The Changing Faces of Cancer Caregivers

At the age of 24, I did not expect that a health catastrophe would change my life in so many ways. My emotions really ran the gamut as the days after diagnosis passed, from the immediate reaction of stunned silence, to the guilt-ridden time that I spend silently alone. All the while, I have sought advice on how to cope, but answers to questions that I can now see, I had to discover for myself. It is not a conclusion that has been very easy to come by. This is something that I have battled through, and, at times, waged war with. The balance that has to be formed between knowing the limitations of modern medicine, and the hopes that come from being the sister of a cancer patient is a fragile bubble that reality is always making an attempt to burst.

As I prepare for a career as a nurse, I am trying to take the knowledge that I have gained in my role as a caregiver. While still learning that every case is different and that separation of the heart and mind is an essential tool that needs to be utilized. Yet still, to me, caregiving is not an art, but rather a skill that we should constantly be honing.

I can go to school and sit in many classrooms and learn from those that have come before me. I can read endless textbooks and literature to learn about modern medicine and scientific advancements that are being made. I can even do clinicals and shadow technical experts in my field of choice. That however, will not make a good nurse. Because to me, a good nurse is so much more than that. They are compassionate, loving and wonderful caregivers who do so without judgment or hesitation.

In my own experience of being a caretaker for my sister, I am now convinced that caregiving has much less to do with doctoring or medical educators than it does with skilled nursing. Yet, no matter how much help a family is to receive from professionals, more often than not, caregiving is still very much left to the family.

For the past two years, we have lived in a world of flexibility. My sister has battled stage 4 Hodgkin’s lymphoma with many treatments and with varying degrees of success. It has been very unkind and unraveled the lives of all who love her. It also caused a nearly indescribable effect on my sister, a young woman, by causing changes to her appearance such as hair loss. Chemotherapy treatments also altered her memories and disrupted her focus. Lymphedema has changed her balance and ability to be self-sufficient and vastly affected her emotional state in ways that only time will be able to measure.

The road to where we are today was not one that I thought I would ever travel.

She was said to have an atypical form of the disease, and it wasn’t until complications began to stack up that we realized how different her disease truly was. My sister may no longer be the person she was, but she is still my sister. Cancer took so much from her and my family, that I refuse to let it take her from us. She may have cancer but she is not cancer. As the caregiver, it is often I who struggles with the reality of the situation that we find ourselves in.

She is a source of great concern and contention in my family. We have each gone through very different emotional roller coasters from the date of diagnosis to now. As the primary caregiver, I have experienced a deepening sense of responsibility as her care has gone from minimal to acute and run the spectrum of everywhere in between.

As somebody who has been learning from my sisters care team and is about to enter into the educational arena of medical professionals, I am interested as to how it will be taught. From the view of a family member, I feel that many improvements can, and should, be made in an effort to better aid the patient. I believe that doctors need to acknowledge that a patient is a whole entity, not just the illness that they happen to be afflicted with. They need to look past the fact that they are burdened with far too many patients and see that the one currently in front of them is a suffering human being.

I understand that I am writing to people like me. These are the people who have cared for a loved one who suffers from an illness that, when diagnosed, we most likely did not understand. Because I am a caregiver, I am tasked with what would be mundane everyday things in life. But when somebody is unable to do them, and you have to fill that role, they become anything but mundane. Caregivers protect the vulnerable and dependent. It is tiring and emotionally draining. Effective caregiving requires that caregivers themselves care for themselves.

I’ve had too much experience of the demands, tensions and downright failures of caregiving to fall into sentimentality and utopianism. Caregiving is not easy. It consumes time, energy and financial resources. It sucks out strength and determination. It turns simple ideas of efficacy and hope into big question marks. It can amplify anguish and desperation. It can divide the self. It can bring out family conflicts. It can separate those who care from those who can’t or won’t handle it. It is very difficult. It is also far more complex, uncertain and unbounded than professional medical and nursing models suggest. I do not know these things from what I have learned in school, or what I have seen in hospitals. No, I know them because of my life practice as a primary caregiver.

I had to learn how to be a caregiver. Not because I am not caring or that I had not cared for somebody before, but because it was there to do and it had to be done. I am sure that this is how most others fall into that role as well. Out of our practices comes effects, and out of those practices comes caregiving.

What makes us caregivers varies as greatly as the diseases of those we are caring for. It is all the little things that I have described in caring for my sister: the doing, acting, taking initiative and completing tasks. To live every moment over can feel like such a long journey as a caregiver. But lest we forget, this is our life too. We should not lose who we are by absorbing that role, just as the ones we care for should not lose themselves to the illness that afflicts them. Caregiver or patient, we only get so many turns around the sun. We need not forget that.