It’s hard to take care of yourself when you’re always taking care of someone else. Caregivers for people with Parkinson’s disease often need to be reminded about self-care. Otherwise, the relentless physical and emotional toll of caregiving can quickly lead to burnout and compromise their own health.

Read on for tips on how to manage the stress, constantly shifting challenges, and exhaustion that may come with being a Parkinson’s disease caregiver, particularly as the condition progresses.

Why Is Self-Care Important for Caregivers?

Studies show that over a third of caregivers are also managing their own health problems. Unfortunately, many caregivers don’t have the support they need, and 11 percent say their physical health has worsened while caring for others.

Financial concerns, along with trouble balancing work and caregiving, can add another layer of emotional stress. Up to 70 percent of caregivers experience symptoms of depression. And those caregivers are more likely to also live with chronic disease, anxiety, and substance use or dependence.

Self-care isn’t selfish or indulgent — it’s an important aspect of maintaining your energy and staying healthy.

You owe it to yourself and the person you care for to nurture your own well-being. One study showed that when caregivers have a better quality of life, Parkinson’s symptoms improve in the person they care for. In other words, self-care can help both you and your loved one.

What Are the Risks of Caregiving?

To understand why you need to care for yourself, it’s helpful to know the health risks associated with caregiving. One of the biggest risks is the demand that caregiving stress can put on your heart.

Chronic sympathetic nervous system activation (the “fight-or-flight” response) significantly increases caregivers’ risk of high blood pressure and heart disease. Some studies have found that women who spend at least nine hours a week caring for a spouse have double the risk of developing heart disease.

Hazards of Skipping Self-Care

Ignoring your own health doesn’t benefit you or your loved ones. Nonetheless, caregivers often neglect their own needs.

In general, caregivers are more likely to:

It’s not usually that caregivers don’t know or think about their health. They just don’t always have the time and energy to make healthy habits a daily priority.

Self-Care Tips for Caregivers

To help stay emotionally and physically fit, you can take practical steps toward improving your quality of life while caregiving.

As a caregiver, it can be very hard to find time for yourself between daily tasks. But breaks are essential. Scheduling even a small amount of time for some fresh air, a cup of tea, a hot bath, a hobby, or social time with friends can be restorative.

It’s difficult to keep your own health in mind when you’re worried about someone else’s. But when you can get a little free time, reserve some of it for exercise.

Physical activity can help reduce depression and stress in daily life, maintain your energy levels, and improve your sleep. Even a walk around the block can help calm you down and refresh your perspective.

As much as possible, get plenty of rest. Inadequate sleep can take a toll on your physical and mental health.

And along with sticking to healthy routines, do everything in your power to keep up with your medical appointments. According to one national survey, 21 percent of female caregivers get mammograms (breast cancer screenings) less often than they used to.

If you’re feeling healthy, it may seem like medical appointments are a waste of time. But the stress of caregiving can translate into real health risks, including infections and a higher risk of cancer. You can’t afford to miss recommended screenings.

Practicing mindfulness can also help you cope with the challenges of caregiving. Mindfulness includes a number of practices for developing self-awareness and managing stress, such as:

One member of MyParkinsonsTeam meditates with her husband, whom she cares for. “I started meditating years ago,” she shared. “My husband expressed an interest in joining me and learning more about it himself.”

“We actually just finished a guided meditation together,” she explained. “It provides us both with not only a break but a means to practice a skill that strengthens both of our abilities to manage our respective stressors. It’s also great to have a shared activity that makes us feel more connected.”

Participating in a dedicated support group for caregivers can be really helpful. You can join an online group such as MyParkinsonsTeam or find an in-person group to share experiences and acknowledge the feelings you have about caregiving.

One MyParkinsonsTeam member mentioned the importance of support groups with other caregivers. “I see a therapist, which helps, but it’s not the same as talking to another caregiver,” they shared.

You might want to join a caregivers’ support group early in your caregiving journey, during the early stages of Parkinson’s. The group can help you anticipate the challenges of caregiving as the disease progresses.

If you need individual counseling, ask your doctor for a referral for a mental health professional or psychotherapist.

Ask for and accept help if it’s available to you. Friends and family members often want to lend a hand but don’t know what to do. Communicate openly about what you need.

However, not everyone has close friends or family nearby. And even if they do, those people may have their own busy schedules that get in the way of offering caregiving support.

“We had to hire caregivers,” said a MyParkinsonsTeam member. “We have no one else. Our relatives live too far away to help every day. It’s not an inexpensive endeavor,” she explained.

Another member wrote, “My father has a variety of caregiver providers: (1) VA benefits, (2) hospice, (3) private caregivers, and (4) friends who take care of my dad while also taking my mom away for a few hours of rest and away time, and (5) family members who take turns spending a few days a month. This supports Mom and Dad.”

Accepting help from family, friends, or professional home-care agencies isn’t a sign of defeat — it is a vital way to build a sustainable care network.

Make sure you make use of all the financial and social resources available to you. You might also talk with a social worker about other options for part-time or full-time home care.

If caregiving is becoming overwhelming, ask the healthcare team about moving your loved one into a nursing home or care facility. This can be a difficult decision, but the care team can help you understand when it may be necessary.

The American Parkinson Disease Association has compiled useful resources for caregivers that can help you find the help you need. The Parkinson’s Foundation also provides a list of resources you can use.

Find activities that you and your loved one with Parkinson’s can enjoy together. One MyParkinsonsTeam member talked about participating in online activities designed to help people with Parkinson’s, which they also enjoyed.

“One thing I did last month was participate in Zoom ‘body and brain’ workshops, sponsored by NYU Langone. They were free and ranged from music therapy/vocal exercises to Rock Steady Boxing (I, the caregiver, was the weakest one! lol) and tai chi. There was also art therapy, but I missed that.”

The member continued, “I benefited as a caregiver and also as a human being from these workshops, so the importance of staying engaged in doing things even over Zoom/computer is really key. There are karaoke videos on YouTube where you can sing along to favorite songs while reading the words on screen. It really helps!”

Caregivers may not realize how much they’re appreciated, especially if the one they care for has delusions that cause them to make hurtful accusations. Sometimes it helps to tell friends and family about the effort it takes to be a caregiver.

“When we are out and about, we may often run into someone we know who knows I have Parkinson’s disease. The question to me always is ‘How are you doing?’ No one ever asks my wife, ‘How are YOU doing?’” shared a MyParkinsonsTeam member.

“It’s as if caregivers have suddenly become invisible,” he said. “So to all of you caretakers and caregivers, THANK YOU, THANK YOU, THANK YOU!! And bless you for loving us no less and respecting the situation we now find ourselves in — not just as a Parky, but as a couple who will live with and face this together.”