Friday, 9 January 2015

Unlocking the Hard Word Box by Julia Jones

A Poet's Exploration
of Dementia and Ageing
by Sarah Hesketh
"Look, let's be clear: don't imagine
there is anybody here who enjoys
dribbling poetry, If you think we're
holding stars on our tongues
that's your eyes want testing.
If you hear music when we grunt
you haven't understood exactly
what it is we needed to say.
You might enjoy the ruins
of our grammar, the way we
chew up our nouns to song.
It's not your hand that's getting
thinner on the blanket.
Please don't ask us to speak
the hard words all at once."
(The Hard Words)

Words go, as Alzheimer's Disease shrivels the brain. Nouns go first, it seems to me - and proper nouns first of all. They are perhaps the hardest words and the words that define an identity.
"It really hurts me," said one of my sons, "that Boommie doesn't know who I am."
"But she does,'" I tried to tell him. "She just can't remember your name."

"How can I have forgotten that?" says my mother in distress.
I try to comfort her with science. I tell her about a TV programme that I watched where there was a middle-aged stroke victim, an attractive, articulate woman -- I think she might even have been an interpreter before the Clot Stopped. Her brain was wired-up to one of those scanners and the researcher was showing her a pineapple. She could describe it, she could tell us about its taste,where it came from and how it might be used. She could not say the name. As she struggled and circumlocuted the electrodes connected to the different areas inside her skull flashed bright or brighter. Only the light connected to the area that stores nouns stayed obstinately blank.

I had never known that there was an area in the brain specifically dedicated to nouns. It seems extraordinary until one thinks a little more. What are those first words that most babies learn? Mumma, Dadda, dog, duck, teddy, lorry. First Word books are lists and lists of names. First into the mind, last out? It doesn't seem to work like that.

My mother dancing at Turtle Song
a music project that was one of the
highlights of her recent years
When I tell my mother about the TV programme and that specific physical area of the brain, it comforts her for a while. It sounds scientific. It is. It tells her that it's not her fault that she can't remember the word for the clouds that she's looking at out of her window  -- "you know Jul, those big things that go past up there" -- or the name of the carer who has made her tea and showered her and danced a little dance with her.
"Why can't I remember? She'll think I'm so rude."
"No she won't mum. She knows it's not your fault. You've got an illness."
'"What illness? I'm not ill ...oh, you mean that horrible man, the one that's inside my head." And she touches a particular spot on her right temple where she says she has That Feeling.
"But he wasn't a bad man, mum. He was a good man. He was trying to explain to people that forgetting things is an illness. You can't help it."

But give it thirty seconds and my scientific explanation's gone: only the feelings of inadequacy, guilt and fear remain.

When Sarah Hesketh began work on the poems in the Hard Word Box, it was as an artist-in-residence at the Lady Elsie Finney House, a dementia care home in Preston, Lancashire.
"For the residents I was working with language was something difficult; something they now had to fight with; something, even, to be afraid of."

Hesketh developed this perception further:
"What I hadn't anticipated was how quickly, when people are no longer trusted to speak for themselves, language and texts begin to accrue around them, One of the first things I had to do was learn the language of care: people are 'service users'; looking after a person is 'person-centred care'; you don't suffer from dementia, you are a person with dementia. Then I became fascinated with the language of the care plans that are produced for each resident. These plans are meant to provide a record of  person's interests, their likes and dislikes, so that the staff can develop a better understanding of the people it their care. The result was a strange set of profiles comprised of often random-sounding details. Just as people begin to struggle to articulate clearly who they are, a whole set of alternative identities are being created for them."

The word NO is an early one to trip from the blessed infant's tongue -- and that, and its variants,  appears to remain. My mother shouts it out quite often,  together with a terrible wailing "lay, lay, lay".  In Hesketh's poem, Doreen, the bland language of the care plan (or the Who Am I? document) is interrupted by shouts. "Doreen is a widow / Doreen has one son and a daughter in law in the Preston area / Doreen loves flowers" "HORRIBLE HORRIBLE HORRIBLE HORRIBLE" "SHUT UP SHUT UP SHUT UP SHUT UP"

"If you hear music when we grunt / you haven't understood what it is / exactly that we needed to say." (The Hard Words) There is very little prettifying that can be done with the hard facts of dementia. All we can do, if we have to speak on behalf of those who can no longer reliably retrieve words they need, is to choose our language with utmost care, make it the best, the most sensitive and individual that is in our power.

