On November 19, Lonnie and Muhammad Ali celebrated 28 years of marriage. When they got married, Mr. Ali was in his mid-40’s and already experiencing the early-stage symptoms of Parkinson’s disease (PD), a neurodegenerative disease that progresses over time. According to Lonnie, for many years, she was Mr. Ali’s care partner, a situation that she describes as “being there in a supportive role for a person who is functional,” including helping to supervise and coordinate care. Over time, however, as his symptoms worsened and his disease progressed, Mrs. Ali became one of the 65.7 million caregivers in the United States, and more specifically, one of the 52 million caretakers in the U.S. who care for adults with a disability or illness.

“The transition from care partner to caregiver can take a long time,” says Mrs. Ali, who outlines the many day-to-day tasks of being a caregiver. Being a caregiver requires a great deal of commitment and willingness to take on responsibility for coordinating daily activities, providing daily personal care, managing all medications and treatment regimens, attending every doctor’s appointment, and thinking about a person’s overall health needs, including exercise, entertainment and social needs. “It’s almost like having two lives,” she says.

“The transition from care partner to caregiver can take a long time, it’s almost like having two lives.”

The pragmatics of caregiving

For Lonnie Ali, being a caregiver to her husband, renowned around the world for being the greatest boxing champion of all time and a beloved humanitarian, is an act of love. Despite her husband’s celebrity status, their experience as a couple — a caregiver and a person being cared for— is universal. Yet, despite the fact that her role as a caregiver is informed by love, faith, courage, a sense of humor and her determination to be with her husband for better or for worse, she is a pragmatist.

First and foremost, Ms. Ali is a stickler for being organized and keeping careful records of her husband’s medications, reactions to medications, changes in mood or specific physical symptoms. She urges, "As a caregiver, you are the liaison between the doctor and the patient."

Her next tip is to remember that although a person may be sick or have a disability, “they are still a person, with personalities, emotions and histories.” She urges, “Treat them like individuals. Think like they would think and don’t project your feelings onto them.”

Taking care of yourself 

Ms. Ali enjoys pilates. It is one of the ways that she takes care of herself— something that caretakers have to do in order to be effective. She explains, “Most caregivers are so focused on the patients that they don’t take care of themselves. I know that if I’m going to stay strong for Muhammad, I have to stay strong for myself. Many caregivers suffer from so much stress that it eventually kills them.”

According to the American Association for Retired Persons (AARP), 17 percent of polled caregivers feel that their health has gotten worse. At the same time, 40 percent to 70 percent of caregivers have symptoms of depression, and in some cases, major depression. “The threat of depression is real for everyone,” says Ms. Ali. “It curtails caregivers’ desires, aspirations, wants and needs. It happens. It’s important to get the support you need.”

Shifting your perspective

Ms. Ali recommends that caregivers take a caregiving class, and that if you’re dealing with a disease like Parkinson’s disease or Alzheimer’s disease that you take a class that deals specially with those illnesses. When Ms. Ali took a class for caregivers of PD patients, she learned new things that have helped her create the proper environment for Mr. Ali. For example, PD patients do not like clutter. They like wide open spaces. She also learned where to position grab bars and configure their home to be as user-friendly as possible.

But even as Ms. Ali learned from fellow caregivers, she also noticed “a high level of apathy and anger that led to depression.” She says, “Many people see caretaking as a burden, because they don’t know how to deal with it. You have to look at caregiving as something that needs to be managed, not a daily crisis. People manage diabetes and hypertension— and they understand the long-term commitment. It requires a shift in perspective.”

Finding relief 

Ms. Ali is adamant that additional government support is needed for caregivers, who shoulder the physical and financial burden of caring for their loved ones, without any safety net. In fact, the AARP has reported that caregivers provide $450 billion in unpaid services for their loved ones, often putting their jobs at risk and significantly compromising their overall well-being.

But in the midst of these serious considerations, there is humor. She focuses on finding the things that give Mr. Ali pleasure— sports events on television, watching “The Voice,” physical therapy at the gym, time outdoors, going to the movies and to the zoo. She often catches a smile on her husband’s face and intentionally infuses their lives with levity and laughter, even as the hard tasks of day-to-day caregiving sometimes daunt her. She says, “When I wake up, I make the decision to speak in a joyous voice, to nurture positive energy and to make this a good day.”