I remember the hushed whispers when my great-aunt was diagnosed with Alzheimer’s. She had left something on the stove, and the kitchen caught fire. My parents explained to me that auntie was going to need more care and would be moving into a memory care facility.
I didn’t realize then what a significant impact this disease was going to have on my family.
Next came my grandmother. I watched as the disease slowly stripped her of memory, the ability to communicate and her personality. My grandfather’s role quickly changed from husband to caregiver.
My grandfather and the staff at their assisted living facility worked hard to keep them together for as long as possible. But the disease won — forcing my grandmother to move to a memory care facility across the street. My grandfather would take a shuttle every day to visit my grandmother — even though she did not always recognize him.
Then Alzheimer’s hit again — another great-aunt and a great-uncle. And then my remaining grandmother developed vascular dementia. A total of five members of my family have been stolen by Alzheimer’s or another form of dementia — impacting not just that person, but also our entire family.
I share my family’s story because we cannot let Alzheimer’s remain in the shadows. In our community, Alzheimer’s is stigmatized. When we overcome the shame associated with Alzheimer’s and other dementias, we can support those in our community who are living with the disease.
I am lucky to be able to turn my family’s tragedy into something positive. I work at Alzheimer’s Los Angeles, a local nonprofit that serves people and their families impacted by Alzheimer’s and other dementias by providing free care counseling, caregiver education and support.
Recently we released a series of educational videos to help raise awareness by showcasing the personal stories of five Japanese and Japanese American caregivers (https://www.alzheimersla.org/the-faces-of-caregiving/).
The video series features different generations caring for loved ones — mothers, wives, grandmothers. Through their stories, we learn about the struggles that caregivers face — problems getting an accurate diagnosis, financial burdens of health-care costs and finding care that is culturally appropriate for Japanese Americans.
The videos also showcase the power of family and how caregiving is more than just a responsibility, it is an expression of love.
These videos are available to watch online, and we hosted several watch parties throughout the Los Angeles area featuring a panel of the highlighted caregivers. Our event in Gardena, Calif., included opening remarks from Assemblymember Al Muratsuchi — who spoke about the importance of Alzheimer’s awareness in the Japanese American community.
In addition to these online videos, Alzheimer’s Los Angeles has caregiver tip sheets that provide easy-to-read information, addressing common concerns and challenges. From bathing and toileting to sundowning and driving, the tip sheets provide simple and easy-to-understand tips for caregivers and are available in a variety of languages, including Japanese and Spanish.
We host several support groups in conjunction with Little Tokyo Service Center. Classes developed especially for caregivers of someone living with dementia are also available. Learn more at AlzheimersLA.org.
November is National Alzheimer’s Awareness month, so I encourage my fellow JACL’ers to do two things to raise awareness this month:
- Watch and share the Faces of Caregiving videos. Use these videos to start a conversation about maintaining your brain health.
- Become a Dementia Friend. Visit dementiafriendsusa.org and watch a few short videos to learn more about dementia, recognize the signs and simple actions you can take to help those in our community with the disease. n
Kelly Takasu is the public policy manager at Alzheimer’s Los Angeles. She is the former JACL Mike M. Masaoka Congressional fellow and is a member of the JACL Clovis chapter.