Being involved as a caregiver or care partner to someone with Parkinson’s disease (PD) changes your life in many ways. Your daily routine changes, and continues to change as the disease progresses. Your relationship with the person with PD also shifts, as the household chores and daily care of the person with PD fall to the care partner.
Research has shown that as PD progresses, the strain on the care partner also increases. There is also a significant correlation between the decline in physical functioning of the person with PD and a decline in the care partner's health and well-being. By recognizing this possibility, you can take proactive steps to cope with the demands of caregiving.1
Acknowledge your feelings
The diagnosis and symptoms of the disease can bring up powerful emotions for the person with PD, as well as their care partner. As a care partner, you also may have emotions about your role and the changes in your relationship. Anger, grief, guilt, and depression are common. To avoid acting from an emotional place, find ways to express your feelings, such as through journaling or speaking with a trusted friend or counselor.2,3
Get support
While friends and family can be a part of your support system, it can be helpful to talk to others who understand what you are going through firsthand. Support groups with other caregivers/care partners can provide a way to connect with others and a safe place to share your thoughts and emotions. Counseling can also be helpful. Social workers, therapists, and psychologists are trained to help care partners with coping and dealing with chronic disease.2
Know your limits
No one does caregiving perfectly, and it’s important to give yourself a break that not everything will go as planned. As you take on more caregiving activities, recognize your comfort level and what tasks you need help on.3
Tend to your relationship
Your relationship with your loved one will change, and PD can place a lot of stress on the relationship. Set aside time to engage with your loved one beyond caregiving tasks. Sharing memories, singing songs, or telling jokes can help you stay connected. It’s also important to work on forgiving your loved one for past wrongs or injustices, as holding resentment can make caregiving more difficult.3
Find meaning in your role
Caregiving is not all bad, and the meaning we give to any job or role we have makes a huge difference in how we feel. Many care partners note that their role is rewarding and provides them a new perspective to feel grateful for family and friends.3
Take time for you
Care partners require time away from their role to recharge and tend to their own needs. Set aside time to exercise, socialize with people who uplift you, or meditate.3