It was late March 2012 when I got the phone call. “There are masses in your father’s brain,” my mom stammered, almost too calmly. “They don’t know what they are.”
I broke into hysterical tears, hyperventilating into the phone, asking what was going to happen next and if I could talk to him. My father sounded distant when I spoke with him, like he was floating outside his body- his mind far, far removed from the actual reality of the situation.
To be honest, I wasn’t entirely surprised by the bad news. My father had been acting strangely for several months, having trouble completing the most basic of tasks (putting on a jacket), driving haphazardly, and creating awkward situations with sudden bursts of unexpected rudeness. He had also lost a tremendous amount of weight, his skin sagging, face falling inwards, circles under his eyes. He was no longer the bright, funny man he had been.
I moved home to my parents’ house in May 2012, desperate for answers and angry at the universe for putting my family in this position. My father certainly wasn’t the first family member to suffer from cancer, and although I hope he’ll be the last- the genetic odds are not in our favor.
As a 23-year-old, this bout of cancer felt palpably different. This time, the threat was more present and intense. Before, when my grandparents had become ill with cancer, I was only a child, watching from the corners of dimly lit rooms, not entirely understanding that their bodies were being ravaged by a quiet, creeping disease. I cried when they passed away, of course, but I couldn’t yet grasp the way my uncle, aunt, and father felt seeing their parents quietly fade from bright life to utter silence.
Now, standing on the concrete stairs of my home, I realized I was no longer the child in the father-daughter relationship. I was a caretaker. Our roles were completely reversed.
Every day felt like a marathon. My father had an entire team of doctors and specialists working on his case, filling our days with appointments and pills and shots. He had radiation and chemotherapy, MRIs and PET scans. As time passed, I grew more comfortable in my role: driving my father around, reminding him of his medications, constantly monitoring his health and appetite, helping him to get dressed- these things became a part of my daily routine.
March 2014 will mark two years since the beginning of this harrowing journey. My mother and I have followed my dad in and out of hospitals, camped out in waiting rooms sipping bitter, burned coffee. He suffered from a massive blood clot several months into treatment and eventually had part of his left lung removed, a difficult surgery that has had an equally difficult recovery period. Despite these setbacks, though, my father is now entirely cancer free. He is regaining his verve and humor every day. Stories of recovery from Stage 4 cancer are rare, and not a day goes by where I don’t thank the universe for the surprising, hallowed reverse in fortune.
Over the past 22 months, I’ve written a lot. I’ve felt a lot of discomfort and sadness. And I’ve talked a lot about my experiences. Yet, I’ve never sat down to chronicle the path of becoming a caretaker. It’s an uncomfortable reality everyone has to face at some point.
Becoming a caretaker may not even involve your parents, you could find yourself caring for a friend, grandparent, or neighbor. You may be put into the role when you’re older, or you may find yourself in a situation similar to mine- unexpected and unprepared and relatively young. There are some valuable lessons to be learned through the experience, and a few key points to keep in mind.
1. Be Patient.
This is a good rule for a number of reasons. For one, taking care of someone requires patience. REALLY. Also, caring for someone not only places you in a potentially uncomfortable position- it also puts the person you’re caring for in a potentially uncomfortable position. Depending on the amount of help the person needs with daily tasks, boundaries and comfort levels likely need to be discussed. It’s all part of the process, and it’s absolutely OK. Communication is key.
2. Be Kind.
I feel like this should be pretty obvious.
3. Take Time For Yourself
OH MY GOD THIS IS SO IMPORTANT. I cannot, CANNOT– stress how key this is. You have to take care of yourself in order to effectively care for someone else. PERIOD. Do not go without sleep, do not go without food, do not leave all of your interests behind. You need to have a safe space to not be a caretaker. It is part of your identity, not your only identity.
4. Stay In The Moment And Take Things One Day At A Time.
This can be incredibly challenging if you’re waiting for test results. The first few months back home were excruciating because there were so many unknowns that could only be answered with time. I woke up with jaw pain from grinding my teeth and I started developing severe heartburn when I ate. It takes a lot of conscious effort to realize that you need to relinquish some control over the situation, and it takes time to let go. Giving up control does go hand-in-hand with taking time for yourself. You need to be able to step away from the role of caretaker in order to clear your mind and breathe. It took a long time for me to realize that I needed to just put one foot in front of the other, rather than jump to conclusions.
5. Talk To The Doctors. Be A Patient Advocate.
Don’t be afraid to talk to the doctors and nurses. As a caretaker, you fill a unique role and are in a position to ask questions. You are the one helping the patient on a daily basis. If you feel something is awry or not working, SAY SOMETHING. Silence does not help anyone in this situation. If you’re not comfortable with the treatment the patient is receiving, make sure you bring it up. If you feel the patient is not being listened to, bring it up. Likewise- if things are going wonderfully, it’s always a lovely gesture to thank the medical professionals who are providing the care. Gratitude and advocacy are two of your greatest assets as a caretaker.
6. Find Support.
Certain medical providers (especially cancer care centers) offer counseling services and support groups for family members and caretakers. You’ll probably have to do some research on your own to find a group that works for you, but being around people who are going through similar experiences can be a hugely refreshing experience. Many support groups will also know of other support resources you can use in your area. You should also check your state’s regulations and see if you can be paid for your time as a caregiver- it didn’t work out in my case, but some states will allow family members to care for ill loved ones and be reimbursed for their time (keep in mind I’m not trying to attach monetary value to the act of taking care of a family member or friend, but taking time off of work or quitting your job to take care of someone is a HUGE decision and can certainly alter your financial situation).
Having gone through the situation I did, I’d be more than happy to have an open discussion with anyone who is curious about becoming a caretaker, or anyone who just wants to discuss cancer/illness and how much is SUCKS. I’m an open book. Hit me up in the comments.