Caring for someone with Parkinson’s disease (PD) isn’t easy. Parkinson’s disease impacts different people in different ways. New symptoms can occur that you may not expect. For example, your loved one may eventually face struggles such as difficulty swallowing, trouble balancing, dementia or depression. To deliver the best care, it’s important to be educated, prepared and organized.
A Parkinson’s disease diagnosis can leave individuals and those closest to them feeling uninformed, scared and overwhelmed. As their caregiver, there are things you can do to help you take better care of them.
Allow time for you both to process – Because symptoms of the disease vary, it can be hard for the PD patient to manage feelings. Respect the person’s journey and work to keep a good relationship. When you’re both ready, talk openly about the disease and what it means to each of you. Above all, try not to let the disease take over or define either of your lives.
Get educated – Preparing for a caregiving journey starts with education. Emotional support is needed throughout the journey, but it’s important to develop this support in the early stages of PD. Local and Internet support groups are great ways to talk about your concerns, get advice and share your feelings with other caregivers and those suffering from PD. The Parkinson’s Disease Foundation (www.pdf.org/en/support_list) keeps a list of support groups in your area. This service is free.
Hands-on care comes with later stages. Use the time after diagnosis to learn about the disease, look into available resources and learn about symptoms of the disease as it gets worse.
Finding the right medical care – As soon as you can, find a neurologist who is a movement disorder specialist. Your loved one’s doctor may be able to refer you to such a specialist, or you can contact one of the national Parkinson organizations for a specialist in your area. Look for someone you and the person you’re caring for both feel comfortable with. Try to attend appointments together as your schedule allows. You’ll find out a lot and it helps the PD patient to have an extra set of ears.
As the disease gets worse, your loved one may look to you for support with medical decisions. Become familiar with the details of his or her medical insurance coverage and medical history.
Stay organized – Organization is key to avoiding stress and becoming overwhelmed. It helps to keep a dedicated calendar with health-related appointments, medication start and stop dates and any important notes. This will come in handy as questions come up from your loved one’s medical team. Consider keeping a document with names and contact information for family, close neighbors or friends who should be contacted in an emergency. Additionally, a list of important contacts such as clergy, medical professionals, attorney, accountant and pharmacist is helpful when questions or issues come up.
Take care of yourself – Remember, the person you’re caring for needs you to be healthy so you can give the best care possible. Focus on giving yourself time to relax. Eat healthy, exercise and get plenty of rest. Don’t forget you have a life outside of Parkinson’s disease. Schedule your own social activities and make time to do things you enjoy. Above all, don’t be afraid to accept or ask for help from others. Reach out to family, friends or Parkinson’s disease advocacy groups such as The National Parkinson Foundation when searching for help.