Only Human: On camels, caregivers, and other beasts of burden

  • Joan Axelrod-Contrada and Rio Contrada look over pictures with Fred Contrada in Fred’s room at the Atrium in Agawam in 2018. Gazette file photo

Monday, April 18, 2022

Sometimes I hear a song, and it hits me so hard I need to know the story behind it.

Such was the case with “Beast of Burden” by the Rolling Stones. So I Googled it and quickly discovered that Keith Richards came up with the idea after a period of heavy heroin abuse in the 1970s. The song announced his comeback. He no longer needed Mick Jagger to do all the heavy lifting.

The song brought back memories of a conversation I had with my son, Rio, after a trip he took one summer in college. During his time in Israel, he got to ride a camel.

“That’s so cool!” I enthused.

“Not really,” he replied. “I could tell the camel didn’t like it.”

His response surprised me. I had just assumed that camels willingly accepted passengers on their backs. Never had I thought they might not like it. How human-centric of me!

Several years later, Rio returned home to help care for his dad, who suffered from a degenerative neurological disease called frontotemporal dementia. Sadly, Fred was painfully aware of how disabled he’d become.

“I hate being a burden,” he said.

“You’re not a burden,” Rio replied.

I murmured my agreement. After all, I’d vowed to take care of Fred in sickness and in health. Love made caring for him a responsibility, not a burden, or so I told myself, anyway.

Before long, though, I realized that the line between responsibility and burden was drawn not so much by love but by the disease itself. Some illnesses are like sea monsters, threatening everyone’s survival on the ship of life. No matter how furiously Rio and I bailed, our vessel kept sinking.

Caregiving nearly killed me. One afternoon, I was so exhausted I fell asleep at the wheel of my car and crashed into a storefront. Miraculously, I escaped without a scratch. My brush with death prompted me to add my voice to the chorus of family caregivers, past and present, calling for more support for themselves and better options for their loved ones.

If ever I come down with a terrible disease, I hope to have the grace of a Rebecca Pearson, the matriarch of the award-winning TV drama “This Is Us.” Played by the luminous Mandy Moore, Rebecca, like me, loses her husband, Jack, to an untimely death. Sadly, years later, she is diagnosed with Alzheimer’s. One Thanksgiving, she gathers her family around her and gets all three of her adult children to promise to live their lives fully despite her disease.

I got teary-eyed watching the episode because, like Rebecca, I don’t want my children to be my beasts of burden. As a result, I’ve started cobbling together a plan to head up my own care as much as possible. I got myself long-term care insurance, had my house redesigned for aging in place, and appointed Cousin Caryl as my health care proxy.

Cousins are creatures like none other. They’re blood relations without all the competition and drama that come from growing up in the same household. Caryl lives in the Valley and shares my appreciation for our coterie of bright, spirited female friends.

I also have Rick, the World’s Best Boyfriend. He’s the kind of guy who knows how to cook and clean for himself, which makes him quite the catch. On top of that, he told me he’d be there for me if ever I got sick.

I want to be there for him, too — just not in a 24/7 kind of way. In my crystal ball, I see us showing up for each other with flowers, homemade soup and movies on DVD. Maybe, someday, we’ll end up in apartments next door to each other in some spiffy new affordable assisted living. A girl can always dream, right?

Rick gets it. Caring for his late spouse took a toll on his health, too.

Often, I think Fred would have been better off if we had lived in a country like Denmark that paid for extended care. Fortunately, I had the resources to pay out of pocket for private nursing, but not everyone is so fortunate.

At one of my reluctant camel lows, I blurted out, “I never wanted to be a nurse.”

Fred replied, “I never wanted you to be a nurse.”

Love streamed through every cell of my body. He understood! Then I dutifully got back to work.

Ultimately, we both needed our own life rafts. Looking back, though, I savor that one minute when love conquered all.

Joan Axelrod-Contrada is a writer who lives in Florence. She writes a monthly column for the Gazette that runs on the second Friday of the month. Reach her at joanaxelrodcontrada@gmail.com.