How Do I Advocate for My Loved One?
Advocacy is a core way to partner in care. It means speaking up with or for your loved one, especially in medical settings, so they get what they need.
As a care partner, you make a great advocate because you know your loved one as a whole person, not just as their Parkinson’ s symptoms. You recognize what matters to them and what they want from their care.( If you’ re not sure, ask. These conversations make you a better advocate.) You may also notice early or subtle changes in mood, thinking or behavior that your loved one may miss. With their permission and best interests at heart, raise these observations first with them and then as partners to their clinician.
Advocacy can feel intimidating. You might worry about asking the wrong questions or taking too much of a provider’ s time. Remember, you and the care team share the same goal, which is to help you and your loved one live as well as possible with Parkinson’ s.
Effective advocacy ensures that both you and your loved one are heard, your questions are answered, you understand why tests or treatment changes are recommended( or not), you know what to watch for with Parkinson’ s and its therapies and you feel confident in the care team.
Advocacy beyond the Doctor’ s Office
Your advocacy may take place primarily during routine doctor appointments, but you may also need to speak up in emergency room, hospital or long-term care settings. Here, advocacy can be even more critical because staff may not know your loved one or their Parkinson’ s-specific needs as well as you or the regular care team. You might need to insist on home medication schedules, request consultation with your loved one’ s Parkinson’ s specialist or a neurologist or even educate about which medications can worsen Parkinson’ s, like certain antipsychotic, sleep or nausea medications.
Don’ t worry about having all the information. You can point providers to credible information, such as that on the Foundation’ s website, and ask pointed questions: What drug are you giving or prescribing? Is that okay with Parkinson’ s? Can you clear that with their Parkinson’ s doctor?
Advocate for Yourself, Too
Advocacy also includes speaking up for your needs. Care partners can feel invisible; clinicians may not ask how you’ re doing, and you may not know when to speak up, given that focus is, rightfully, centered on your loved one. But it’ s important to make your voice heard. Share how you are feeling:“ Here’ s what we’ re struggling with …” or“ I think we need some help with...” and fill in the blank— whether that’ s tracking medications, keeping your loved one safe during the day or feeling worn down by symptoms like apathy or mood changes. You can do this during a visit or separately by phone, electronic message or a quick word with the medical assistant. Ask about social workers or patient advocates, too, who can speak to the care team on your behalf. Even the advocate needs an advocate, sometimes. For more, turn to Pillar 2: Ask for What You Need.
66
Table of Contents