At a Cancer Encouragement Group meeting I attended without Chris, the survivors updated the group on their status. After I told how Chris was doing, the leader then asked me, “How are you doing, DeLayne?” No one had ever asked me that. People would often ask Chris how he was doing with me standing right next to him, but it was as if I were invisible.
I was caught off guard by the question. I burst into tears, touched that someone cared about me. Someone understood I was suffering too. I later read an article regarding this phenomenon and became aware it would help me to discuss my feelings with other caregivers. I needed to talk with someone who understood what I was going through, but I didn’t want to burden my husband. I couldn’t let him know how worried I was or that his situation caused me stress.
Because of this, I helped start a group for caregivers at our church. Unfortunately, it had poor attendance. When caregivers need the group the most, it’s difficult to leave the patient home alone. They put their own needs aside, sometimes to the detriment of their own well-being.
It reminds me of the emergency instructions given on an airplane. Passengers are to put their own oxygen masks on first before attempting to help someone else. It’s not self-centered—it’s the smart thing to do. If you were to pass out from lack of oxygen, you wouldn’t be able to assist anyone. It’s the same with being a caregiver. If you don’t take care of your own needs—physical and emotional—you will be in no shape to successfully take care of anyone else.
I frequently played tug-of-war with my emotions. I tried to stay positive and be brave for Chris to give us both hope, but deep down I was a realist and knew I would need help sooner rather than later and possibly be facing widowhood. I was constantly thinking ahead. What would I do if such and such happens? Who could I call to help me?
While trying to control the negative thoughts constantly swirling in the back of my mind, I was also being stretched to my physical limits, taking on more of Chris’s responsibilities at home. I took over the household chores we used to share plus the yard maintenance. That was in addition to working for clients, shopping, preparing meals, paying the bills, dealing with insurance paperwork, keeping track of which medical records I had requested and received, providing those records to his employer for intermittent disability requirements, attending all his appointments, and researching lung cancer treatments.
Sometimes it’s as hard being the caregiver as being the patient. At least the patient is actively doing something to combat the disease. The one giving the care often feels helpless. That’s why I became obsessed with research for clinical trials and tried to learn everything I could about the newest treatments for lung cancer. Keeping track of his medical records and treatment history was another way I made myself feel useful. I obtained copies of every medical report and CDs of every scan. I took the most recent records with us to our local emergency room, since they didn’t have online access to MD Anderson’s system. This helped them quickly understand his condition and compare changes.
4-1/2 years into the cancer battle (2014)
I read every word on the medical reports and looked up unfamiliar terminology. Knowing medical terms made understanding the doctors much easier and allowed me to ask appropriate questions. The doctors appreciated that I came prepared with questions.
I read about side effects of every medication Chris took and looked to see if he was prescribed drugs that shouldn’t be taken together.
My husband’s cancer consumed my time. But the love of my life was worth every second.