Life Changes Trust Gathering

Thank you to Life Changes Trust for another fantastic gathering in Perth. Kate joined us and said ‘I learned so much about the project by coming here, it’s fantastic!’

It’s true – the gatherings are always so inspirational and it’s wonderful to catch up with everyone. 

Just heading to Glasgow Uni now, for the Sally Magnusson Playlist for Life lecture this evening. 

Roses

I’ve worked in Care Management for some years, in various teams and with various client groups and this project is very similar in supporting people through their personal journey with dementia. I ¬†was making some biscuits this week and in recognition of a very strong theme from this work, I iced them as roses.


This strong theme emerged from women contemplating leaving their homes for sheltered or care settings. ‘What about my rose garden?’ I heard several times.

At first, I silently wondered ‘What about it? Surely it’s more important that you can get to the bathroom?’ but very quickly, I started to understand.

In my lifetime, I’ve been fortunate (and loved) enough to be gifted bush roses when leaving much loved teams for a new job, for birthdays, anniversaries and the names of them are often chosen with care (birthday girl, fragrant dreamer). And I’ve rooted some from gifted cut flowers.

It’s easy to imagine a woman collecting roses in all similar circumstances, her life milestones, the birth of her children, her wedding bouquet, from her garden in her childhood home, from her Mother’s and Grandmother’s ¬†gardens… the buttonhole from her son’s wedding, perhaps? A single rose from a boyfriend, a bouquet from Valentine’s Day.

My Grandmother used to take cuttings from everywhere she went! She’d always have a snippet of rare plant in her pocket.

Some people diarise with words, some with photographs and film, even some through Facebook but some people have diarised their lives with roses and this is something to be appreciated and valued, like the entire life stories left behind in rose gardens.

If you are fortunate enough to move into a home blessed with a rose garden, please love them for the secrets and memories they hold. And if you know anybody leaving behind such treasures, why not root their favourites for pots or window boxes in their new home?

Museum Meeting

After the ward ceilidh, Kate and I went to meet Angus and Maggie at the Museum to talk about future plans for the memory boxes joint project (completed during March with a Crofting Box, a Sensory Box and to launch in April) and also plans for Kate to collaborate with the Museum Service in the South Isles.

 

Valentines Ward Ceilidh

The Western Isles Hospital Ward Ceilidh had a Valentines theme today.

We took along resources from Alzheimer Scotland in the shape of village magazines, roses, wedding pictures and our own chocolate cake, heart biscuits, love poetry posters from the Scottish Poetry Library and some red balloons.

Four patients came along to enjoy the session with 9 of the NHS and Arora team supporting them to enjoy the session.

Comments included:
‘it’s nice to get away from the bed for a bit and the company is very nice’
‘Oh I liked the cake’
‘How did you get the heart in the biscuits?’

and the red balloons were very popular for a game across the table at the end.

Kate MacDonald, our new Arts Practitioner from North Uist came along to see what we do and she is looking into the possibility of sharing the sessions across the South Isles.

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

Today’s ward ceilidh at Western Isles Hospital

Today’s theme was birthdays, as Heather has her birthday tomorrow.

We played with balloons and ate jelly and cake, while talking about when our birthdays are, baking triumphs and disasters and the conversation moved into our favourite ages and what we do or did for work.

One of the student nurses talked about how on the ward, her clinical role takes over and she doesn’t always remember to talk to the person, but after having this experience on the ceilidh, getting to know one lady in particular a lot better and seeing her playful side playing with the balloons, she feels she will take this knowledge and learning back to the ward.

One of the student nurses who also works at An Lanntair is going to Uist in a few weeks, so she will be able to support similar sessions further south if that is something the people want to participate in there.

The balloons seemed to create a relaxed and childlike playful atmosphere and supported people to interact across the group.

Heather supported an evaluation session afterwards as well as taking lots of pictures and details down during the session. This evaluation will be invaluable towards sharing the learning to support others in hospital further afield.

Three patients came along, supported by several senior staff, nursing staff and student nurses, along with Heather Baillie and myself, Paula Brown.

Scottish Parliament Cross Party Group for Dementia Reconvenes

Last evening, the Scottish Parliament Cross Party Group for dementia reconvened. 

The Dementia Policy Lead for the Scottish Government, David Berry, presented Scotland’s third National Dementia Strategy and then Jim Pearson, Alzheimer Scotland’s Director of Policy & Research set out Alzheimer Scotland’s vision for change.

The group discussion focussed around inequalities in provision and gaps. Also the reality of caring and the issues around that were raised. 

Human rights were raised as a reason for offering timely support appropriate to the person rather than a blanket post diagnostic offer – Anna Buchanan raised this and Agnes Houston expressed her personal experience of feeling less supported after that post diagnosis period.

Jim Pearson agreed to go and see what it is like for a day supporting carers. 

There was a strong turnout of more than 40 people from many different organisations – Government, Alzheimer Scotland, carers, people with dementia, charities, NDCAN, health, many people across disciplines joining together to commit to meeting up for the purpose of discussing and improving dementia support across Scotland.

Next meeting date tbc.