From the Journey of a Caregiver’s Journal
The ups and downs of Ota’s colon cancer meant plenty of hospital visits, stays in the hospital, and operations. It showed me firsthand how an illness can drag out. The long hours of waiting, while someone is in pain, especially someone you love deeply is not just for the faint of heart. You are tired and feeling the energy of everyone’s apprehension and pain, yet as much as you may wish to cry in worry, you control your emotions to be strong. You also try to be helpful and distract the patient, so that are comfortable. You feel their pain and would do all you could to remove or at least reduce it, but you cannot, and you know all the nurses and doctors are doing their best to help everyone who needs their help and attention.
From 1999 to 2003 I became very well acquainted with Cambridge Memorial Hospital. I knew where all the departments were located, which entrance points were closest to the department we would have to visit, and I also knew which entrance points would have wheelchairs if Ota needed them. I knew where and how to contact all the professionals who were involved in Ota`s case if needed. I was at his side so often, Ota’s surgeon teasingly asked who of the two of us spent more time in the hospital!
It’s draining when you accompany a loved one to the hospital who’s in pain and not be able to help other than just be with them, emotionally and physically. If Ota felt pain in the day, he would rest and hope it would become less or abate. Often time, rest did not make the pain decrease, nor did the problems go away, so most of our visits happened late at night, when we both should have been sleeping.
Ota also knew I worked during the day, so I wonder in hindsight if he waited until he knew I was free to go with him to the hospital. Though there were a few hopeful moments as time went on, the prognosis became less hopeful. Often I did not know what to say, but was also afraid to say the wrong thing. I felt like crying so many times. Most often I found words were not even required. But long silences are not my thing, and to distract and distance ourselves from what we were facing, we would engage in conversation.
Ota and I spent a lot of time together, going to and from appointments, in the car, waiting for our appointment times, getting in and out of the car, it was sometimes difficult to make conversations as we were together, so much we were not watching current events, or movies, we did not have much of a social life, between his care and my work. So it was difficult to keep conversations fresh. Ota was not a gossiper, and it was not always the time or place to meet and talk to other patients. We were all aware we were strangers going through similar experiences as we were waiting for tests or to be called for surgeries. We knew we were similar to our pinched faces, shadowed eyes, and our quiet demeanour was reflected at us when our eyes met. Any televisions in the waiting areas were normally set onto news channels unless there were younger children, and then the media was set to child-friendly stations. Soft words of luck and encouragement were said as the patient's name was called, but there was a stillness that was difficult to breach.
It’s oddly comforting to know that we were not alone; others were experiencing hardships and possibly facing death as we were. We were not alone on the journey of facing death while wading through the challenges of living. In the waiting rooms, age, race, culture, gender, nationality, did not matter; we were all filled with compassion, understanding the anxiety of waiting and not knowing what will come. Everyone was quiet, contemplative, somewhat withdrawn. Words were scares, and murmured when the name of your loved one was called along with looks of support and a quiet “Good Luck!” Once loved ones were called you were left to your thoughts and devices, but I was never willing to go too far, and leave for too long. Everyone in the wait rooms were quiet, it’s often difficult to find the correct words of encouragement and support, especially when in similar situations. When words were not available to be found, holding hands, back and shoulder rubs and pats to physically comfort one another, was how we survived. The cancer progressed, we did too.
Visitors to the house and hospital came, but we were tired of telling everyone about the disease, and answering how we were doing… we were coping as best as we could. Every day was different, but the same pain, the same pattern, “every pain hurts, it’s hard to explain it, it hurts different all over, but it hurts”, Ota said once. As you can imagine day in and day out, it wears you down, it tears at your emotions, and with multiple jobs, separated and divorcing, I was exhausted. Yet, feeling like I should and could do more, but not knowing how and what to do, nor the energy, I felt I was not doing enough. If I asked Ota what he needed, his response would be, “I was his rock and I was doing more than enough”, but I was feeling helpless as he kept getting weaker. I was a problem solver, still am, but cancer was not one problem I could solve.
So I prayed Reinhold Niebuhr’s (1892–1971) commonly quoted prayer:
God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference. But did you know that Niebuhr's prayer originally asked for courage first, and specifically for changing things that must be changed, not things that simply can be changed:? It went: Father, give us courage to change what must be altered, serenity to accept what cannot be helped, and the insight to know the one from the other. (Interesting fact isn’t it? One to think about!)
I had to become patient; I had to learn to remain calm. Patience while waiting for results, patience to see the doctors, patience to endure the cancer journey. In learning patience, I also learned to accept. I learned to accept the situation, realize patience with myself and the situation. If I could not solve the problem, I needed to learn how to handle it, so I used my ingenuity. Family and friends were encouraged to read, recall stories about their childhood, siblings, and cousins especially the younger ones were encouraged to sing or tell stories. I learned about distant family members, how Ota was as a child, a young man. I got a firsthand knowledge of his youth, as he and others experienced it. We practiced daily gratitude, even if it was to say: “I outlived cancer another day!”
I took interest in recipes that were easy and may appeal to my grandfather’s appetite. I learned I was not able to do it all alone all the time, so I asked for breaks and had Ota’s children step in so I could get a good night’s rest. I took crochet craft projects to appointments, Ota and I would discuss them. If I was silent there was an excuse, but most importantly I had a sense of accomplishing something, I could control one aspect of what we were facing, and I was also constructing something to remember and commemorate my time with Ota. But in my desire to include him I started asking him questions, about his childhood, his life. I learned about his interests and what he was curious about. I learned Ota was curious about space, the planets, how history was recorded, how artifacts were discovered. I knew Ota had many bibles and had read each bible from cover to cover, so I got a book on bible facts and questions, I was amazed that he always not only knew the answer but could recall the whole story about the question. It was a difficult time, but it was also time together, and a time where I learned more about my grandfather.
I noticed the changes I used that changed the energy of the situation. I could not change the cancer prognosis, but I could encourage change in dealing with it and Ota’s dying. In hindsight, I realized what I called ingenuity was self-care. From 2000 to 2003, I was too busy as a caregiver to know if this was a word! I just heard a few doctors remind me to take care of myself too!
To learn more about how Caring for Others Begins with Care of Self Visit: https://www.homehospiceassociation.com/care-of-others-begins-with-care-of-
Don’t forget about our Many Faces of Compassion Caregiver’s Series: