By Todd Larson
(Pictured above on the left)
1980 was a very memorable year for me. That year, I finally mustered the courage to ask out a work friend who would become my future wife, Sandy. I asked Sandy out in a way that she would talk about for years to come. It was just after my birthday. When Sandy asked me about my birthday, I seized the opportunity to ask her if she would like to help me use one of my gifts. She replied, “Sure, what is it?” My response was “waterbed sheets!” After her face turned the most glorious shade of red, I let her know that it was actually tickets to see the Sonics at the Kingdome. So, on Feb. 27, 1980 we went on our first date. It led to a wonderful five-year courtship, and we were married on May 11, 1985.
Many Washingtonians remember 1980 as the year that Mt. St. Helens erupted. I remember that sunny May day when it finally blew, after weeks of warning signs. Later that summer, as the mountain continued to be active with “dome building” eruptions, Sandy and I drove south to get a better vantage of the mountain. After we spent some time in awe over the ash and stone being hurled into the air, I was putting away the binoculars and noticed a tear on her cheek. I asked Sandy what was wrong and she replied, “My dad would’ve really enjoyed this.” She was digging into her purse for what I assumed was a Kleenex. Instead, she pulled out a small polished rock.
“This is the only thing I have to remember him by,” she said. I knew her dad had passed away, but this confused me so I asked, “What does that mean?” I listened as she told me more about her father, specifically how much he loved geology, and how he had given her this particular rock. I was still confused and almost too afraid to ask what happened – I didn’t want to upset her more – and that’s when she first told me.
Her dad died of early-onset Alzheimer’s disease. He was only 42. Sandy was only 9 years old.
She told me that her father was sick her entire life, and the only memories she had of him were that he wore pajamas all day and put their garbage cans in the middle of the street. He had seizures and outbursts, and he spent the last three years of his life in a nursing home. As tears ran down Sandy’s face, she said the last time her father spoke to her and her sister he was holding a picture of them saying, “Look at my beautiful daughters,” but he couldn’t understand that they were standing there in front of him. I couldn’t comprehend or imagine what this was like for her, and I was shocked and completely speechless. I did manage to say “I’m so sorry.”
She continued on and stated, very matter-of-fact, that she knew she would die from this disease. “I’m not going to make it past 50.” We were still so young the two of us, our whole lives ahead of us, new love in front of us, but here she was telling me we wouldn’t grow old together. Impossible. It wouldn’t happen. Not to her. Not to us. No way! That was the beginning of 29+ years of denial on my part.
The one thing most people don’t know is that Sandy was mildly psychic. She couldn’t predict the winning lottery numbers, but she spoke and wrote about things that ended up happening. She wrote about our first born and his sister before they were even conceived – in a way that, even years later when they were fully grown, described them perfectly, both personality and appearance. When we were building a family, I wanted to have four kids, but she was firm about only having three pregnancies. Lo and behold, our third pregnancy: twins!
Sadly, Sandy’s teenage prediction of getting Alzheimer’s was also eerily prophetic. Sandy passed away in the home we built together, the home that sits right behind the first home we bought together, surrounded by her children and with me holding her hand. She was only 50 years old, exactly a month shy of her 51st birthday. She had made it past 50, which would have made her happy.
Although losing my wife to this disease is a major motivation for my continued advocacy, she wasn’t the first loss in the Eagan family to this disease. In the last two generations of her family, Alzheimer’s claimed seven out of eight family members. In addition to her father at age 42, her family also lost her uncle at 62 years old, three of her four cousins at 45, 46 and 52, and her sister at 47 years old. There are currently 27 members of the next two generations, and some of them are already on the disease path.
It was the loss of her cousins and her sister’s diagnosis that got Sandy involved in research. At the University of Washington, researchers traced her family’s history with the disease back five generations to Ireland, well before it was even called Alzheimer’s. Sandy enrolled in the University of Pittsburgh’s Compound B study, which was the first radioactive tracer that could track amyloid plaques in the brain of living subjects. I was there every year as she went back and endured two days of testing. She told them during the first trip, “I know that any treatments you find won’t help my sister or me if I get the disease, but I’m doing this for my babies, in the hope that they will be spared.”
We lost her older sister at age 47 on Christmas of 2008. I still remember how hard it was for Sandy to see her like that in the weeks leading up to her sister’s death – wheelchair bound, listless and mute. Just a shell of her sister, not the stubborn, fun, exuberant, quick-to-laughter sister she loved. When the call came, Christmas was nearly over. Our children were downstairs playing video games, and we were upstairs, winding down and resting. It was nearly midnight when the phone rang. We sprinted out of the house, and I tried desperately to hide the time from Sandy. I didn’t want her to know her sister had died on Christmas. Unbeknownst to us, just three months later, Sandy would become symptomatic with early-onset Alzheimer’s at the age of 44.
