A Journey of Strength, Hope, and Resilience: Emily Ong’s Story
We’re thrilled to bring you an exclusive 6-part series featuring the inspiring journey of Emily Ong—a wife, mother, and relentless advocate redefining what it means to live with young-onset Alzheimer’s. Emily uses her firsthand experience to drive change as a Dementia Expert by Experience, passionately addressing issues like rehabilitation, disability rights, environmental influences on dementia, and the challenges faced by women and care partners.
Diagnosed in her 50s, Emily shares her raw and real experience navigating the challenges of this condition, from the emotional rollercoaster of the diagnosis to the powerful lessons in resilience, independence, and the importance of family support. Her voice resonates in conversations about employment and dignity for those navigating cognitive impairments, empowering others to embrace hope and action. Through her advocacy, Emily is turning personal challenges into a powerful force for global awareness and positive change.
In this series, Emily opens her heart to show the world what it truly means to live with Alzheimer’s at a young age, offering hope, practical advice, and a new perspective on caregiving, long-term planning, and emotional well-being.
Don’t miss out on Emily’s incredible story – stay tuned for each part of the series!
Planning for the Future
When I was first diagnosed with dementia, the future suddenly felt uncertain, and the need to plan for it became both urgent and overwhelming. But despite the challenges, I knew that planning ahead wasn’t just about securing my physical needs—it was about maintaining my dignity and independence for as long as possible. Here’s how my family and I navigated those early years, balancing practical planning with respect for my wishes and autonomy.
The Importance of Open Discussions
The idea of discussing the future right after my diagnosis was daunting. No one likes to think about their decline, but I realized early on that I had to. “It’s time for me to talk about how I want to live my life going forward,” I told my family. We sat down to talk about what would happen in the years to come—how I wanted to live, how I wanted to be cared for, and what my financial situation should look like.
We discussed financial matters, and my daughters took the lead in setting up a fund to ensure I wouldn’t have to worry about money. “This gave me the assurance that I’d be okay financially,” I said, “and allowed me to focus on living the life I wanted to live.”
Balancing Independence and Care
A big part of the conversation was about maintaining my autonomy. I knew that eventually, my care needs would grow, but I wanted to make sure that transition happened on my terms. One of the most important decisions was creating an advanced care plan that outlined my preferences for future living arrangements.
“I want to move to a long-term care facility when my dependence impacts my family’s mental and emotional health,” I explained. “But I want to do so while I still have insight and can adapt to the new environment.” This plan respected my independence while acknowledging that there would come a time when I’d need help beyond what my family could provide.
Rethinking Aging in Place
The idea of aging in place—staying in my home as long as possible—was something that many people consider ideal. But, after some reflection, I realized it wasn’t always practical. “Aging in place is beautiful in theory,” I said, “but it’s not always realistic. Dementia care requires extensive resources—community services, trained caregivers, and medical support.” Without these, I knew that both my quality of care and my family’s well-being could suffer.
The emotional and physical toll on my family was also something we had to consider. My spouse and children would have to give up a lot to provide the level of care I’d eventually need, and I couldn’t help but ask, “Who takes care of the caregiver?”
Advocating for Quality Long-Term Care
Instead of clinging to the idea of aging in place, I began to focus on how we could improve long-term care facilities. “Long-term care can offer excellent support if it has good values and a solid philosophy,” I emphasized. “It shouldn’t be seen as lesser than home care.”
We discussed how long-term care could be a viable alternative, provided there was a tiered model of care to accommodate different financial situations. “At the very least, basic needs and psychological care should be met. For those who can afford more, higher levels of self-actualization services should be available.” This would ensure that everyone—no matter their resources—could receive the care and dignity they deserve.
A Call for Better Community Support
Even though aging in place remains an option, it’s only truly viable with substantial community support. Accessible home care services, trained professionals, and financial assistance are critical, but often lacking. “Families cannot handle this alone,” I said. “Communities must step up to provide the support needed for home care, especially as dementia progresses.”
As the world’s population ages and dementia diagnoses rise, it’s clear that families can’t shoulder the burden on their own. There needs to be a broader, more supportive network in place.
Conclusion: Empowering Choices and Easing Burdens
Looking back on the planning process, I realise that it wasn’t just about logistics—it was about retaining my dignity and minimizing the burden on my loved ones. The conversations were tough, but they allowed me to make informed decisions while also respecting my family’s needs.
Ultimately, my message is simple: “Respect our wishes, plan with us, and understand that care options like long-term facilities are not a failure. They are a thoughtful choice for everyone involved.” This journey has taught me that planning for the future isn’t just about what happens to me—it’s about making sure my family can live with peace of mind, knowing that we’ve considered all our options and made the best decisions together.
Don’t miss out on Emily’s incredible story – stay tuned for each part of the series!
For more articles on Dementia, Active Ageing and Help for Caregivers, please check our articles at Hovicare.com.
