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.”
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.”
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?
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.”
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!”
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.”
“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…”
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."