"The truth is that the whole family lives with Parkinson’s."
PDF Research Advocate Beth Ann Chard, care partner to fellow advocate Gary who lives with Parkinson's
Caring in Parkinson's
Parkinson’s disease does not just affect the person living with it – it affects the entire family and an extended community of friends and loved ones.
If you are the care partner, child, parent, grandparent or loved one to a person with Parkinson’s, you are familiar with the challenges that come with living with the disease. Your responsibilities may include helping a loved one with daily activities, managing medications and making financial decisions.
As a care partner it may be difficult to let others help or to take time for yourself. Remember that it is as important for you, as it is for the person with Parkinson's, to care for yourself and to begin understanding the disease. Taking care of yourself can benefit both you and your partner. Benefits include revitalized energy, renewed interest in creative endeavors, new subjects to talk about and the realization that you and your partner are not alone.
How can you get started?
- Find a support group: For many people, support groups play an important role in the emotional well-being. Some groups are targeted towards care partners. They can provide a comfortable environment for asking questions, sharing experiences and advice, and creating friendships. PDF keeps a listing of nationwide Parkinson's support groups. To find one in your area, please call or email PDF at (800) 457-6676 or firstname.lastname@example.org.
- Take Time for Yourself: For those who have family in the area, friends and family are often willing to help, but are unaware of your needs. With their help you can find time to yourself. Consider making a list of things that others can do that may help you, if even for two to three hours. It may be difficult to get used to asking for help or even hiring help. But remember that since caregiving is a role you are in and undoubtedly wish to do well, you will need to care for yourself in order to offer the most you can.