It’s hard to take care of yourself when you’re always taking care of someone else. Caregivers for people with Parkinson’s disease (PD) often need self-care because they face physical and emotional challenges that can easily lead to burnout. This can be especially true for those caring for someone experiencing nonmotor symptoms like hallucinations or delusions.
Read on for tips on how to manage the stress, uncertainty, and exhaustion that may come with being a Parkinson’s disease caregiver, particularly if that person experiences hallucinations or delusions.
Self-care is not 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. A 2020 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 — the caretaker — and your loved one.
Learn about ways to manage hallucinations and delusions related to Parkinson’s.
To help stay emotionally and physically fit, you can take practical steps such as the following.
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 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. When you can get a little time, reserve some of it for exercise. Physical activity can help reduce depression and stress in daily life while improving your energy level and health. 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.
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:
Participate in a support group for caregivers. 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 member mentioned the importance of support groups with other caretakers. “I see a therapist, which helps, but it’s not the same as talking to another caregiver,” they said.
You might want to join a caregivers’ support group during the early stages of Parkinson’s. It can be helpful to 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. Friends and family members often want to lend a hand but don’t know what to do. Communicate openly about what you need.
Likewise, make sure you make use of all the financial and social resources available to you. A member of MyParkinsonsTeam stressed the importance of using whatever resources are available: “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) the family takes turns spending a few days a month. This supports Mom and Dad.”
You might also talk with a social worker about other avenues for intermittent, part-time, or full-time home care that may be available. If caregiving is becoming overwhelming, it’s important to talk with your health care team about the difficult decision of moving a loved one into a nursing home or care facility.
Find activities that you and your loved one with Parkinson’s can enjoy. One 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, also 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, the caregiver, 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!😀”
Sometimes caregivers may not realize how much they are 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 PD. The question to me always is ‘How are you doing?’ No one ever asks my wife, ‘How are YOU doing?’ It’s as if caregivers have suddenly become invisible,” a member wrote. “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.”
MyParkinsonsTeam is the social network for people with Parkinson’s disease and their loved ones. On MyParkinsonsTeam, more than 98,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s.
Are you a caretaker for someone with Parkinson’s? Have you found ways to practice self-care? Share your experience in the comments below, or start a conversation by posting on your Activities page.