Sharon Metz, R.N., M.P.H.
Associate Director, Helpline at the Parkinson’s Foundation
Whether you care for someone who was recently diagnosed with Parkinson’s disease (PD), are adapting to new challenges as the disease progresses, or have been living with PD for a long time, a strong support network is essential for your well-being and the well-being of the person with Parkinson’s. These tips from the Parkinson’s Foundation can help you navigate this journey while caring for a loved one and for yourself.
1. Maintain your social connections
Staying connected with family and friends is an integral part of your emotional well-being. Plan activities with them if they are local, or keep in touch through e-mails, texts, and phone calls. Talk about things other than caregiving.
2. Pursue your hobbies or interests
As a care partner for someone with PD, your life is different than it used to be, but your social interactions should not be limited to the person you care for. A simple change of scenery can be mentally stimulating and emotionally refreshing.
3. Prepare your backup team
Train one or two friends or family members to fill in for your caregiving duties, or investigate local respite care options. In-home services are available with a range of options, including companion, home health, and housekeeping services. Out-of-home respite care options include adult day programs and residential facilities.
4. Take time off when possible
When you are comfortable with your backup team, schedule time away from your caregiving responsibilities. This may be something as simple as turning off your cell phone or taking a walk, but it is essential for long-term caregivers.
Regular breaks from caregiving are an essential part of maintaining balance in your life. Take an hour daily, an afternoon weekly, or a day monthly — whatever you can manage. These breaks from your daily routines and responsibilities, often called “respite,” are especially important if you care full-time and are with the person you care for 24 hours a day.
5. Set boundaries
This is especially important if you work in a field that is related to PD. Others in your family will look to you to take responsibility for decisions. For example, if you are a doctor, relatives might ask you to confirm recommendations made by the care team. If you feel comfortable assuming these responsibilities, that is your prerogative. However, it is OK if you want to step out of your professional role and just be the loved one.
No matter where you are in your journey as a care partner, the Parkinson’s Foundation is here to support you. Visit Parkinson.org or contact the Parkinson’s Foundation free Helpline at 1-800-4PD-INFO (473-4636) or [email protected] to find expert care in your area, answers to your questions, nearby resources, and more.