“You cannot give another person joy, for joy has never left him. It is what is always there beneath the struggles and the pain, hidden, but never absent.” (William & Nancy Martin)
I’m Linda Marley, age 72, caregiver. My husband is Ed Marley, age 77, cancer survivor. Ed has been a throat cancer survivor for 18 months, since his last radiation treatment.
We lived in a surreal bubble for his long road back to health. Others confirm that it does, in fact, feel like a bubble existence. We sought a sense of control even when it appeared completely impossible. As Ed started to cope with the knowledge that he was very sick, he completed the monthly living details; for example, taking care of bills and paperwork. He, also, mentally focused on the future; what will it be like to be healthy again? As I started to cope with the knowledge that my husband of 33 years was very sick, I went to the inner castle and prayed, “Please, Lord, let this not be Ed’s time. Please may he be well again. Help us accept Your will.” Each day, I gave Ed many healing hugs along with this prayer. I also made sure that I kept my own health appointments. Then, I made action lists to help us create a plan. Together, we organized treatment information until we felt some sense of knowledge and gained a little stability. We kept our large 3-ring notebook throughout the treatment process and used it at all of his doctor appointments.
We were referred to Stanford Medical Center for final diagnosis and treatments. With the help of the Los Altos Assistance League Official Website, we moved into a small apartment that was only a 5-minute walk to the treatments at Stanford. For nine weeks, seven days a week, Ed (a former marine) resolutely walked to his radiation chemotherapy treatments and IV hydration even though we had the option to use our car or be picked up by hospital staff. Some days he walked with major difficulty, but he was able to say: “I can still walk – with a cane this time, but I did it.”
I kept a small notebook with daily details. The medical staff conversed with us and the nurse reviewed the actual notes. That was a surprise. At first, it felt like a test. Also, the new directives were listed as we worked through the program. As directed, we carried a small case of the medications to the appointments. Doctors verbally reviewed the medications; they made changes along the way. They clarified and we confirmed. When Ed was too ill to handle the dialogue at the appointments I would do it for him, and then ask him: “do you agree?” Stanford has a “myhealth” website for patients and their caregivers. We verified our daily journal and confirmed the entries on the website. Occasionally, they didn’t correlate so we would contact the administration nurse on duty. She would then coordinate what needed clarification. Sometimes various nurses would help depending on the question; they would then get the scoop; and then add any necessary instruction. They were truly invaluable to the process. All of the professionals were technical yet caring people that were dedicated to saving his life.
The nurse gave us a list of items to buy. Conditions evolved and caused us to buy even more items. It could be a cold thermos for the Boost nutrition, a weight gain shake, a body healing lotion, a vaporizer, a cane, etc. Many times, Ed would say, “I won’t need that.” We hoped he wouldn’t! But we needed all of them.
Ed’s weight loss required placement of a feeding tube to his stomach. He then used Coram formula several times a day. He reacted badly to the sugar levels. Time and exacting feeding/reaction tracking were needed to obtain the doctor’s prescription for a new formula. For part of the day, he used regular formula, and then the other part of the day was a diabetic formula. That worked; he was able to digest. For him to get enough calories in 24 hours was tricky.
The medical staff tell you about the hospital emergency room. You don’t think you will need it. We did. Because the Stanford Hospital is a huge complex, we didn’t know how to get to the emergency room door when we needed it. It was 3:00am and I drove to the front door of the hospital. There was no one around to help us. We walked all the way around the huge building to that emergency room. I then printed driving directions around the blocks of the complex, just in case we would need them again. Yes, we did.
