How to Be an Effective Advocate for Aging Parents

As family caregivers, we play many roles: scheduler, money manager, house cleaner, health aide, nurse, navigator, nurturer and more. Perhaps the most important role is advocate, as we ensure the best possible care for our loved ones when they are vulnerable.

That includes understanding and respecting their goals and wishes for their care and quality of life, and ensuring their wishes are carried out. It means helping them manage financial and legal matters. And it means ensuring they receive appropriate, high-quality services and treatments when needed. We are their voices when they are unable to advocate for themselves.

If the thought of being an advocate for others seems overwhelming, relax. You probably already have the skills to be effective; you just need to develop and apply them in new ways. Here are the six attributes I think are most important:

1. Relationship-building abilities

Getting things done often depends heavily on our relationships with the people involved. When advocating for our loved ones, our job is not to be best friends with the health care providers and others we interact with as caregivers. But having respectful, pleasant relationships can sometimes help you get the response you need.

How to be a better relationship builder:

• Be calm, confident and assertive without being aggressive.
• Create allies, not adversaries. Approach with a collaborative attitude — “we’re all in this together,” rather than “you are my enemy.”
• Build empathy. Validate others’ limitations and concerns while sharing your pertinent details, perspectives and requests.
• Show appreciation. Thank people for a job well done.
• Apologize. Don’t hesitate to say “I’m sorry” when it’s appropriate.
• Establish a personal connection. This is best done right off the bat, before a need to advocate arises.

2. Strong observational skills

Caregivers are often too busy or exhausted to notice small changes, but the slightest shift in our loved ones’ abilities, health, moods, safety needs or desires may indicate a much larger medical or mental health issue. Catching those changes early can make all the difference in alleviating the problem.

Equally crucial is keeping a close eye on the services they receive and adjusting any subpar care. Whenever possible, we must try to accompany loved ones to the hospital and visit them in their homes or wherever they reside, such as an assisted living or long-term care facility.

How to be more observant:

• Practice noticing the subtle details. We are often so busy that we move through life quickly. Try to become more observant of the emotions of people around you, the clothing they are wearing, and changes in your home environment.​
• Listen carefully. Whether you are interacting with coworkers, a clerk in a store, your family or those you care for, taking time to really listen can help you be more in tune with changes.
• Develop observational skills. Mindfulness and meditation can help you become more aware and fully present in the current moment. Practice in a class, through yoga instruction or with a mindfulness app.
• Get adequate sleep. The key to a clear and focused mind is prioritizing your rest.
• Document your observations. Keeping notes about your loved ones, including dates and details, can help you track changes. If in-person interactions are limited, enlist staff or neighbors who see them regularly to report back to you, preferably in writing.
• Use technology. Phone calls help, but video calls via apps such as Zoom, Skype or FaceTime can tell you more about subtle changes in a loved one’s physical appearance and abilities. Try a remote monitoring system to track their movements at home and detect changes in routine, such as staying in bed longer.

3. Ability to organize despite constant change

It can be tough to stay on top of a caregiving plan, with its many moving parts. As an advocate, you’ll need to manage your loved one’s caregiving team, make task lists and organize the mounds of paperwork associated with health, legal and financial matters. You'll want to make sure you can easily access all legal documents (such as powers of attorney for finances and health care) when you need them.

How to get better at organization:

• Sign up for a class. Consider taking an organizing course to improve your skills.
• Get outside help. When I was caring for my parents and my sister, moving and starting a new job all at once, I consulted a professional to develop an organizational plan for the paperwork, tasks and physical setup of my work area. You can make this option more affordable by implementing the plan yourself, as I did, or by tapping friends and family for their systems and suggestions.
• Create a to-go folder. Keep this by the door, so you can easily grab it when headed to a doctor appointment or hospital. Include medical history, a current medication list, insurance information and a list of key health care professionals.
• Turn to tech. There are numerous apps that centralize and organize medical information, caregiving tasks and appointments, as well as communication with the care team.
• Make digital copies of documents. Make PDFs or take photos of medication lists, medical history, powers of attorney and living wills, so you can access them on the go from your phone or tablet.

4. Excellent communication skills

This is key for building relationships with those who help care for our loved ones, from family members to lawyers, doctors and more. Most family caregivers are not experts on medical, legal or financial matters, which can make some topics challenging to discuss.

Caregiving can be a very emotional experience, and emotions can affect our communication styles and skills.

How to communicate more effectively:

• Be respectful. Try to set your feelings aside when you are advocating for a loved one. Remember that to communicate effectively, listening is just as important as speaking. It’s critical that we ensure our message has been received and give feedback to those we speak with so they are sure their message has come across correctly as well.
• Show up prepared. Do your homework before meetings with lawyers, medical professionals and other providers, and have notes and questions ready. Be clear, concise and get to the point. Try to prioritize your top three questions.
• Find the key people. To ease communication with busy professionals, find out who in their office handles matters such as appointments and billing, and build relationships with them. Get to know how they prefer to communicate (phone, email, text, patient portal, etc.) and the best time of day to reach them. Always express appreciation.

5. Curiosity and a questioning mind

Dad, a former professor, used to have a sign in his office that read, “Question everything.” As I advocated for him for 12 years while he lived with Alzheimer’s, I often thought of that message. My family’s doctors and service providers could attest that I ask plenty of questions! Remember — there is always more to learn, and there is often another way to get things done.

Don’t be satisfied with feeling in the dark about your loved ones’ situation. As a caregiver, it’s part of your job to gather information — this is not the time to be shy. It never hurts to ask, and many times you’ll miss something if you don’t. All too often, busy professionals will not offer critical information; they need to be asked.

How to feel comfortable asking questions:

• Learn as much as possible. Dig in to your loved one’s health conditions, finances and legal affairs, so you can identify concerns and ask pertinent questions.
• Be gracious. Always be polite and appreciative, regardless of whom you ask or their position in the organization.
• Consider alternate approaches. If you hit a roadblock in arranging care or services, try to think of other paths toward your goal. Sometimes, getting questions answered is all about asking the right person, be it a doctor, lawyer, accountant or member of their staff.

6. Tenacity

Someone said my role when caring for my parents was “chief bulldog.” I guess that’s true.

As their advocate, I had their best interests at heart, and I took that job seriously. Facing a fragmented and frustrating health care system and trying to do more with less money can be discouraging. Being tenacious means being determined and not giving up easily. I did my best, and I never gave up until I found the best possible solution.

Honestly, I didn’t take no for an answer when it came to my family; I could almost always find a way to get them what they needed.

How to be more tenacious:

• Be clear about goals. And believe there are solutions.
• Focus on the end result. After you’ve figured out what you want, be flexible and adaptable about how to get there.
• Surround yourself with supporters. Find encouraging people who will pick you up and cheer you on when you feel like giving up.
• Follow other caregivers’ stories. You’ll hear about the triumphs as well as the challenges.
• Remember why you are a caregiver. You may be driven by love, a sense of responsibility or duty, or a desire to do the “right” thing in your view. Whatever your reason is, when you feel like giving up, allow it to motivate you and propel you forward.
• Have a positive mindset. This is crucial. When caregiving knocks you down, get back up. Resilience is success!

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