Sunday, January 8, 2012

TELL MRS MILL HER HUSBAND IS STILL DEAD: Oral histories from the dementia ward

The Alzheimer's Foundation of America recently sent me a card that reads, "A Season to Cherish Memories."

All ironies aside, many of my memories now do have to do with Alzheimer's.  This time last year I visited my mother for the next to last time, the time before the time she was dying and then passed.  (That last verb, which used to strike me as tired euphemism, now seems right; she passed on, she passed into, she passed away from me, from us, she passed out of time.)  My blog posts on that visit can be found on this archive page, starting (or ending on the blog) from 1/11/11.  "Ending from" is not a good phrase, except in blogging, so I'll leave it be.

During this past sabbatical year, when I was not with my mother, or blogging about dementia, I was traveling to talk about my blogging about dementia.  I developed a talk on how best to write Alzheimer's, which argued by example that experimental writing worked better than realist narrative, that giving voice to the Alzheimer's sufferer was preferable to hearing the voice of the caregiver or spouse.  It was a polemical piece, not nearly as good as the actual writing, I suspected, but sometimes such writing requires an introduction, a foreshadowing. As polemic it both explained and sometimes off-put.  But now I think I've found the positive critique--not the "don't write like this, but yes, do work like this . . . " in the form of a UK project, launched in 2003, called The Trebus Project, founded and run by David Clegg.

Clegg is an artist who gave up museums and galleries for the space of hospitals, of nursing and care homes.  He gave up the artist's eye/I for that of the editorial you.  He listens, accumulates stories, then edits them into short pieces, many of which are then acted out for radio programs.  You can find the project website here; they also have a Facebook page you can "like" for updates.  The volume of stories I have in hand is called Tell Mrs Mill Her Husband is Still Dead, available on the Trebus Project website, which jolted me back to the moment I recorded in Dementia Blog from the August 19, 2006 entry.  My mother was then spending much of her time looking for her mother and brother, both dead (I think) since the 1960s: "My mother has not said a word about her father; he is still dead."

Dementia is not just a disease, it is a temporal state, one in which the dead are still living, the speaker still inhabits an earlier moment in history, and time is not linear but circular.  History gives way to poetry, although they cannot ever be divorced.  Like my mother in her later years, the speakers in Tell Mrs Mill, are still living the Second World War.  Because most of them are English, some German, they remember the Battle of Britain from the perspective of children or young adults witnessing bombs, bodies, V2 rockets.  It is, as Mabel says, "A rather violent sort of poetry," this memory that "the bombing" (for example) "sounded worse at night," or that as Mrs. Mill herself puts it:

I remember the bombing . . . and taking cover . . . being careful not to show any light from the windows . . .  you could hear the planes coming . . . they seemed faster than the English planes . . . we were lucky we had an Anderson Shelter . . . but I was scared stiff . . . the bombing was very close to where I was living in Nunhill Road (159).

And there's Nelson, who saw through the reports that an English plane had crashed on its way home, "but it was too much damage."  He and his friends knew this was a V2 rocket.  Nelson later drove a lorry that carried crisps, many of which he seems to have eaten on the sly: "get your fingernail under the edge of the tin lid and you'd split the seal.  Have some of the crisps out and seal it back up again" (61).  Even Sam, whose Alzheimer's is deeper than most of the others, remembers something of the War ("Do you remember a nice-looking woman called Eva Braun?" he asks), though a few sentences later he writes, "I was 18 when I came to England [from St. Lucia, home to Derek Walcott].  I can't remember the history of me" (175).

Among the stories Clegg has gathered in his book, mainly soliloquies punctuated by occasional questions or prompts, are those by a gay man who is still reticent to say so, by some people who grew up so poor that (in Hilda's case) she had to have all her baby teeth pulled because her diet was so poor, and by many who were neglected and/or abused.  There are stories of how they met their partners, along with some fearful, quizzical assertions that they don't remember them.  Lots of dance halls, movie theaters.  For the most part, the details are relentlessly ordinary, and hardly a soul other than Isabella utters a polemic against dementia care: "Dementia care in this country doesn't exist . . . The problem is that . . . a great many people who are supposed to be carers . . . have contempt . . . for the loss of memory . . .and . . . the mental problems that that leads to . . . and take advantage of it.  They behave in the most diabolical way and think they can get away with it . . . because . . . no one would believe the poor woman with dementia" (112).

