Archives for category: Alzheimer’s/Dementia

 

This Spanish film is based on a graphic novel by Paco Roba, and explores issues around ageing and its indignities, care homes, and dementia.

It is a gem. Utterly believable and sad, as getting old and dependent can be, particularly when afflicted by Alzheimer’s Disease, Wrinkles is also funny, redemptive and hopeful. It restores faith in the human condition, and in humanness…

 

CQ

The fact of dementia is inescapable, as its incidence threatens to reach epidemic proportions in the not too distant future.

Thus, unsurprisingly, dementia as a theme is increasingly prevalent in the arts, including literature, theatre and the visual arts. I discussed the artist William Utermohlen in a previous post, and the impact of dementia on his life and creativity (https://sufferingandthearts.wordpress.com/2012/04/29/art-and-alzheimers/). I have also experienced wonderful theatre that has focused on the subject, such as Tamsin Oglesby’s Really Old, Like Forty Five (https://sufferingandthearts.wordpress.com/2012/04/24/dementia1/), and Melanie Wilson’s Autobiographer (https://sufferingandthearts.wordpress.com/2012/04/25/dementia-autobiographer/).

A few years ago I came across a short story by Alice Munro, The Bear Came Over the Mountain, which first appeared in The New Yorker in 1999 (http://www.newyorker.com/fiction/features/2013/10/21/131021fi_fiction_munro). The story was later adapted for the film Away from Her (2006), which was directed by Sarah Polley.

The short story concerns Grant and Fiona, who have been married for many years, and do not have any children. When Fiona was 70, Grant started to notice little yellow notes stuck all over the house. The notes were detailed and included prompts on where to locate household items as well as aids for remembering what her daily schedule should be. Fiona then started to call Grant from town when she could not remember how to get home. Fiona herself comments:

“I don’t think it’s anything to worry about,” she said. “I expect I’m just losing my mind.”

The forgetfulness and memory loss get worse. Eventually, the time arrives for Fiona to move to institutional care at Meadowlake, where she creates her own and not unhappy life, separate and detached from Grant. The story is a profoundly moving and sad portrayal of love and of loss.

Today I read a more recent short story by Munro from her collection Dear Life. In In Sight of the Lake (reminiscent of Meadowlake in the earlier story), Nancy’s story slowly unfollows as one also of dementia, or of a ‘mind problem’ as she herself sees it, although then correcting herself: “It isn’t mind. It’s just memory.”

In Sight of the Lake is a more obtuse and enigmatic piece than The Bear Came Over the Mountain, and it only really reveals itself at its denouement. Nonetheless, it is every bit as moving and as touching as its thematic predecessor, and leaves much to consider about the far-reaching and tragic impact of dementia, a condition that perhaps few of us may ultimately escape.

CQ

Thursday, May 17, 2012

I was delighted that I got to this tonight, a panel discussion on Alzheimer’s disease, set within the context of William Utermohlen’s art, both literally as we sat amongst his work, and figuratively, as issues that emanated from his diagnosis were discussed (www.gvart.co.uk). The audience was truly fortunate that the artist’s wife, Pat Utermohlen, was also there, and so generously contributed her own personal insight to the evening’s discussion.

Firstly, Sebastian Crutch, research psychologist, shared interesting, and sobering, facts and figures on Alzheimer’s disease, including the statistic that we all have a 20% chance of developing the condition in the last 5 years of our lives… The condition is common, increasingly so, and we will all be touched by it, either ourselves personally or those we care about.

He also gave us some insight into the neurological basis of the condition, for example the visual problems that define it. Thus, impairments in visual-spatial skills and difficulties seeing the whole picture that inevitably accompany Alzheimer’s disease, may potentially explain, or at least partly explain, what we see when we look at Utermohlen’s later work.

Following this, Rachael Davenhill, Director of Age Matters, focused on the depression – at least 20 -25% of sufferers – that often accompanies Alzheimer’s disease, and how the artist’s work, particularly Blue Skies and Despairing Figure, may facilitate a sharing of what Utermohlen was experiencing, an experience of suffering that seemed to be beyond words. Andrew Balfour, psychologist and psychotherapist, ended this part of the evening, sharing his clinical and research experience, particularly his work with couples affected by Alzheimer’s disease, and issues of self-awareness.

The open discussion that followed raised many questions and comments, including those on the extent to which we can interpret works of illness, particularly where we already know the background and the context, and inevitably apply that knowledge to what we see. The audience, and panel, was perhaps divided on this, but it may not matter. William Utermohlen’s work, both pre and post Alzheimer’s disease, speaks for itself, and moves us. No explanation needed.

CQ

William Utermohlen retrospective, until May 26, 2012.

GV Art

49 Chiltern Street London

http://www.gvart.co.uk/

Monday May 14, 2012

This event takes place on Thursday, May 17, at the GV Art Gallery (www.gvart.co.uk), which is currently hosting an exhibition by the artist, and latterly sufferer of Alzheimer’s disease, William Utermohlen.

