Tag Archives: dementia

Dementia Blog: reading backwards

Susan M. Schultz, Dementia Blog (Singing Horse Press 2008)

Pam Brown turned up in my comments section recently to recommend this book. How could I not seek it out?

Like Rocky & Gawenda, it started life as a blog. Unlike R&G, it has kept many blog trappings: date and time stamps, a note of the number of comments on each post (though not the comments themselves), and every so often a list of links (‘About me’, ‘View my complete profile’ and so on, but not any actual URLs). More consequentially, the entries appear in reverse chronological order, as in an archived blog. Unlike Michael Gawenda’s blog, the one that gave birth to this book is no longer on line – at least, my googling attempts came up with zip. The book is meant to stand in its own two covers.

And it does. In just over 50 ‘blog entries’, most of them roughly one and a half pages long, we move from January 2007, when the poet’s mother is living in a dementia facility, back to the beginning of August 2006, when the poet and her family visit the mother who is still living at home with the kind of difficulty and drama familiar to anyone who has a relative with Alzheimer’s or, as they say, a related disorder. So there’s a strong narrative backbone to the book. But this isn’t a novel disguised as a blog: within the blog entries, narrative does not rule. I suppose they count as prose poems, but however you classify them they make an excellent read. They reflect the multiple roles of the writer: daughter of a woman with deepening dementia; mother of two adopted children, five and seven years old and learning to read and write; creative writing teacher variously dismayed and stimulated by her students; citizen responding to the egregiousness of Bush & Rumsfeld; poet reflecting on poetics and the work of other poets, and also – of course – doing the thing that poets do with language and experience, which includes butting those different subjects up against each other, interweaving them, sometimes fusing, even confusing them, finding meaning and hints of meaning in them.

I probably would have found it unreadable as an actual blog, suffering as I do from Internet-related shrunken attention span (IRSAS – you saw the acronym here first). It invites focus, concentration, memory, deep engagement. But, speaking as one who generally finds prose poems alienating and reads them as not much different from bad prose, I found it completely accessible, and engaging. As usual in contemporary poetry, there’s quite a lot of obscurity, but when the subject is dementia and the loss of coherence, references I don’t understand – whether to US sports culture or political journalism, to poetic theory or to people in the poet’s life – I feel the momentary disorientation less as a problem than as another enactment of the theme.

The first/last couple of blog entries were printed in Jacket 35. They are the most vivid evocation of the social life of a dementia ward I’ve yet seen, but the book is much more various than they might lead you to believe. Perhaps I can quote a couple of paragraphs from one of the early entries towards the end of the book, posted at 6:27 am Saturday, August 05, 2006 (because my WordPress theme italicises indented quotes and ignores instructions to leave words upright, I’ve bolded the words that are in itals in the original):

–Eleanor called to say that Mom had been angry at Milt, but was amazingly lucid yesterday. She knows what’s going on in Russia. I wonder what is going on in Russia.

–Is there a Dementia for Dummies?

–How would it define words like knowledge, or like wisdom. Let alone safety and comfort. At the end, comfort is our wisdom. The philosophy of consolation. The minor fictions that give us another hour before worry’s onset, if we’re lucky.

Is that creature woman coming tomorrow? Martha, that is rude; you shouldn’t say that about people. Sara is coming tomorrow.

Sangha wonders what the words cease fire mean. We watch news of rockets and bombings, see bodies taken out of ruins. Rice says there is no civil war in Iraq; there are sectarian tensions. When the reporter mutters, she allows that some of the tensions are violent.

I have never said anything overly optimistic about the situation in Iraq, says Donald Rumsfeld. You’d have to look like the dickens.

I plan to reread this.

Poetry, dementia

It seems Penny isn’t the only one to find that poetry with strong rhymes goes down well with people with dementia. Harriet the Blog quotes The Orlando Sentinel about the Alzheimer’s Poetry Project:

The Alzheimer’s Poetry Project, founded by New York poet Gary Glazner, is not built on the traditional, stand-at-the-podium-and-read poetry recital. Rather, it uses the simple rhymes typically learned in childhood or whimsical works created on the spot with audience participation. The facilitator moves among the seniors, holding their hands, touching their shoulders, gently prodding them to share their thoughts, reawakening long-ago memories.

‘There was a guy in [one] group, his head was down, he wasn’t participating, and I said the Longfellow poem, “I shot an arrow in the air…”‘ Glazner says, recalling the initial workshop that spawned the project. “And his eyes suddenly popped open, and he said, “It fell to earth, I know not where.” In that instant, he was back with us and was able to participate. It was very powerful.”

The Project’s web site has a book for sale with 75 poems they use.

