential unit of the home (she's now progressed to nursing) and was more mobile and responsive. I'm afraid she isn't able to do anything much these days (or doesn't want to), as she is mostly bed-bound and often sleeping. But no, she has not been interested in singing at all for many years. Indeed, it really seems to irritate her if you try to encourage her in anything artistic.

      This flies in the face of the idea that the arts will get through to people where other approaches fail (which in principle I believe or at least support in hope), and that a person with dementia is likely to respond to the thing that was previously most dear to them.

      You may well be right that, on the contrary, some find those activities too painful to recall, and therefore, yes, shun the very thing that most defined them.

      I have been really surprised and indeed disappointed by this reaction in mum, as in her "real" self she was exactly the kind of person who would have fervently believed in arts therapy. (She taught music in latter years, and as a student had worked as a music therapist in a children's TB clinic.)

      I also agree with your reservations about reminiscence therapy. I realised quite a long time ago that attempts at reminiscence through photographs were more distressing than positive to mum, as described above.

      When it became apparent in the spring of last year that she had difficulty remembering me, I thought that if she had a memory of me at all, it would be as a child or young woman, and of course I don't look like that now; so I brought in more recent photos of myself, and labelled them with my name and "daughter", in hope that this would maintain some kind of connection between the idea of her daughter and the now middle-aged woman who visits. But though she will have those photos on the table in front of her and sometimes be fixated on them, she is still unable to decipher that I am that same person. In fact sometimes she says unpleasant things to me about the photographs, without realising it's hurtful.

      It has now got to the stage where even the simplest verbal reminiscence draws at best no response, at worst distress or antagonism. I don't ever say "do you remember?", I try to frame it in some neutral way, as a low-key statement, "we used to.." or "you liked…, didn't you?".

      But sad to say, it rarely goes well, and I often find myself sitting in total silence for most of the visit, despite the fact that mum can still speak and there's so much I want to say. I just feel paralysed, because I can never tell from one moment to the next what might be acceptable to her.

      What's more upsetting, in a way, is that she appears to be able to engage with the care-workers about some of these things - for instance, spontaneously coming out with "reminiscences" to them (although these may not be factually correct), which she never does to me.

      Likewise, she seems at least to tolerate CDs (her own) that they put on for her in her room; but last week when I visited, she spoke only twice in my presence - to exclaim, "Oh, shut up! Shut up!" to the disc I had put on. Of course, it may have been that she was just fed up with that particular CD, but it wasn't something chosen without regard to her "known" taste; it was Janet Baker, formerly one of her favourite singers, another of whose recordings she had appeared to enjoy (or tolerate) before I arrived.

      I have come to the conclusion that most things are now sensory overload for her and she generally prefers to be quiet. It is so sad, when she was previously such a gregarious person, and I know we don't have long together; but of course I can only be guided by her behaviour.

      Thanks for taking the time to read and comment. I hope this is not too dispiriting; everyone is different, of course.

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  9. So much of what you say resonates, even though everyone is different and how they cope (or not) with the effects of their dementia varies. The 'sensory overload' thing definitely applies to my mother and that was one of her earliest symptoms. She stiill does well in the cognitive tests apparently (even though they are always administered in her 2nd language and never in Welsh) but some of the behavioural stuff is in line with someone much further along the road. It's very hard to untangle what is a consequence of her dementia from the depression and anxiety she has had since my younger sister's death 16 years ago. Since my mother's last brain scan confirmed the vascular dementia it feels that she's been written off. They've labelled her and put her in the dementia box. The depression and anxiety are still her main presenting symptoms, but the services available focus on her memory. And on assessment not treatment or therapy.

    Frankly I can cope with her not being able to remember the stuff in the tests - random addresses or facts without context - and I know she'd rather say 'I don't remember' rather than risk getting a question wrong. The last thing a very anxious person who is aware of her intellectual limitations needs is bingo, a wordsearch or a quiz, particularly if she never enjoyed such things in the past. So much of what is available has very little impact on the kinds of behavioural challenges and dilemmas that face people caring for people with dementia from day to day.

    Your blog has helped me stop feeling that I was from another planet - maybe pointlessly ruminating or over-thinking things, or worrying too much about the human rights and dignity of the person I care for. I'm really glad I found it.

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  10. Yes, you're so right about the public/professional focus on "memory" (see my 2013 post 'Not Just Memory Problems' in right-hand archive). I'm often frustrated by this too, as loss of that kind of factual memory is really the least of it; but it's the thing laypeople can most easily grasp, I suppose, for PR purposes (e.g. ad campaigns for charity funding/awareness-raising), as the other symptoms are so complex and diverse.

    I'm afraid everything is geared to assessment, not treatment or therapy, because there is so little at present that works - and public bodies don't want to open the floodgates to funding claims. Which all leaves family very isolated. At least through social media we can now support each other.

    Thanks again for reading.

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