Angela Haberer Nilsson tells us about the multiple generations of her family affected by Alzheimer’s and dementia during National Alzheimer’s Disease and Family Caregivers Month. Her mother Jan is a member of the 2018 Alzheimer’s Association National Early-Stage Advisory Group.
The first time I heard the word “Alzheimer’s,” I was just eight years old.
My parents sat me and my brothers down to explain why we were returning to Dallas, Texas after having relocated to Tucson, Arizona about a year earlier. My parents explained that my maternal grandmother had been diagnosed with Alzheimer’s disease and that it was important for us to be closer to her and my grandfather, who was her caregiver at the time.
We visited my grandmother often at her memory care assisted living home. With each visit, she seemed to know less and less about us. My grandfather led by example, teaching our family what it meant to take care of someone “in sickness and in health.”
Though my grandmother could no longer recognize him, he made sure to visit his bride of 63 years every single day until she passed in 2005.
Even as a child, I could sense the loneliness that my family felt while enduring this battle with Alzheimer’s disease. None of my friends had any connection to Alzheimer’s disease that I knew of at the time, and there didn’t seem to be as much information or research readily available as there is today. Our family simply didn’t know who we could reach out to for support.
We did, however, know the devastation of Alzheimer’s disease – that it has no cure and that it is a terminal illness that makes the body and brain eventually forget how to keep the body living.
Fast forward eight years to 2013.
My parents sat my brothers and me down once again, but this time it was to explain that my own mom had been diagnosed with Mild cognitive impairment (MCI). Our world turned upside down with this diagnosis, knowing that it meant an increased risk of Alzheimer’s disease. Soon after my mom’s diagnosis, she and my dad retired earlier than planned and began navigating life with MCI.
One topic my parents always bring up when talking to others about MCI or Alzheimer’s disease is the importance of early detection. Soon after my mom began noticing changes in her usual job performance at work, my parents decided to seek out professional help to try and figure out what was causing these changes. Whatever the future holds, I know my parents took the steps they needed to.
Being 26 years old, I don’t exactly worry about early detection for myself yet. What I do find important, however, is creating a healthy lifestyle.
Through my mom’s many doctor appointments, clinical trials and research we’ve read, we have learned how vital it is to maintain an active routine where both the brain and body are exercised often. With my grandmother’s battle with Alzheimer’s and now my mom’s diagnosis of MCI , I know I am at a greater risk for being diagnosed with a dementia-related disease in the future. This knowledge pushes me to maintain my health in any way I can.
Staying healthy isn’t just an important topic for those diagnosed with a dementia. It is also a crucial aspect of being a caregiver for someone with a dementia.
Over the years, I have watched family members and friends take care of loved ones, and now I play a part in making sure my mom is well taken care of. I have seen caregiving mistaken for sacrificing one’s own well-being for the sake of the person being cared for. When this happens, we actually do less for our loved ones. We must practice self-care in order to provide the best care for those we love.
Since the year 1999 when my grandmother was diagnosed with Alzheimer’s, even more people in the world are affected by Alzheimer’s disease, but people are also taking important action.
Research and awareness of Alzheimer’s are growing; support groups are forming for families to connect with others going through the same struggles; and many of us have hope for finding a cure in the near future.
During this National Alzheimer’s Disease Awareness and Family Caregivers Month, I encourage everyone – especially the millennials of my generation – to maintain a healthy lifestyle, donate time or funds toward research, and become educated on what you can do in your community to fight Alzheimer’s disease.