Puppies

Puppies (Snapshot series, Hinkler Books 2008)

I couldn’t find a photo of this little book’s cover online, so you’ll have to take my word for it that it’s very cute. The publisher’s site gives its ‘interest age’ as 6–12 years. I can report that the interest extends well beyond that, though I suppose a notice saying ‘Interest Age: 6–12 years and the demented’ wouldn’t sell many books.

But this book has featured in many pleasant interchanges with Mollie in the nursing home. Yesterday morning, it was sitting in the middle of her table. She gestured towards it with fluttering fingers. Though it was pretty much the same gesture that she’d used towards the piece of buttered raisin bread the nurse had given her with a piece of kitchen tongs, and which she had no intention of putting anywhere near her mouth, I interpreted her to mean that she wanted to look at the book. I placed it right in front of her, closed. With some difficulty, she opened it, and said, in he fluttering voice, ‘That’s funny.’ I was sitting on her left, and had to stand and peer over the half-open cover to see the page she’d opened to. It was the end papers, plain green except where someone had printed her name in block letters. She touched her first name with an index finger and said, half questioning, half marvelling, ‘Mollie.’ And if that lovely moment wasn’t enough, when we reached page five or so, where there is a lot of text, she touched the last word on the page, and read it too, only sightly more tentatively, ‘Puppies.’

It may not have intellectual heft of her reading of twenty years ago, but it looks to me as if there’s still pleasure to be had in reading at her intellectual limit.

A Life Like Other People’s

Alan Bennett, A Life Like Other People’s (Profile 2009)

Probably inspired by the success of Alan Bennett’s little hardcover, The Uncommon Reader, the publishers have given us this physically similar book. But where the earlier was a whimsical piece in which the Queen discovers reading for pleasure, with mildly catastrophic results, this is perfectly serious memoir. Originally published as part of the 650 page volume Untold Stories, it explores the themes of family secrets, depression, dementia and suicide in the lives of Bennett’s grandparents, parents and aunties. It’s a testament to his skill, and to the depth of his affection for his family, that for all its grim subject matter the book is a joy to read. The prose is unfailingly urbane, and he manages to convey multiple perspectives with apparent ease: for example, when one of his aunties (a term whose class connotations he carefully spells out) decides to take apart his mother’s stove to give it a thorough cleaning, we are amused at the spectacle of Bennett’s father flying into a rage (a very uncommon event) at this dire insult to his wife, and at the same time we realise that it was a dire insult.

Perhaps partly because I’ve tried something similar in the predecessor of this blog, I was taken by his attempt to convey the conversation of a demented aunty. His description is quite long, but this little bit may give you an idea, both of its truthfulness and of its elegance:

Embarking on one story, she switches almost instantly to another, and while her sentences still retain grammatical form they have no sequence or sense. Words pour out of her as they always have and with the same vivacity and hunger for your attention. But to listen to they are utterly bewildering, following the sense like trying to track a particular ripple in a pelting torrent of talk.

As I was reading, I found myself thinking of AD Hope’s lines about Yeats (see, the poems you study in your youth hang around in your brain forever): ‘To have found at last that noble, candid speech / In which all things worth saying may be said’. It’s not exactly the same thing, but it seemed that Bennett could write about a huge range of  human experience without his prose ever stumbling. We know, for instance, the kind of emotional tumult involved in the experience referred to in this sentence: ‘While sexual intercourse did not quite begin in 1974 it was certainly the year when sex was available pretty much for the asking … or maybe I had just learned the right way to ask.’ What did Freud say about jokes? Not that this is unconscious – on the contrary. And it’s not that he’s hiding anything. It’s just that the prose is not about self-revelation, but about elegant, usually witty communication. I wasn’t sure this was entirely a good thing, whether a little raw emotion mightn’t have made a more interesting book. But he was ahead of me. Towards the end of the book, when Bennett’s mother, after decades in and out of psychiatric institutions, ECT, is in advanced dementia in a nursing home, he winces at the way the employees address her, calling her loudly by a diminutive that was never hers, kissing her lavishly, who was always physically reserved. He observes with irritation that his mother seems to enjoy it, and goes on:

But then taste has always been my handicap, and so here when in this sponged and squeegeed bedroom with an audience of indifferent old women I do not care to unbend, call my mother ‘chick’, fetch my face close to hers and tell her or shout at her how much I love her and how we all love her and what a treasure she is.
Instead, smiling sadly, I lightly stroke her limp hand, so ungarish my display of affection I might be the curate, not the son.
The nurses (or whatever) have more sense. They know they are in a ‘Carry On’ film. I am playing it like it’s ‘Brief Encounter’.