The discussion, which includes the panellists Dr Marius Kwint, Senior Lecturer in Visual Culture, Professor Rossor, Director of Dementia Research, Dr Sebastian Crutch, psychologist, Andrew Balfour, psychologist and psychotherapist, and Rachael Davenhill, Director of Age Matters, will focus on dementia-related issues as exemplified by Utermohlen’s work.

It sounds fascinating.

I plan to be there!

For those of you who cannot make it, I will give my take on the event, here…

C

Tuesday, May 1, 2012

There is still time to catch this BBC programme on iPlayer, (http://www.bbc.co.uk/iplayer/episode/b01gvt26/Louis_Theroux_Louis_Theroux_Extreme_Love_Dementia/), which was originally aired last Thursday, April 26.

And I think I recommend it, with some reservations.

This is the second in a series titled ‘Extreme Love’ (the first dealt with autism). I did wonder about the title, specifically the word ‘extreme’, which implies something of the greatest and highest degree, something that exceeds what is ‘normal’, or our expectations of ‘normal’. For me, the use of this adjective alongside ‘love’, in relation to dementia, particularly for families and carers, is that something extraordinary (and often unrealistic) is often expected of them as they try to cope with an ‘extremely’ difficult and impossibly tragic situation.

Theroux is in Phoenix Arizona, the capital of ‘retirees’, and of those with dementia, and which as a result is experiencing an exponential increase in the numbers of retirement care facilities with specialist units for those with the condition.

We first visit one such unit, where residents receive impressive care, and where Theroux gains access to staff, and those afflicted by dementia, as well as their families. This raised a further issue for me, as those with advanced disease could not have consented to his, or our, presence. Theroux handles all interactions with the utmost sensitivity, but I still felt that I was intruding, even voyeuristic.

We next visit sufferers at home, a couple in their late 80s where the husband appears to cope amazingly well on his own with his wife’s progressive dementia. I am not sure I would call this ‘extreme love’ (I am not convinced love ever needs a superlative descriptor even), but a sense of caring, and fondness, and love was clearly evident in their relationship, which seemed to help them both get through the daunting challenges that define dementia.

Theroux also met a much younger woman, in her 40s, with dementia, who has a 9 year old daughter. Thinking about what the future holds for this family felt overwhelmingly sad and tragic. And yes, I did feel like a voyeur here too, as I knew what she did not/could not.

It was reassuring, for us the viewers most of all perhaps, that the sufferers did not appear unhappy. In fact, they seemed content, living in a moment.  True, the sufferers in the care facility repeatedly spoke of leaving, of going home. Yet, that moment and need passed too, and without any apparent distress. The greatest burden was borne by the families, the extent of whose suffering was impossible to fully gauge, and to truly connect with, as the very thought of what they are facing, and losing, is almost unbearable to contemplate and stay with.

Sunday, April 29, 2012

A retrospective of the artist William Utermohlen’s work is currently showing at GV Art (49 Chiltern Street, London, http://www.gvart.co.uk), until May 26.

William Utermohlen was born in Philadelphia in 1933, of German parents, and moved to London in 1965, where he lived until his death in 2007.

In 1995, he was diagnosed with Alzheimer’s disease, yet continued to paint and draw until 2000. The current exhibition includes his earlier work, as well as the later work and self-portraits that post-date his diagnosis.

Blue Skies, 1995, was painted soon after the artist realised that he had Alzheimer’s disease. In it, we see a man forlorn and hunched over in sadness, alone and sitting at a table. Above, a skylight reveals blueness and a world that seems distant and removed.

In the accompanying video to the exhibition, William Utermohlen’s wife, the art historian Patricia Utermohlen draws our attention to earlier work, Conversation Pieces (1990-1991), painted a few years before the diagnosis, where the artist includes himself in the painting, but on the periphery, as if he were already sensing that he was outside the circle, there but no longer fully present.

All through his life as an artist, Utermohlen created many self-portraits (http://www.williamutermohlen.org), beginning in 1955. Intense and complex works, there is a clear change in style following his diagnosis, as he more directly and urgently attempts to communicate something that is beyond words. In the pencil drawings we see a forlorn and resigned man, in the watercolours, the Mask series, the focus is on his head and skull, which is the target of Alzheimer’s disease. Despite the vividness of the colours, there is a palpable sense of despair and anguish.

Patricia Utermohlen also tells us that her husband shared the drawings he created following his diagnosis with his hospital team, the only way he could truly communicate his experience of living with Alzheimer’s disease.

Although Utermohlen died in 2007, his wife believes that his death in reality occurred in 2000, when he could no longer paint. Tragically, from that point he no even longer recognised his own work.

This exhibition is about more than the artist’s diagnosis of Alzheimer’s disease. It includes many wonderful earlier works, from his series based on Dante’s 33 cantos of the Inferno, to his series of lithograph illustrations for Wildred Owen’s World War 1 poetry collection. Utermohlen was an extraordinarily diverse artist, who had been painting and exhibiting for 40 years before his diagnosis. Alzheimer’s disease was a chapter, a tragic final chapter, in the life of an artist who had throughout his career shared his sense of self and identity in his portraits. In the initial stages of Alzheimer’s, he continued to do so, and they effectively and poignantly portray a man fragmented by his condition.

