Passionate about creating new and alternative solutions in problem-solving, Melissa combines her love for storytelling, digital marketing and branding to bring creative ideations and campaign experiences to life. She is the founder of Project We Forgot, a community of support for Caregivers to persons with Alzheimer’s and other forms of dementia. The initiative was founded with the vision of connecting young Caregivers, through the identification and sharing of their personal journeys.
I was about 14 when my dad was diagnosed with early onset Alzheimer’s disease. The doctors attributed it to the belated emergence of effects from an accident he had when he was younger. For the next 10 years, I lived everyday seeing my father fight the disease and the family’s struggle to redefine normalcy, until he passed away in 2014.
I have a lot of respect for my mum. Raising three kids, holding down a job and being a Caregiver was hard work. The disease really affected the entire family and it can suck you dry mentally, physically, emotionally and financially.
The illness was new to all of us and even my mum had a hard time trying to understand it, so it was difficult for her to educate us on it. As kids, 10 years ago, we had to get through understanding the illness on our own as it progressed. We weren’t taught this in school and there wasn’t anyone that came knocking on our doors to educate us. From understanding the diagnosis to coming to terms with it, learning on a daily basis what the disease does and what it robs from a person, balancing the caregiving with the urgent needs of the family, and simply experiencing the heartache of missing a person when he is right in front of you – it’s a lot to handle.
As we journeyed through my father’s battle with the disease, I could tell that my dad was struggling with a lot of confusion in the initial stages. My father used to be the navigator and driver for the family but one day he was caught in the crossroads and didn’t know which road to take, although it was a familiar route. Seeing that confusion and anger within him pained me. That was when I realized that he couldn’t do the things he could before.
When dad’s illness progressed toward the later stages, more intensive care was required. As a family, we were always on edge, worrying about mood swings or if he would wander away and get lost. Caring for him definitely took a toll and placed a strain on our relationship with him as a father.
I think it is important for Caregivers to know that it is ok to seek professional help when the time calls for it. To know that reaching out for help does not mean that you have failed in your role as a Caregiver/spouse/child. Bringing in professional help will allow you to take time off your role as a Caregiver to destress, in turn helping to alleviate the emotional burden of the journey, which reduces the chances of burnout.
Losing him has made me think about the millions of other people who are affected by Alzheimer’s, who may not know what to do with their family members who have it; or feel helpless and hopeless in the long months and years of caring for someone who is slowly slipping away.
It’s true that we can’t control this illness or fight against time, as much as we want to. But we don’t have to let it get the better of us. This is why I’ve been inspired to create Project We Forgot. A community to tackle the need for greater awareness and support – one that offers a younger and fresher take on the disease while focusing on the digital generation, to build a community of support and to let people know what Alzheimer’s truly is by humanizing the disease.
As I build this, I often picture myself as a teen and imagine how much of a difference having such a community of support would have helped me and my siblings when we were going through my dad’s illness. I hope that this space will allow Caregivers to find their place to identify and connect with other individuals who might understand what they are going through. And especially to the younger ones, for them to know that they are not alone, to know that it is ok to speak out about it, and to use their journey to inspire others.
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