How to be a healthcare advocate

It was September 2012. My 83-year-old father, David Miller, a survivor of prostate, esophageal, and rectal cancer, had been told by his geriatrician the previous May that he was not a suitable candidate for the procedure he’d needed to repair a diseased valve in his heart. By June of that year, he had been given a prognosis of six months.

When we left a routine ophthalmology appointment together, I helped him with his jacket, and he looked at me appraisingly. “Dr. Seidenberg says you’re an advocate,” he told me. “What?” I asked. “Dr. Seidenberg says you’re an advocate,” he repeated. “I think I’m just a daughter who loves her father,” I said. “Can’t you be both?” he asked.

I’d never thought about it in those terms before, but I did then. “I guess I can be,” I said. And it’s true. It is possible to be both. And I was.

Get The Jewish Standard Newsletter by email and never miss our top stories Free Sign Up

Soon my father was at home, in hospice, and well taken care of by my loving mother, a remarkably capable nurse and an insightful social worker.

I was startled when a friend used the same term to describe me that I’d first heard from my father.

“You should consider going into patient advocacy as a volunteer or a professional,” she said. “You have a keen ability to process medical information, communicate clearly with healthcare professionals, understand the nuances of medical and long-term care insurance, and know how to plan and prepare for medical appointments, tests, and surgical procedures. You’re a natural.”

Then she forwarded me a link to the National Patient Advocacy Foundation (npaf.org). I filed it away, too busy to explore the possibility.

I had three kids in high school, I had to oversee and manage their many activities, and I had to stay on top of my parents’ and in-laws’ medical appointments. I couldn’t imagine taking on anything else. But was medical advocacy something to take on, or something I just knew how to do? And perhaps more importantly, were there advantages to being in the know?

I was naturally inclined to attend every single one of my dad’s appointments related to treating his cancers; I always was the point person when communicating with his treatment team. I regularly accompanied my mother-in-law and father-in-law to all their appointments and had offered to take on the task of communicating with their mail order pharmacy — ordering, organizing, and dispensing each of their daily medications.

When we started to hear warnings about Hurricane Sandy, I knew that my dad’s hospice nurse and I had to make plans. We had to be sure that he’d be in a safe place, where he would have access to an emergency generator so he could use his oxygen. She and I discussed the fact that he’d never used his Medicare respite benefit, which would cover his stay in an inpatient hospice facility for a week. We got him admitted the day before Sandy hit, while my husband, my mother, and I hunkered down in our basement in Wyckoff with our three boys. When the roads were passable and we could get to the hospice in Hackensack, my mother and I packed up and slept at Dad’s bedside for a week.

My father’s downward turn happened on the schedule that his geriatrician had predicted. He died there, at the hospice facility, just 10 minutes after my mother, at my encouragement, had left his bedside to drive to Glen Rock to get her hair done, as she always had, on Fridays. With a nod from his nurse just seconds before he’d stopped breathing, I let Dad know it was okay to leave us. I assured him that we’d all take care of Mom.

My work experience and intuitive sense were a conduit to communicating honestly with the clinical staff at the hospice facility throughout that week of my dad’s stay— understanding what was in the comfort care kit, knowing what signs to look for as his body began to fail him, ready to explain what was happening to my mother, to my brother, to my kids. I don’t know how I knew just what we’d say to those we needed to contact about our tragic loss. I just knew.

Brothers Jay and Marc Breslow flank their father, Paul.

I don’t have a clinical degree. I have an undergraduate degree in counseling with an emphasis in women’s health. I worked in clinical settings and managed clinical staff in family planning, preventive medicine and wellness. I wrote training and operations manuals for CIGNA Health Insurance Plan and spoke with clinicians and independent practice associations about our benefits and physician reimbursement system. I oversaw the development of multimedia continuing medical education programs and created medical editorial boards of subject matter experts. For a time, I worked in an OB/GYN’s office. For a time, I worked for a medical advertising agency. I am not a nurse or a doctor or a scientist or a pharmacist.

But somehow, my relevant and adjacent experience fueled my ability to learn, read, study, understand, and make sense of the United States healthcare system. I know how to communicate with doctors and their staff. I know how to be patient and unobtrusive and I know when to be impatient and persistent in supporting those who require medical intervention. I know how to weigh options and help people make important medical decisions. I am empathic, sensitive, and devoted to friends and family. I am a thoughtful listener. Perhaps that’s my greatest skill.