Clegg believes her.  He writes bluntly in the introduction, "Telling Stories": "Some people have questioned the honesty of the narrators and the historical accuracy of their stories, as if a lack of authenticity somehow distinguishes them from our own.  Dementia or not, we are all unreliable narrators; we all consciously and unconsciously change our stories all the time and we all lie" (12).  He also pointedly dismisses the "rewriting and sanitising [of] life stories without consent as a further form of protection and risks leaving people like Elsie Mill to struggle with darker thoughts and feelings in unsupported isolation" (13). 

As a literary critic, I love those moments when the tellers of the stories comment on their own telling, and on the book that Clegg has told them he's compiling.  "This book to help people remember," notes Fia, who finishes her thought by saying, "The future is something I try to forget" (17).  Mabel calls it a test, this "trying to remember a memory of a memory" (29).  Leonard is one of the few whose language is itself affected/afflicted by the illness (these are mainly early to middle Alzheimer's patients, the ones who still speak in sentences with beginnings and ends).  He tells the listener that he's "got this euthanasia in the back of my head . . . it doesn't hurt a bit . . . and don't worry it isn't contagious . . . but . . . it just means that by the time I finish what I'm saying I'll have forgotten what price I offered you" (47).  Like the woman who thinks of everyone arounde her as passenger on a train, Leonard, who owned an art gallery, thinks of his interlocutors as potential customers.  The nouns and verbs of our working lives survive into the afterlife of metaphor.  And Mrs Mill, in some ways the book's fulcrum, its heroine, begins her speaking by saying, "I'm so pleased to do this . . . I never thought I was popular enough to write a biography.  I was born in Shropshire" (157).  Clearly, she remembers the autobiographical form, beginning as she does with her own birth. 

The cd that came with the book contains the voices of actors performing some of the monologues.  What the cd offers us beyond the book's words are the regional accents that inhabit Alzheimer's homes; in my mother's, there were New England accents, Spanish accent, New York Jewish accents, and then there were those who had gone back to their original language, like Dutch.  The sounds of the voices are living a time that no longer much exists (at least extrapolating them to the American context, as I am).  There are upper class accents, northern English accents, West Indian accent, lower class accents.  Alzheimer's patients may forget vast swatches of their own histories, but they do not forget their vowels.

One of my favorite voices is that of Morris, a Yorkshireman, who starts talking as a balloon is being thrown around the room--typical recreation for the elders.  He grew up working in a mill, as his mother had done.  Perhaps typical of working class boys, he turned to sports.  He was also reacting to his mother's constant illness.  His first sight of a cricket pitch is from a doctor's office where his mother has one.  "I used to watch the cricket," he reports, "while she was in the doctor's" (115).  His father was ok, but always too tired.  Morris's monologue turns back and back again to his prowess at athletics.  "What the hell did I do?" he asks.  "I was always playing football with the school . . . I got into cricket and I was good . . .and I was captain of football at school and cricket . . .kids idolised me at Brighouse and further than that . . . I was very good . . . really good" (115).  Even as he falls in love with Betty, married to another man, he remembers his sports accomplishments, but then also his gambling problem, which derailed his relationship with her.  It was an October to December affair, he remembers. He played snooker, he says, so well that he "could really have been someone" (117).  He was supposed to take her to the station (her father was also a gambler) but he did not.  "I always won . . .from then I was always a gambler . . . I couldn't stop" (117).

Maybe it's the transparency of a story like this one that makes it so moving; what Morris has lost is his cover, and our covers almost always begin from words.  As Clegg notes at the beginning, we all lie.  These voices seem to lie less because they cannot lie low.  They say what they think, they say what they remember, and they admit to their actless act of forgetting.  What could be more honest than John's admission of his lost memory: "All I remember about my grandfather isn't really a memory at all . . . all I've got is . . . not an image . . . I remember somebody in the next room . . . someone in the bed . . . and my mother saying it was my grandfather . . . he had gone out or gone in . . . Shakespeare was much more specific with his ghosts" (85). 

If they invent, re-imagine, it's not to impress the listener, but because "confusion" takes our contrivances away.  That strikes me as one of the great beauties of this book, its honesty.  The honesty is that of the speakers, but also David Clegg's.  The stories are funny, and sad, and mixed up, but they are true, even if they are not--as Clegg puts it in the introduction--"authentic," by which one might mean "accurate."  Accuracy be damned.  These are the truth.

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