SHIFT: Talking about how hard it is to be a caregiver isn't a sign of defeat

From grief and anger to mental and physical exhaustion, caregiving is an endless hurricane of emotions that threaten to take you down at any minute.

Lisa Machado 8 minute read April 30, 2022
hands holding a heart

Most people become caregivers out of a "moral imperative." GETTY

“It’s like staring down the barrel of a gun.”

This is how a man named Gary described his experience taking care of his wife, Martha, who had ovarian cancer. I met him in the waiting area of the blood lab at Toronto’s Princess Margaret Cancer Centre a few years ago.

When a nurse came out and yelled, “45, 45, 45,” as her tired eyes scanned the room, both Martha and I stood up, clutching the tiny square pieces of paper we were given when we checked in. Strangely, we had the same number.

“Must be a sign,” Martha said in a raspy voice, as the nurse led her into one of the many rooms used to take blood. “You’ll be 46,” the nurse said to me.

I sat back down beside Gary, who seemed to be around 80. He introduced himself and then said that I should buy a lottery ticket. “I mean, how often do the same numbers come out of the machine?” he laughed quietly, fiddling with the shiny blue suspenders that stretched over his oversized red flannel shirt.

“Whadda you in for?” he asked. I told him a little about my story, which seemed to make him sad. He said that cancer was a killer of everything, and he patted my knee.

“I’m not complaining. It’s just… hard”

He told me about how his wife had been ill for months, and that they no longer went to bingo or to Sunday tea with their friends because she was too tired. And that he didn’t really eat anymore (“She used to make me the best grilled cheese sandwiches”) or clean (“With my bad back, dishes are hard”) or laugh (“She had the best laugh”). He also described how they slept in separate beds because any movement caused her pain. Instead, he slept on the floor beside her bed, waking often to check on her.

“She doesn’t know I do that,” he sighed. “I sneak in after she falls asleep. She would hate it. I am so tired.”

He also talked about how cancer had not been in their life plan (“She is only 78!”).

“This was supposed to be our year,” he said, describing plans to travel to see grandkids and take a cruise. “We thought we’d try one of those tiny house things too, somewhere out West. But we probably won’t be able to do that now.”

He took a deep breath, wiping away what I suspected was a tear. “I’m sorry, don’t get me wrong,” he said quietly. “I’m not complaining. It’s just… hard.”

I saw Gary just a few more times in the clinic. Martha was thinner each time and less quick to smile. We never got the same numbers again.

At the time, my father was in long-term care and my mom had the gruelling role of his primary caregiver. She went to see him every day, making sure his hair was combed and his teeth were brushed. She’d feed him his meals and take him out into the garden for some sunshine — often, by the time she got home, she would fall into bed, too exhausted to eat, only to wake up the next day and do it all over again. There was no time for socializing, or exercise or making nice meals — all the things she enjoyed before he got sick. Her friends would tell her that she wasn’t taking care of herself, ask why she had to see him every day, and the worst — that if she skipped a day, he wouldn’t know the difference anyway.

But she would know.

I also spent a lot of time with my dad. It was hard to visit, to see him slowly slipping away and then, in the midst of this grief, to constantly have to advocate for everything, from getting the heat turned up in his room to convincing the staff doctor to check his temperature. But it was hard to leave, too. Because when I wasn’t there, I worried about what was happening — was he being treated respectfully? Did he think we had abandoned him? Was he afraid? And no matter how long I stayed, or how much I did, I always had the feeling that I should have stayed longer and done more — after all, he was my dad.

It’s part of what makes caregiving so damn difficult — it never feels like you are doing enough. It’s just one in an endless hurricane of emotions that threaten to take you down at any minute. It’s what brings on tears suddenly and the breathtaking sensation that you can’t possibly make it through another day. From the feeling of guilt that certainly you could do more and the sadness of watching a loved one suffer, to the frustration of knowing you can’t stop what’s happening and the sheer physical and emotional exhaustion, caring for someone requires you to dig deep on so many levels.

In fact, you could argue that the hardest part of caregiving is what it does to the life of the caregiver.

Like Gary, and so many others, my dad’s illness also wasn’t “in the plan,” and it changed everything for my mom, and our family. And whether the caregiving lasts for a short time, like say, with a treatable illness, long-term with a predictable ending, as in Gary’s case, or life-long, such as caring for a child with developmental challenges, it makes perfect sense that this role would be difficult and awful and hard, and yet we don’t have words for this aspect of what is arguably one of the hardest jobs in the world. We certainly don’t give caregivers the space they deserve to share these it’s-so-hard-to-be-a-caregiver feelings without judgment.

So we leave them to toil away in silence, grieving the loss of the life they once knew, or once envisioned, as they take each day one at a time.

Or not.

Years ago, I was visiting a man who was recovering from a bone marrow transplant. He had several complications which meant a long road ahead of rehabilitation and further treatments. As I stood outside the glass doors of his room waving — he was in isolation — his wife quietly told me she would be filing for divorce.

“I didn’t sign up for this,” she said, with tears in her eyes. “And I know I can’t do it.”

It sounded awful and selfish, and say what you want about her lack of commitment to her husband, her integrity or even her inability to simply care for another human being who is struggling, but as cold as her decision may seem, it reminds us that sometimes it’s important to weigh your own needs with the needs of the person you are caring for. And if you can’t find a balance between the two, perhaps it’s better to back away slowly.

Most people become caregivers “because they feel a moral imperative to do so,” Deborah Colgan writes in Today’s Caregiver. This often stems from family relationships and roles, she says, as well as friendships and social expectations. But saying no, not necessarily to all care, but maybe setting boundaries, can “save the caregiver from emotional and physical burnout” — the signs of which include, “avoiding the loved one, anger, fatigue, depression, impaired sleep, or that terrible sense that there is ‘no light at the end of the tunnel.’ These feelings are important warnings, she advises, that the caregiver needs a break and some support.

But how often do caregivers say they need a break or even ask for help? Not often, which brings us to the other complicated aspect of caregiving. Caregivers often reject offers of help, and they don’t ask for help because sometimes they don’t know what they need, but more often, they don’t want to be a bother or they feel badly that they can’t do it all themselves. And you wouldn’t be wrong if you thought it horribly unfair that on top of all the pressures already on a caregiver — the guilt, the grief, the exhaustion — they have the additional stress of feeling like they can’t, and shouldn’t, ask for help when they need it. And for those of us who know a caregiver, how many times have you offered help, and easily took no for an answer?

This is part of the reason we launched our new caregiving series, How I Care — to give a voice to the lives of so many people who care for others. We hope to uncover not only the challenges of being a caregiver, but also explore how caring for someone changes you deeply. We also want to know how more about where caregivers find joy and how they recover from lows, and what lessons they have learned. Plus, we want to give the non-caregivers of the world insights into what it means to be a caregiver, as well as ideas on how to support those who reject offers of help, even when it’s painfully obvious they could use a hand.

We did all of this and more in our first story — beautifully told by Lynn Daigneault, who lost her husband to lung cancer last year. Have a read, I promise you will be moved. And if you are a caregiver, or have been one, we’d love to tell your story too. Send me an email at lmachado@postmedia.com.

 

Lisa Machado is the executive producer of Healthing.

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