Life as a caregiver was constantly changing with many challenges along the way; many adjustments were made in my life. I had to face and cope with many things that were not normal to me, and there were many new things to learn. Life was stressful. We all know we will die at some time but receiving a diagnosis of a disease, and the realities of surviving it, adds a whole different dimension of stress.
My first time as a caregiver, while I was facing the loss of my grandfather to cancer, I was also going through separation and divorce from my husband. A very intelligent friend who listened to me vent about what was going on in my life, and my doubts of being able to take on all that being a caregiver entails, recommended that I brush up on my assertiveness.
What is assertiveness? Assertive is an adjective, meaning to have or show a confident and forceful personality. If you know me, you know I am a strong character. But that is not all there is to being an assertive person; it’s about making choices and being confident. It's about feeling good about yourself and the decisions you've made. Most often an assertive person will achieve their goals, but when their goals are not obtained, they do not lose confidence. They know they have been honest and straightforward.
In becoming a caregiver, I had to be brutally honest with myself. I had to face my insecurities and fears. I had to assess if I could provide the needed assistance and do what was needed as my grandfather’s cancer progressed. I did not know how it would progress, how long the journey would be, how the disease would affect my grandfather, or what would or would not happen during the progression. The only thing I knew was that I would lose him.
I was worried if I were able to provide the level of care required. Could I bath, toilet, lift, wash, dress, feed, give medications, injections, and possibly dress wounds? Did I have the temperament to take on the role, be patient, caring, compassionate, and kind, yet firm when needed? Could I put aside my wants and desires to respect what my grandfather (later my grandmother), desired? Would I be able to make them and their needs a priority, dropping everything at a moment’s notice if they needed me, or needed to go to the hospital in an emergency…was I willing to stay all night with my grandparent(s)? Could I manage all the responsibilities, while taking on full responsibility for my own house, my work, and my jobs? I made the promise to myself while I was young, now I had to ask myself, was I still willing? I had attempted caregiving for strangers, I could not do it.
It turned out I could do it for a loved one.
Throughout the process, if family or friends asked why this or that was not being done, I would question myself and wonder if I was doing the right thing. Both Ota and Oma were wonderful in appreciating me and reassuring me that they were happy and felt safe to rely on me. That went a long way to comfort me. This did not reduce the stress, nor did it make things easier or diminish the situation, but the encouragement from my grandparents did bolster my confidence. After all, they were the patient(s), and their needs being met is what it was all about.
I’ve always been the person to care and look after others. I am always willing to help others, and often take on more than I realize. During my first caregiving role with my grandfather, I was also going through marital separation and divorce. Caregiving was not the cause of the breakdown of my marriage, but it sure did add other stresses and worries to my life. Everything was happening at a whole new level. I worried about becoming a single homeowner, needing to cope with all household chores, working three jobs..could I do everything financially, emotionally, physically?
In the beginning I questioned if I was ready. There is no way to really prepare. I dealt with things as they came up and hoped I was doing the right thing. Sure, you are informed of what can happen and what to expect with the disease, but everyone has a unique and different reaction and actually going through the experience is much different than being given information on what to expect. Heck, my grandfather’s surgeon was surprised how the cancer metastasized! Though all the tests were run, nothing was visible until surgery exposed what was going on.
"Expect the unexpected" is a saying we can apply to all aspects of life, and taking care of someone during a cold, flu, or recovering from a surgery is not the same as when you become a caregiver. It doesn’t sound difficult to help someone sit up, get out of bed, give them a sponge bath, shave a beard, help a person get dressed, or take them to appointments, but doing it daily as they become weaker is not easy. I learned to pace myself, dealing with progressive disease is not always a sprint. It’s a marathon.
As I was the constant person with both my grandparents, I kept track of everything: the appointments, doctor’s orders, medications. I did research on each of the diseases in addition to what the healthcare specialists told me. I met with different people: nurses, PSWs, lab technicians, pharmacists, oncologists, social workers, home care providers. I was the liaison between professionals, family, and what each of my grandparents wanted in their situation. But mostly, I had to become an advocate to speak up for what each of my grandparents wished their individual treatment to be. Not everyone wants to have radiation or chemotherapy, and it’s not always a recommended option. I had to ask the questions and speak to ensure that Ota’s, and later Oma’s, wishes were honoured and respected. Sometimes I had to be very assertive.
Humans err and make mistakes. Professionals are humans too, I was always vigilant to make sure Ota and Oma had the best care possible, but we also had to be realistic. Yes, we wanted a cure and for the cancer to go away, but that was not in the cards, unfortunately. But the caregiving journey relies on good clear communication with everyone working together in providing proper care. I recall becoming very upset when a doctor recorded information about my grandfather as he was being transferred to the palliative ward after a surgery.
She spoke softly to keep information confidential, but Ota was hard of hearing, so I spoke louder so he could hear, automatically translating into our dialect of German. She asked me if my grandfather was able to speak English. I replied he could, but he needed to hear her questions. Even though she spoke louder, and my grandfather responded succinctly in English, the misunderstanding was recorded in the notes. I found this out the next day while visiting. A nurse came into the room and gently touching my grandfather, pointing to his wound, said his name and asked: “Ouch? Or ouch ouch?” Baffled by her manner of communication, I asked what she was doing. She replied as he could not speak English this was her way of determining if his pain was bad, or really bad. Long story short, the nurse read the chart that said my grandfather could not speak English! To say the least I very emphatically made sure that that error was corrected! As you can imagine, I did my best to be as assertive as possible, but I did slip up the next time I saw that doctor and expressed my disappointment in how my grandfather’s care possibly suffered for that error.
Becoming Ota’s caregiver was like my first rodeo, by the time I took care of Oma, even with the situation and illness being different, it was much easier, it was like I had been there, done it and got the t-shirt! Looking back, I still wonder how I endured, overwhelmed as I was, especially in the beginning. I too, am human. I had my moments were I was not as assertive and clear as I could have been. Caring for someone you love affects one’s emotions, our fears, hurt and frustrations sometimes surface. But as I learned to cope with the challenges, I learned to be better; more assertive while still remaining compassionate. I remained calm and centered in most stressful situations. I became confident, believing in my ability to handle situations I encountered, I was able to deliver information in a controlled and respectful manner, while being firm on my position. It wasn’t always easy, I may have had to count to ten or even twenty a few times, or take a few deep breaths in and out before speaking. But it was worth it, because at the end of the caregiving journey, I emerged as lioness, even if my “roar” was just being assertive.