I was about 14 when my dad was diagnosed with young-onset Alzheimer’s at age 54. 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 on in 2014.
When dad was diagnosed in 2004, we had little to no understanding of what his condition truly was. 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 dad when he is right in front of us – it was a lot to handle.
Losing my dad has made me think of the many other young caregivers who are caring for a parent or grandparent with Alzheimer’s Disease or a related form of dementia, who may not know what to do; or feel helpless and hopeless in the long months and years of caring for someone who is slowly slipping away.
Young caregivers often feel isolated because their peers do not understand what they are going through and they carry the guilt when they have to choose between growing up and find their ‘self’ vs. having to shoulder the responsibilities of caring for their loved one. Many young caregivers are just starting their own lives, juggling work, school and social lives, when they are faced with the task of having to take care of a loved one with dementia.
As dementia can impact families with children and young people, it is important that we as a community understand the experience of these young people.
I wanted to draw on my experience to do something for him to live on in his memory. Project We Forgot is a digital community of support for young caregivers to persons with dementia. The platform connects individuals and situations through personal stories, the real human aspects of the illness, the emotional roller coaster, the humor involved and all the other facets that make up the journey as a caregiver.
My dad’s journey with dementia has been a source of great inspiration and one that I often revisit as I build this community of support. He has helped bring out the best of me and I hope other caregivers allow their experiences to bring out the best of who they are too. To use their journey to inspire others.