Remembering Dad

Telling a story with photos and music. I made this short piece following my father’s death in 2015.

My mother’s garden

My mother has lived in the same terraced house in south west London for over 60 years. Now in her 90th year, she continues to potter about in her back garden every day. The garden makes her happy. These photos show the garden in July – a bit overgrown and full of variety. Every plant has a story.

Inaudible Voices

After I finished my PhD I wanted more than anything to be in nature and to read books that had nothing to do with my research. I picked up a second hand copy of The Wild Places by Robert MacFarlane and got swept up in his search of wild. There was a passage towards the end that brought me back to my research:

Wild animals, like wild places, are valuable to us precisely because they are not us. They are uncompromisingly different. The paths they follow, the impulses that guide them, are of other orders. The seal’s holding gaze, before it flukes another tunnel through the sea, the hare’s run, the hawk’s high gyres: such things are wild. Seeing them you are made briefly aware of a world at work around and beside our own, a world operating in patterns and purposes that you do not share. These are creatures, you realise, that live by voices inaudible to you.                      

I had spent eighteen months trying to grasp something of the inner life worlds of people with profound and multiple learning disabilities. Robert McFarlane’s writing reminded me of conversations I’d had with the mother and sister of one of the people I was researching alongside. Everyone in Marian’s circle reported how powerful it was to experience her direct gaze. This was how Marian’s mother described it:

It’s the same sort of thing as when you inadvertently come across a wild animal, a fox, a deer or something and it looks at you and it’s not frightened and you’re not frightened and you gaze into each others souls and then you just go on your way. And there’s nothing asked and there’s nothing taken, but there’s something given, an exchange in that way.(Marian’s mother 2015)

This deep connection seemed to happen when Marian was happy and relaxed and didn’t require anything. Whoever encountered Marian in this way saw her fully and felt fully seen by her, in spite of there being no verbal communication.  Marian’s sister compared this capacity for Marian to be herself with how the rest of us think we can disguise who we really are.

And the problem is for the rest of us we all think we can do something about it. You know we think we can get some therapy, wear the right clothes that show us off in the right way, [laughs]. We think we can put ourselves together in a way that will make the world behave differently to us. And that’s our problem. Marian doesn’t have that problem. She just keeps meeting the world as she is. The problem that she has is that the world isn’t always ready to listen to her, isn’t ready to fall in love with her and go to that place where you have faith in how you experience a person. And the problem lies with us because we meet people and we think that by asking them what they do, asking them where they grew up, that getting to know someone means being able to write their CV or something like that [laughs]. But actually, getting to know someone means what does it feel to be with them, to hear them breathing, to smell them? (Marian’s sister 2015)

Marian did make many of her preferences very clear, ‘I mean there is great mystery around who she is much of the time – but if she likes something it’s undeniable. There’s just a clarity to it’. As well as the indications that backed up interpreting Marian, her sister thought that some credence should be afforded to deeper levels of knowing that are not measurable.

It can be all those things, but I think there is a place as well, [pauses], when you know someone, when you know someone and love someone, even if they’re not giving any visual clues or vocal clues as to how they’re feeling, you kind of know. Some part of you kind of knows what’s going on for them. You might not know it intellectually, but there’s something that lets you know that they’re happy or that they’re distressed. And it’s so, it’s so on the level that isn’t – our culture pays no attention to that level of knowing. It pays no attention to that level of knowing and worse, it dismisses it and rejects it ninety per cent of the time. So it is really hard to count it and validate it in this culture, because it doesn’t produce results, you can’t document it or validate it easily, ‘Yeah I just kind of know’ [laughs]. (Marian’s sister 2015)

We went on to talk about the social and political implications of the research project, and how Marian’s family’s need to ‘evidence’ who she is can be understood at a time when people’s value is regularly measured and scrutinised.

