Dementia and self esteem

This is such a wonderful blog written by a truly inspirational woman, writer, mother, daughter. and much much more..!

self-esteemUnfortunately, I had low self esteem right into my thirties, like a dark cloud hanging out in the background of my subconscious. I was quite shy as a child, and always wanting approval as we rarely received positive feedback, no matter how well we did at something. My self esteem developed after many years of reading and attending motivational conferences and seminars, lots of self evaluation and reflection, in fact, a lot of hard work!

It did not come easily to me, and with broken relationships and the death of someone I had loved, it was often easier to ignore my own worth, and blame myself. I have delved deep into my subconscious, and many of my book shelves definitely look like the inside of an Adelaide self help bookshop called COPE!

My self esteem was soaring, not egotistically, but in a healthy way, and then along came dementia. The shame, stigma, discrimination and…

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Benjamin Button Effect: What Do You Do When Your Mom Cries Out Like a Baby?

Role reversal: the loving hands of a daughter taking care of her mother…

My Demented Mom

3728905329_4b47a1b5cc_bIt was around 8pm last night when I started watching some of the videos I had taken of my mom. In the more recent ones, she is yelling — a lot. That’s all she can do. She can’t talk. I take these videos because, I feel like people don’t believe me when I say, ‘I think she’s in pain.’ And because past is prologue — I once had to show my video of her crying to the nurse at her home and the hospice team in order for them to give her morphine and up her Haldol — I take videos so I am always armed with evidence.

And they wonder why caregivers lose their minds…………………………

As I watched these videos of her yelling, her face twisted and anguished, I told my boyfriend who was watching these 30 second snippets with me, that someone in my support group said that…

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her hand – a wonderful poem written by a mother for her daughter for Valentine’s day…

girl in the hat

her hand by anna fonté

hot & solid in my hand, when i hold hers i grip a hunk of liquid crystal baked in sun
it worms into me, swimming veins, up to my armpit
where it curls inside my chest
and so i press her fingers to steady the flutter.
but also, there is the wonder
is it
herwarmth or mine or ours together
that radiates from our grip & into the air around us
to form a pocket of energy, a fierce iridescence
trembling strength?
& when we walk like that, who’s holding whom

her handinmy hand, mine in hers
the place where we meet, the flesh of our connection
no, it is a fusion
& if we wore  mood rings, they’d be indigo, inky as the night sky, brimming with milky galaxies & dark holes of ayahuascan wonder, infinite & ineffable, inscribed inside with two…

