Viewpoints

Navigating the ‘new normal’ of Early Onset Alzheimer’s

Lee Ferrero, seen here in 2005, was president and CEO of the Private Industry Council of San Luis Obispo County.
Lee Ferrero, seen here in 2005, was president and CEO of the Private Industry Council of San Luis Obispo County. The Tribune

My journey into the Alzheimer’s world began more than 17 years ago, and yet it seems like yesterday.

One day, you’re working hard and planning a future with family — and the next thing you know, your entire world has changed. You keep hearing the doctor say, “Your husband has Early Onset Alzheimer’s disease. He’ll need to retire as soon as possible.”

Suddenly, you’re faced with educating yourself about a disease you’ve only read about. You don’t know where to turn or who to talk to as the world you’ve known disappears forever. All you know is that you’re the glue that must hold it all together for your husband and children.

More than 7,000 people in San Luis Obispo County are living with Alzheimer’s disease right now, and many more have the disease but haven’t yet been diagnosed. Thousands of families — your coworkers, friends and neighbors — have seen their lives turned upside down, like mine was.

This month marks two years since my husband, Lee, died after living with Alzheimer’s for more than 15 years.

This disease took a lot from us, but it didn’t take away our love, our compassion, or our commitment to do whatever we can to help other people.

Not long after Lee was diagnosed, we reached out to the Central Coast Chapter of the Alzheimer’s Association, and we both started to participate in support groups for people with early-stage Alzheimer’s and their caregivers.

I had been working full-time while picking up all of the everyday responsibilities as Lee’s disease progressed. One of the hardest things I learned as a caregiver was to take care of myself first. Just like an airplane oxygen mask being placed on a child first, caregivers must take care of themselves first, or they won’t be able to care for their loved ones. Many times, caregivers pass away before the person they’re caring for because of the stress. Finding support is critical.

Once we got the resources we needed to deal with our “new normal,” we started educating others about Alzheimer’s disease — so that other families could get the support we did, and so that research into new treatments and a cure would be a priority.

Before long, the National Alzheimer’s Association selected Lee to serve on a small group of people with Early Onset Alzheimer’s disease. It was quite an honor and education. We traveled around the country and spoke to groups of people about Alzheimer’s and our personal experience. Never having done this before, I found it both terrifying and exhilarating.

Whether we were talking to a class at Cal Poly here in San Luis Obispo, to a corporate conference in Indiana, or to policymakers in Washington, D.C., Lee shared what it was like to live with Alzheimer’s and I shared my experience as a caregiver, a role that I had taken on almost as soon as Lee was diagnosed.

Our message is that Alzheimer’s is a bigger problem than people realize — and it must be addressed. Every 66 seconds, someone in this country is diagnosed with Alzheimer’s, and it is the sixth most deadly disease. It is the only one without a cause, treatment, a cure or survivors. More people die from Alzheimer’s than breast cancer and prostate cancer combined, yet it receives the least amount of research funding.

Everyone can do something to help. If someone you know might have Alzheimer’s, don’t avoid them. Talk to them, even if you aren’t sure what to say. Ask them what their experience is like. If you know someone who is a caregiver, offer to spend time with their loved one or take them a meal, so that they can have a break.

Most importantly, if someone you love has Alzheimer’s, reach out for help. The Central Coast Chapter of the Alzheimer’s Association has support groups and classes on an ongoing basis for people with Alzheimer’s, dementia, and caregivers. You can learn more at their website, www.alz.org. Or you can give them a call at (805) 547-3830.

Over the last two years, I’ve continued the work that Lee and I started. I still speak at the Cal Poly classes he and I used to speak at together, and I’ve traveled to Washington, D.C., to advocate for more resources and support. I’ve formed a team in the San Luis Obispo Alzheimer’s Walk every October, called “Gray Matters,” and I started “Quilted Memories,” a memorial quilt project that also raises awareness and funds for local education and support.

I also co-facilitate a support group for people who have an early diagnosis of Alzheimer’s disease and their caregivers — the same kind of group that helped Lee and I so much when we were beginning this journey. I work with people who are afraid and uncertain as I was. I make sure they know they aren’t alone, and that help is available to them right here in our community.

Val Ferrero has lived in Los Osos more than 30 years. She is retired from working as a senior admissions adviser at Cal Poly. She may be reached at valferreroslo@gmail.com.

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