My friend, the novelist Nicci Gerrard, watched her father gradually succumbing to Alzheimer's:  "I sometimes thought of him as a great city whose lights were going out but so slowly that you hardly noticed." 
Then he went into hospital to have his leg ulcers treated. He was there for five weeks with very little support from his loving family as the ward was closed to visitors for much of his stay.  "My father entered hospital articulate and able, he came out a broken man."
Nicci's eloquence and grief have touched the hearts of thousands: both those who have suffered similar loss and those who imagine, for one chilling moment, what it might have been like for John Gerrard, as he lay there those five weeks.

Five weeks. He went in strong, mobile, healthy, continent, reasonably articulate, cheerful and able to lead a fulfilled daily life with my mother. He came out skeletal, incontinent, immobile, incoherent, bewildered, quite lost. There was nothing he could do for himself and this man, so dependable and so competent, was now utterly vulnerable. He could not sit up. He could not turn over. He could not put one foot in front of the other. He could not lift a fork or a glass to his mouth. He could not string words into a sentence – indeed, he could barely make a word...He did not know where he was, who most of his friends were, sometimes perhaps he no longer knew who he himself was.

These words have inspired John's Campaign for the right to stay with people with dementia in hospital. Sarah Hesketh allowed me to speak about it at the launch of The Hard Word Box but however skilled with written or spoken language all of us try to be, we must remember that:
"It's not (y)our hand that's getting
thinner on the blanket."

Yet.

So I'll finish (once again) with the letter of support that my mother wrote - and which Nicci pushed into the hand of David Cameron's minder as the Prime Minister strode away from the Andrew Marr show last Sunday.


20 comments:

Lee said...

This is a fight worth fighting - thank you.

JO said...

My lovely aunt, with dementia, doesn't know where she is, but remembers the poetry she learned at school. So we talk about Wordsworth but not about what she had for breakfast!

julia jones said...

Thank you Lee and Jo - and anyway Wordsworth much better than soggy toast

Bill Kirton said...

A beautiful, tender and very moving post, Julia. How awful to think how losing words separates us so definitively from our world.

Chris Longmuir said...

Yes, Julia, I agree with Bill. I so desperately want to make a comment but don't know what to say!

Sandra Horn said...

Thank you, Julia

Lydia Bennet said...

Wonderful post Julia and as you know I too feel strongly about this. There are two main (but related) reasons such horrible changes take place in people with dementia in hospital - one is physical neglect, simply putting food near them and then swinging by a taking it away, ditto drinks, with nobody assigned responsibility for checking their condition or helping them. The other is the sudden removal of all clues and context for their still-remembered life, history and identity. The appallingly sensory-deprived surroundings, cut off from all nature and home,to say nothing of the voices and attention of loved ones, have the effect of accelerating the progress of dementia. Some of this is due to short staffing, more of it is due to poor organisation and the changes begun by Thatcher and continued by the present govt of weakening the NHS, (running service industries as a business, outsourcing cleaning etc). The sudden tightening of visiting hours and patient contact with family is due to MRSA. In defence against the masses of people coming out of hospitals with this and similar conditions, the upper echelons of the hospitals announced that it was actually visitors bringing this in, not the hospitals growing it through overuse of antibiotics but the underuse of decent hygiene. The fact that nobody ever seems to catch it except via a hospital is ignored. This brought about a clamp down on visitors and also a ban on flowers and plants, which I feel is cruel. This is why it is a fight to get carers and family members in with dementia patients. The hospitals don't want to spend any time with them, but they don't want us in there 'getting in the way' either. I've worked with dementia patients in hospital who have been labeled as difficult by staff simply because they are confused and, surprise surprise, would rather go home! Good luck with the campaign and thank you and Nicci Gerrard and others for highlighting this situation. sorry for long comment.

