PATIENCE, PARTNERSHIP, AND PARKINSON’S DISEASE: A CAREGIVER’S GUIDE TO EMOTIONAL HEALTH

When your loved one has Parkinson’s disease, it can strain your relationship.

“Partner strain is often underrecognized with Parkinson’s,” says Sneha Mantri, MD, the chief medical officer of the Parkinson’s Foundation, a practicing neurologist, and a movement disorder specialist at Duke Health in Durham, North Carolina. “As the disease gets more advanced, people can develop emotional liability,” or difficulty controlling emotions, which often appear exaggerated and fluctuate rapidly. Emotional lability occurs because of changes in the brain, but also, adds Dr. Mantri, many people with Parkinson’s can become more frustrated as the disease progresses and things take more time and mental effort. 

These emotional swings are not personal feelings — they’re non-motor symptoms of Parkinson’s disease. And with the right plan in place, you can support your loved one through these emotions and take steps to protect your own mental health. 

Communication Tools for Navigating ‘Off’ Moments

You can learn how to communicate effectively with your loved one, even during a heightened emotional state of frustration, anxiety, or irritability, and more easily navigate this journey together. Start with these strategies:

Practice active listening: Sometimes your loved one just needs to be heard, without having you try to “fix” things for them.

Pause before responding: It can be tough to do in the heat of the moment, but try to reflect on what you want to say, and the best way to deliver your message with kindness and empathy. 

Focus on de-escalation: For example, says Mantri, if your loved one is having a visual hallucination that feels very real to them, “redirect them, or distract them, or get them to focus on something else to help lessen the hallucination itself without making it into an argument about whether something is or isn’t physically there.”

Remind them of their self-worth: “Remind the person with Parkinson's disease that they have self-worth, regardless of what they can or cannot physically or mentally do,” says Mantri. “Just hearing that from a loved one or somebody who cares for you can be such a powerful thing for someone who's dealing with these very real frustrations.” 

Tips to Prioritize Your Mental Health

When helping a loved one navigate the emotional ups and downs of Parkinson’s disease, it’s equally important to prioritize your own mental health. These tips can help:

Make time for yourself: “You can’t pour from an empty cup,” says Mantri. It’s important to schedule breaks into each day to do something just for you — whether that’s practicing mindfulness or getting coffee with a friend. “Do something that fulfills you,” she says. 

Mind your health: “Make sure you put your own health first,” says Adena Leder, DO, a neurologist and the director of the Parkinson's center at New York Institute of Technology in Old Westbury, New York. For example, focus on eating a nutritious diet, staying active, prioritizing sleep, managing stress, and seeking emotional support. 

Join a support group: “It’s important for caregivers to have their own support network so they can discuss what they’re going through with other people who are dealing with the same situations,” says Dr. Leder. 

Consider respite care: If you can afford it, arrange care for your loved one while you take a break to give yourself space for some much-needed “me" time. Options range from in-home care for helping your loved one with daily tasks to out-of-home care like adult day programs.

Be honest with your loved one’s care team: “Bring up your concerns at the next clinical visit, so they’re aware of the impact this is having, not just on the person with Parkinson’s, but everyone around them,” says Mantri. “Your loved one’s care team may have resources that can help, whether that’s adjusting medication or a referral to social work or therapy.”

The Takeaway

Emotional swings are a symptom of Parkinson’s disease, and they can intensify as the disease progresses and add strain to the caregiving relationship. Practice compassionate communication by listening, pausing before you respond, and focusing on de-escalation to support your loved one’s emotions and defuse conflict. As a caregiver, protect your own physical health and mental well-being by scheduling breaks, joining support groups, and utilizing respite care to sustain yourself and your relationship.