How Cancer Is Teaching Me To Be a Better Caregiver

Over the past few years, my husband and I have marked the passage of time through varying diagnoses and treatments that have woven themselves into the fabric of our lives. This year, we added ‘you only have two years to live’ to this calendar of events.

It was a trio of tragedies that day, the 20th anniversary of Hurricane Katrina fell on the same day that a burst pipe flooded our basement, and the doctor informed Scott that his cancer had now spread outside of his colon.

For four years, he has been a warrior through chemo, radiation, and surgery. Each challenge has exposed unknown strengths while living with stage four cancer. But now we must admit that each battle is only a brief respite, and we will lose this war in the end.

Supporting a partner and managing a dual diagnosis

I try to understand what he is feeling, and in a small way, I do. Shortly after his first round of chemo was finished, I learned that I had a cancerous lesion in my rectum and a squamous carcinoma on my tongue. Two people, two cancers, and we somehow had to learn to care for each other amidst all the nausea, doctor's appointments, and uncertainty about what would happen.

When Scott first received his diagnosis, I tried to pull on the lessons from my past to help him navigate what was happening. I wanted to attend doctors' appointments, I tried to introduce lifestyle changes and exercise routines, but he resisted the things I was offering him.

Every caregiving experience is unique

I thought I was prepared for this caregiving task. At 13, after my mother suffered the first of many strokes, I spent much of my teenage years looking after her. And then in the '90s, when my then partner developed AIDS, I cared for him until his death at 33.

But Scott was neither of those people. He was still strong and wanted to assert his control over the situation. It took me a while to realize how important it was that he face things on his terms.

I now understand that he knew one day he would not be able to do things for himself, and he wanted to remain independent for as long as he possibly could. This has allowed me to retool how I am approaching helping him as he goes through this third round of chemo. While I’m not a professional, some reminders have helped me a great deal, and I thought I would share them here for anyone on the same journey we are.

Ask questions to provide better support

When we meet with the doctor, I consciously put my need as a caregiver first. What do I need to know to help him make the best decisions possible? What outcomes and potential side effects can I expect to help him through?

This requires removing my own anxiety from the dialogue. Once I get into a mindset where I am not scared to face tough answers, I can begin looking at things from every angle. This includes supporting his mental needs will be, as well as his physical needs.

The importance of active listening

When he wants to talk, I stop what I’m doing, take three deep breaths, and pay attention. During these conversations, I will learn where he is, what he needs at this stage of the process, and what questions I need to ask the next time we have a consultation.

Having my own health concerns, along with the additional burden of running the home and a full-time job, can sometimes put me in a place where I can barely handle more information. But if not me, then who? By listening, I learn what the genuine concerns are and not just what the inner voices are pushing into my head.

Anticipate his needs before they're voiced

Asking and listening are great ways of learning what someone needs, but we also already know what will make things easier for them.

Every day, I take two minutes to make the bed so it feels fresh if he has to lie down from the nausea. When he comes home from a treatment, I bring him some water and medicine, his earbuds, and the TV remote, because I know those are things he wants but doesn’t always have the strength to pull together as the chemicals flood his cells.

I also know that there are days when he will want to sit and be quiet. It doesn’t mean anything is wrong. It’s not about me. He simply needs some quiet time.

Encourage activity and joy

While it’s essential to give him that downtime, as soon as I see his energy returning, I start pushing him. I ask him to do a chore around the house. I talk to him about the paperwork that still needs to be completed. I drag him to the park to walk the dogs.

I also make time to spend with friends, watch favorite movies, and sometimes dancing around the living room like a fool so that he laughs and forgets for just a moment the cancer that is killing him.

My life has been filled with so many battles, and each one has added to the litany of ‘superpowers’ that people living with chronic diseases must call upon. HIV taught me that we only have the moment we are living in now, and that we have to live it fully. Cancer has reminded me that I am stronger than I think. Being a cancer caregiver for Scott is teaching me that I still have much to learn.