PHILADELPHIA >> Of course, there were the terrible times: the angry outbursts. The ache of loss. The undeniable sorrow.
In the last three years of her life with Alzheimer’s disease, Nicole MacLean’s mother, Sally Horrocks, sometimes forgot who her daughter was. A gentle woman all her life, Horrocks would strike out violently at MacLean in confusion and fear.
But there were days to cherish, too, especially when mother and daughter took part together in the Philadelphia Walk to End Alzheimer’s.
“I had her in a wheelchair and I pushed her through the walk, and she thought this gathering was all for her. I let her believe it because it made her happy,” recalled MacLean, 63, of Havertown, Pa. “People would come up to her, touch her, talk to her and hold her hand. She just felt so incredibly special.”
In July 2019, when Horrocks was 81, Alzheimer’s took her life. MacLean vowed to continue participating in the annual walk in her mother’s honor.
So at this year’s annual event, MacLean was set to do just that. But for the first time, she would also walk for herself.
In August she herself was diagnosed with early-onset Alzheimer’s.
The first chilling sign of the disease had come just months after her mother died.
“I had gone to the grocery store, and then the next thing I remember, I had driven to a town, and I didn’t know where I was,” she said. “I didn’t know how to get home. I didn’t know how I had gotten there, but I was the only one in my car, so I had to have driven there.”
Her doctor dismissed her fears, saying she was “too young” for Alzheimer’s. But the memory lapses continued. Finally, early this year she went back to her doctor. Mild cognitive impairment, she was told. She didn’t buy it. So when she heard about an Alzheimer’s assessment through a pharmaceutical clinical trial, she signed up.
She was at work when she got her diagnosis in August.
“I cried,” she said. “I thought I was prepared, but actually hearing the words, I cried.”
When the initial shock subsided, so did her tears.
“I was like, ‘OK, thank you, God — now that I know, I can be prepared.’ I thought of it as a gift because I can make plans now. A lot of people who don’t get that early diagnosis don’t know to make plans. Then it becomes too late.”
At the opening ceremony at Citizens Bank Park for what has become one of the nation’s largest Alzheimer’s walks, MacLean was set to be present at the event’s Promise Garden to lift a blue flower, a gesture representing and honoring the more than 6 million Americans living with the disease. (Caregivers carry yellow flowers. Purple flowers are for those who have lost a loved one. Orange flowers are for advocates.)
MacLean, who took part in the national fundraising event long before her mother was ever stricken, was chosen for the flower-raising honor in part because of the singularly graceful way she has faced her diagnosis.
“Nicole’s just a light,” said Samatha Sayward, senior walk director. “I lost my grandmother to dementia; I’ve seen firsthand the devastating impact it has on families and what it does to the person who has been diagnosed. I felt Nicole could bring a positivity that people with Alzheimer’s and their families could really use.”
MacLean’s gracious bearing is all the more remarkable because she knows exactly what awaits her. In the three years her mother shared MacLean’s home after the 2016 death of MacLean’s father — Horrocks’ caregiver in the earlier stages of the incurable brain disease — MacLean gained intimate knowledge of what Alzheimer’s does to a person.
Before her mother moved in, MacLean imagined all the things they would do together — day trips to craft shows, road trips to places like the Florida Keys and Mount Rushmore.
But reality quickly displaced her fantasies.
“There were days my mother didn’t know where she was or who I was. She didn’t know where my dad was,” MacLean said. “I realized her Alzheimer’s was more advanced than I’d thought.”
Other people’s reactions to her mother’s cognitive decline were dispiriting.
“People would ask me, ‘How’s your mom doing?’ — and she was sitting right next to me. That was very sad,” said MacLean.
That’s why it was so special for Horrocks to attend MacLean’s church, a home-based congregation where people were accepting and kind. Sometimes, singing a hymn from the past or invoking a memory from long ago could bring her back, remind her of who she was.
But as the disease advanced, Horrocks began to “disappear into an unknown world where she was no longer my mom,” says MacLean. “It was almost more than I could bear.”
Toward the end of her life, Horrocks would sometimes erupt into rages. MacLean now believes fear — deep, wordless — drove much of her mother’s behavior.
“Some days I would look at my mom, and she would have a look on her face that showed she was scared to death,” said MacLean. “She knew something was happening, and she was terrified.”
As for her own immediate plans, MacLean, a single woman with a full life, wants to spend as much time as she can with loved ones; she has a daughter, son-in-law and two grandchildren, and dear friends.
“I’m a little sad that I may start to forget people,” she said. “But before that starts to happen, I’m going to make sure I fill every moment and every second with them with as much love and joy as I can while I remember it.”
And she would like to start a support group for Alzheimer’s caregivers to share what she has learned so “they understand they’re not alone, and it’s OK to be frustrated, it’s OK to be mad.”
MacLean, who is a branch officer administrator with Edward Jones, the financial services company, has a five-year plan that includes retirement and a 10-year plan that could encompass new medical breakthroughs. Nonetheless, she has arranged for a couple from her church to care for her when she can no longer live alone. They have her power of attorney, and she said her retirement savings should keep her from becoming a financial burden on anyone.
As her disease advances, she has told everyone, she wants them to remember, “I’m still me. Still talk to me. Still hug me. Still hold my hand.”
Since her diagnosis, she said, she has experienced more of what she calls “time hiccups.”
“Just recently, I lost a span of 10 minutes; I don’t remember anything that happened in that time,” she said. “People who were with me say, ‘Well, you were talking to us. Don’t you remember having this conversation?’ And I don’t remember it at all. It’s scary. It reminds me, ‘This must have been what it was like for my mom.’”