Reasons & Remarks – Ready To Advocate

Though emotionally and physically draining, advocating for family in hospital insures their voice is heard

I woke up the morning of Aug. 18 with a call from my dad. He said, “Albert, your mother is dead.” Out of concern for my father, I asked if he was going to be OK, and he responded, “No! Your mother is dead. I have to go.”  

Just 49 days earlier, my friend and I were on a 15-hour drive to Durango, Colo., when I received a text from my sister alerting me that our mom was in the intensive care unit and the doctors had little hope she would recover. I arrived at our hotel, took a quick shower and went straight to the airport to catch the first plane home.

My wife picked me up at the airport in San Diego and drove to the hospital, where we joined my brother, sister and father as they surrounded Mom’s hospital bed. Considering the long list of “possible” diagnoses, I felt despondent and became borderline panicky when the hospice nurse began talking to us as if the end was near. Things were happening too fast, and I couldn’t believe we were talking about Mom dying.  

Fortunately, my family lives on a small island and the hospital is only a half-mile from my home. Every day, I would push my chair to the hospital and visit Mom. At any given time of the day, a member of my family would be at Mom’s bedside, not only to keep her company, but to be involved in her care. After all, Mom’s survival wasn’t guaranteed, and we needed to advocate on her behalf.

From the start, we were besieged by a small army of doctors using medical jargon interspersed with clinical data that I pretended to understand. They gave radically different predictions that ranged from “I’ve had patients live as long as two weeks with her condition” to “she’ll soon be back in the pool doing water aerobics with her friends.” 

The false hope, unrealistic expectations and apparent lack of coordination among the specialists only led to disappointment and frustration.

I started thinking my family needed to advocate more for my mother, so I started spending my evenings on the computer consulting with “Dr. Google.” I’ve been hospitalized many times over the last 32 years, so I’m familiar with patient advocacy. However, this is the first time I found myself an advocate rather than the patient.

My wife and I became quasi-experts on rare blood disorders. I would never go so far as to challenge Mom’s doctor based on something I read on the internet, but advocating for Mom was priority number one. Still, I think my family was doing a pretty good job at asking the right questions and helping Mom make informed decisions.

At some point, Mom decided her care at the hospital had plateaued and it was time for the next step. The doctors agreed to discharge Mom with 24-hour care at home. We spent hours on the phone talking with health care vendors as we prepared to have all of Mom’s needs, which included medical equipment, therapists, nurses and caregivers, met at home. The insurance covered everything except the caregivers, which cost almost $900 a day. Dad made it known that he was committed to support Mom at any cost, but at that rate, he was eager to have Mom up and running ASAP.

We were excited to have Mom back at home, but our exuberance was short-lived. The pricey caregivers were reluctant to do their job according to their contract and became unreliable. Mom’s health appeared to decline quickly, and one of the caregivers called an ambulance to take her back to the hospital.   

Feeling defeated, we looked at other options and a bed at a nearby nursing home was available. Mom always said she never wanted to end up at a nursing home, and she hoped it would be temporary. We wanted the best care possible for Mom, so she signed up for their two-week respite package. With a $4,000 initiation fee and a rate of $400 a day, we were promised first-class treatment with round-the-clock care.

Unfortunately, the care Mom was receiving at the nursing home was, by and large, less than satisfactory. Furthermore, after a series of letdowns on the part of her primary care physician and her oncologist, Mom told me, “I don’t know how much longer I can do this.” Soon after, Mom told Dad that she was beginning to re-think her decision regarding hospice.

For the last 49 days of her life, Mom laid in a hospital bed, dependent upon others. However, until the end, it was always Mom’s decision to fight the odds or accept the inevitable. Whichever she chose, we were ready to advocate. 

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