Lessons Learned from a Doctor Who Became a Caregiver

Dr. Gerard Mullin, a gastroenterologist at Johns Hopkins Hospital in Baltimore, served as the primary caregiver at different times for both of his parents. His father had a complication after surgery for a minor procedure and Dr. Mullin cared for him for nine months before he died. His mother never fully recovered after a complication from heart surgery, and Dr. Mullin cared for her for five years. As a caregiver, Dr. Mullin was most surprised at the miscommunication and confusion he saw among providers and hospital staff. He observed all kinds of mistakes and felt like communication was poor among hospital staff and patients and their families in the hospital. As a caregiver, Dr. Mullin found that his own health suffered. “Caregivers do not realize what is happening to them physically, mentally or emotionally,” he says. “I think caregiver burnout is a silent killer.”

What We Can Learn from a Caregiver Who is Also a Doctor

In being caregivers themselves, Dr. Mullin and other doctors who are both medical professionals and caregivers have learned things they hope to share with others in caregiving roles. Their lessons can help others in caregiver roles to better communicate with doctors and manage their loved ones’ medical care. At the same time, their lessons emphasize how caregivers must make the time to care for themselves, while caring for their loved ones. These are some tips from those in the medical field who are currently or have been caregivers for loved ones:

Managing often complicated, confusing treatments can be overwhelming for anyone, and no one is perfect at it. Even doctors have struggled when it’s their turn to take on this role.
Get legal authority to coordinate care: Make sure your loved ones have advance directives in place. A power of attorney (POA) for health care gives you or someone else on the caregiving team the legal right to talk with practitioners, manage your family member’s health care, and make decisions if the person is unable to do so. In addition, you need a (HIPAA Health Insurance Portability & Accountability Act) release form, which indicates who is authorized to receive a patient’s medical information. This will help even if you don’t have medical POA. In the absence of these documents, the health care team may still talk with you about medical matters if it’s clear that you are the caregiver or next of kin, but it’s at their discretion, not yours or your loved one’s.
Clarify roles: If you’re lucky, you are not the only person working with the health care team. Make sure everyone involved is clear about his or her role, to avoid duplication and frustration. It’s not helpful to have multiple people calling the doctor about an issue at the same time, but often one family member needs to be able to pick up where another left off.  
Keep track of tests, diagnoses, treatments and plans, and share that information with each of your loved one’s physicians. Currently, many health care offices (such as those in the INOVA system who use My Chart) have online portals on which you can set up a profile for yourself or a family member, exchange messages, get doctors’ notes and see lab and other test results. Make sure medication lists are up to date and use INOVA’s My Chart or similar systems, if available, to communicate with medical professionals.
Communication is crucial. Many patients are “adrift in the sea of health care, with no one to advocate for them.” According to Dr. Mullin, “(r)esearch your loved one’s illness, take notes on what providers say and listen to your instincts. Even if you don’t have a medical background, your knowledge and observations are valuable. If they are getting facts wrong or something seems off, ask to talk to the attending doctor,” he says. “Things fall through the cracks, and one bad error can have a domino effect.”
Be prepared in advance. If you make their job easier and faster, medical professionals will be much more responsive to you. For example, before seeing a practitioner for the first time, bring your notes and prepare written questions in a format that will allow you to quickly jot down responses. Ensure that your family member is ready for appointments, and allow plenty of time to get to them, including time to use the restroom and a buffer for the unexpected.
Do not leave your loved one alone in the hospital. Patients, especially older ones, often do not absorb what doctors say, and it’s easy for things to get lost in the shuffle. If possible, stay with them in the hospital, especially during the day when doctors make their rounds. “You want to be there to ask questions and provide information,” Dr. Mullin says. Currently, INOVA hospitals allow one visitor to come during visiting hours, but that could change based on the status of the coronavirus pandemic.
Document everything. You never know what might be important someday. Take notes at every appointment and procedure, and also record when tests take place, as well as the results.  Share your notes with different practitioners (some of which may not have access to an online system such as My Chart). This is especially critical when loved ones are in the hospital, because there is so much going on and things can change quickly.
Follow up: If there’s an issue that needs to be addressed and office staff are not responsive, be sure to follow up. With so many patients to care for, requests may get lost in the shuffle. A pleasant phone call can help move your request to the top of the list. And don’t be shy about calling often if the matter is urgent.
Establish mutual respect. The health care team works hard, sometimes under difficult circumstances. Establish positive relationships with doctors, nurses, assistants, technicians, therapists, social workers, support staff and others, and be respectful of their skills and time. And when any of them does a good job, be sure to express your gratitude. At the same time, gain their respect. Model the kind of interaction you’d like to have from them, including being pleasant and patient. Ask clear and concise questions to avoid stretching out appointments, but be firm about getting them answered.

Managing health care for others can be unpredictable and emotionally draining. Try your best to go with the flow, gather information, and keep communication open. Never hesitate to ask the heath care team for help.  

To avoid caregiver burnout, talk about expectations with loved ones. Be open and honest with loved ones about setting aside time to take care of your own needs. Seek out help. It’s often worth the sacrifice and cost to pay a professional caregiver to relieve you sometimes. You can also tap community resources such as adult day programs, nonprofits, and social service agencies.

As a result of his experiences caring for his parents, Dr. Mullin “makes even more certain that family caregivers fully understand the plan of care, outcomes of tests and the treatments required.” According to Dr. Mullin, “I know now that it’s a team effort, and the family and caregivers are critical members of the team. We are treating not only the person’s biological condition, but the person as a whole — and that means engaging their support team.”

When a Loved One Needs More Care Than You Can Provide

Are you a caregiver for a loved one who lives at home? When you or your loved one cannot live independently and are showing signs that living alone is a strain, it may be time to consider other alternatives.

Whether the outcome is in-home care, assisted living, or nursing home care in the future, it is always wise to plan ahead. Life Care Planning and Medicaid Asset Protection is the process of protecting assets from having to be spent down in connection with receiving nursing home level care at home, or going into assisted living or nursing home care, while helping ensure that you and your loved ones get the best possible care and maintain the highest possible quality of life, whether at home, in an assisted living facility, or in a nursing home. Please contact us to make an appointment for an initial consultation:

Elder Care Attorney Fairfax: 703-691-1888
Elder Care Attorney Fredericksburg: 540-479-1435
Elder Care Attorney Rockville: 301-519-8041
Elder Care Attorney DC: 202-587-2797

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About Evan H Farr, CELA, CAP

Evan H. Farr is a 4-time Best-Selling author in the field of Elder Law and Estate Planning. In addition to being one of approximately 500 Certified Elder Law Attorneys in the Country, Evan is one of approximately 100 members of the Council of Advanced Practitioners of the National Academy of Elder Law Attorneys and is a Charter Member of the Academy of Special Needs Planners.