When Parkinson's Strikes, Caregivers Step Up but Stress Can Take a Toll

On any given day — and all through the night — Manuela Rodriguez, her sister Valeria and their mother Beatriz can be found tracking medications, scheduling doctors’ appointments, preparing meals and offering physical assistance and words of encouragement. At the center of their attention is the family’s patriarch — 72-year-old Luis Rodriguez — who was diagnosed with Parkinson’s disease (PD) three years ago.

An estimated 1 million people in the U.S. are living with PD, a disorder that occurs when nerve cells in the brain, particularly those producing dopamine, a chemical messenger that helps transmit signals in the brain and nervous system, begin to break down. The disease affects movement, cognitive function and mental health. As the disease progresses, coordination, balance and posture worsen, and many patients end up wheelchair- or bed-bound and need assistance with daily activities.

There is no cure and up to half of all Parkinson’s patients develop dementia.

Caring for a loved one with PD is an around-the-clock job. And while the Rodriguez family wouldn’t have it any other way and does everything to ensure Luis gets the best care possible, they understand that if they ignore their own needs, the resulting exhaustion, depression and anxiety that are common in caregivers isn’t in anyone’s best interest.

“We are a close and supportive family, but it’s been hard to accept that he is not going to ‘get better,’” says Manuela Rodriguez, a licensed marriage and family therapist with Baptist Health. Ms. Rodriguez spoke recently about her family’s personal experience and the importance of caring for caregivers at the Symposium for Parkinson’s Disease Patients and Caregivers, hosted by Community Health and Baptist Health Miami Neuroscience Institute.

A Holistic Approach to Parkinson’s Disease

“A symposium like this is important because we want the community to know that we are here for them,” says Diego Torres-Russotto, M.D., co-director of the Symposium and Distinguished Chair in Neurology at the Institute. “We’re not here just to care for their disease, but to educate and empower them with knowledge so that they can advocate for themselves and their loved ones and understand the importance of a holistic approach for Parkinson’s disease.”

Diego Torres-Russotto, M.D., Distinguished Chair in Neurology at Baptist Health Miami Neuroscience Institute

Sessions at the Symposium included discussions about diagnosing PD, common medications and physical, occupational and speech therapy, as well as:

·       What Causes PD? – Diego Torres-Russotto, M.D.

·       Conditions that Mimic Parkinson’s Disease – Samer Tabbal, M.D.

·       Dystonia and Chemodenervation – Diego Torres-Russotto, M.D.

·       DBS and HIFU Treatments – Justin Sporrer, M.D.

·       Thinking and Memory in PD – Patricia Junquera, M.D.

·       Non-Motor Symptoms – Douglas Inciarte, M.D.

·       The Importance of Physical Activity – Lina Hurtado, M.D.

For the Rodriguez family, as they watched Luis go from being a lifelong athlete who played basketball with men half his age to needing assistance with walking, they knew the best approach for them was to move Luis and Beatriz into Valeria’s home. “The nights are long, my sister works all day and if my mother is up all day and night, it is difficult,” Ms. Rodriguez says.

The 5-foot tall, 70-year-old Beatriz Rodriguez appreciates the help from her daughters, grandchildren and others. “It is hard,” she acknowledges. “I have to have a lot of strength to help him move.” Her husband is 6-foot-four.

“It takes a village, a family network, home health aides, physical therapists, dietitians, doctors, even neighbors. Communication among all of us is key,” Manuela Rodriguez says. “And, like all caregivers, we are constantly asking what more we can do.”

Tips for Parkinson’s Disease Caregivers

Because of the demands, caregivers can easily find themselves sleep deprived and eating poorly, as well as postponing or canceling their own medical appointments. And, when time is tight, they often fail to exercise. To reduce the burnout, stress and depression that are common among caregivers, Ms. Rodriguez suggests:

·      Involving extended family in conversations about duties they can perform and about how they can provide companionship to the patient and caregiver.

·      Putting information in writing, such as a current list of medications with instructions so that there is no confusion among caregivers.

·      Taking some time for yourself, whether that’s enjoying a bubble bath, listening to guided meditation, going for a walk or meeting a friend for lunch.

·      Joining a support group. There are a variety of groups available, including in-person and virtual options, as well as those that cater to certain audiences, such as grandchildren.

·      Getting a good night’s sleep.

·      Attending educational and social webinars through organizations such as the Parkinson’s Foundation and Baptist Health.

·      Downloading one of the many self-care Bingo cards online (or developing your own) and getting family members to join you in a challenge.

·      Utilizing the resources of organizations such as the Parkinson’s Foundation and the Michael J. Fox Foundation.

In addition to reducing burnout, the benefits of self-care include improved emotional resilience, increased energy and stamina and better physical health, Ms. Rodriguez says.

Luis and Beatriz attended the Symposium and listened to their daughter talk. At the end of her session, Luis applauded longer than anyone in the room. “I’m feeling pretty good today,” he said from his wheelchair, which he uses for extended trips.

“It’s our turn to help you, Daddy,” Ms. Rodriguez said to her father. “We learned a lot from the Symposium and we can’t wait to continue the conversations with the team and helping my dad get more support.”