Q: I know I need to be an advocate for my mother who is having medical problems, but I am not sure what that means. How can I be the best advocate for her?
A: I commend you for stepping up to advocate for your mother and her medical needs. In recent years I have needed to assume this role for some loved ones as well, and I can share some of what has helped me.
An advocate helps a loved one communicate with their healthcare providers, so they get the information they need to make decisions about their health care. Advocates may also help their loved one set up appointments for doctor visits and medical tests, and get financial, legal, and social support.
Anyone who has stepped into this role probably knows it is not always an easy role and comes with learning to navigate various systems to get the care you need.
I think the biggest thing I have learned is that advocacy requires inner strength and confidence. You and your mother deserve quality care and to be treated with dignity and respect. You can approach every situation with this assumption and expect others to listen to you.
Often, I hear from people that they feel uncomfortable speaking up or asking too much from medical professionals. There is a sense that they are the “experts” and whatever they say is the final answer. My father-in-law always says “I do what they tell me because they have ‘doctor’ in front of their name and I don’t.”
We want to respect and value professionals for their role and knowledge, while also recognizing that they are not the ones with your loved one all day and night. You can also be an “expert” in your mother’s needs in a different way. By relaying your concerns to the healthcare professionals, you are also helping them get a full picture of the health issues. It is important that you feel valued for your role, as well, and confident enough to know that your input, observations, and needs are important and necessary for your mother’s care.
Include your mom as much as she is able and interested in being involved. Understand your role as well. Know if your mother has listed you as her agent on her advanced healthcare directive, or what role she wants you to play in her healthcare. If she has not created any legal documents yet, discuss with her what her wishes are for her future medical care and who she would like to designate as her agent if she becomes unable to make decisions for herself.
Being an advocate means speaking up for your mothers’ best interests. Attend appointments with her and come prepared with questions. Start a notebook where you log all appointments and write down your questions and answers to refer back to.
Keep an updated list of your mother’s medications, major health history, allergies and insurance information, and bring this with you to every appointment.
You always want to be respectful and kind to those you are working with. However, that does not mean you cannot also be clear and assertive about what you need from them. Often healthcare professionals have limited time available so by preparing ahead of time you can be sure to get to the most important questions first.
However, if you are not getting answers that you need speak up and ask for clarification. If you feel rushed, ask if there is someone else available to take the time to explain or if they can provide a handout or website to refer to.
Make sure to get support for yourself as well. These can be stressful situations and you want to provide care and kindness to yourself as well as to your mother. Allow yourself to take many deep breaths and pauses, and to know that you are doing the best you can for your mother’s care.
Martha Shapiro can be reached at Senior Concerns at 805-497-0189 or by email at mshapiro@seniorconcerns.org.