If you think about the values and the structures of culture as being what hold the human population, the way that it works is that it’s almost snipping great holes out of the bottom of that bag and disposing of huge numbers of people who are considered as other. It’s an incredibly timely re-interrogation of how we as human beings sometimes provide ourselves with reasons why we can dismiss others. For Marian and for others like her with PMLD, they are also people who have lives exactly as ours are. It’s just that for some reason we have a human ability to paint that out and to make hoops through which they have to jump, which they are incapable of jumping through, in order to preserve our blindness to them. And once you are no longer blind it is perfectly obvious, but while you are blind there is nothing that you can be shown that will get past that block. (Marian’s mother 2015)

Reflecting on how people like Marian are rarely afforded equal value and status in our culture her mother said,

And when I interrogate myself about how I feel about Marian in our lives and in the world, I always think that she is one of those people who has come into the world to, to make sure that we have to face the absolute worst of ourselves in order to remember how hard and how important it is to build the best of us. It goes a long, long way beyond making sure her pad is changed and that she’s fed and kept healthy. It goes so far beyond that. Those things often stand in for the value of a person – the right for this, the right for that – but actually the real right is the right to be acknowledged as ‘us’. (Marian’s mother 2015)

This post includes extracts from my thesis, which can be accessed at

http://roar.uel.ac.uk/6363/

McCormack N. (2017) Making Memory Sites: Extending opportunities for people with profound and multiple learning disabilities to participate in life story work.PhD thesis. University of East London.

The Wild Places by Robert MacFarlane was published by Granta Books in 2007

Changing Care Home Culture

In April 2014 I was asked to facilitate life story work at a care home that supports people living with dementia. Previous blogs record some of the positive changes that we’ve noticed. This morning I spent a few minutes catching up the team- two young members of care staff- to explore their observations about our work.

Charlotte has noticed how knowing the residents through their stories has really helped her support them through good and bad times. ‘We can have real conversations together. If someone’s upset or agitated I can begin talking about a place we both know or a story they’ve told me. Working with one man has changed how I see him. Staff used to try and get him to take his hat off and he got upset about that. I understand why it’s important for him to wear his hat. All his life he’s worn a hat- when he was a paperboy, in the boy scouts, in the Navy and in the Glider Air Corps. Now I understand why his hat is important and I can let the other staff know.’

This particular man is very frail now and has to stay in bed in his room. Charlotte says she knows his life story is of value to him. He said to her recently, ‘That’s the book we did together’.

I asked Charlotte and Lana how they share the resident’s stories with the rest of the team. ‘When we get spare time I get the books out and say; Have a read. Quite a few are surprised, especially the new staff who see people as ‘bed-bound’, not realising they used to be active people. But now they can see people because of their stories. The other staff are really interested in taking part and want to know what we’re doing.’

I asked them if they could generalise from their experiences of getting to know people through their stories. We’ve worked with about half the 29 residents. What about those whose stories we don’t really know yet? Charlotte said, that she felt differently towards the residents even if she hadn’t done a life story project with them.

I wondered if participating in the life story work had altered the way Charlotte and Lana felt about their jobs. Both agreed they felt more ‘satisfied with their work’. I asked why that was and they said that their relationships with the residents had improved, ‘You start to feel a bond with them’.

Charlotte told me that a couple of weeks ago she had found two of the female residents sitting side by side on the bed. They were reading through one of their life-story books and said they didn’t want to go to bed they wanted to have a ‘sleepover’ so they could carry on sharing stories. She said it was ‘really lovely’.

Lana also thought that one of the benefits was in getting families involved in the projects. Coming in to work on family histories gave relatives a real purpose and was a great catalyst for conversation. ‘Building relationships with families brings us all together’.

The care home has made a significant commitment to the value of life story work and this has been recognised in their most recent CQC inspection report. Two members of staff are ‘off the floor’ every fortnight to allow for clear project time. At handover everyone is reminded to keep the quiet lounge free so that we can have a dedicated workspace. There is access to a laptop computer for writing up stories and doing searches for relevant information or pictures. I am available for advice and support as needed but also, and perhaps more importantly, modelling ethical and practical approaches to life story work as part of the team.

