On Sitting with Not Knowing

When I was in the substance misuse field of work, I often found people struggling with needing to put dilemmas to bed with an answer. Right now. ‘Should I do this or that? There are pros and cons to each but I must figure it out, think it through, decide… or it will be a source of constant stress.’  I noticed people exhaustingly busy with thoughts and physical manifestations of this stress.

Some of my friends now, outside of substance issues, have intensely logical minds and want answers, diagnoses, solutions. They need to figure out problems and solve them.

I’m a person who finds it quite easy to say that I don’t know, that I am taking time to absorb all of the facts, that I am setting things aside to deal with when the whole picture becomes clear later on. Of course, I make decisions all of the time but I am equally at home with not deciding, taking a more reflective approach at times as well.

Is this a personality trait or a learned skill? I know that there were several tools and methods that were helpful in the substance misuse field to clarify choices. ACT therapy (Acceptance Commitment Therapy) where the person accepts that he/she only really has control of his/her own behaviour and that behaviour is a clear choice if we choose to notice it. Also motivational interviewing helped with looking at the motivation behind choices. There were many more skills that could be learned to support anxieties and behaviour patterns. I am sure that I absorbed some of these skills in the field of work.

How does all of this relate to dementia? Wel, I think it might –

One lady that I have been working with for a long time and who has been very active in this project has a similar outlook to my own. She is happy to say that she doesn’t know – happy to accept the mysteries of this advancing disease with a wave of her hand and an ‘I don’t know, darling, I have no memory’. Although she absolutely feels all of the losses and struggles in her life, the mysteries of her memory loss aren’t the biggest deal to her. A very intelligent lady, a Mother and housewife for most of her life, and a crofter, she enjoys puzzles, reading, socialising, enormously long words and maintains a full life into her nineties, there is definitely something in her approach to not knowing that supports her to manage her life and happiness. I hope that I would be able to adopt similar strategies under similar circumstances.

Another lady that I have been working with is quite opposite in her outlook. She is a very logical lady, held down a responsible job in her working life and her mind is constantly busy with figuring out reasons for everything around her. It was a stressful time moving from hospital to a care home, as she had decided that the room must be her bedroom and that the man coming to say goodbye was the Council man coming to evict her. Her first few days at the care centre were very difficult for her. I took her to a weaving workshop and although a lot of reassurance was required during the journey, the left and right, rhythmic hand movements enabled her to sit with former school friends and weave willow, gently, skilfully, socialising and this eased her busy mind and kept her in the moment.

Two women, two personalities, two completely different lives led, along with completely different skill sets.

Is their separate response to dementia, to not knowing, a personality trait or a set of learned skills? Something for future research and discussion, perhaps? This is another train of thought about which I am comfortably sitting with, without knowing, adding more evidence to the train of thought as it arises in my work.

Psychology Today article

Two more preview trips to the Museum and Lovely Myra

I met Myra Lamont today, who volunteers for Life Changes Trust and is a volunteer member of  NDCAN

She was in the area to support carers and I was lucky enough to spend some time with her today, when she came along to the Museum trip with Solas and stayed to have a lunch meeting with me at An Lanntair.

I learned so much from Myra, her information was invaluable and I’ll be working on one of her ideas in the immediate future.

Meanwhile, the group from Solas loved the Museum preview trip. There were ten people with dementia, 5 staff plus volunteers and myself plus Myra.

The next group came from Blar Buidhe care Centre (having heard about how much people enjoyed it last week, another group wanted to come). Margaret Anne took great pride in being able to read Gaelic and another lady was so high in her standard of Gaelic, that she was able to correct some Museum resources! It was a beautiful day, too.

Opera Highlights at Harris House

I’ve just returned (over the icy Clisham and through a snowstorm!) from Harris House, Tarbert, where Scottish Opera brought their Opera Highlights tour for a mini preview before the main show in the evening.

They sang four songs for our captivated audience of fifteen residents and 6 staff.
Beginning with a rousing English version of Brindisi from La Traviata, finishing with the hilarious Flanders & Swann ‘Song of the Weather’. In between, we enjoyed the Barber of Seville and the Mikado in bite-sized form.

Afterwards, the cast/singers had a chat with the residents, talking about island life as well as their own influences. Conversation flowed about memories, music, wartime, all kinds of thoughts and emotions were opened up by the music and everyone commented on the quality of the programme, the power of the voices and the entertainment value of something so different.

