Marin Voice: Alzheimer’s caregivers deserve continued support from Congress

The death my mother endured at the hands of Alzheimer’s disease was a slow excruciating baptism of fire. It left me no time to process and only anguish as I attempted to keep up.

Now, I am experiencing the same process of slow change in my father, my mother’s other half.

I feel angry all over again. Initially, he was reclusive, trying to hide forgetfulness and trying to make up excuses for mishaps. Once again, I got panicked phone calls from family members and friends. I recognized the calls all too well.

Many are quick to comment that I “know what to do.” Some give unsolicited advice. Once again, I found myself taking time off from my career, my goals and my dreams. I slowed down.

Now, I am what is called a “sandwich generation.” I am a mother, wife, daughter and hopeful career woman. My husband and I both work in health care. He works for Kaiser Permanente as a hospitalist. I work as a home care occupational therapist. Our 4-year-old son attends preschool.

We do not have family in the area and, therefore, it takes a logistical “act of congress” to plan our daily and monthly schedules.

My father continues to live by himself. I have mastered camera placements, daily visits and repetitive phone calls. To what end? I ensure he has taken his medicine and his insulin appropriately, but it is an exhausting performance. We have tried caregiver assistance, but my father absolutely declines their existence. This destroys me as it gives me no balance.

According to a study by Yulya Truskinovsky, male caregivers have started to reduce their workloads when confronted with such an obstacle in their family. In contrast, women caregivers leave the workforce abruptly, ending their ambition to tend to their families’ needs. I am the latter – I am now a caregiver, just a shadow of the female professional I used to be.

Statistics are simply not enough to challenge the preconceptions of this disease. I do not know what I would have done without seeking guidance and support from the Alzheimer’s Association.

It took 13 years for my mother to get a proper diagnosis for Alzheimer’s disease due to cultural and language barriers. No one likes to feel like they are in this all alone, but that is how we feel when we keep everything to ourselves. We disconnect from our partners and friends. We build walls around us instead of bridges.

I have been volunteering for the Alzheimer’s Association since 2014. I advocate and volunteer my time to advance research and in hopes that my voice will be heard in the public sphere attracting attention from politicians, the media and high-profile individuals. Without advocacy, many voices would be silenced.

Prior to the introduction of the National Alzheimer’s Project Act (NAPA) in 2011 and the Alzheimer’s Accountability Act (AAA) in 2015, there was literally no plan at the federal level to address this public health crisis.

Since then, much has been accomplished, including a seven-fold increase in Alzheimer’s and dementia research funding, which stands at $3.5 billion for 2022. Both NAPA and AAA are set to expire in 2025, a disastrous development that could unwind years of progress toward a world without Alzheimer’s disease.

The Alzheimer’s Association is calling on Congress to build upon the past decade of progress by reauthorizing NAPA and AAA. Please join me in calling on Rep. Jared Huffman to cosponsor the NAPA Reauthorization Act and the Alzheimers’s Accountability and Investment Act.

Both bills have bipartisan support and have already been cosponsored by Bay Area representatives including John Garamendi, Mark DeSaulnier, Zoe Lofgren, Ro Khanna, Eric Swalwell and Jackie Speier.

Join me and others on Oct 8 at the Sonoma-Marin Walk to End Alzheimer’s on the Sonoma State University campus to take action and raise funds and awareness for a breakthrough in the fight against Alzheimer’s and all other dementia.

For more info, go to act.alz.org/Sonoma-Marin or call the Alzheimer’s Association 24/7 Helpline at 800-272-3900.

Maria Martinez Sil lives in Mill Valley, is an occupational therapist for Sutter Care at Home Marin.