What brave masks we wear

I don't like living on my own, I miss someone to talk to since my husband died. Some people like their own company but I don't. People never think of others as socially handicapped – not because of physical disability, but because of opportunity. I was left in a big house completely alone, everything echoed. I got hypothermia: not because I didn't have the heating on but because I didn't care. I was socially handicapped, really lonely.

This little moment of conversation at one of our workshops touched me very much when I heard it. The observations were made by one of the older women to Lois this week. It captures the brutal fact of loneliness very eloquently - and the craving for company, so strong that it outstrips hunger. These comments were made by a person who on the face of it is confident, out-going and very insightful. What brave masks we wear.

Because I've been keeping 'field notes' of our sessions in Oldham recently, I had the opportunity to catch these words. The participant had full knowledge; I hope that her words speak for others in this predicament and might foster some understanding.

Eating on my own is horrible, I need someone to talk to when I eat. I cook a meal, but there's no one to share it with, taste goes even when you're hungry. A Saturday drags on and on – sometimes on a Saturday I might not talk to a soul.

Anything like this helps (ie. being in a reminiscence session) just to be with people. It gives me something to talk about, to listen to apart from my own voice. You verbalise when you're on your own. Some activities are more interesting than others, but if you crave company to be honest you'll go to anything. I go to bingo here, but really we want conversation. I never played bingo before this, I had no interest. And when we do play it, you can't talk properly you're too busy.

A perfect activity is something like this: where we're doing something and discussing it and you have to think. I can think to myself I've spoken to someone, done something today. The good effect of it lasts longer.

When my husband was dying, I sat with him reading in the ward. After he died, my confidence went and I find it hard to go out on my own. When I was young I went to Paris on my own, now I find it hard to walk down the corridor. And even if I do get over my agoraphobia, what's the point? I'm over eighty years old, I've got nowhere to go to. I need to talk.

The cold and the cold

We're finishing the warm /&/ the cold our project with homeless people over the next weeks. The following interview is with J who was kind enough to describe his life very frankly. The interview took place in the summer, but I've held it back til now because J spoke so powerfully about living with the cold, surviving the time of year that's now nearly upon us.  

Sleeping in snow - cold, you know what I mean. Times you are just waiting for the sunlight, for the morning to come. Are you going to make it through the night? Get up and walk around a couple of hours, get the blood moving. The worst? Being wet and cold, that's when you get pneumonia. A lot of people die in their sleep on the street.

January time, freezing. Always try to get under cover, get a bit of cardboard. Even if you're sleeping out in spring or autumn, you'll need cardboard on a stone floor. I used to know some lads who would stack ten or twelve bits of carboard, like a mattress. Wheelie bins, I've slept in them but they're dangerous. Fall asleep and next thing you're getting minced in a bin lorry.

Fella died in Brighton last year when I was down there, bled to death through his back passage. Cancer or something. I knew him by sight, seen him drinking. I stay away from drinkers, it's easy to fall into a lot of things - heroin, drink, renting. I keep myself to myself. Have a few friends. Good to have mates, three or four blokes and you're safe. Amount of people who get kicked in... Kids battered a fella to death with a shopping trolley. Madness. Some people do it for the fun of it I think, must be drunk. I try not to sleep in the city centre. Walk a mile or so, if it's dry and warm kip in the park. If it's wet, you need to be out of the wet. Somewhere where the nutters aren't.

People on the streets, Ive met lawyers, doctors living homeless. Maybe their wife died, or a kid and they've run away from it all. The trouble with the street is it's addictive. There's always something happening. No one to tell you what to do. No person you are responsible for except yourself, or your dog. Things change every minute.

Dogs are good company. I'm thinking of getting a dog. You look after them and they look after you. A dog's got a woolly coat and they're warm to cuddle. And they keep strangers at bay. The dog, he'd eat before me. If people see the dog looking nice, they're kind to you. If they see a dog looking emaciated...