A few minutes chatting with Charlotte and Lana reminded me of the many values of doing this work. Not only are the residents benefiting because they are known and understood in the context of their personal histories, but also through having a motivated and committed staff team. Staff retention is acknowledged as a major challenge in residential care. If life story work can increase job satisfaction, improve staff retention and develop respectful and genuine relationships between staff, residents and their families, there is a real potential for this simple approach to play a significant role in improving the culture of care for elderly frail people with dementia.

Making life story work an every day practice.

Lessons from the experience of facilitating life story work in a residential care home for people living with dementia:

• To use whatever material already in existence as a starting point. This will include the info gathered when residents moved in and photo albums. There are some excellent guides to doing life story work with people in this client group on websites like Dementia UK. Having a guide and template for gathering experiences can be very helpful. See http://www.dementiauk.org/information-support/life-story-work/

• To build relationships with family and invite them to help out with projects in whatever way possible. This has worked well and although it’s important to keep in mind that the resident is the focus of your attention, the value for family and friends cannot be underestimated.

• For support staff to work 1:1 with a resident until their project is complete. Consistency and relationship building is key.

• For support staff to have access to computers and photocopier to copy and search for  images and type up gathered stories ( Search engines are a fantastic resource when photos aren’t available to support or trigger memories. Searching for and printing images and information, for example about a school or regiment, demonstrate interest and provide illustration to otherwise wordy pages of type).

• Support staff find it very difficult to find the time to write up & present the life story information gathered. I suggest they alternate sessions so that one is gathering info and the next presenting it. This should be done with the resident wherever possible.

• For staff to develop and share methods to redirect people away from distressing memories in to safe territory as necessary. This is especially important as a session draws to a close. Fortunately the staff working with the group continue to be around later in the day, have excellent relationships with the residents and are sensitive to their needs.

• For support staff working on the projects to find a time to share life story information with other staff in order to increase the understanding and well-being of the residents.

• ‘Having a Life Story book is great, but it’s a culture of really knowing people that matters’- A carer made this comment and is absolutely right. The Life Story Projects need to be used and referred to in order to benefit the residents. Maybe this needs to be a session where residents share their stories, part of new staffs’ induction process, or becoming ‘second nature‘ when working with someone to take the time to read through and chat about their Life Story with them?

• To have a display folder of the completed project in the resident’s room for daily reference and a copy kept safely in the office in case of loss/damage.

• To use the life story project in any way that works to improve the well-being of the resident.

• Life story books are being used in exciting and unexpected ways to restore positive states of mind. One woman who becomes distressed at dusk is, within seconds, returned to a calm place when shown her book and engaged in conversation about  her story. Another woman who has begun to sleep a lot during the day and is very difficult to rouse, is found to brighten and her posture straightens and she begins to converse when her story is read aloud to her. A man who has become very upset by his loss of memory is comforted by using his life story book as a reference for recorded memories. And there are observable differences in some of the group. One woman who was reluctant to join the group and left after a few minutes saying: ‘I’m not welcome’, was able, through skillful 1:1 support, to recount her experience of having her first child before she was married. Her family’s treatment towards her at the time had left many emotional scars. It’s not possible to put the transformation in her mood and confidence down to the life story project alone, but having the opportunity to have her story witnessed is a likely factor. On my last visit to the care home this woman walked through the lounge with a huge smile on her face, happily chatting to her carer. She looked so different I nearly didn’t recognise her!

Lastly, I heard a wonderful programme on BBC Radio 4 where Kim Normanton talked about her mother’s experience of dementia.

‘My dream scenario is to have the idea accepted that once someone is progressing along this pathway of dementia it isn’t possible for them to come in to our world- we have to step in to their world. Their world is inevitably in their past and therefore the more you know about each individual the more you can access their world and the more comfort and support you can give them. And each time you allow them to be in that world and share it with you their confidence and pleasure is enormous’

from: Living in the Memory Room BBCR4 July 2nd 2013

(For some background to the project see previous blog https://noellemccormack.wordpress.com/2013/05/26/reflections-on-doing-life-story-work-with-people-with-dementia/ )

Turning the tables

I spend a lot of my working time recording other people’s stories. They tell me that being listened to is a wonderful experience. Angela, a great friend I got to know through the ‘Inside My Dance’ oral history project, described it well. She said it was as if she had some perspective on all the stories that had been tied up inside her and she could work with them now.