There are photos of the Bennett parents scattered throughout. Almost as much as the prose, they convey the deep current of love that flows through the book.

Did I mention that it’s very funny?

Verbatim

Today at the dementia ward, not a word of exaggeration:

Penny: A choir is coming soon.
Dot: (alarmed) There’s a fire?
Penny: No, there’s going to be a choir.
Dot: There’s going to be a fire?
Penny: No. A choir! They’re going to come here and sing some lovely songs.
Dot: I couldn’t care less about the songs.
Penny: That’s not true, Dot. You love songs. You were just singing along with the CD a minute ago.
Dot: Yes, but not if we’re all going to be burned to death.

Mollie’s conversation, meanwhile, consists almost entirely of nods and headshakes. We tried to entice her into exercising her arms by playing with a balloon. After responding with apparent indifference for a while, she eventually batted the balloon in my direction with an emphatic backhander. I thought she had a mean look in her eye when she did it, but thought I must be mistaken, because she has such a sweet disposition. Later Penny confirmed that she shared my impression: every time Mollie hit the ball in my direction it was as if to say, ‘Take that, and f*** off!’

Olga from the Volga

Sunday was Mollie’s 87th birthday. We turned up at the dementia dining room en masse (if six people can be called a masse) to celebrate, bearing a cake, chocolates and a gift. Penny and I, having decided to give Mollie a book, had contemplated a coffee-table extravaganza filled with sumptuous photos of Australian landscapes, and a number of similarly attractive art books. In the end, though, hang the absence of expense, we opted for two little books, one full of cute puppy photoes and the other with even cuter kittens.

When we arrived at the nursing home, Mollie was more deeply withdrawn into herself than I’ve ever seen her, so deeply that it took her quite a while to recognise, or at least acknowledge, that she had any connection at all to any of us. Even the kittens left her blank and listless, and the chocolates might as well have been chunks of gravel. Penny’s persistent, loving cheerfulness finally stirred the embers of relationship, and once there was a glow, it was the kittens that provoked a smile. By the time we left, things felt not so different from what passes for normal at this stage.

In that context, it was initially hard to appreciate the woman who persistently attempted to join our lilttle gathering.

Our gate-crasher is new to the dementia wing – none of us had seen her before – and is not ready by a long shot to lapse into slack-jawed impassivity. We first became aware of her when she came up behind Alex and started playing with his shoulder-length hair, a little like an expensive hairdresser feeling the weight of a customer’s hair while deciding what wonder to work on it. As her fingers moved, she murmured softly, sweetly and incomprehensibly in his ear. Alex gave a reasonably convincing impersonation of a young man about to die of embarrassment. We’re used to residents approaching us and talking in broken sentences (‘I’m sorry to interr but they’ll be coming soon to when umbrella the ice cream,’ another woman had said to us, earlier, and then wandered off). But Alex’s admirer wasn’t talking English-based dementia-speak. After a couple of minutes, I became convinced it was Russian, or at least Russian-based. I asked her, ‘Russki?’ In English, she said, ‘I speak Russian, Belorusian, Japanese.’

Tiring of Alex for the moment she walked around the table and picked up Mollie’s two new books. Mollie had recovered her spirits enough by then to look alarmed. Penny tried to  take the books back, but our visitor held on tight and moved out of her reach. ‘Do something!’ she said to me.

So I engaged the book thief in conversation. I had five words in Russian: dosvidenya, spasibo, Kristos viskriest, and da and niet. Perhaps it was a da that had tipped me off to the Russian in the first place. It wasn’t much, but enough to turn our unwanted guest’s attention to me. Soon I’d remembered pravda, nichevor and borge moi. (Bear in mind that these are all words picked up from my first quasi mother-in-law and from Russian movies, so I expect the spelling is off.) I told her my name. She said, in English, ‘I am Olga,’ then smiled and added, ‘Olga from the Volga.’ She spoke at length, cheerily, every now and then pausing for me to give an opinion. It didn’t seem to phase her when I indicated at every pause that I had no idea what she’d just said. She scowled and shook her fist at Penny’s back. ‘Niet,’ I said, stroking the threatened back, ‘she’s my sweetheart.’ That provoked what was probably a Russian harrumph, but a little later she put the books back on the table in front of Penny and went back to Alex’s hair.

Around about then, I went for help. I explained our difficulty at the nursing station and returned to the dining room with two determined women in uniform in tow. One of them put her arm gently around Olga’s waist and led her away. Olga and I squeezed each other’s hands as she left. I said ‘Dosvedenya,’ hoping it meant ‘See you later.’

And a little later, like a coda, another new resident came drifting past speaking loudly in what sounded like German.