My mom has always been one to look out for others first. She makes sure that the little kids have plenty of things to do at family gatherings. Since I’m a vegetarian, she acts as my advocate in restaurants—without being asked—making sure I’ll have enough options. It’s not in her nature to focus her attention unconditionally on herself. Just as my mom is a champion for our happiness and well-being, she needs that same kind of faithful advocacy for her own wellness—especially within the medical field where professionals are often making decisions for patients, but perhaps not with the patient’s holistic interests at heart.
Just a few weeks ago, my mother found herself alone in the grocery store, short of breath and struggling to stand through the overwhelming pain in her chest. Without anywhere to sit, she let herself collapse against a wall for support until she could regain her breath and strength enough to return to the car where my father waited. She finally gave in to his urging and called the doctor, who told her to go the hospital immediately. In the weeks that followed, I learned a valuable lesson on how to talk to my aging parent’s doctor—and the role of being a healthcare advocate for an older adult.
Short-Sighted Medical Decisions Lead to Complications
As serious as her sporadic irregular heart rhythm turned out to be, the good news was that it could easily be corrected with a pacemaker, which they inserted just a couple days later. She told me over the phone, from 2,500 miles away, that apart from exhaustion and some expected pain in her chest, she felt surprisingly well in the days right after surgery.
Upon discharge, a physician she hadn’t met before handed her prescriptions for two new medications: one for her cholesterol and one for her blood pressure. My mom protested that her cholesterol checked out perfectly in the latest blood test and that she’s already on medication for high blood pressure. The doctor insisted that these are standard medications after this type of surgery—and that she didn’t need to verify with her primary care physician before adding them to her regimen. My mom felt that this doctor must not have looked closely enough at her history before deciding on this treatment plan, but—like so many older adults who feel overwhelmed by doctors’ specialized knowledge and authority—she agreed, seemingly without any other option for dialogue.
As soon as she started taking the new medications, my mom developed horrible aches throughout her body. Her primary doctor directed her to stop taking them immediately and validated that she should never have been prescribed either of them in the first place, considering her history. My mom was right in her initial suspicions about the new prescription drugs but, without an advocate to support her through her health crisis, my mom didn’t feel like she had a voice.
Why Caregivers Must Act as Advocates
The responsibility of advocating for older adults in the complicated sphere of medicine often falls on their adult children, who know their parent’s history and present needs better than most. These family caregivers are in a position to see the whole picture, everything from dietary preferences and habits to the subtle ways in which they respond to new medications. You’re not just acting as an extension of your loved one’s interests; you also serve as an extended lens for medical professionals into your parent’s life.
By offering busy doctors this uniquely holistic view, you can go a long way to bridge the gap that prevents more personal attention and customized care for your aging parent. At times, you may find yourself having to resuscitate your own confidence and stand up to authority figures in the medical field. But remember that there is a lot more to lose by not keeping that insurance agent on the line, or insisting that the doctor explore alternative treatment options with you, than there is to lose by wasting someone’s time with excessive questioning.
Empower Yourself to Be an Advocate
Before doctor appointments, hospital admissions, or interacting with insurance representatives, take some time to collect your own information and to anticipate questions you may want to ask or may have to answer. Remind yourself of the incredible difference you are able to make by bringing heart and emotion into an environment more often run by logic and patterns of care.
- Enlist a compassionate care team: Be willing to consider whether your aging loved one has the best possible care team, who are seeing your parent as more than just a collection of diagnoses and directives. You are in a position to not only ensure that they receive sufficient medical attention, but also to help lay a path for their holistic well-being and graceful aging. Don’t ever feel as if you are stuck with a single opinion—or a single practitioner.
- Stay on top of medical recordkeeping: Take the time to gather and organize all of your parent’s medical information, including history of conditions, treatments, and medications; current medications and dosages; insurance documentation; and contact information for any healthcare providers you might need to reach out to. There are now countless technological platforms that can make this process easy to complete and easy to bring along with you to appointments, so you’re never unprepared.
- Keep a journal of your daily observations: A record of changes you notice in your loved one, whether positive or negative or no change at all, can be a compelling tool for doctors. Take the time before appointments to gather your thoughts, revisit your recent journal entries, clue into relevant details, and flag those pages, so you can deliver this information efficiently to a care provider without missing any details that could have an impact on their course of care.
- Don’t be afraid to question medical professionals: It’s certainly possible that the doctor’s word is the only word in some cases. But, for the sake of optimism and due diligence, always consider your time with doctors as a conversation of possibilities. Be willing to look and think outside the box because the ideal course of treatment may be as unique as your aging parent is. If you do your research and find treatment options that might apply to your loved one’s condition but the doctor hasn’t yet brought it up, don’t be shy about starting a conversation.
- Listen to your instincts and intuition: If something you hear during an appointment doesn’t sit right with you, don’t hesitate to ask questions. In fact, there are some questions you should get in the habit of asking regardless of a doctor’s recommendation:
- What will be the benefit of this treatment for the condition in question?
- What are the possible side effects and impact on daily life?
- What are the alternatives if we chose not to pursue this course of care?
If, after the appointment, you’re still feeling uncertain, explore why that might be. You may come to find that your reaction to the doctor’s recommendation comes from your own discomfort around what your aging parent is going through and fears about the unavoidable risks of treatment. Or you may come to find that your instinct was leading you in the right direction (as my mom’s was) and that there is another, better option out there to suit your loved one’s particular needs.
When an aging parent’s physical or mental health restricts their voice and they are unable to fortify their own needs, it is an incredible gift to rely on a family member who can see them from the inside out. If you are someone who cares for an aging parent and promotes their well-being where it matters, they are so lucky to have you. It is not an easy or straightforward responsibility. It is even harder to shut off your emotional experience while still advancing your loved one’s authentic, comprehensive interests. Instead, learn to mobilize your emotions and intuition. They may be your greatest asset along this journey.
At Institute on Aging, we are committed, every day, to advocating for aging adults’ best possible care with their whole and unique person in mind. For more tips and resources to help in your caregiving journey, get in touch with us today.