One of the worst things is finding your friends are dead. I know it always comes as a surprise, but on the street it happens a lot. It can be such a lot of times. Three or four in a month. The average life expectancy is 44. If you've been on the streets since you were 16 you haven't seen doctors regularly. Lads on the street if they're poorly won't go and see a doctor. You need money first. Do you chase money or go see a doctor? You need dinner down your stomach before you need meds.

You can have some good laughs though. I remember being on top of a mountain in the Black Hills, on a sofa, taken four Es...

A lot of people take too many drugs, that's the problem. Self-harm, suicide. One lad I knew used to cut his face. I said if you've gotta do it, cut your arms. Springtime that's the last time I saw someone self-harm. This girl - I saw her arms...

I dunno, people feel sad of themselves. All running from something. Not crime, things you done to your family. Say you've got a visit with your kids and you can't see them cos you've got no money and they're crying... One bloke, my daughter's godfather, died sleeping out. He wasn't a drug addict, just a drinker.

But everyone dies, if they've got a house or not.

Eveybody is a memory

This is an account of a reminiscence session with people who have a dementia diagnosis, using 'memory boxes' as a spark for remembering. The boxes are filled with memorabilia, each box themed around a particular aspect of life – school, holidays, royalty, etc. We've been commissioned by the Barings Foundation to work alongside Gallery Oldham on development of the use of such memory boxes.


The following is based on Philip's field notes, written as the session was actually taking place. We're learning from the approaches taken by Gallery Oldham, observing and trying to see possibilities for areas of development.  We've noticed the power of objects to ground people who struggle with the process of remembering. In this session that shock of remembering was palpable – people actually jerked reflexively when they saw some objects. This session was led by Glenys from Gallery Oldham, at High Barn day centre.

Philip's notes, taken October 2013

Glenys starts by holding up the first object, a rectangle of stone the size of a bar of soap: 'D'you remember the donkey stone?'

(Donkey stones were used for cleaning and smoothing the front doorstep and some of the front stonework of a house, like a stone brillo pad.)

'Oh yes and you smoothed it over...' says one participant.

People are jolted by the object, its charisma. But they struggle to follow the associated conversation and questions, which the previous group had enjoyed. This particular client group evidently need time to absorb and respond. Pauses are vital, to allow depth of response from participants.

Conversely, if people from the group also interrupt the flow, this also means participants don't trust the safety of the direction; there's confusion rather than a theme to hang onto. With the clash of the effect of various dementias in one space there is a great deal of distraction and interruption. Some authority is necessary, but how overt?

More objects are passed around the room. The sense of touch speaks loud. Powerful effect that the objects have on the participants – cutting through dementia haze. The presence of these talismans of the past is almost magical. They are far stronger than photos or even conversational clues. Could this be further reinforced by using smell and sound? Noticeable how this group are unable to engage with one another fully in this particular situation. The conversation is directed towards the objects rather than one another. People speak to the thing itself, as if it's their own raw past.

'I feel 99 now' – a wry observation.

'Going back some years now.'

Rich memories here in this group of battered minds and yet untapped. How to reach through? Most people here are in their 70s and 80s – what a vast swathe of history they've lived between them; and how fascinating it would be to know how it is to be the custodian of all this memory and yet to have it shorn away by amnesia: one woman says, 'I think I should know, but I can't describe it.'

'Everybody is a memory.' Another participant makes this very beautiful remark, but is lost in the flurry of individual conversations and the objects. Key observations like this could be noted perhaps and fed back to the group...

'We have learned something here today haven't we?' says W, without any confidence, as if she's been attending a lesson part-understood. Lois and I talk about us learning from her, rather than her from us. W then tries to pass on one of her memories, struggling hard to recollect. She is full of the need to share this information – it's clearly compelling her, the force of the need to tell. It occurs to me that this is perhaps one of the most fundamental human characteristics, to remember and to pass on memory – this is how we make ourselves and by making our history pass on the essence of our understanding. But the words fail. She's cheery, despite this set back: 'We can laugh at it all,' she says.


