Welcome to the 2020 WATCH “RWISA” WRITE Showcase Tour!
Featured Author for Saturday, 11/14/20…
RWISA Author, Harriet Hodgson!
“UNLEASHING THE ADVOCACY WARRIOR”
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 18th 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.
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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What a beautiful reminder that we can advocate for the ones we love. A great tribute to your love, too.
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Yes, Harriet, your husband is lucky to have you as his advocate, especially, a fearless one like you.
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Hi, Harriet! Thank you for sharing this important piece with us, and for showing us that love is so much more than an emotion! You’ve put it into action, using the gift God gave you to bring about a change in your husband’s care. We’re going through this with my mother in law right now. Thank you for this ray of hope. Praying for you and your husband!
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Thanks for sharing your story Harriet. It’s a big one and inspiring. Best wishes to you both, Susan
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You are one of those warriors. Saluting you to the utmost, and shouting about you on my blog.
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Hi Harriet–I’m so proud of you! For many years, I worked at a not-for-profit long-term care association, and, although my first allegiance was supposed to be to providers, I heard many stories such as the one you relate (minus the pandemic, of course). So many families think they’re going to expose their loved ones to abuse if they speak up. Even when my father-in-law was in long-term care, my husband’s family complained to me about what was going on with him. I asked if they’d brought their issues to the administrator, and they said no. “How can they fix something if you don’t tell them it’s broken,” I always asked. He was in Kansas City, Missouri, at the time. I went around to other skilled nursing facilities in KC and read their deficiency reports to see if there were other places that would have been better, and, frankly, the one my father-in-law was in had better reports. I wrote a consumer guide to selecting long-term care when I worked at the association, and one section strongly encourages consumers to advocate for their loved ones. Your action would have been a prime anecdote to cite in that consumer guide!
Best wishes to you and your husband. I hope things improve. You have been–and remain–his best advocate.
Thanks for sharing, Harriet! There are wise lessons here for all of us to learn and do as we advocate for loved ones and for ourselves.
This was an inspirational piece on the importance of patient advocacy. Too often patients get lost in the bureaucracy, and it’s important they have a patient advocate to make sure they receive the proper care. Harriett shows her love for her husband in this piece.
Oh, Harriet! I’m so sorry you and your family are having to deal with this heartbreak. I will be sending healing energy to your husband in hopes that he is comfortable and taken care of. I’m also sending you many virtual hugs. Please, remember to take care of yourself first, so you can be the amazing warrior that you are for him. XOXO 🙂
Oh, Harriet, your story is so familiar. When my husband’s health was declining rapidly, I had to fight some of the same battles. Some I won. Some I lost. Thank goodness we’d never heard the word COVID yet. But what I want to say is that the spirit in your post is what shines through the most to me. God bless you and your dear husband!
I know so well what you’re talking about. I had to be the advocate from my husband as he was in the hospital. I was there every day and spent many hours there during the day. I didn’t have Covid to deal with but there were other things that I had to stand up to and while my husband was living, he depended on me.
Thank you for sharing what you going through. Living in a forging country that speaks another language, I found out too that I was stronger than I thought. Sure, I speak the German language very well, but the legalistic jargon and all was sometimes way above my head. But I found out when I called an agency asking for help, they were respectful and willing to help me.
I wish you and your husband well.
Harriet, I had tears in my eyes as I read this. How wise of you to use your great skill -writing – to fight for your husband, when a verbal confrontation could have devolved and been counter productive. I am so glad you are able to share time with him now. God bless you and your family. A beautiful piece!
Dear Harriet, We need to clone you!
Hi, Harriet! You are my she-ro! I love this! #WarriorYouAre