Susan Saccoccia-Olson of Cranston, RI knows a lot about Alzheimer’s. She’s a volunteer for Alzheimer’s Association Rhode Island and in the past had served on the organization’s board of directors for six years, two of which as its president. She also works with seniors in her job doing Medicare outreach and education for Blue Cross Blue Shield of Rhode Island.
But that’s not how she’s come to know so much about Alzheimer’s. Her knowledge, unfortunately, comes from a much more personal place; she’s lost both of her parents to the devastating disease.
Like many whose lives have been touched by Alzheimer’s, she suffered not only from the loss of her parents but also during the nearly 15 years she spent as caregiver to not only them but also raising her daughter; years when her own well-being was the last thing on her list.
“I’ve spent a lot of time as a caregiver,” Saccoccia-Olson says.
“Mom was 67 when she was diagnosed back in 1994. My daughter was born in 1997. Mom had the disease for 10 years before she passed in 2003, just a couple months before she and my father’s 50th anniversary. Dad had a really hard time when she passed away. I had to make all the arrangements, because he had difficulty coping with it. I was the ‘do-er’ in the family, I guess,” she says with a sad laugh.
About a decade later, Saccoccia-Olson would have to weather the same storm all over again, this time with her father.
“Dad was very different. He worked until he was 84 and wasn’t diagnosed until he was 87. He died last summer at 91. So it happened much later and faster for him,” she recalls. “When I saw him initially decline I was thinking, ‘Oh, I don’t know if I can do this again’ and I knew he would be difficult because he’d always been a tough and independent person. He would get angry with me sometimes because he would forget something and I would remind him, and he’d accuse me of blaming everything on his condition. It was hard in the beginning when he’d get angry and I didn’t know yet that it was the disease talking and not really him.”
Though she was stretched to the limit during those years when she was caring for the generations both before and after her at the same time, Saccoccia-Olson says she is very grateful that she wasn’t alone.
“I don’t know what I would have done without my husband, Dennis,” she says. “I think my mom and I were so close that it was probably more difficult for me to deal with things, so Dennis really stepped up to help me care for her. He helped with my dad too. He had previously worked in group homes, so he’s a natural caregiver and that was a big help. It was a long journey with both of my parents and the end was the most difficult.”
It was near the end of her father’s life that she made the decision to do something that would not only honor her parents’ memory but provide her with some peace of mind of her own.
It would even help to offer a measure of hope that her daughter and future generations may not have to face the same fate. She decided to participate in Alzheimer’s research.
“Dr. Salloway at the Memory and Aging Program had cared for both of my parents, and my mom had participated in the Aricept trial,” she says. “Toward the end of my dad’s illness Dr. Salloway mentioned the opportunity for me to participate in a study too, and I said “Sure, anything I can do, I will.’”
Saccoccia-Olson enrolled in the Generations Study, which is studying the effectiveness of medication aimed at slowing or preventing the start of Alzheimer’s in people who are at increased risk of developing the disease.
“I found it very beneficial because I figured with both parents having the disease that I was certainly at high risk. But the genetic testing in the study showed that I’m actually only at moderate risk, and my MRI and PET scans came out normal. That really gave me peace of mind,” Saccoccia-Olson says.
Although learning the results of these tests may not be for everyone, she says she preferred to have the knowledge rather than the wondering and worrying.
“I am of the belief that it’s always better to know than not know, that way regardless of what the outcome is, at least you know where you stand and can make plans and go from there,” she says. “And everybody [at the Memory and Aging Program] was so nice. They were always checking in with me all along the way, making sure I still wanted to know the results of each test, making sure I was comfortable with everything; they’re very good at what they do.”
Even with her parents gone and her own future looking safe from the disease for now, Saccoccia-Olson continues the fight to find an end to Alzheimer’s, through her volunteer work and by spreading the word about the importance of participating in research.
“The more research we have, the more likely we are to find an effective treatment for this disease, if not a cure,” she says. “That’s what I want people to know. It’s so important to participate in the research, because together I think we can find a solution to this awful problem.”
If you’re between the ages of 40 and 85 and have normal memory or mild cognitive impairment, you can help the Memory and Aging Program to make Alzheimer’s history, too. Join the Butler Hospital Alzheimer’s Prevention Registry online today to be matched with current or future research studies for which you may qualify at butler.org/ALZregistry.