The Caregiver's Spouse
Being the spouse of a caregiver has its unique set of fantasies and realities.
Posted Jun 20, 2016
Kim Hooper's debut novel PEOPLE WHO KNEW ME is the rare novel about caregiving that gets the details right. The Wall Street Journal calls it "Refreshingly raw and honest... [with] a sharp edge of emotional trauma and disappointment. It is very easy to love Emily―she is like any of us, struggling to make the best decisions she can. Ms. Hooper reminds us that control is an illusion, that the past offers no pardons and the choices we make, in turn, make us."
I'm so happy to be able to share an essay by Kim here, plus a short excerpt from PEOPLE WHO KNEW ME, published this month by St. Martin's Press. In addition, by clicking this link, you'll be taken to some interesting questions on her website that concern the novel but that may trigger some thoughts about what caregiving means in real life.
by Kim Hooper
When I first met my husband, he told me he wasn't sure he could be in a relationship because he had two sick parents and they were his priority. His father was dying of ALS and his mother was deteriorating quickly due to a somewhat-mysterious illness (some said Parkinson's, some said Lyme’s Disease) that was affecting her ability to walk, speak, and feed herself. They were both in their fifties.
They had divorced when my husband and his siblings were little. They had both remarried. My husband's stepmom took on caretaking for his father; his stepdad took on caretaking for his mother. Then his stepdad died suddenly--a heart attack while he was driving on the freeway, on his way to pick up prescriptions. With that turn of fate, my husband and his siblings became their mother’s caregivers. And I became a caregiver’s wife.
It was my husband’s stepmom who first introduced me to something she called Circle Theory. According to this theory, the person who is sick or dying, the person who has to admit the need for a caregiver (which, some say, is admitting the ultimate defeat), is in the center circle. The primary caregiver is in a ring surrounding that center, the secondary caregiver is in the next ring, and so on. They say, “Comfort in, complaints out,” meaning we should offer comfort to those in circles more inward than our own, and complain only to people in circles farther out.
This simple theory makes sense, of course. But it is, still, just a theory. Reality can be more complicated.
I would be lying if I said I always offered my husband comfort and never complained while he helped take care of his mom. I’m not that perfect. There were days when I cried to him. There were days when I lamented the loss of “our life.” There were days when the financial burdens seemed overwhelming. Thankfully, we had family support and resources available to help us. Not everyone does.
In my novel, People Who Knew Me, I placed a young couple, Emily and Drew, in the difficult situation of taking care of Drew’s ailing mother, without any support or resources. I’ve had readers in other countries say, “But doesn’t the government pay for care?” Unfortunately, no. There are some Medicare benefits available, but full-time care is not covered. As debates about healthcare heat up this election season, this remains one of my hot-button issues. It’s my hope that one day, a storyline like that in People Who Knew Me will seem obsolete.
In the book, Emily and Drew’s marriage is strained by Drew’s caretaking responsibilities:
“He was spending his days doling out nutritional supplements because she’d ditched conventional medicine in favor of holistic promises. He was cleaning the dirt from under her nails, shaving her armpits, cleaning out her ears with Q-tips, cutting up her food into tiny pieces like moms do for toddlers. He said just wiping up her drool was a full-time job. She was always drooling. The week before, she was sitting on a footstool, just a couple feet off the floor, and fell forward, busting open her nose because she didn’t have the dexterity or strength in her arms to stop the face-plant. Drew said, ‘It’s a good thing she didn’t break her nose,’ but I thought maybe it would have been a good thing if she had broken her nose. Maybe a doctor in the emergency room would have talked sense into everyone this time, insisted on professional care. I’d told Drew that’s what she needed—a professional. He’d said, “Do you know how much that costs?” and I didn’t, so I’d shut up.”
It’s that strain that sets the stage for Emily’s choice to leave New York, faking her death on 9/11 to start a new life in California. Dramatic? Yes. But the emotional and financial difficulties of caregiving are also dramatic.
It’s been almost three years since my father-in-law died and almost two years since my mother-in-law passed away. With the benefit of hindsight, I can see how this was a phase of our lives. I can see how naïve I was, how I lacked perspective. I can see how it made us stronger, just as the clichés promised it would.
The role of the spouse is a difficult one. You want to help, but you don’t want to interfere. You know your feelings aren’t priority, but you still have them. You can’t help it. Your life is affected, too. It just is.
Writing about Emily and Drew helped me realize something: Circle Theory doesn’t have to apply to spouses. The communication between Emily and Drew broke down because they didn’t sit with each other and say, “We both need comfort. We both need to complain.” Instead, they went to their own corners and wallowed in self-pity, in a silent competition to prove who had it worse.
Marriage is a partnership, even when one person is the primary burden-carrier while the other looks on. Marriage is about walking more miles in your spouse’s shoes than in your own. It’s not just about tolerating the “worse” referenced in “for better or for worse”; it’s about being honest with each other through the worst, comforting and complaining your hearts out, all the while trusting that, eventually, you’ll look back on everything and say, “We made it.”
Visit Kim at her website KimHooperWrites.com