I’ve just spent a few days in Paris on a digital storytelling course. It was a chance for me to tell a story- armed with just my iPhone. Part of the course was about learning how to use smart phone apps- iMovie, Camera+ and Hipstamatic -but the main reason I went on the course was to experience the process of being part of the story circle. The story I told was the dominant story in my head at the time and it wouldn’t let me get away.

The experience was very powerful. I had the tables turned on me. Rather than be the witness and listener I was being witnessed and listened to. It was much more emotional than I expected and quite liberating.

The short film I made isn’t exactly what I wanted it to be, but I enjoyed the process and I loved being in Paris and it was inspiring spending a few days with a great group of women.

 

The iPhone workshop was run by Joe Lambert of The Center for Digital Storytelling.

More info about CDS and upcoming workshops can be found on their website:    http://storycenter.org

Life Story Workshop

In the Spring I was invited to share life story work with fellow practitioners and thought it was the perfect opportunity to try out some new techniques and decided to adapt the round-table techniques I’ve been using with a group of learning disabled adults. Hilary, one of the group, agreed to support me for the day.

Hilary preparing on the train

The programme for the day incorporated all the elements of the year-long course compressed in to bite size pieces. We agreed a contract, shared photos, practiced interviewing each other, used a range of useful equipment and thought about presentation and ownership.

Following a pattern and structure that was familiar to Hilary allowed her to participate and support with confidence. She particularly enjoyed sharing her completed life story book and DVD.

Hilary showing her life story book

At the end of the workshop I asked the group to tell me how they felt life story work could contribute and inform individual budgets and activity choice. It was agreed that life story work is generally beneficial to self identity and confidence, helps define preferences, is about deep listening and noticing, supports transitions to new places and people and, perhaps most important of all, opens up channels of communication.

 

Reflections on doing life story work with people with dementia

Earlier this year I was invited develop a process to embed life story work at a care home for people living with dementia with the aim of enhancing the day to day lives of the residents.

Life story projects have the capacity to be beneficial to vulnerable people by supporting ‘self-hood’, increasing self-esteem, providing a place to express loss and to grieve, improving the continuity and quality of care and offering opportunities for reciprocal conversation.

My proposal set out a guide for implementing group work, much along the lines that I’ve done for many years with learning disabled adults, (see previous post). The methods that I’ve developed use group discussion, reminiscence and turn taking to gather stories. After the first introductory session in the care home I realised this approach wasn’t going to work, so, together with the permanent staff, I’m adapting and developing a practical and workable model.

• Group versus 1:1

Group work wasn’t the most appropriate approach for a number of reasons. The narrators all have hearing loss and are quietly spoken which makes round table discussion difficult, but more importantly, their memories are private. Although some of the group might get along quite well with each other, their relationships are made difficult by the extent of their memory loss. They seem to prefer talking to the person closest to them in a private and focussed way.

Life story work is fundamentally a 1:1 activity and with this client group it doesn’t appear either a practical or ethical course to make it otherwise. By the second session we had divided the group in to three groups of two, each with a member of staff. Rather than sitting around a large table, the small groups used different parts of the room. This created a more intimate and focussed atmosphere, but was not ideal. By the end of the third session, listening to feedback and from my own observations, we have decided to work 1:1 in either the quiet lounge or resident’s rooms. We came to this conclusion after noticing that the room was quite noisy, thus making talking & listening difficult, and also the distraction of some residents who find it difficult to concentrate ( the room is used as a thorough-fare). Also, as interviewers, we were either working with one or other of the residents in our small group. What should the other person do while it was not their turn? Dose off or feel ignored or become distressed?

• Using existing material

All the residents have some information gathered by staff from family members from the time they arrived at the care home. The extent of the detail in these accounts varies from a few paragraphs of basic life events to rich and colourful stories of lives lived. Most of the residents have photo albums. These accounts are providing a useful starting point for the resident’s life story projects and in some cases can be sufficient, with the addition of selected photos & images to create excellent projects. Some of the resident’s family members are able to join the sessions and can corroborate and elaborate on the existing information the care home has. The role of the staff member then becomes one of making  sense of gathered information and presenting the life stories in an accessible and attractive way.