My deep dive into medical advocacy began with having children. All my three children were preterm, and two of them presented with challenging medical conditions.

I learned more lessons than I could have imagined about healthcare during that time. My brain became a clearinghouse of medical terminology that I had not known before I had to know it. I talked about their treatment and intervention with a confidence and authority I could not have had before my first pregnancy.

I also learned that my husband and I couldn’t do it all alone. We reached out for help. What we needed then was an excellent babysitter — and we found one.

Eight months after my father died, my mother, Florence Miller, was getting ready to go to a movie with friends when she collapsed from a massive stroke. By the time I got the call and drove 100 mph to her home in Fair Lawn, she was being carried into an ambulance on a stretcher. It was too late for the neurosurgeon to intervene. The hemorrhagic stroke left her with minimal brain function. After much support from healthcare professionals, extensive research into her limited options for living a remotely functional life, and the insight from close, knowledgeable friends, my brother and I decided to remove her from life support. It took years to manage my grief.

When our kids were in high school, immersed in activities and sports and focused on their college prospects, I turned my attention to my in-laws, Gloria and Paul, and their medical and home care needs. At regular appointments with the internist, cardiologist, podiatrist, audiologist, and dermatologist, I noticed a decline in my father-in-law’s ability to communicate about his health or express any concerns. I found myself talking for him. He was clearly secure in my involvement and comfortable with my taking the lead. He trusted me as if I were his daughter.

When I talked about him with his clinicians, I sensed they saw that he was changing. They tended to look to me for answers about his medication, weight, or dietary changes, and shifts in his mental status. He rapidly was becoming less engaged in general conversation, asking fewer questions about the kids and the rest of the family, and offering little in response to my questions about him. He was often at a loss for words, requiring his wife to “fill in the blanks,” or remind him about his activities, a TV show, or movie they went to see, where he went or what he ate for lunch, names and dates. He was quiet and disinterested in small talk. While he’d always had a quiet demeanor, I felt strongly that something was missing in his ability to communicate with confidence. I was also acutely aware that, like me, my father-in-law was missing my dad, his best friend. They’d been two peas in a pod and I knew he felt lost without him.

As my father-in-law’s cognitive impairment became more and more obvious, what concerned me more was his decreased interest in socializing with friends. It seemed prudent to schedule a consultation with a neurologist to have some baseline testing done. After a discussion with my husband, Jay, and his brother, Marc, who lived in Boston, we made an appointment with a specialist my father had seen and liked very much.

I knew from previous meetings that Dr. Daniel Van Engel of Neurology Associates of Ridgewood had a wonderful rapport with his elderly patients. He also had a wonderful sense of humor, which my father-in-law appreciated. An MRI scan revealed age-related changes in my father-in-law’s brain and the verbal Montreal Cognitive Assessment memory testing and computerized cognitive testing confirmed he was suffering from moderate dementia. He was prescribed medications that could not cure this condition but might slow its progression.

Around the time of my father-in-law’s decline, my mother-in-law fell; as a result, she needed in-home physical therapy. Her physician also recommended short-term support with bathing, walking, and home chores. My in-laws were not used to having strangers in their home, so they resisted. But a friend who’d recently had major back surgery recommended a lovely woman who was available to support them for six hours a week. We presented that idea to them as a trial.

Fortunately, they agreed to a temporary schedule, subject to change at any time should they find it was an intrusion of their privacy. Since both of them had changing medical needs, I checked to see if their long-term care coverage was adequate for home care benefits to supplement their Medicare and secondary supplemental insurance. Since it looked to be more than adequate, it seemed natural to access the benefits offered by a policy they’d been paying into for most of their adult lives. After tediously completing a claim for each of them, a nurse came to the home for an assessment, and they both were approved. I have since learned with other family members, that although this process went so smoothly for my in-laws, it does not always do so.