Thursday, April 26, 2012

Yesterday, I included a photograph I had taken, of sea and rocks, in remote southwest Ireland. It is an isolated and lonely spot, where I love to swim, heading outwards, towards a flat horizon.

In Melissa Wilson’s play on dementia, Autobiographer, the cover of the accompanying book (Melissa Wilson, Autobiographer, Oberon Modern Plays, Oberon Books, London, 2012) depicts a woman in a billowing white dress, her body below water, with just her head above the surface. Towards the end of the play, Flora, who suffers from dementia, speaks of the sea, of waves and diving under them, ‘a fun game’. Suddenly she can no longer touch the bottom. The waves feel more threatening and the shore seems far away.

In the collection Beyond Forgetting: Poetry and Prose about Alzheimer’s Disease (Holly J Hughes ed, Kent State University Press, 2009), the poet David Mason uses a metaphorical sea to share his experience of watching his father’s progressive dementia. In the poem, The Inland Sea, the patients (his father was in a home) ‘drift, fish-jawed in their medicated stupors.’…’Drowned children’….’both past and future utterly dissolved.’

The poem ends:

‘Their beauty terrifies us, so we think

it like no beauty we have ever know

and leave them for the ordinary shore.’

In an accompanying note, Mason comments that his own horror watching those with dementia disintegrate and fragment was in fact misplaced, that even in their current state they were beautiful. But we need to rethink our idea of beauty to include them, and what they have become.

Image

April 25, 2012

I saw Autobiographer, by the performer, writer and sound artist Melanie Wilson, this week at Toynbee Studios. The play is a 70 minute or so portrayal of a life unravelling through dementia.

Intense, compelling, tragic and utterly moving, the performance involves five characters, all are Flora at different stages of her life, from the age of 8 to her 70s. The setting was compellingly conducive to the staging, an intimate space where we all gathered around, occasionally interacting with the actors, all of whom could convincingly be us now, yesterday or tomorrow.

As Flora’s mind fragments and disintegrates, the actors move, switch places and space, as dementia, subtlely at first, inveigles its way in, and the space where Flora once stood becomes shaky, forcing her to move on into unknown and ultimately terrifying territory.

We are but stories, which are lost, replaced, or potentially forgotten through dementia. Our memories and stories are how we piece things together, how we make sense of stuff, and ourselves.

The play clearly reflects the research that it is built on, as slowly and steadily Flora, through all her selves, exhibits those features that characterise dementia, the repetition, the non-recognition, the desperation to make sense of the story, to hang on, as it all slips away and frustration, agitation, confusion and anger follow.

I so loved the analogy of the dress pattern, where Flora is the pattern, slowing fraying and being unpicked by her condition.

This moving performance particularly made me consider how interconnected and critical our stories are. We are born in the middle of someone else’s story, and so it continues, as we dip in and out of the story of ourselves and that of others.

The story of dementia, biographical or fiction, almost invariably focuses on family, on the acute inversion of old age into something child-like in its dependency, and the sufferer’s need for reassurance. Flora repeatedly asks about her daughter, and when she can go ‘home’.

In the end, all the Floras remain,’I am still here’, and you realise that, despite the condition, the irreparable changes that accompany dementia, Flora is indeed still here, present and real, even though her story, and ours, has changed.

April 24, 2012

The profile of dementia in the arts has been slowly increasing.

Just over two years ago I saw Tamsin Oglesby’s play Really Old, Like Forty Five at The Cottlesloe Theatre London, which addressed the need to treat those who are old, and particularly those with dementia, as human beings. A current play, at the Toynbee Studios, Autobiographer, by Melanie Wilson, brings dementia back to the stage, with Alzheimer’s as the central theme.

Dementia is becoming more than a statistic, as the incidence increases exponentially, and thereby the likelihood than we ourselves or those close to us will be affected at some point. ‘Losing one’s mind’ is something we all fear, and dementia, characterised by memory loss, and loss of self, strikes at the very core of who we are and what defines us both as collectively human and as an individual. It challenges not only the identity of the individual, but how society interacts with that individual, who has become unrecognisable, remote, as if ‘replaced’ by someone we think we should know, but struggle to deal with the visible disintegration of a self.

It is this dead-end and seemingly pointless dualism, the fragmenting of the mind while the body nonchalantly continues intact, that terrifies. In terms of experience of illness narratives, the personal story of dementia falls within Arthur Frank’s chaos story classification – truly chaotic and therefore almost beyond telling. As a result, dementia autobiographies/pathographies are rare once the condition takes hold (there have been some, for example Bryden, C. Dancing with Dementia: My Story of Living Positively with Dementia; DeBaggio, T. Losing My Mind; and of course Terry Pratchett), and more often the story becomes a third party, family/carer, biographical one, or a work of fiction.

Perhaps it does not matter whose story it is, so long as it is told. 

This week, I will muse on the current play Autobiographer, which I have just seen and loved, the upcoming Louis Theroux TV programme on dementia, and a current retrospective of William Utermohlen, who suffered from Alzheimer’s disease, at GV Art London.

It is good to see dementia/Alzheimer’s disease acknowledged and out there.