Caregiving | 10 Lessons in Advocacy and Resilience

Sitting outside the hospital while her 3-hour surgery turned into 13 hours with complications.

Nothing could prepare me for what came next and the years to follow.

My mom’s first time in an ambulance was August 23, 2019. One day, while I was visiting from Oakland, my mom asked me to drive her to the emergency room in Pasadena. The doctor tried to dismiss her pain, and I asked them to run the appropriate tests. My mom’s hemoglobin was low. He said he was surprised she hadn’t passed out yet. The doctor in the emergency room in Pasadena told me to drive her to the emergency room in Los Angeles so she could get the extensive medical support needed. I said, if something happens to her en route, wouldn’t it be best for her to be in an ambulance with medical attention? They agreed.

Nurses and doctors were initially dismissive of my advocacy. I ended up fighting with her doctors to hold them accountable and fought my mom to hold herself accountable for her role in her own care.

Today, family caregivers represent over one in five Americans. That number continues to grow as the aging population increases and more people are diagnosed with debilitating disorders that require daily care. I learned a lot along the way. The 10 lessons I learned:

1. Be Present
2. Research Doctors
3. Document Everything
4. Advocate for Adequate Care
5. Identify Resources for Their Care
6. Identify Resources for Your Care
7. Be Ready to Be a Nurse
8. Visit Skilled Nursing Facilities
9. Appointment at a Mortuary
10. Check-in on Yourself

1. Be Present

Physically and mentally, I needed to be present. Doctors and nurses needed to see me. I quickly learned that I couldn’t check out when I was at the hospital. I had to be present with the doctors and present with my mom. I felt like I was playing a mother role between doctors and patient. Making sure I held myself accountable to both parties. I checked in with the nurses and doctors often. I was at the hospital every day.

2. Research Doctors

I did a Google search on one of the doctors in preparation for my mom’s latest surgery. Not much came up when I searched for the doctor’s first and last name. However, when googling the doctor’s full legal name, I identified a wrongful death case. I drafted the following email for my mom to send to the caseworker:

I am requesting a switch in surgeons, considering the attached information about this surgeon who is scheduled to operate [inserted link] on me next week. I am no longer comfortable with Dr. X operating on such a delicate and urgent procedure. When is the soonest I can have the surgery with another surgeon?

3. Document Everything

I started a Google document on my phone on August 23, 2019. I continue to update it today. It is currently 70 pages.

4. Advocate for Adequate Care

My mom used to shut down when meeting with the doctors. I would ask her questions following her appointments that she couldn’t answer. I started to attend her doctor appointments when I could. I would advocate ensuring all teams of doctors are consulting each other. Separately, I met with the hospital caseworker, social worker, mediator, and doctors from different departments. The following day, I met with everyone together in my mom’s room for a mediator meeting at 8 am for an hour. At the end of the meeting, the mediator, caseworker, and social worker all thanked me for advocating for my mom. One of the doctor teams said they had no idea discharge was being considered until I organized the mediator meeting.

After the meeting, the social worker returned to my mother’s room and said, “I see how hard you are advocating for your mom. I did the same for my mom. She had a different treatment and passed. I don’t usually cross the personal and professional line, but I see so much of myself in you.” She was the only woman of color on the team of advocates.

Later, I remember my mom getting mad at me for being stern with everyone in the room and telling me to stop. I didn’t. I haven’t. And guess what? That’s the same meeting where we got hospital equipment, fees waived, teams for home care, answers, and accountability where necessary.

One of the doctors called me to say he was checking on my mom. He said what I shared with him was not handled right, with discharge at 10 pm and leaving without adequate supplies. Even though everything felt hard, I was validated that it was making a difference.

5. Identify Resources for Their Care

a. Medical Financial Assistance (MFA) — Once she was admitted to the emergency room, we were asked if we wanted to apply for Medical Financial Assistance (MFA). We immediately applied. It took months to confirm whether she qualified. She qualified after I submitted a rebuttal.

b. Case Manager—I didn’t have a great experience in this department. She was constantly being rushed out of the hospital prematurely without adequate resources made available immediately upon release. I had to request a new case manager for better support, which was honored.

6. Identify Resources for Yourself

Medical malpractice victims and health problems like cancer or heart disease, and mental health problems like substance use disorder or post-traumatic stress disorder (PTSD) have an emotional side. The same applies to life events, like being a parent or caring for someone with a chronic illness. Your life changes. Identifying a support group may be helpful.

Here is a list of caregiver support groups.

Short-term plan- When figuring out how to balance work, I learned LinkedIn has a unique company leave policy in the U.S. called Family First. Under Family First, you are granted a job-protected leave of absence for Maternity, Parental, Medical, and Family Care leaves even if you have not yet satisfied the length of service required under federal and state leave laws such as the Family and Medical Leave Act (FMLA) and California Family Rights Act (CFRA). The Family and Medical Leave Act (FMLA) and the California Family Rights Act (CFRA) provide 12 weeks of leave to employees who (1) have been employed with LinkedIn for at least 12 months and (2) have worked at least 1,250 hours during the 12 months preceding the start date of the leave. If you qualify for FMLA or CFRA leave, your Family First leave will run concurrently with those entitlements. I qualified. She had multiple major surgeries. I took paid and unpaid medical leave.

Long-term plan- I was flying back and forth between LA and the Bay and lived with a friend for a month. I requested to work remotely, and I got approved for January 2020, when they informed me my pay would be adjusted. In March 2020, the COVID-19 pandemic took over the world. The Los Angeles Mayor issued a “Stay at Home” order.

7. Be Ready to Be a Nurse

A nurse showed me what to do, what to track, and what to pay attention to.

8. Visit Skilled Nursing Facilities

I scheduled site visits at skilled nursing facilities in-network and out-of-network but affiliated with the hospital in Los Angeles. She was then approved and released to the one location that looked liveable.

While she was in the nursing facility in Los Angeles, I was back at work in the Bay. The doctor asked to have a “family meeting.” The call included the doctor, the student worker, the hospital case manager, and the skilled nursing facility case manager to get everyone on the same page.

9. Appointment at a Mortuary

I wanted to know what questions I needed to be mindful of and/or get answers to.

10. Check in on Yourself

To be a caregiver is a lonely place. Caring for a parent is a heavy place. Being the one who goes to doctor appointments, speaks to the doctors, deals with the medication, and is involved in their care firsthand forced me to get to a place of acceptance instead of denial. Although she does not have cancer, a lot of the approach and care she has received from doctors has been common in cancer patients.

If they are stubborn parents, there is an added layer of difficulty that impacts your relationship with them and your ability to help them. I’ve come to accept that they have to want to prioritize their health. My mom has watched me continue to advocate for her care since the first day she was admitted almost three years ago. I am finally advocating for my own health now, too.

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