A pivotal point in my father-in-law’s loss of independence was our insistence that he no longer drive. In an effort to make the decision as objective as possible, we suggested he be tested by a DMV trained instructor who would assess his score on a written test before another test in a behind-the-wheel simulation. Since he’d failed the written portion, he never moved on to the second phase. It was a painful reality for him to accept and catalyzed a shift in our involvement in caring for him.

The challenge for me in supporting and making recommendations to my in-laws was that they were not my parents. On the one hand, I could be more objective. But on the other hand, because they weren’t my mom and dad, I might not know them well enough to grasp just what was best for them. I might not have the right instinct about what they’d want as they aged. Trusting me to navigate the process, my husband, Jay, and his brother, Marc, encouraged me to take the lead.

Jay and Marc both were deeply and emotionally engaged in their parents’ care. They left the details to me because I had the experience that equipped me for it, but their love and care was always there and always available to me whenever I needed it.

Because I had other responsibilities — to my husband, family, job, and friends — I sought the support, guidance, and recommendations of a social worker specializing in elder care at Generations Counseling and Care Management in Rochelle Park.

Our partnership with social worker Stacy Maines began with telephone calls between Stacey and me, Stacey and my husband, and Stacey and my brother-in-law, each of us providing her with our perspectives on my in-laws’ needs. These confidential calls also gave each of us an opportunity to discuss our own personal needs and how we saw our roles in the caregiving process.

These calls evolved into a collaborative relationship with Stacey. She was a quick reader of people and was able to put a care plan in place for my father-in-law and my mother-in-law, ensuring above all else that she met them where they were. While offering different approaches and options, she remained open to our thoughts and opinions, respecting our family dynamic and the role each of us played in caring for two people who were proud to have raised two children, retired from successful careers, had a circle of close friends, and up until recently had lived full and independent lives. Understanding this, she took our suggestions as seriously as we took hers.

Concerned about my father-in-law’s rapid cognitive decline, fluctuations in sleep patterns, increasingly finicky eating habits, and a growing unsteadiness in the shower, I felt the need to restrict his climbing the stairs up to his office and down to the basement. He was not happy with these limitations and often ignored them. That began to create a wedge between us. Jay and Marc agreed that it wasn’t fair for me to be the bad guy, but because I was serving as his advocate, I was willing to accept the fallout, particularly when it came to his safety.

Though my in-laws had lived comfortably in their private home for 60 years, we agreed that it might be time for them to move somewhere where a team of professionals accustomed to catering to the needs of the elderly could work with them. Stacey gave us a list of assisted living facilities — all had memory care units — and Jay, Marc, and I toured them. Reluctantly, my in-laws joined us on the tours, making minimal efforts to eat the complimentary lunches, view the apartment spaces, and learn about the activities offered. Noting that my father-in-law had flown reconnaissance aircraft in WWII, every sales manager we met throughout that period assured him, with great enthusiasm, that “he could start an aviation club!” My in-laws would nod respectfully, but I knew what they were thinking: “I want to go home.”

Since some of their contemporaries from Fair Lawn already had moved to similar communities, my in-laws were somewhat open to the idea of looking at their facilities. But each time we returned from a tour, or suggested putting down a deposit, they focused on the comforts of their home, where everything was familiar, citing something minor that they thought was wrong with the facility. It was difficult to ignore how difficult a change of any kind would be for them, particularly at their age and stage.

During one of the most frank and honest conversations I’d ever had with them, I asked if they preferred to die at home. Without hesitation, they both said yes. I told them we would honor their wishes as long as they agreed to in-home care. They agreed to a daytime aide from a reputable agency Stacey referred to us. We began with six-hour shifts, which soon grew to 12.

Marc did his best to come in for important appointments, meetings with Stacey, and coordinated and attended all the assisted living community tours. It was always helpful to get his insight. I’ve often wondered if it was somewhat easier for him to be objective because he did not bear the burden of the day-to-day elder-care tasks and responsibilities that were growing with each passing month. His input was essential and we all worked well as a team.

But on December 5, 2018, just after midnight, everything changed.

As my brother-in-law’s healthcare proxy, I was awakened by a call from an emergency room physician at Mount Auburn Hospital in Cambridge, Mass., telling me that Marc had had a massive stroke. With my permission, he was to be transferred to Massachusetts General Hospital for immediate medical intervention.