Earlier in the year, before Sandy’s sister died, leaving behind two children, Sandy couldn’t help but see the parallels to her own life in the life of her nieces. It was time to break the cycle, and she asked for my help to do it. For years, I ran the youth basketball and baseball leagues in our hometown. People knew me as a sociable guy, a talker, and someone who could fundraise like you wouldn’t believe – but, Sandy wasn’t ready to turn that fundraising focus to Alzheimer’s, and I respected that. She didn’t want her family or herself to be diminished to just the disease, and she had so much of her life she wanted to live free of the disease.
Eventually, I began speaking at the Alzheimer’s Association’s Town Halls around Washington, as well as with other local organizations that would make the time to hear the Eagan family story.
In the summer of 2009, right after we sat the kids down to tell them of Sandy’s diagnosis, we took a family trip to Pittsburgh so that the kids could see firsthand the testing their mother had been going through all of these years and to ask the researchers any questions. We also toured most of Pennsylvania and New York. We saw the Baseball Hall of Fame, Niagara Falls and even got Sandy to her version of Graceland – the Hershey’s Chocolate Factory!
That fall, we participated in our first Walk to End Alzheimer’s, where I also shared the Eagan family story. For a few years, Sandy was right by my side, motivating our family and friends along with me to fight for our cause. Even when she couldn’t walk, she still joined us at the events, smiling and laughing along, same as always. I still bring a part of her with me to every walk and event – her wedding ring on my pinky finger and her dad’s rock in my pocket.
The worst thing about watching the woman I love progress further into this disease was how fast it all seemed to happen. One day, our life was normal – kids in school, working our jobs, nights out, family events and so on – then suddenly, it all shifted and even our “new normal” never really became normal. Once one element was gone, another would follow. This week, she trips while walking. In a few months, she can’t walk without assistance. Even later still, she can’t walk or stand at all. I found myself asking, “When did she say my name last? My children’s names? When was the last time she answered to hers?”
My time with her was spent finding ways to cultivate a smile or, even better, a laugh. I was blessed to have my adult children available as in-home caregivers during the week, but the weekends were our time. We would get in the car and just drive sometimes, enjoy the peace of our own company and a good song on the radio. Most Saturdays started off at Black Bear Diner, especially since they always kept Sandy’s hot chocolate mug full. We tried every day to make things as normal as possible and to let her live her life, whatever that was today. She had a dream of seeing her kids graduate high school, and she did. She even saw my oldest son and daughter graduate from college!
Even with the good we could find, I was missing my wife, my friend, the true center of my life. I still miss her today. That’s the horrible bittersweet aspect of all of this – a concept Sandy herself wrote about at one time. My wife, my children and I were closer than ever, but we were slowly saying goodbye to a woman we couldn’t imagine continuing without. We still had moments of great joy and happiness, but it was all tinted and timestamped alongside her deterioration. We operated in a world of unknowns. Are we doing this right? Is she happy? Does she still know us? What happens next? Yet, we couldn’t and still can’t get bogged down in questions.
In caring for Sandy, we learned that we had to live in the now, we had to live in her world and see things through her eyes to connect – and that’s still the case. Because in the world she was forced to leave, Alzheimer’s is still running rampant and unchecked. We need this to end NOW!
When I do talk publicly about Alzheimer’s and our families journey, I usually close by stating the following fact with a hypothetical question: Only 5% of Alzheimer’s patients become symptomatic before the age of 60. But what if those numbers were reversed, and 95% of the people with Alzheimer’s were symptomatic before the age of 60? Would we have treatments and a cure?
Sadly, I believe that we would have treatments and a cure, as do most of the people who hear the question.
In my 11 years as an advocate, I have witnessed the federal funding for Alzheimer’s research go from $448 million in 2011 to over $2.8 Billion in 2020. We need to keep the forward momentum toward treatments and a cure by 2025. We need you and your story. We need you to join us as an advocate!
What’s your connection to Alzheimer’s disease or dementia? Join us for Advocacy Day in Olympia, WA on Feb. 18, 2020 and share your story with Washington State legislators, encouraging them to fund better care and support programs and priority recommendations from the Alzheimer’s State Plan. Your voice matters. Learn more here!