Op-Ed: Family Story of Dementia and the Help From the Alzheimer’s Association

By Robin Fong

Francis Fong, born in 1928,  grew up in the heart of Chinatown in a ragtag group of friends fooling around and bringing havoc wherever he went. A San Francisco native and grandson to Chinese immigrants, Francis received his high school diploma from Galileo High School and then joined the military.

After his military service, he attended San Francisco State University under the GI Bill while working part-time sorting mail for the post office. In his mid-twenties, Francis got married and started his venture into fatherhood. He supported his two sons as a parole officer for 30 plus years and eventually settled in the Richmond District. He spent much of his retirement traveling and taking in the cultures of Australia, Japan, Italy, Spain, and more.

His later life was spent hosting grand mah-jong games, cracking jokes with long-time friends over a glass of wine, and doting over his grandchildren, one of whom is me. For as long as I’ve known him, my yéye (paternal grandfather in Mandarin) has been a wisecracker with quick-witted responses, the life of any party or social gathering, and a loving and generous friend and family member to all around him.

Robin Fong with her grandfather, Francis Fong. Courtesy photo.

This August marks my grandfather’s 93rd birthday, and what our family believes is his ninth year living with dementia. Over the past nine years, I have watched my yéye’s dementia cast a slow, but all-consuming shadow over the other aspects of his identity. Now, unable to remember many of the details of his own life, my yéye’s memoir lives on through his family.

Dementia is the progressive deterioration of one’s cognitive function, memory, and ability to reason and solve problems. Dementia can affect each individual differently, but for my yéye, I witnessed frustration, paranoia, sadness, and an unwillingness to relinquish his independence. It has been a struggle for my entire family to learn how to best support my yéye. We are lucky that we live in the same household and are able to give him any immediate care he may need, however, this past year was my first year attending college away from home. It has been extremely difficult hearing my yéye’s various hardships and not being there. As hard as it is watching my yéye as dementia takes more and more away from him, I can see it in his brown glossy eyes with a tinge of blue, that it hurts him so much more than it hurts me when he can’t recall my name.

Dementia is an extremely taxing disease not just mentally, but emotionally for those affected and everyone around them. Admittedly, my māmā (paternal grandmother in Mandarin) has championed the role of caregiver for my yéye, and it has been the most challenging for her to cope with the changes in her partner’s memory and behavior. Thankfully, my recent discovery of the Alzheimer’s Association has provided my family and me with the help and guidance we needed to be more effective caregivers. One thing I particularly appreciate is that they offer caregiver education, training, and support groups in Mandarin, as well as Cantonese and Spanish. Had I found the Alzheimer’s Association as a resource earlier, I could’ve saved my māmā and the rest of my family much stress when adjusting to my yéye’s progressing condition.

Although my yéye’s health insurance provider is covered by his work’s retirement plan and my family has taken him to see his primary care physician multiple times, my yéye has never received a formal diagnosis for dementia. In fact, many people with Alzheimer’s or other dementia, especially BIPOC people, never get diagnosed and don’t receive the care and support they need. That’s why I was thrilled to learn that our Assemblyman, Phil Ting, helped to negotiate a state budget that includes a historic investment of $1.3 billion towards those living with Alzheimer’s and dementia, $34.5 million of which is going towards increasing public awareness, early detection, and timely diagnosis of dementia. The combined new investments also go towards caregiver support, research, geriatric workforce incentives, and the building of dementia-friendly communities — initiatives that will allow us to work towards a world where my yéye, and all older Californians, can continue to tell their own life stories with loud enthusiasm and vivid details of their own accord.

For more information  about the Alzheimer’s Association’s education and support programs for diverse communities, see https://www.alz.org/norcal/about_us/everyone-is-welcome.

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