Roadmap to Cancer: Advice for Caregivers for an Unmapped Journey

While I am aware that people far younger than my sister are diagnosed daily with cancer, she was only 27 years young when we learned she has stage 4 Hodgkin’s lymphoma. Beyond the fact that I knew lymphoma was a blood cancer, I knew little to nothing else. The thing that I did not even begin to grasp was how cancer would become so incredibly controlling and pervasive in our lives.

After initial treatments failed, we faced the year-long journey of gaining remission so that she could receive a life-saving bone marrow transplant. All the while, complications continued to plague her. Cancer filled our lives with so much emotional and mental turmoil as we navigated an unmapped road.

Her frequent hospital stays meant long days of shuffling back and forth between hospital and home. Attending clinic 30 minutes from home three days a week meant funds for gas and endless hours stuck in traffic to get blood tests and fluid hydration. While fighting for her health, mine began to decline.

I gained weight and lost weight. Chronic fatigue was an ever-present issue, as was a very unhealthy lifestyle. Days spent with her in-patient were often filled with tests and waiting for the results. It made me so anxious that I often had little to no appetite. The few days I spent at home filled me with guilt for not being at the hospital with her. When at home, I was frustrated and tried mightily to catch up on all that had fallen to the wayside with her so ill. It is only now, more than two years post-diagnosis that I have begun to seek professional help to deal with my own grief, stress, depression and anxiety.

When the doctors told us the news, it was thought that 12 rounds of chemotherapy would lead to remission. How it was said, it seemed like there wasn’t another outcome to consider. Like it was black and white — a guarantee. In reality, cancer is life-consuming. It is not simple like in the movies. Things change and shift daily. Something that was set in stone one day is washed away by a rolling tide the next. The idea of normality is gone when cancer enters the picture. You do your best, but so much is simply out of your control that it often feels like a losing battle.

I think the struggles that we have faced are similar to anybody touched by cancer. Though the central focus is the patient, an after thought, if thought of at all, is that of the caregiver — the ones like me who spend my days consumed by another’s well-being with no regards to my own. For me, learning about burnout, and how I was living my life would be problematic, was learned far too late.

Nobody can assume to know how a patient feels. The patient is the individual who is being ravaged by a malicious illness. Much the same, I think that nobody can understand the burden of a caregiver. We are burdened by much of the same emotions as that the sick loved one we care for. Responsibilities fall to us in an immediate fashion that I wasn’t, and I am sure most aren’t, ready to take on. Additionally, whether accurate or not, it feels as though we have no option to say no.

The role that one plays in everyday life is vastly altered when you become a caregiver. Many titles are bestowed to you based on circumstance. The level of care varies from minimal to acute, and we do it no matter where the patient we care for falls on that spectrum. I have no idea just how many hours a week that are devoted to my sister’s care. I would assume far more than any medical professional would deem appropriate. For me, it was a full-time job for the better part of two years. The only difference is that it was not a job that I could clock in and out of or leave.

I have had the incredible benefit to be from a large family. When at times I did it all, I have also had help. While I performed daily activities and tasks for or with her, I had others as a support system. They did the shopping, paid the bills, dealt with oxygen, took care of the dog, cooked, cleaned and played chauffeur. That allowed me ample time to make and attend appointments without needing to also facilitate or manage the other tasks that life still demanded of me.

Throughout, I have done a lot, both medically and non-medically for my sister. I have helped with her personal care, such as hair cuts, bathing, dressing and her diet. As for the medical side, I have essentially been a personal care nurse for her. This includes but is not limited to: injections, medication dosing, wound care, linen care and monitoring her condition to know how to adjust accordingly. I have been lucky to have training from her care team, but I know that many do not get the crash course that I have received.

I never knew how taxing the role I chose would become, and that even though I was invested because she was my sister, being her caregiver would give “attached” a whole new meaning. When I was ready to seek help, it was stunning to find that so little existed. I am a minority. Not because I am a caregiver, but because I am under 40 and I am caring for a sibling. Youth givers are rare as it is, those not caring for a parent or spouse make up less than 14 percent of caregiver population.

I never thought that our family would be one to crumble with cancer. I proved to be very wrong on that assessment a little over a year in. Everything that I thought was admonished when this illness lingered in our lives. It disturbed our normal and changed the balance that controlled our household. It created chaos and none of us were equipped with the skills needed to be a calming force.

As a caregiver, it has been a tough journey. Aside from the tasks that I have needed to learn, watching my family struggle to maintain their identity and finding a new normal every step of the way, the ultimate challenge has been not knowing. The uncertainty that this illness has caused with my sister’s life if one that I’ve not been able to reason with.

If I could highlight or choose one issue that means the most to me, it is that of support. I would desire nothing more than for more support to be readily available to those of us caregivers.

When performing medical tasks at home, I had the confidence that I’d been gifted by her care team. When giving injections, though nervous, I knew that I could do it. Nobody would have ever sent her home from TMCA (The Medical Center of Aurora), had they not thought me to be capable of successfully administering medical attention when needed.

I would love to see support come in any form that would have made these last few years less burdensome on my family. That may be transportation coordination to better assist with making the seemingly endless appointments. Or for a food service to aid with in pre-made meals for when a patient is sickest, or maybe on days that they receive treatments, just to make that one less thing that is on the daily to-do list that needs to be accomplished.

It is often hard take down the barrier wall that one puts up. When you care for another, you try to shield yourself and be strong. When reaching out for help, you have to be open and receptive. You have to be open to getting aide, respite, sharing your emotions and receiving what is offered. It is not easy to be vulnerable, but often required.

Next, care for you. Yes, you. The one who does the caring. Stand in from of a mirror and ask yourself the same questions that you ask the one you are caring for. Are you getting enough sleep? Eating three meals a day that are healthy and fulfilling in nourishment? Do you give yourself breaks to breathe? It is just as important to care for you as it is to care for the one who is sick. If you don’t than you will not be able to assist the one you love when they are in need.