No one is really prepared to be a caregiver. You may feel overwhelmed with your new responsibilities. You know that there is no cure for Parkinson’s and that the person with Parkinson’s will need even more help as the disease progresses. You know your lives will never be the same.
The first step is to discuss and agree with the person with Parkinson’s on the role you will play. The person with Parkinson’s will make the decisions, but you want to be there—to offer physical and emotional support when it’s needed. You need to talk about how your involvement can change as Parkinson’s evolves.
Then form a partnership with the person with Parkinson’s, health care team, family members and friends. Each has a contribution to make and a role to play in meeting the challenges of Parkinson’s. The more information you and the person with Parkinson’s have, the better equipped you will be to cope with day-to-day obstacles.
Listen to the doctor’s advice. Review what he or she recommends. Talk about available treatment options. Learn how the symptoms of Parkinson’s can be managed.
Get up-to-date, reliable information by contacting your doctor, calling the information line or visiting this website.
Contact us to determine what kind of support groups are available in your area for you and the person with Parkinson’s. These are a good opportunity to listen, learn and share experiences.
Know your limitations. Parkinson’s is progressive so it may be increasingly difficult to care for a person with Parkinson’s by yourself. Look into home care, day programs or help from your family members.
Every caregiver needs “time out” on a regular basis. Take a break and see friends. Ask for and accept support. Make a list of tasks others can do. People want to help—include them in the caregiving plans.
Find someone you trust when you’re feeling low or need to talk about some of your feelings. Get help when you are feeling stressed. And, remember, you are not alone!