Caregivers: A Beacon of Hope amid the Fog

Fernández-Santos, pictured with three of her birds, from left-right, Sunny, Kiwi and her macaw, Laila.

When Alzheimer’s disease strikes, it can be a confusing and difficult time for a family. Lili Fernández-Santos, 56, learned to cope with the stress of her caregiver role when her mother, Lilia, was diagnosed with Alzheimer’s disease 12 years ago.

Born in Havana, Fernández-Santos came to the United States with her mother when she was 8 years old. With help from the Catholic Church, her mother found work in Los Angeles, registered Lili in elementary school, and they started their new life.

Fearful of earthquakes, her mother decided to move to Miami when Lili was 13. Eventually, Fernández-Santos married and had two kids of her own. After an unsuccessful and rocky relationship, she divorced. Throughout the ordeal, Lilia stayed by her daughter’s side, providing emotional support and helping Fernández-Santos rear her children.

“Life was pretty uneventful,” she says. “I guess it was just the calm before the storm.”

Twelve years ago, her mother found her way to her daughter’s house. Upon arriving, she told Fernández-Santos that someone had stolen her car. Fernández-Santos immediately called the Miami-Dade Police Department to file a report; however, she and a friend drove around and found her mother’s car a few blocks from Fernández-Santos’s home. She later learned that no one had stolen it. Her mother had abandoned the car and forgotten where she left it.

“At first, I didn’t know what was happening to her,” Fernández-Santos says.

Not knowing what to make of this incident, she took her mother to a doctor who referred her to a psychiatrist. Following an evaluation, Fernández-Santos learned that her mother was in the early stages of Alzheimer’s disease.

“I was devastated,” says Fernández-Santos. “Prior to this incident, my mother was a very independent woman who worked on the assembly line of a shoe factory in Hialeah, had an active social life, and lived by herself.”

Unbeknownst to Fernández-Santos, Alzheimer’s disease had been robbing her of the mother-daughter bond that sustained her emotionally. As a single mother with two boys, Fernández-Santos who was already juggling work and maintaining a home, now had to contend with being a caregiver to her mother whose behavior was increasingly erratic.

According to the National Institute on Aging, as Alzheimer’s disease progresses, people experience greater memory loss and other cognitive difficulties. Problems can include wandering and getting lost, trouble handling money and paying bills, repeating questions, taking longer to complete normal daily tasks, as well as personality and behavior changes.

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Fernández-Santos’ mother plays with her floppy doll, Lilita, at the nursing home where she lives.

The car incident marked the beginning of what would be her mother’s long decline and a period of intense anxiety for Fernández-Santos. Lilia had become prone to bouts of crying over her forgetfulness and experienced fits of anger which she directed at those closest to her. She was descending into the mental fog that characterizes this illness.

“Eventually, it got to the point where I had to put her into a home. I had to go to work, take care of my kids, and I had no one that could take care of her during the day. My mother needed professional help,” said Fernández-Santos. “It was dangerous to keep her home by herself during the day.”

Once her mother was in the nursing home, Fernández-Santos could begin to reassemble her life with the help of friends and the nurses at the nursing home. Nevertheless, she acknowledges that it has not been easy as caregiving is physically and mentally demanding.

“It’s exhausting, challenging, and requires a lot of patience but I feel I have made her quality of life better by taking care of her. As a child, she instilled in me the importance of family being first in life,” Fernández-Santos says.

Fernández-Santos’ son, Mario, feels that his grandmother left too soon.

“There have been holidays, birthdays or family gatherings in which I cry because I miss her and she cannot be with us on those special occasions,” he says.

However, Fernández-Santos finds solace in her birds. She has four birds: Kiwi, a green and gray Florida Quaker parrot; Sunny, an orange, yellow and green Sun Conure parrot; Tweety, a yellow, Indian Ringneck parrot and Laila, a green, red and blue Chestnut-fronted mini-macaw. When speaking of her birds, Lili’s face lights up.

“My husband, René, recently made a cage for my birds that is attached to the house, so I can open the sliding-glass doors in my dining room and the birds can enjoy the fresh air,” she says as she points to the dining area.

“Lili enjoys her birds and I enjoy seeing her happy,” René says.

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Fernández-Santos and her husband, René, having lunch at Florida’s Hollywood Beach boardwalk.

Fernández-Santos also finds relief from the stress of caregiving by going to the beach and practicing yoga.

“You must find hobbies to take your mind off of your loved one so you do not break down mentally,” says Fernández-Santos.

She advises those who are new to the caregiver role to educate themselves about their loved one’s illness, have lots of patience and most importantly, to get involved in their family member’s care.

Staring into the distance, Fernández-Santos adds,“Although I become extremely sad, Mom feels happy when I visit her. She lost her home, her family, her friends. Nobody goes to see you when you are sick. It’s as if she died, but she is still here. I lost my mother.”

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