Thank you so much, Scottish Opera. That was an unforgettable afternoon!

 

Scottish Opera 1Scottish Opera 7Scottish Opera 2Scottish Opera 5Scottish Opera 3

 

Opera Highlights…..Highlights!

Opera Highlights from the Scottish Opera is coming to Tarbert tomorrow (20th Feb 2016). You can book your tickets on that link.

Generously, the singers and pianist have kindly agreed to offer highlights of that show to the residents of Harris House, being so close to the ferry and venue.

Naturally, we are grateful and excited to hear that the ferry is running fine and that the performers are on their way! There will be pictures tomorrow evening.

Wee Studio Podcast Recording

We had a massively industrious recording session today at Wee Studio – three podcasts in one session.
One is for the forthcoming memory box relating to moorland. It has a song about the shielings  by Maggie and the words read as a poem by Donald Saunders.
The next podcast is about the Herring Girls and Maggie explains the story of the song and then sings it (magically).
The final podcast is the second of our Gaelic Without Trying series, designed to support carers to learn Gaelic by absorption.
They will appear shortly for downloading.
Because of the detail about how songs were learned and remembered, this will be a useful resource for academics researching bilingualism and oral traditions across the islands as well.

 

Spinning session with Mary Smith

Maggie Smith and Mary Smith held spinning sessions at Blar Buidhe and Dun Eisdean Care Centres today.

Memories flowed of carding and setting up weaving machinery and how the carding process was boring but machinery was available to do it.

We spoke about natural dyes, onion skins and flowers, different uses for urine(!) and that the spinning wheel was made in the 1980s in Carloway. Each area has a particular kind of drop spindle but the ones Mary brought were mostly used for plying the wool.

It was wonderful to work with Mary Smith after hearing about her work a few times…..and Maggie brought beautiful Gaelic flavour and a traditional weaving song to the sessions….but the cat totally stole the show!

 

Stornoway Rotary Club presentation today

Many grateful thanks to Stornoway Rotarians for their warm welcome and attentive reception for our project presentation at lunchtime today.

I was immensely honoured to be invited to present the project to Stornoway Rotary Club today and to be treated to an excellent lunch at the Caladh Hotel. The project was very well received and the technical equipment worked together perfectly.

I found it quite incredible to look back at the past year in the project and how much has been achieved and commenced already. I’m also immensely humbled by the generous and warm reception that the project is receiving across the islands.

The entire team loves the work that we feel privileged to be doing and we are grateful for the tremendous support that the community has offered so generously and that was so abundantly echoed by the Rotary Club members at today’s meeting.

Isle of Harris Distillers

 

It’s not every day that someone gets to visit a distillery for work and I was thrilled to be invited to see and smell the aromatics and botanicals that are used in the Isle of Harris Distillery for their drinks in connection with reminiscence through this project.

Shona Macleod met with me and showed me around the sensory area of the building, filled with jars of incredible aromas and boxes of tactile, hand-plunging grains, peats and touchy-feely tweeds. This is an experience area as part of the Distillery Tour.

Shona explained that the Sugar Kelp is hand dived and carefully prepared and dried at Hebridean Seaweed to create an expensive but stable, dried ingredient, which will make it suitable for our project to be shared in our reminiscence boxes.

I also came away with a rose based hand cream, created from local machair-gathered wild flowers (for hand massages and aromatic effect combined) and the Harris Distillery blend tea from Hebridean Tea Store, a blend of Assam teas with smokey Lapsang Souchong, evocative of peat fires, for aromatic qualities as much as reminiscing over leaf tea and drinkability!

The shop is stocked with a beautiful display of Harris Gin bottles, twisting in spirals along the shelves as well as local apothecary blends crafted into soaps, cologne, balms and creams. There are some gorgeous leather bound notebooks, jellybeans and books adding bursts of colour.

The cafe offers tremendous attention to detail with warm scones, soft butter and recycled tables and cutlery jars.

I think that everyone receiving the trial sensory box for reminiscence will love the local focus on wild flowers and kelp, local fragrances that will hopefully evoke deep memories for people to share with their loved ones.

Barra, North & South Uist & Benbecula

There are now 15 more Dementia Friends across the South Isles! We had a very successful uptake from the drop in sessions too. Thanks everyone!