Hour by hour, I shared in Ed’s feelings and sufferings. It was an intimate, best friend relationship with ongoing trust and prayers. We (the Marley team) worked together to follow the regimen implemented by the doctors. As his caregiver, I helped keep the medical appointments on schedule and the communications accurate and clear. The kitchen and bathroom counters became full of items for the regimen. Everything was kept in exact sequence. We/I would verify with the container, the clock, and the daily journal. At night, I would place his next medication in a bowl beside him. Sometimes we would use an alarm clock. He didn’t sleep well and was sitting up most of the time. Chemo brain is for real; we learned to adapt, overcome, and get through the night in the midst of the fogginess and pain. “Trust, pray, and keep going” became our mantra.
How does one learn to depend on another person and many others to save one’s life? The body is confused & it suffers; the mind is equally in the same boat. In retrospect, it was very humbling — a deep learning experience for both of us. I witnessed how hard it was for a man who had always been very healthy and who was always helping others to now be very ill and have to take orders on top of it all. He was a tough nut; that was confirmed by one of his nurses: “By this time, most of them just give up and do what you say.” We laugh about that now. The chemo/hydration nurses treated him like their very own grandpa. Their sincere touch and care made all the difference. The big guy melted to that authentic care. They found ways to make him smile and let him know that his life mattered.
After nine weeks living in the apartment next to Stanford Treatment Center, my daughter and husband helped us gather our belongings and drive home. We sure needed those loving helping hands. Finally, we were home in Paso Robles, California.
We continued some of the regimen, medications, and daily notes; new tasks were also added. Ed dealt with severe neck and shoulder pain from the radiation burns. Every two hours, I applied sterilization with cloths; lotion was applied with five toothpicks, which eliminated the pain during treatment. I would often apply the treatment during the night too. He healed very slowly.
I talked to the Stanford nurse weekly. It surprised and frightened us that Ed continued to lose weight! He was still very sick. We also conversed with the Stanford nutritionist and eventually saw one in our area. When he could actually eat and swallow effectively, he started to gain some weight, so the removal of his feeding tube was finally approved after seven months of being at home. Acclimating to food was rough for Ed; it tasted like coal. For a very long time, he could barely swallow; his body could not metabolize. Boost nutrition was a major part of the day and night. It took him fourteen months after the final radiation treatment to gain back 20 pounds and then things started to improve. His dry mouth has not gone away; he still drinks water constantly, but his taste buds are back.
Whether we felt like it or not, we drove to Stanford Hospital for checkups every 8 weeks for the first 12 months after we were dismissed, then every 10 weeks. The checkups are currently done by our local ENT Doctor. Stanford trips are now semi-annual. Maybe next year, we can go annually.
Thankfully, Ed has returned to that same decisive guy who can handle all the details and get it all exactly right. Now and then he needs a little of my interest in the details, but thankfully most of the chemo brain is gone. How many emotions are there of suffering, humility, hope, and love? I don’t know, but we had them all. I write for Ed and for me in hopes that it will help caregivers and patients cope with all of the challenges that arise between illness and health.
These days, we smile at our conquest. We appreciate every day. Early on, we let people know that we would appreciate each prayer for Ed’s life. We believe in the power of prayer. We pray for God’s graces to fall over and through all those who gave of themselves for his care and dignity and all those who have prayed for Ed.
God Bless you all.
Whether the patient has cancer or another serious illness or condition, the Cancer Survival Network is an invaluable resource: http://www.CSNcancercare.org
The Caregiver’s Tao Te Ching: Compassionate Caring for Your Loved Ones and Yourself, by William & Nancy Martin
A powerfully poignant and practical book filled with words of wisdom, grounding guidance, nurturing comfort, and inspiring encouragement to empower and sustain anyone in the role of caregiver.
The husband and wife co-authors, Nancy and William Martin, writing from years of study and compassionate caregiving within the Tao Te Ching tradition, speak of essential Soul truths that can easily be translated by all faiths and spiritual traditions.
This little, inexpensive book is a mighty resource if:
1.] you are a present caregiver
2.] you want a handy resource on your bookshelf when an unexpected crises hits, and/or
3.] you want to encourage a friend in the caregiver role, either with a word or two from its pages or with the gift of the book itself.