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How to Advocate for Your Loved One
Identify Your“ Why” You always want the best care for your loved one with Parkinson’ s. But at times, you’ ll have specific goals around care, like relieving anxiety or depression, understanding a new symptom, coordinating communication among providers or arranging more in-home help. Knowing what you hope to achieve or gain helps you take the right steps to do so.
Ask Your Loved One’ s Permission
Explain why you want to help and ask what feels supportive to them. Do they want you to take notes, complete medical questionnaires, ask clarifying questions or summarize next steps? During the visit, check in with them:“ Would it be helpful if I …?” or“ Is it okay if I …?”
Touch Base before Appointments
A day or two before a visit, set aside time to review with your loved one: What’ s changed since the last appointment? Are things better, worse or the same? Why do you feel that way? Share what you’ ve noticed. Together, choose the top three topics you want to discuss with your provider. If you’ re requesting something specific— for example, more in-home care— list concrete reasons, like falls or safety concerns, to make your case.
Speak Up during Visits
You are part of the care team. Introduce yourself and your role:“ I’ m Jane’ s husband and care partner.” Take notes or, with the clinician’ s permission, record the conversation. Ask questions and confirm understanding:“ Can I repeat that back so I’ m sure I’ ve got it right?” or“ We’ re adding a bedtime dose of Parkinson’ s medication to help with sleep, correct?” If something isn’ t clear, ask for another explanation, a diagram or written information. Document the plan, medication changes, referrals and next steps.( Or ask for a printed summary with that information.) Be respectful of both your loved one and the clinician, but stay firm about what you need.
Complete Any Necessary Paperwork
To comply with health care privacy laws, make sure you fill out the necessary forms— with your loved one’ s permission— that allow you to communicate directly with their medical team both during and outside of visits. This paperwork will allow you to call, message and speak on your loved one’ s behalf, when needed.
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