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Italian Gestures

ges·tic·u·late

My fascination with gesticulating consciously started in my early 20s when I embarked on undergraduate studies in Italian. On choosing a foreign language to study during my BA with English Literature I chose Italian over Spanish largely influenced by my mother, an artist, who suggested I live and study in Italy, such an inspiring country for arts, history, and culture – and not forgetting the delicious delicacies of course. Italians of all cultures – in my mind – are the most infamous for talking with their hands. A joke (however funny or not funny) illustrates this notion:
‘How do you silence an Italian?” – ‘handcuff them’.
Newton
Helmut Newton’s xray of a pair of hands cuffed springs to mind. I was bestowed his book quite recently, and randomly, a beast of a book (11 x 15 inches) the biggest photo book I have in my collection and this one in particular is Helmut’s:
Newton book
It seems his parents unwittingly chose him a name that sounds like the end of a male member, in English at least, which he then molded his identity around – given the “King of Kinky” ‘s notoriety as a fetishistic photographer and being –
“The photographer that feminists loved to hate.”
Newton’s handcuffed xray reminds me of the first photographic body of work I ever made whilst living in Naples – before having a ‘formal’ fine art education – Vedi Napoli e Poi Muori or See Naples and Die… 
Venturing on a tour of some catacombs in Naples, once a place of worship where locals would ask the deceased for such requests as miracle health cures and the winning lottery numbers, I shot images of human skulls and bones that were incorporated into this series.
© Copyright Hester Jones.
In David McNeill’s Gesture: A Psycholinguistic Approach he talks about ‘Emblems’ as “conventionalized signs, such as thumbs-up or the ring (first finger and thumb tips touching, other fingers extended) for “OK”, and others less polite.”
McNeill writes that “Emblems or quotable gestures are culturally specific, have standard forms and significances, and vary from place to place.” Referring to Kendon (1995) who has studied the gesture culture of Naples “a locale with an exceptionally rich repertoire of quotable gestures.”
Bones
© Copyright Hester Jones.
Having lived in Naples for 3 years I became even more fascinated about gesticulation and mastering this ‘unspoken’ Italian language – a friend bestowed me a book entitled Comme te l’aggia dicere? Ovvero l’arte gestuale a NapoliThe Art of Gestures in Naples.  
The Horn and The Fig, Neapolitan Gestures
McNeill continues, “These gestures are meaningful without speech, although they also occur with speech. They function like illocutionary force markers, rather than propositions, the mode of gesticulation, and when they occur they time with speech quite differently. A single Neapolitan emblem for ‘insistent query’ (the ‘purse’ or mano a borsa: prototypically, the hand palm up, the fingers and thumb loosely bunched together at the top, and rocking up and down) was observed in one case stretching over several utterances and then continuing into the next speaker’s turn, still demanding clarification.”
Moreover, McNeill points out that  many emblems have deep historical roots “far outlasting the spoken languages with which they occur. Some go back to Roman times (Morris et al. 1979), including the infamous ‘finger’, beloved of the American road – it would have been understood by Julius Caesar.”
Raymond Tallis‘ fantastic book Michelangelo’s Finger An Exploration of Everyday Transendence quite literally pointed me in the right direction in my research of the hand and the importance of, and quite uniquely, the human’s ability to point using the index finger. Tallis explores the role the index finger plays in the development of our humanity – starting from Michelangelo’s famous fresco on the ceiling of the Sistine Chapel, where the index fingers of God and Man are central to the representation of the Creation of Adam. If you are unfamiliar with the work of Tallis it is worth me pointing out  that he is a philosopher, poet, novelist and cultural critic and was until recently a physician and clinical scientist.
Michelangelo's Fingers
Tallis describes how “The hand has remained the ubiquitous, primordial tool through which other tools operate, both the final common pathway for for tool use and a tool in its own right. Even those quasi-autonomous tools, machines, require a hand on the tiller or wheel or lever, or a finger on the button.”
He talks about the “emergence of the hand as a tool – ‘the tool of tools’ according to Aristotle.”  Then he draws our attention to how the hand not only has “manipulative functions” but has “a crucial cognitive role, being the chief organ of touch” and is “a major communicator, boasting an almost infinite variety of gestures, one of which is the pointing that is our present concern.” I highly recommend reading this book in particular, and Tallis’ other works including The Hand: A Philosophical Inquiry into Human Being, from his Handkind series, which I have feasted my eyes upon and continue to devour again, and again….
Persons living with dementia gradually lose the ability to carry out day-to-day tasks that most of us take for granted, such as cleaning teeth, washing up, cooking a meal.  Whence it is my quest to further explore this losing of ‘connection’ and functioning between the hands and brain and  benefits of arts participation – by connecting the hands and the creative part of the brain that largely remains intact until the later stages of the disease.
Moreover, communication with the hands and gestures is pertinent to my interest in dementia research, this relation between the hands and the brain, and helping people living with this disease to live better and help liberate them from anxiety, confusion or depression.
And what better place to start this gesticulation research than in Italy!
“Communication is more than just language and speech. Non-verbal communication is increasingly important as the dementia progresses. This may include hand gestures, body language, facial expressions, eye contact, touch, and even actions. For people with dementia who get frustrated or angry when having a conversation, or can not longer find the words to express themselves, can still use non-verbal communication to connect with others. Try using non-verbal communication to:

  • Reinforce a message – asking a person if they want something to eat, and then pointing to the refrigerator, helps clarify the question.
  • Convey agreement or disagreement – nodding “yes” or shaking your head “no” will help the person with dementia understand how you feel.
  • Take the place of words – a warm smile or hug conveys a message just as strongly as words can.”

The Department of Health in Australia highlights useful strategies for helping to communicate better with people who are living with dementia, and other helpful advice:

“Memory and intellect deteriorate as dementia progresses, yet people with dementia continue to interact. How staff respond can have profound effects on a person’s wellbeing.”

Strategies

  • Talk to a person, rather than about them to others.
  • Address a person by their preferred name, not ‘dear’ or ‘love’.
  • Tell a person what you are doing or going to do.
  • Focus your full attention on the person and make eye contact.
  • Use words and sounds of encouragement.
  • Do not use a demeaning or condescending tone of voice or hostile gestures or stance.
  • Do not invade a person’s personal space.
  • Speak at a slower pace.
  • Pause between one topic and the next.
  • Use prompts such as pictures, photographs and simple signs.
  • Accept a person’s feelings.
  • Use non-threatening physical contact.
  • Do not make abrupt changes to routines.
  • Get to know a person’s life story so you have a store of background information for questions and conversations.Use individualised memory books to improve and keep communication skills.
  • Use written and pictorial signs in significant places around the facility.
  • Place memory charts containing photographs, brief statements about the person and conversation topics on bedroom walls and other appropriate places to aid communication.
  • Use other techniques and therapies that help communication like aromatherapy, attention focusing, bright light therapy, massage, music therapy, pet therapy, reminiscence sessions and walking.