There are some excellent guides to doing life story work with people in this client group on websites like Dementia UK. Having a guide and template for gathering experiences can be very helpful. See http://www.dementiauk.org/information-support/life-story-work/

Search engines are a fantastic resource when photos aren’t available to support or trigger memories. Searching for and printing images and information, for example about a school or regiment, demonstrate interest and provide illustration to otherwise wordy pages of type.

• Memory and imagination

To my horror I hear myself saying ‘Do you remember…’ during the sessions. This is distressing and unnecessary, but hard to skillfully avoid. I’ve found that it’s better to talk around a subject in an apparently casual manner and wait for the narrator to add their voice in a way that doesn’t make them uncomfortable or remind them of their memory impairment. Stating known information clearly is effective in creating a safe environment. For example, ‘You got married in November, I wonder what the weather was like?’. The narrator is then free to talk about what they wore, who and where they married, or the weather in November, without feeling they are being interrogated about something they have no recollection of. There is also a need to redirect people away from distressing memories in to safe territory as necessary. This is especially important as a session draws to a close. Fortunately the staff working with me continue to be around later in the day.

Thanks to an email exchange with Sam Robson from Groundswell Oral History for Social Change  http://www.oralhistoryforsocialchange.org  I recently found out about Anne Basting’s TimeSlips method: http://www.timeslips.org – a story telling approach that frees people with memory loss to imagine stories. Working alongside this group has made me question the emphasis we place on the real versus the imagined. From personal experience I understand that for a person with a diagnosis of dementia to function well it is necessary for them to feel at ease. Spending two hours asking them to recall their memories about various aspects of their lives, when they clearly aren’t able to, doesn’t create ease & contentment. Over the next few months I’ll continue to notice what is effective in eliciting and recording the resident’s stories and put together a practical & ethical guide for doing life story work with this client group.

How Hilary found her life story

Hilary is part of the life story project group this year. We’ve been working together since September 2012. There are six people in the group and we spent until March gathering information using a range of methods and skills.

One of the most interesting and fruitful catalysts for memories was the round table turn-taking sessions we used in the first few months. In previous years the participants had a lot of help from family members in preparation for this, but that didn’t happen with this group. They rarely had any material to bring to the sessions and a productive and fun pattern evolved as the weeks went by. Everyone turned up, sat around a large table and took turns to talk about their own experience on a given theme. Lisa, my co-worker, and I wrote down exactly what was said and we encouraged the group to ask questions of each other so that they could develop interviewing skills. In this way Hilary gradually grew a fascinating collection of tales about her family, schooling, work experience and home life. The round table method was the most effective gathering technique used.

Hilary invited her older sister, Lesley, to come to an afternoon session to fill in some gaps about her early years and to confirm dates and specific details. The previous week was spent developing a range of questions that the rest of the group came up with. These included an interesting insight in to what they were curious about, for example, ‘Did Hilary cry a lot when she was a baby? How much did she weigh? Did she ever kick the cat?’ Lesley was warm and open in her responses, (no, Hilary didn’t kick the cat, and she was a very good baby), and Hilary was delighted to have her sister there to contribute to her story.

 Hilary aged 5 years.

Hilary used photos to trigger memories and tell us about her life. She couldn’t find any of her early years, but Lesley searched in the loft and found a collection of photos that had belonged to an uncle and included some precious baby pics.

Another popular method we used to capture stories became known as the ‘life story road trip’. After getting to know the backbone of the group’s stories it was possible to identify gaps in each. Hilary wanted to visit locations where she’d lived and worked during her life time. Each trip and digital photo was a trigger for more recollection. And the trips were a lot of fun on most occasions. When more difficult issues arose, for example a member of the group wanted to visit the last place she’d lived with her mother before moving in to residential care and found it very painful, the rest of the group were amazingly supportive.

 Hilary outside St Peter’s Place, Brighton.

