Unleashing the Advocacy Warrior

By Harriet Hodgson

My husband and I live in a retirement community that has a continuum of care. He is paraplegic and I have been his caregiver since 2013. Several months ago, my husband was diagnosed with advanced prostate cancer. A bone scan showed the cancer had spread to many parts of his body. As my husband became weaker, I realized I needed help to care for him.

Now my husband is in a rehabilitation unit. Unfortunately, COVID-19 prevents me from seeing him. I live on the 18^th floor of the high-rise and my husband lives on the third floor. We are near each other, yet so far away. Being apart from each other made us feel stressed, frustrated, and down.

Then I received a notice in my mailbox. A new program was starting. Family members could make appointments to see their loved ones. Only two family members could visit at once and they had to follow strict rules. My daughter called the contact number and was given an appointment date and time. We were super excited.

Before my daughter arrived, I talked with my husband’s physical therapist. It was difficult to understand him because of his mask. He had difficulty understanding me because of my mask. I felt like we were going to do charades at any minute. Still, meeting the therapist gave me a chance to ask questions. Every question yielded the same answer: “That’s not in my pay grade.” What the heck did that mean?

A nurse came into the room and greeted my husband with, “Hi Handsome!” She seemed proud of her greeting. In fact, she turned to my husband and asked, “Every time I walk into your room, I say that, don’t I?” My husband answered “yes” in a flat, discouraged voice. The nurse didn’t pick up on his voice inflection and seemed validated by my husband’s reply.

My daughter and I stayed for two and a half hours and my husband coughed most of the time. As we left the rehab floor, we met the director of nursing. Of course, we grabbed the opportunity to talk with her. We made sure there were six feet between us. The director was patient, attentive, sympathetic, took notes, and said she would give the matter her attention.

Did I have the power to change anything? This question rattled around in my mind for hours. That evening, I sat down at the computer and wrote a heartfelt email to the director of nursing and carbon copied the director of the retirement community. This is the letter. I modified the wording to maintain confidentiality.

Dear ______________,

Thank you for meeting with me and my daughter this afternoon. I am aware that my husband may have declined physically and mentally. I am also aware that he doesn’t feel well, hasn’t slept well since he was admitted to the rehab unit, and feels isolated and depressed.

My husband has been coughing for three weeks. He feels so badly I don’t know how he could endure physical therapy, let alone benefit from it. He feels so badly he would just as soon die. Before we make a final decision on Supportive Living, I would like him to get some sleep and for his cough to subside.

I have gotten confusing information from nurses. Yes, my husband has pneumonia. No, he doesn’t have pneumonia. Communication is my business and the communication from staff on the unit has been poor.

The physicians who founded the clinic believed the needs of the patient come first. After I talked with the physical therapist I was confused and sad. I asked him several questions and his answer was always the same: “That’s not in my pay grade.” This is not the answer I expected from a clinic employee or physical therapist. I was also upset by the attitude a couple of nurses exhibited. They treated my husband like a foolish old man in a wheelchair. Like every patient, my husband deserves to be treated with respect and dignity.

I share these thoughts with you out of concern and love. My husband and I have been married for 63 years. We went together for four years before we married. This is a difficult time of life. At a time when we are most vulnerable, life demands the most from us. I am my husband’s wife and advocate and will not fail him as his life draws to a close.

The next day I received a call from the director of nursing. Since I had been tested for COVID-19 twice and the tests were negative, administration did not think I was a health risk and could visit my husband daily. I was astonished.  “I’m going to cry,” I admitted to the nurse.

My story is not unique. There is an advocacy warrior inside you—a person ready to stand for love, quality care, and human dignity. But we must assume this role thoughtfully. Note important dates, such as hospitalization, on the calendar. File important documents in a safe place. Keep a log if you think it is necessary. Follow the chain of command. Speak in a calm voice and be civil. Remember, there is a difference between being persistent and being pushy.

You and I do not know our strength until we are tested. We are stronger than we realize. Most importantly, our loved ones need us. As my husband asked, “What happens to people who don’t have an advocate?” The famous children’s author, Dr. Seuss, explained advocacy better than I. “Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”

Advocacy takes many forms—better healthcare, better transportation, better education, better architecture, better laws, a welcoming community, and more. One person can make a difference. Maybe the time has come to unleash the advocacy warrior in you.

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