STITCH IT FOR DEMENTIA

A game of snakes and ladders, a diamond, a set of keys, a mask, climbing roses on an archway ... What do these have in common? Each image speaks to the experience of caring for a loved one with dementia. They were hand-stitched onto cloth as part of a textiles-based craftivist project that brought together carers, researchers and artists over a series of online workshops in 2021.

Craftivism links craft with activism — a ‘gentle’ form of protest, designed to change the world for the better. The term was coined by sociologist Betsy Greer in 2001 and taken up by the Craftivist Collective. As they say, “If we want our world to be more beautiful, kind and just, then our activism should be beautiful, kind and just”. That is what these dementia carer craftivists seek — a better world for all those impacted in some way by dementia.

They didn’t start off thinking of themselves as activists. Over the course of the workshops, each person expressed the difficulties they had faced, or are facing, in their experiences of dementia care, from stigma and isolation to a lack of support or insight from health professionals, the care sector, and society at large — all issues that are calling for recognition and change. Yet they also held onto joy. Their slowly evolving craft making embraced the complexity of their experience — navigating relationships and roles, trying to hold all the threads together —sometimes creatively with lots of colour, sometimes tangled, knotted, frustrating and despairing, often exhausting, always a work in progress.

Through artist Michele Elliot’s facilitation, and the support of the group, each craftivist found their own unique way to convey their relationship with dementia. Their work enables us to become witness to some of what they have learnt from and with the people they have cared for, and, of course, from other carers.

Meet Gaynor

Gaynor cared for her husband Charlie with dementia (for six years, at home) and is now a trainer and consultant supporting other carers at Dementia Reframed.

"Yes of course he was changing, Charlie was changing. That meant I had to change. And yes, I can say, we lost certain things but what does that even mean?..... I never, ever lost my husband. I didn't lose him to dementia. I didn't lose him at all. I learned to care for him and relate to him through his dementia, through the changes.

But for me the snakes and ladders are about acknowledging... the ‘exhaustion’. The complete lack of any kind of care, from the medical profession, the health profession, the aged care industry, the hypocrisy of things called carer gateways etc.”

Meet Imelda

Imelda cared for her late husband Graham, who had early-onset dementia. Graham was a member of the reserve army. On his last ANZAC Day in 2016 before he passed on, he was awarded a service medal which was presented at his local RSL.

“I'm thinking of are my daughter saying, ‘I hate you dementia’, but also saying ‘I love you Dad’, and my husband saying, ‘I'm still here, but why can't find you’… And my stitching, I don't want my stitching to be nice and neat and tidy because its fraught with anxiety and it's messy. That's the way my dementia life is.

I can't describe how privileged and gifted I feel that I was allowed to walk that journey and to accompany him on that journey. He gave me a gift… what he gifted me was this life that I've got now. I get to advocate for people. It’s an extraordinary life…. When you care for someone with dementia, you're actually in a world on your own. It's such a unique growing, emotional, tiring, exhausting, worrying and frightening journey that nobody else can understand.”

Meet Lynne

Lynne cares for her husband with Primary Progressive Aphasia, a rare neurological syndrome that affects one’s control of their speech and language. Lynne joined our first workshop late because she had spent the morning searching for his hat, which he lost. She eventually found it in an aisle in an Aldi store.

“My relationship is only one part of it. There’s the managing of self, the anguish, the loss of self… But I guess I’m more focused now on how I should hold all the threads together….. It’s not all about me, but it’s me as the thread holder.”

Meet Manuel

After over 30 years of living in separate homes, Manuel had been caring for his mother with dementia full time. In one of our workshops, Manuel described his experience of coming back to her after all these years.

“I think as carers we've all felt unheard and unseen, and as human beings, it's all we want really, don’t we? Is to be seen, to be heard…. And in a way that being heard and being unseen ties in with the mask, which I want to be faceless, although it’s definitely got a voice.

But this is where it starts. Where the voice of carers who do not have a stage yet comes through. And maybe part of the endgame is to get a stage, set up a stage... This is how maybe other carers will be able to feel supported. It starts off with just caring for carers… Until it can’t be ignored. Maybe this is a world movement waiting to be sparked!”

Meet Penny

Penny cared for her husband Fred who had Lewy Body Dementia. As Fred was always obsessed with keys, she decided to make this a central theme of her work. Each of the keys represent the values of patience, tolerance, love, care and hope. The arc across the top, ‘A Gift of Grace’ is the title of a memoir Penny is writing about her experience.

“We constantly hear about the negatives. And we know it’s bloody hard, but I wanted to focus on some of the positive aspects of dementia and present that message…so each of the keys represents a positive point.”

Meet Sarah

“Please don’t leave me all alone

I couldn’t manage on my own

I’m okay at times but don’t know when

My thinking will get crossed again

….

Dear husband, trust me to do my best

To get you through this dreaded mess

Our lives can never be the same

With Lewy Bodies in your brain…”

Meet Najla

Najla cares for her husband with dementia at home. She has become an advocate for carers with loved ones of dementia, and has been asked to speak on her experience at various forums.

"I attribute this gem, the diamond, with a conversation I had with Gaynor about my relationship [with my husband, who has dementia] - that dementia is relational. So, I'm transforming because I'm more conscious of the relationship, but it's not to say that I'm bad anyway. And that's what I've been carrying: guilt and shame and blame and I'm not good enough and I could be better, I should be better. But now I'm realizing, it's just an experience, I'm just continually evolving and then as I evolve I become polished, polished like a diamond, and I can share and attract."