My life changed forever on April 15, 2014. I remember the day as if it were yesterday. My parents were traveling back from my grandfather’s house in Ruidoso, New Mexico. Mama had told me that Daddy hadn’t been feeling well the past few days. He had been experiencing a large amount of blood loss and malaise. My father suffered from many medical problems including chronic obstructive pulmonary disease (COPD), coronary artery disease, and hypertension, and he had only one functioning kidney. When they arrived home, my younger siblings called me. Since I’m the local sibling in the medical field, they wanted me to assess my dad’s condition. Immediately, I drove the four rural blocks to my parents’ house. My dad’s skin appeared to have a grayish color, his pulse held a very weak rhythm, and I was deeply worried about his state of health. I asked him to go to the emergency room. After spending more than six hours in the ER, his physicians decided his resulting lab work warranted hospitalization in the intensive care unit.

In the following days, the medical staff ran hundreds of tests to identify the cause of my dad's severe condition. With the help of endoscopies and biopsies, they gained control of his symptoms and released him to his home. With his discharge from the hospital, I thought the battle was drawing to a close. In less than a week, the results turned my nightmares into reality — my father had advanced liver cancer. Daddy refused to give in to the grim prognosis; he wanted to fight the cancer with chemotherapy. Shockingly, the cost of the chemo ran into the thousands, and we searched for a way to get financial aid. Unfortunately, his condition continued to deteriorate, and my family looked into the options of gaining home health care services.

Two weeks following his discharge, Mama took Daddy to see his primary care doctor, whom he hadn’t seen in the last two years. During this office visit, the physician told us that he would provide a referral for Daddy to obtain home health services. We knew this would give Daddy the benefit of staying at home to receive most of his care.

Mama began looking through home health care brochures for local home health care providers. With the doctor’s referral in hand, she contacted the first listed agency. The agency set up an assessment visit later in the same week. My father experienced a large amount of difficulty in trying to move about the house. I decided to go to a local drugstore and purchase him a walker. During the initial home health visit, I discovered that the agency would provide any medical equipment he needed, even a walker. In that moment, I realized I had spent more than $150 on a walker he had for barely 24 hours before the visit. I was surprised to learn that Medicare would cover the total cost of his home health care services but not the cost of the chemotherapy.

The nurse who completed his initial assessment determined that Daddy could receive two visits per week. They wouldn’t be able to assist in household chores, but any other care would be given. They would monitor his vital signs and weigh him during each visit. Relentlessly, she tried to convince Daddy to let the nursing staff assist in bathing him, but he refused to allow nonfamily persons to bathe him. The home health agency helped Daddy to get an oxygen concentrator to aid his breathing due to the added complication and exacerbation of his COPD.

As the home health care visits became routine, I visited him every day when I didn’t have to work at the hospital. For reasons I can’t understand, I didn’t monitor his vital signs and lab work as rigorously as I had during his hospitalization. I saw Mama become exhausted from running their business and caring for Daddy. She bathed him, cooked for him, watched their grandchildren, and managed to make arrangements to take him to all of his doctors’ appointments. Even though Mama’s stress rose, I didn’t take the time to help her care for him beyond taking him to one of his 16 doctor visits.

After a month of follow-up visits, Daddy obtained approval for coverage of his cancer treatment. Mama followed all of the directions for setting up his chemotherapy dosages. The home health care workers advised my parents of the risks and signs of adverse reactions to watch for during his therapy. On the day he planned to begin the chemotherapy, he confided to Mama a secret — he had been bleeding for more than a week without telling anyone. Immediately, Mama called the home health care nurse, who advised her to contact the oncologist. I felt frustrated that the home health care providers hadn’t been monitoring Daddy’s stool for blood. To this day, I don’t understand how the nurse missed this. I realized that we should have been looking for the presence of blood in his stool. Since the home health nurse visited for less than an hour twice per week, we should have watched for this sign. Without family input about his basic bodily functions, the agency couldn’t predict that he needed lab work.

Daddy’s oncologist told Mama to withhold the initial dose of chemo and take Daddy to the local urgent care center for oncology patients. The nursing staff obtained his blood levels and found he needed hospitalization. The liver cancer had decimated his body’s ability to maintain adequate platelets, which enable blood to clot in lesions. Without the liver fully functioning, his blood concentration of potassium and nitrates rose to dangerously toxic levels, adversely affecting his kidney.

After two days, the doctors informed us that Daddy’s condition wouldn’t improve. My younger siblings and I talked with Daddy and Mama about this news. Two days later, Daddy passed away from the exacerbation of the cancer. Looking back, I should have monitored him more closely. While the home health care agency gave us a sense of security, we needed to take responsibility for his care when the providers weren’t there. Each day, I remember my mistakes, and I hope that sharing this story reminds others to continue watching over their loved ones when under the same delusion — home health care providers can’t give proper care without the family carefully watching what occurs outside of home health visits.