I experienced ‘drone envy’ visiting Andy Mackinnon at Taigh Chearsabhagh! What a wonderful way to film!

Spent the day on Barra today, Information session at Castlebay Hall jointly working with Alzheimer Scotland and then a session of cyanotype printing at Cobhair Bharraigh from the Eilean/Island Mhairi and Pat Law exhibition at An Lanntair last year.

Cultural Learning

I was very inspired by meeting Michelle Miller recently, who is working for the Scottish Government project Focus on Dementia. She won the Winston Churchill Memorial Trust Fellowship last year and went to Japan to look at the ways people deal with dementia. I heard some energising stories of how car dealerships and other companies listed the jobs they had available each day for volunteers and a group of younger people living with dementia went off to undertake these tasks, sharing the workload as colleagues, taking pride in doing a great job and then coming back around the table in a resource centre for tea and food, talking about what they had done during the day. I find so much community and personal value attached to this approach.

Of course, many people volunteer in the Western Isles. More so than Shetland, from what I could gather on my recent visit for Up Helly Aa. However, Shetland has some interesting supported living models and some fantastic nurse led dementia diagnosing is happening there. The two lead nurses for dementia were handing out quiche and cake and having long and meaningful conversations with people attending the fortnightly dementia cafe at a church hall alongside Alzheimer Scotland staff and volunteers, while I was there. A bus filled with people from a day centre arrived, everyone eager to catch up with each other and talk about the recent Up Helly Aa, where the Guizer Jarl and his squad of burly Vikings had taken care to visit each and every care facility during the day, which had given everyone a purpose for baking and preparing treats for them all, in advance of the evening torchlit parade and ceremonial burning of the Galley. How many other cultures take such care in sharing festivals and activities across care settings? We do at An Lanntair, through Life Changes Trust but I think we are quite innovative in that respect.

Looking at the Ceilidh culture across the Western Isles, I was excited to see something very similar on a ferry from Cape Town to Robben Island, where Nelson Mandela was famously held. Not only held, actually, but that’s another story. A group of women of all ages were sitting together in a circle and singing local songs, some prayer songs, including a rousing chorus of ‘Thank you Jesus, Amen!’ when we safely reached the shore after a wallowy crossing! They entertained the entire group on board and it was incredible to see the similarity between a ceilidh here on Lewis, a gathering….people can’t help but chat, tell stories and maybe sing a few songs. It’s part of life here. And gathering places might have been the Post Office, the Scrapyard, the most popular guy on the street’s front room – not particularly a pub or bar. Alcoholic drinks venues were illegal within living memory – a lovely gentleman at the dementia cafe was telling me a story about his time as a Police Officer on Lewis, where an illegal drinking den was trying to get a license as a hotel/bar. Thousands of beer can pulls were collected from the floor of the building, carefully laced onto a string and presented in court as ‘evidence’, which made the court room bustle with stifled laughter at the time. Because of the cultural significance and the fact that a gathering is so beneficial to people, I have commenced plans to support hospital patients to hold a weekly ceilidh. I hope this works out.

Back to Cape Town, I noticed horrifying differences between people’s status – some cruising around in stretch limos, others taking their entire families to eat out daily, some living in Hollywood Hills style mansions….and some living rough in car parks and eating out of bins. Many people try to eke a living from helping tourists with luggage and as guides, as artists or selling souvenirs (all politely and non confrontationally, I have to add)  but there is little in the way of social support. The benefit system there is based on what has been paid in to the scheme and when it runs out, it is over.

Years ago, I went to Seoul in South Korea – the city and country life was very different. In the country, women largely stayed and raised children on the funds that the men earned by working themselves incredibly hard in the city. All night, I would see people having meetings and it wasn’t uncommon to see small groups of men sharing a bowl of kimchi soup with tofu at 11pm in a small cafe bar. With obligatory Souju. Older people in the country rarely stopped farming and growing and caring for little family members unless they were very unwell. Several generations lived together, which in that culture and many others gave rise to ‘Love Hotels’ to give married couples a break and some privacy! I digress because I have seen these on hotel booking sites in Brazil too.

I’m heading to Brazil for my son’s wedding in March – I’m already wondering how people support each other in Favelas and in general. What provision is there for social security and care? What about health care for poorer people? How is dementia perceived there? What about older people – are they generally valued and respected? I’m looking forward to finding out.