Pete
- admin1356
- Oct 11, 2024
- 4 min read
Updated: Nov 26, 2024
"There’s virtually nothing for people like us—people in their 50s. You just wonder, what happens when I can’t cope anymore?"
Navigating the Unthinkable: Peter’s Story of Love, Loss, and Lewy Body Dementia
In the vibrant suburbs of New Zealand, Peter and Wendy shared a life filled with joy, hard work, and dreams of a peaceful retirement. But when Wendy was diagnosed with Lewy body dementia and Parkinson’s disease, those dreams shifted dramatically. Their story is one of enduring love, daily challenges, and a relentless search for dignity amidst the decline of a once lively, independent woman.
For Peter, watching his wife—who once filled their lives with energy—gradually freeze in place was heartbreaking. "Wendy has always been the sociable one," Peter shares, recalling how she went from being the life of their social circles to struggling with simple conversations. Parkinson’s, coupled with her dementia diagnosis, left Wendy increasingly vulnerable, yet Peter could see sparks of her old self whenever they were in familiar surroundings or when their neighbours offered a smile and a wave.
The physical challenges were only part of the story. Emotionally, Peter struggled to come to terms with their new reality. Lewy body dementia, like Parkinson's, doesn’t just rob a person of their body—it slowly takes their mind as well. Wendy began experiencing episodes where she would freeze, completely unable to move or respond. But despite these hardships, Peter stands by her side, determined to make life as full as possible.
Peter is quick to point out that Wendy’s involvement in The Restaurant That Makes Mistakes, a TV show offering work opportunities to those with dementia, has brought unexpected joy into their lives. While Peter was initially anxious about Wendy’s ability to handle the pressure of working in a bustling, upmarket kitchen, she surprised everyone. “She’s going great guns,” Peter says with pride, noting how Wendy’s confidence bloomed through the experience. It was a rare win for the couple, amidst so much loss.
However, as Wendy’s condition progressed, Peter came face to face with an often-overlooked issue: the lack of support for families dealing with younger onset dementia in New Zealand. While there are services for the elderly, Peter found that Wendy, at 55, didn’t fit into existing programmes aimed at older adults. “She’s not ready for the retirement home,” Peter says, frustration evident in his voice. "There’s virtually nothing for people like us—people in their 50s. You just wonder, what happens when I can’t cope anymore?"
Peter and Wendy's children have been a vital part of their journey, witnessing firsthand the emotional and physical challenges brought on by Wendy’s Parkinson’s and dementia. As Peter balances full-time work and caregiving, their children, especially their son Jono, have stepped up, learning new skills like cooking, and helping out around the house. Their family dynamic has shifted, with everyone working together to support Wendy’s changing needs. Yet, the absence of structured support for families like theirs only heightens the burden.
Peter’s story highlights a growing crisis in New Zealand’s health system: the urgent need for specialised care and support for those with younger onset dementia and their caregivers. Many families, like Peter and Wendy, find themselves caught between systems designed for much older patients and services that don’t meet their specific needs. The emotional toll is devastating. “You work hard all your life, and then something like this happens. And suddenly, you’re on your own.”
As Wendy’s condition worsens, Peter faces tough choices. Will he eventually have to give up his job to care for her full-time? What happens when her needs surpass what he can manage at home? The thought weighs heavily on his mind, but for now, they’re getting by with the help of friends, family, and their tight-knit community. Wendy’s mum, despite being 90 herself, steps in to assist when Peter needs to travel for work. And while their support network does what it can, Peter knows that without broader systemic change, many families will continue to suffer in silence.
For now, Peter and Wendy hold on to moments of connection, like walks in their neighbourhood where Wendy chats with familiar faces, her faithful dog Zoe by her side. But Peter knows these moments are fleeting. The road ahead is uncertain, but Peter’s love for Wendy never wavers. His hope is that by sharing their story, they can inspire greater awareness and action to support others navigating the unthinkable journey of younger onset dementia.
For families like Peter and Wendy, time is of the essence—and so is the need for better care.
YOUR DONATION will HELP US HELP OURSELVES.
Getting help needed is a living challenge for the group behind Young Onset Dementia Collective.
If we wait for Government, Ministry of Health or under-funded agencies, it will be too little too late for our people.
For many the situation is dire. Help is needed NOW so we made a collective conscious decision to do everything we can to help ourselves. Spouses, partners, carers of people living with younger onset dementia have real life reasons driving combined determination.
Help us keep minds engaged and spirits lifted for those affected. Plus support carers in their financial, mental and wellbeing journey.
