Confessions of a Cancer Caregiver

[Photo: Amanda and her late husband on their wedding day]

I was 28 years old when my fiancé was diagnosed with colon cancer. We headed into the emergency room just two months before our wedding, he was having pain I was sure was caused by his excessive pizza eating, beer drinking and ball-of-stress attitude.

I’ll never forget that day. I heard the word “cancer” and had my “happily ever after” ripped from my hands. Doctors and nurses explained that a “mass” had been found. They talked about different stages of cancer. There were times for surgeries, colonoscopies and IV pain meds.

I heard nothing but the tears dripping down my chin.

“Are you his caregiver?” a woman asked as she took down my information.

The word enraged me.

Caregiver? I’m not old.

In fact, it’s quite the opposite, if anything he takes care of me. Yes, that’s right, he’s my caregiver, you can write that down on that little form, lady. He packs my lunch and sends me reminders if I’m dangerously close to overdrafting my bank account. I’m not responsible enough for this job. I never applied for this job.

A caregiver? That’s for adults. I’m not even understanding the words people are spouting at me, how can I make these decisions.

“I’m his fiancé.” I answered.

“Do you have a living will?” the questions continued.

“Are you insane?” I thought.

So, there I stood. I suddenly had a new job title, like it or not.

We made it through surgery in time for our wedding and for me to get the title of “Mrs” that I longed for. Instead of heading to our honeymoon, we went to the beautiful suites of hotel chemo.

Caring for my sick and dying husband was the greatest honor of my life. Caring for my sick and dying husband was also the greatest heartache I’ve ever had to bear.

It’s a thankless and horrific job and one I’d do one million times all over again.

These are the confessions of a caregiver.

When applying for the job no one would ever apply for, there are a series of requirements you’ll need:

• You are the nurse, handing medications at home and reminding a chemo-brained man to take the right pills at the right time.
• You are the chauffeur, driving to and from chemotherapies.
• Secretarial skills are critical; as you’ll be keeping record of appointment times all while balancing your own work schedule to make sure your family’s health insurance stays active.
• A background in psychiatry is also a plus, as you are the one person that will know the lowest of lows and darkness that comes with a cancer diagnosis. It will be your job to alert doctors when your loved one does not feel it pressing to do so. You’ll ask for anti-depressants and anxiety medications to help calm the nerves of someone facing days of sickness (and maybe ask a different doctor to prescribe Xanax and a sleeping aid for you).
• Public relations skills are a plus in this position, you’ll need strength to ward off friends and family members who will want to put their own spin on the news from doctors. “I read online people only live two years with this cancer,” an email from a well-intended relative reads; you’ll write back “F*CK YOU…. , then you’ll pause and be wise enough to quickly delete and try again with a proper response about faith, miracles and hope.
• A work/life balance will seem impossible but at times you’ll need to take off your caregiver cap and remember how to be a wife. You’ll crawl into bed with your napping husband and stick your nose in his neck and try and memorize the smell.
• You’ll turn chemotherapy days into coffee dates. You’ll surprise him with fancy new headphones so he can block out the noise of the other patients in the room knowing he hates when people talk to him.
• You’ll need to be a fighter. You’ll fight right along side him to try and beat cancer. You’ll fight with him, because let’s face it, he’s still your husband and a pain in your tush.
• You will love harder than you ever have.

My husband fought cancer for three years before he died in November 2014. And it’s only now I wear the title of “caregiver” like a badge of honor.  I was with him until his final breath and for me it is the most beautiful gift I know I could have ever given him.

As my caregiving turned into grieving I have found one line that sticks with me. I found it while searching the internet feverishly in the middle of the night, hoping that google could give me any kind of guidance to numb this pain. Then, there it was and I knew the job I never wanted, made the biggest difference.

“I was supposed to spend the rest of my life with you, and then I realized, you spent the rest of your life with me.”

 

Amanda Evans-Clark is a former TV news reporter turned blogger. She loves sushi, lipgloss and life with her very sassy toddler.  Amanda is an advocate for caregivers after losing her husband to colon cancer and becoming a widow at 30 years old.  She turned her pain into purpose founding The Cocktails & Chemo Foundation, a non-profit dedicated to helping caregivers.