As Jay and I quickly packed, I called my best friend to ask if she could take care of our dog. She agreed instantly, assuring us she was on her way, and we got on the road to Boston, stopping only for coffee and bathroom breaks. Taking calls from the neurosurgery staff for status updates as we drove, I wrote relevant clinical information on a Denny’s napkin, asking for uncertain predictions about the physical and cognitive deficits that were a possible outcome of Marc’s stroke.

When we finally arrived at his bedside, we were indescribably relieved to see him alive, surrounded by a team of specialists. On no sleep at all and fueled by caffeine, I recall being prepared to respond, support, and advocate for my brother-in-law, who was unmarried and lived with two roommates in a private two-family home. I knew I could recite most of his medical history, list the medications he took, and was able to piece together the rest using his personal computer, which held his medical files. Together, Jay, Marc’s boss, and I were able to guess his username and passcode.

I remained Marc’s primary advocate and point of contact when he was in the hospital, when he was transferred to the inpatient rehabilitation center where he received daily therapy, and throughout his stay there.

What was most challenging for me then was that not only did I have to manage my brother-in-law’s crisis, I had to help my in-laws. They were terrified for their son and still needed support, medication management, food delivery, and oversight. Managing their anxiety took sensitivity, understanding, and an endless amount of patience.

When my husband was back at work, also putting in countless hours to provide for our family and manage every aspect of my in-laws’ bills and finances, I found that driving back and forth from Boston to New Jersey to check on everyone became exhausting and indescribably stressful. Working with Stacey, we engaged another caregiver through the agency to work night shifts with my in-laws. It was essential that they were attended to 24/7, particularly with my brother-in-law’s situation so tenuous.

We quickly discovered, however, that paying two 12-hour-shift aides was very expensive, so we hired one live-in aide to care for them. It was the best decision we’ve ever made.

Before Marc was discharged from rehab, his social worker and case manager had some concerns about whether his home would be safe; there were stairs to climb, his two roommates worked full time, and it might be hard for him to use public transportation to and from outpatient rehab. After exploring a number of options, we suggested he make a short-term move to our home in Wyckoff, and I offered to drive him or arrange transport to outpatient speech, occupational, and physical therapy at the Kessler Institute for Rehabilitation in Saddle Brook.

It was light years easier to have my in-laws and my brother-in-law local. As an extremely active and fit 64-year-old, my brother-in-law made rapid progress. A few months later, he was cleared to return to Boston, settle back at home, and seek outpatient therapy to regain his strength.

By then, my in-laws’ aide, Shelly Carter, was doing very well; she knew just how to communicate with my father-in-law, who needed most of the care she provided. She also respected my mother-in-law’s role as head of household and was very open to collaborating with me. There will never be anyone like her. She was, and will always be, our angel.

Sadly, after a week’s stay in Valley Hospital with pneumonia, my father-in-law returned to his home a different man. Working closely with the hospital’s discharge planner, I ordered the home care equipment he needed while Shelly cooked him all of the comfort foods he requested. He settled into his hospital bed; unfortunately, he never got out of it. Within a week he’d stopped eating, drinking, taking his medication, talking, or connecting with us. Sensing he was unlikely to bounce back, on a call that included Jay, Marc, my mother-in-law, Stacey, and me we decided to engage hospice care. I recall feeling calm and capable in my ability to speak with the hospice nurse, sign my father-in-law’s Practitioner Orders for Life-Sustaining Treatment, and ask Shelly to store the pre-dosed syringes of comfort care medications provided for pain and anxiety.

Explaining everything in detail to my mother-in-law was painfully hard, but it was easier for me to do it than to assign the onerous task to her sons. While she was listening to me, I knew that she was hearing only what she wanted to hear. She’d had every expectation that he would come around, that he just needed to eat and to rest, and I allowed her to believe that.

My father-in-law died on our wedding anniversary, March 27, 2019, with his two sons, his wife of 60-plus years, his daughter-in-law, and his three precious grandsons at his bedside.

Next week, we will look at the experience of caregiver Stacy Maines and a son who searched for a safe, supportive home for his father.

Everyone needs an advocate.

Deb Breslow of Wyckoff is a freelance writer and college essay coach. Her personal essays on home, family, and medical advocacy appear in local, regional, and national publications.