Through a combination of round table sharing, photos, road trips and the interview with her sister, Hilary is happy that she has researched her life story thoroughly and is now in the process of typing up. Each week she selects a page or so of story and gets set up at a computer in the staffroom and types all day- another skill that she is perfecting as part of the project.

 Typing up. May 2013.

A big THANKYOU to Hilary for giving me permission to share her story.

WAITING FOR SOMEONE TO LISTEN: mothers’ experiences raising disabled children

This project came out of a larger body of work led by Zeida-Lane Associates http://www.zeidalane.co.uk/index.php in which they worked alongside many people with learning disabilities navigating their way through making positive changes in their lives. For a number of reasons it was difficult to involve mothers & fathers in the project and I was invited to lead a short, specific piece of work in collaboration with invited parents in which they would have their stories recorded. In January 2012 I met up with five parents to introduce myself and my life history practice and I explained what the experience of being interviewed would be like and how their stories would be shared. Of the five, all but one agreed to take part and I set up interview dates with them at their homes. All four participants are women, currently living in East Sussex.

The motivation to volunteer for this project was twofold: to have their stories witnessed and recorded but also to create a valuable resource to be shared.

I prepared a selection of themes to explore the parents’ stories;

• Experience of disability prior to the birth of your child
• The pregnancy and birth of your child
• The early years
• Dealing with attitudes of those around you
• Support from family
• Other children
• Practical impact on your life
• Difficult decisions
• Experience of counseling
• Getting a diagnosis
• Religious or philosophical beliefs
• How the experience has changed you
• What keeps you going
• Advice you might offer someone in your situation

The interviews took place between February and April 2012. Following each interview I sent a CD of the recording to the interviewee so that they could review and edit their story and I wrote a detailed summary and log. When all the interviews were completed I edited together 14 tracks, linked by content, to create over 100 minutes of material. The result is a double CD of the four women speaking openly about their experiences raising a child with learning disabilities. Each of them has listened to a draft version of the CD and has given their consent to share it. The women have written a short piece about themselves and their words, along with a photo, is included in the CD insert card.

In this extract one of the mothers, Janice, talks about how she dealt with the attitudes of other people:

In December 2012 I invited the women to feedback about the experience of recording their stories.

What was the experience like?

‘It was as if I was waiting for someone to sit down and listen, as if something was in a pot and you took the lid off and let the steam out.’

‘It was a very interesting experience in many ways. Firstly, it felt a real privilege to be able to speak freely and honestly for a long time. Very few people know about me as a person. With this interview, I feel as if I have left a piece of me, my life with my son, my experiences and how I have coped with things, since he was born.’

Was there any lasting impact?

‘I like to feel I have left a legacy for my daughter.’

‘Yes, it was a big relief that I told my story. I feel that it may help someone out there and that’s a great feeling. I hope that hearing my story may encourage people to tell their stories.’

Did any of your responses surprise you?

‘To start with, yes, I can speak! And that does boost your confidence. I sat down and listened with with my husband and he said it’s beautiful, the way you’ve told your story.’

Who would you like to hear the CD?

‘Family Intensive Support Service, Norah Fry Institute, Pediatricians, anyone working in Learning Disability Services and Social Care.’

‘Teachers, doctors, GP training, GMC.’

‘Care for the Carers, Carers UK, students studying any Social Care Degree, Adult Social Care Commissioners, Learning Disability Teachers and TAs, County Cousellors, MPs, health facilitators, GPs, Learning Disability Nurses, Clinical Commissioning Groups.’

Conclusions:

The oral history project was successful in meeting it’s aims. The collaborative process made it clear that the women were perceived and valued as experts who were choosing to record their experiences. In return for their participation and valued contribution, the women were given a copy of their interview/s. From the feedback I received it appears that the experience was positive and the recordings valued. All the women agreed it was a ‘good experience’. In a wider context, the project has created –WAITING FOR SOMEONE TO LISTEN– a valuable resource for anyone who is in a personal or professional relationship with the parent of a disabled child.

If you would like a copy of WAITING FOR SOMEONE TO LISTEN or would like to know more about the project get in touch.