Mari Biella said...

Beautiful, moving post - thank you.

julia jones said...

You don't just feel strongly Valerie, you've been there and know what you're talking about. May I quote you on the John's campaign fb page, please?

Lydia Bennet said...

Absolutely Julia please do. I went through this with my mother as you know then spent a couple of years working with older people including those with dementia.

Kathleen Jones said...

Such a beautiful post, Julia. It makes me feel so very, very sad that the organisation that is supposed to care for those who need it is unable to do so.

Cally Wight said...

Two easy words Julia love. Respect. Easy to say, but not so easy to acchieve in caring it seems. I've been following your campaign, and thinking a lot about you and your mum, music , horses, memories and communication. Hard words says it all. It strikes me we need something akin to Maggie's centres for dementia care... Again, easy to say, but how to achieve. Awareness is key so thanks for sharing and I hope that 2015 sees some real progress, as well as some joy for you all while June is still with you. Every day is a gift, yes even those days that seem like deep dark pits!

Lydia Bennet said...

there are problems with dementia care generally, but the problem in hospitals is often that those with dementia have to be admitted for other conditions, and there is no provision for this at all.

Fran B said...

Thanks for this. I've forwarded it to a friend who is doing a PhD in palliative care for people with dementia. I think she may find it enlightening.

julia jones said...

There's an increasing amount of good writing about dementia -- Cally introduced me to one especially good book by a psychiatrist whose success appeared to lie in steadfastly treating each patient as an individual. Of course one would like to think that was obvious - but it SO is not.
Oliver James's Contented Dementia stresses emotional understanding, trust-building and reassurance and Sally Magnusson's Where Memories Go is a masterpiece of individual observation. The response of poets like Sarah Hesketh and Valerie Laws promotes the empathetic understanding that this is not a different species, The Old'n'Ill. These people are US, but depleted and afraid. They need MORE personal care, MORE emotional understanding, more love.

julia jones said...

Fran B - your friend might be interested in some of the contributions to the John's Campaign facebook page

Enid Richemont said...

This article rings a very uncomfortable bell for me. Last April, a year after losing my beloved David, trying to cope, and, approximately, coping, I had to be admitted to hospital following a sudden bleed.

I was placed on a geriatric ward, for two and a half days, for further investigation. What was wrong were three ulcers, easily treatable with medication. It was the second worst experience of my life, from which I am still suffering. I went in as a basically healthy woman, and came out a very sick and frightened one. A sprained ankle, which was slowly healing, became much worse - sounds illogical, but it's true.

As a result of this, I have set up a Living Will, so something positive came out of it. As you know, I'm still working/writing, with a few small triumphs to my name, but who knows what's in store? Hospitals do their best, but they are not good places (and Julia, as you already know, I support John's Campaign.

Ann Evans said...

What a moving post, Julia. It brought back memories of my mother in law who passed away 9 years ago. Her experience was similar except she'd gone into a care home in a wing for people with dementia. We didn't think she belonged there as she was much more 'with it' than the others. Within a very short time however, she had deteriorated to the level of the others. It's just so tragic and frightening.

Juxtabook said...

Very moving piece Julia. It is hard to believe that this right is not already the case. It's like them excluding fathers from maternity wards for 20 hours out of 24 as they did decades ago.

It would be good if everyone could have at least one named person who did not have to adhere to visiting times. Lots of elderly people deteriorate in hospital whether they've memory problems or not. I'm 43 and I'd like to know that someone could be there if I wanted them whatever time, if I was in hospital!

I do appreciate though that for those with dementia it is all so much worse.

PS - your links to John's Campaign don't work.

julia jones said...

Thanks Juxtabook - I'll take a look at the links. Interestingly Nicci and I are discovering that there are hospitals that DO offer 'Carer's Passports' which do just what you / we want. However many do not mention this, even in the smallest of small website print, and even those that are really committed and trying find it hard to get them embedded in the consciousness of either the generality of ward staff OR the carers / visitors themselves. A culture change is what is needed.