KEY OBSERVATIONS

- Power of objects to reach people with a dementia diagnosis

- these people need time to reflect on the objects and respond

- poignancy of age and memory loss can hit people heavily (eg. 'I feel 99.')

- deep-seated need for people to have a chance to articulate their memory experiences

Life lessons

I have had a difficult lesson of late: 'Lifestory work is just not for everyone' however much I wish it was.

I find myself getting tied up in knots at times, trying to give everyone opportunities to have this kind of experience - we see the great results that can be achieved for the participants, their carers, families and friends and want that for others. But giving real choice means enabling people to come and go in sessions as they choose and listening to people who say they just aren't interested.

I spoke to Linda from Oldham Life Story Network about our projects,  She was helpful in her straightforwardness. She said 'Lifestory work is not for everyone, it's to support the person, and to put out what they want to share.' In other words, it's centred around personal choice.
We've had people drop out of session before, when the act of remembering has just been too painful for them - due to the content of the memory, or the frustrations of the fight for that memory (due to dementia, or other health conditions) or other barriers. But what if someone is unsure, or their capacity for decision-making is shaky? 

There are tricky judgements to be made sometimes, and none of us are infallible. In a recent session, a member of staff encouraged a participant in our group to stay, even when she was clearly agitated and wanted to leave. Often in these situations, we'll step in and suggest that the person leave. However, we also have to respect the insight and judgement of staff too. It's a balancing act, the staff usually know the participant much better than we do, and therefore should know how far to push - but such moments leave me feeling uncomfortable. We also have to look at the happiness of the whole group, when one person feels agitated, it can easily spread to others. 

We have worked with people with difficult histories before - reminiscing with holocaust survivors and former refugees was challenging at the time. Recently we have been working with a women, who over the course of our encounters, revealed a very disturbing past, with memories of beatings for her and her mother from her father, and hints at abuse from her husband and former boss. She seemed to find it cathartic to talk about these issues in the group - an unburdening - but she couldn't stop herself coming back to the subject, whatever else we were talking about. This impacted on the whole group. I believe that the issues raised for her personally were so serious that they needed individual attention. We have discussed this with the staff, and don't feel it appropriate to work further with her - and will be referring her for receive professional support. 

Life story work, is fundamentally there to support the person, and to put out what they want to share. Every project and everyone we work with, we learn more. They're not all easy lessons.

Lois 

a homemade bogey

On Wednesday morning, Phil, Glenys (from Gallery Oldham) and I were at The Grange, in Oldham as part of the 'Making Memories' project.

Gleny's brought with her a collection of objects from the Gallery Oldham, themed around the Victorian Kitchen.  One participant commented when she heard we would be looking at the Victorian Kitchen 'I know I'm ancient but I'm not that ancient.' But as the morning went on, it became clear that the objects brought in where all still in use when they were younger. Participants reminisced about these 'antique' items, then followed by creating some beautiful prints which I share here.

'We used to race on bikes, and bogies made from pinched wheels, the Industrial North, the wealth of the country, the heart of the country.'

Used to donkey stone the Jambs as well as the steps, the stone strip used to come up lovely. That stuff would be difficult to get of your clothes. I didn't help, it was my job!

"Donkey stones, oh yes, give rags to the rag and bone man. Down South we were posh, put Red Cardinal on or scouring powder. Lovely pavements, all cleaner than now." 

How do you tell a life?

Pinfold Centre, Bury 28 September 2012


The idea behind our project Spaghetti Maze is to provide memory props for people with dementia, to help them recall their lives. There are many such projects and 'life story work' is becoming a common phrase in care of older people – but we're adding some new elements.

We've built these life stories around favourite, or recurring, memories reflected in art and poems made by participants. Many of the artworks have key phrases from these memories written into the image, so that words and pictures entwine (as they often do in our projects). Our theme is the family tree and trees generally, spinning off into material about childhood and fairytales.

The artworks are made by participants and phrases from their poetry are handwritten by them into the visual pieces. The hope is that these visual/poems will be powerful memory-aids because the makers are connected to these pieces of paper by their own sense of touch.

