Lessons from Caregiving: A Daughter’s Story

Caring for a loved one with dementia can be a difficult and painful task, especially when that loved one lives far away. This is a fact that Donna Luzzi knows only too well as a former long-distance caregiver to her mother, Ednamae. Recently, Donna shared her personal caregiving journey with the Alzheimer’s Association, as well as some of the lessons she learned along the way.

A true role model

Donna credits most of her life skills and character traits to her mother.

“She loved the outdoors, such as skiing and visiting the mountains and the beaches,” Donna shared. “She also loved shopping and sewing with my sister.”

Ednamae, Donna added, was also known to be a “tough cookie” who believed in the value of education.

“My sister and I had only two options: trade school or college,” Donna said. “She did not want us to simply get a job. Education was really important to her, and she believed you had to learn to do something so that you can know how to take care of yourself and become independent adults.”

Ednamae

A traditional woman married to an old-school Italian, Ednamae somehow never let her busy schedule as a nurse deter her from her duties as a mom and a wife. She had a daily routine of cooking, cleaning and making sure her household ran smoothly.

“Mom liked a tidy home with the help of my sister and me,” Donna said. “She also took care of my dad who had his own health problems. Even after developing dementia, she would still try to get up in the morning to prepare their breakfast before he went to work and organized both of their medications.”

Facing reality

In 2013, at the age of 77, Ednamae was diagnosed with age-related vascular dementia. Looking back, Donna sees the warning signs of her mother’s disease more clearly.

“One of the earliest signs of Mom’s disease happened during the holidays, before she was officially diagnosed. She was 75 years old when she couldn’t remember what fried calamari was. As Italians, this is one of our favorite meals to eat during Christmastime. It is a very popular Italian dish. I first noticed something was off when she couldn’t recognize the dish anymore. She would ask questions such as, ‘What is this? Have I ever had that?’”

As her diagnosis progressed, Ednamae’s ability and memory failed more and more. When Donna moved to Florida in 2018, her mother continued living in New Jersey with her father, who worked as a school crossing guard.

“Mom would call me and cry about my dad being missing,” Donna said. “She would forget that my dad was at work.”

Eventually, Donna’s father retired at her pleading.

Ednamae with her husband and live-in aide, Sylvia.

“At the time, Mom needed someone to stay home and keep a better eye on her,” she said. “Dad was for sure in denial. … I wanted them both to move to Florida before Mom’s condition worsened, but he was stubborn; he refused to acknowledge what was happening. But people need to understand that burying your head in the sand isn’t going to help you or a loved one face the inevitable. The sooner you prepare, the better.”   

Life as a long-distance caretaker

After moving to Florida, Donna made sure to visit her mom every three months in two-week intervals. Between visits, Donna would speak with her mother every day on the phone, advising her on what to wear, what to make for breakfast and where to find items around the house.

“We had labels everywhere,” Donna shared. “We put them on the clothing in the closet, and there would be notes on kitchen shelves and the coffee pot. The note next to the medication in particular instructed, ‘Do not touch before calling Donna.’”

For Donna, having a care team in place was invaluable to her as her mother’s disease progressed.

“My biggest advice to anyone is make sure you have a solid support team,” Donna said. “There is no way I could do what I did for my mom without my sister, brother-in-law and my wife. Later, I hired Sylvia, my mom’s live-in aide who was also incredibly supportive.”

Gaining understanding

In addition to a support team, Donna knew she would need to be educated more on what was happening to her mother. Through a Google search, Donna discovered that the Alzheimer’s Association was offering classes at a local hospital.

After calling the organization’s 24/7 helpline and attending her first of many classes, she was given the number of Amy Schenk, a program manager for the Alzheimer’s Association.

“We spoke on the phone for two hours and I am so grateful for her,” Donna said. “She connected me with the resources that I needed, and I started to attend classes held by the Alzheimer’s Association. When I finally met Amy in person, it was a four-hour visit in her office and she offered a multitude of information.”

Attending the classes gave Donna more insight about Alzheimer’s and dementia.

“The classes reinforced the information I learned on my own and went into further depth about the different stages of the disease and what to expect,” she said. “They taught me how to communicate with Alzheimer’s and dementia patients and their behaviors through each stage.”

Donna added that she also began attending a monthly support group, which helped her to connect with others experiencing the same challenges she was going through.

Lessons learned

Ednamae passed away March 2, 2021 – just 17 days after celebrating her 85th birthday. At the time, she was under the care of hospice in her home. Throughout her mother’s 10-year battle with dementia, however, Donna learned many valuable lessons, which she now shares in the hopes of helping others facing the same challenges she did.

“If I had to choose my top three things, it would be to reiterate having a support team. They say it takes a village to raise a child. Well, it also takes a village to care for a dementia or Alzheimer’s patient.”

The second biggest lesson, she said, is for caregivers to remember to take care of themselves mentally, emotionally, physically and spiritually, noting that caretakers of family members will often place their own health and wellness on the backburner for their loved one.

“You cannot help anyone else if your own health begins to fail,” she said. “It is not selfish to take care of you, and it’s not selfish to get out of the house and experience life once in a while. I would say it’s crucial to do those things so that you can be clear-headed in taking care of your loved one when they need you.”

Lastly, Donna said that, regardless of age, it is important to plan for the unknown.

“For all the young people reading this, please have a plan already in action for any curveballs life might throw at you in the future,” she said. “Prepare for life while you are still physically and mentally able. This disease exhausted us financially. If I had the financial means, I would’ve hired a live-in aide sooner. You never know if you might fall victim to an illness yourself. If you know you have aging parents, then you need to figure out how best to take care of them.”

Donna Luzzi graduated from Georgian Court University in 1982 with a Bachelor’s of Arts in special education, elementary education and early childhood. She was a special education teacher for 35 years before retiring in June 2018. She married her wife Susan in 1990, and together they enjoy reading and outdoor activities such as visiting the beach, recreational boating, fitness and holistic health. They are also proud, active members of their church, where they participate in ushering and altar guild.

Published by Alzheimer's Association, Florida

The Alzheimer’s Association is a worldwide voluntary health organization dedicated to Alzheimer’s care, support and research. Our three Florida chapters serve all 67 counties with education and support in addition to raising funds for research. Our mission is to lead the way to end Alzheimer's and all other dementia — by accelerating global research, driving risk reduction and early detection, and maximizing quality care and support. Our vision is a world without Alzheimer's and all other dementia.

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