Family Tree, Kathleen Simon, Sept 2012

Poems and artworks and extracts of conversations are all included in the package of material we're putting together for each person. We hope that they'll be useful for carers looking after participants as they go further down the 'dementia pathway' as it's known. Our hope is that, using a book of this material, someone can sit down with a participant and engage them in conversation about their past life in a way that is  meaningful and multi-layered.

Margaret

But how do you tell a life? It's a question that has vexed the great artists and writers. Variously and in random order Proust, Lyn Hejinian, Adolf Wolfli, Susan Hiller, James Joyce have played chase with the essence of being alive. All attempts must fail of course, but as Beckett said, the trick is to 'Fail better.'

The life story books we've seen in care settings usually contain the basic facts of someone's passage through society: details of marriage, children, place of birth, occupation, together with hobbies, dis/likes regarding TV and music and puddings and similar. But isn't there more to tell? Or are bald facts actually the best memory triggers for people with dementia? These things certainly aren't the common topics of conversation among the people we've met. We've kept returning in our chats to the touchstones of memory, usually set down in childhood, or moments of great change.

Putting together a great swathe of Proustian complexity is not the answer here. These little life stories are functional things, to be used by carers who might not have much time and need to access information quickly. Also, the participants need stimulus that is powerfully relevant to them, rather than arty and diffuse.

'Charles chasing Katy' Kathleen 2012

Our guess is that providing the material that someone talks about passionately (say a childhod obsession with football) is going to be more useful in such situations than lists of marriages, births and deaths that mean little to a gradually self-alienating consciousness.

The time commitment necessary to make these life stories work has been large. The raw material of anyone's long life is going to be huge; this is further compounded by the difficulty that participants have in grappling with the task of remembering, understanding, documenting. For some people with dementia, the act of writing is a vertigo experience, sickening and fearful. This afternoon, I've spelt out a participant's words to them letter by letter; this morning, even making the letters was a giant stretch for one person. We have to be very careful that the individual involved is willing to undertake this challenge and doesn't feel overwhelmed, or underwhelmed, or humiliated. Discussions of this sort are not always clear-cut – there's a balance to be struck between empowering the individual and protecting their confidence which is easy to shatter.

Football, Gordon, Sept 2012

But there has been much pleasure on the way, as well as confusion and anxiety. We hope it's been worthwhile for the participants' sake, but it can't be judged yet, the patterns we've made aren't clear. And first we must trek through the dark wood of memory and dementia, searching for the path, trying to see those precious breadcrumb trails.

For more artwork and poems please visit http://spaghettimaze.wordpress.com/

sheep shearing

(Lois writes) Last week I spent a day with the Bakewell Age UK day centre, reminiscing and creating artwork with a group of men. It's a group formed by chance, by illhealth. They mix economic and social backgrounds; people born and breed in Bakewell with newcomers to the region from all over the country. They have retired from a range of jobs from an International Banker, to a maggot farmer, to a engineer for Rolls Royce.

Some are hard of hearing, many have dementia- but it all seems to work, the staff and volunteers have created such a warm and friendly atmosphere, that the older people using their services feel safe to chat, listen and join in with my reminiscence and creative activities. This was the first week with this particular group of men, so we chatted in general about their working lives. With two farmers at the table, much was talked about that part of rural life.

Sheep Shears, monoprint © Lois Blackburn 2012

'Got a job as soon as you could walk, all had to drive the tractors, girls and boys. The farm was at Wardlow, you didn’t get a lot of choice, it was decided for you that you would stay on the farm.

My favourite job was shearing, done only once a year. Take them down to the river at Ashford and throw them off the bridge there. A few days later sheered them with hand sheers, it was a skill. Wrapping had to be done in one piece, fold it in, keep it clean, start at the head, when you got to the tail end, wrapped it round with string and round. It had to be a good job or they would knock your money off, any string or bits and they would throw it out.  You washed the sheep to get the debris of, sticks, mud, left it a few days to let the grease come back making it easier to handle.' Stanley