Conflicting Emotions are Normal
She breezed into the house, shrugging off her backpack and setting down her cappuccino. We'd known each other for a number of years but hadn't clicked as friends. She was one of my wife's school chums, after all, and it was her she came to see. There were a few moments of the hushed conversation I'd grown accustomed to since hospice came into our home. Then, she crawled onto the hospital bed and snuggled between my wife and the wall.
We'd set up the family room as her hospital room so she could enjoy the many people who came to see her and be with the family members that flew in from different parts of the country. With mixed emotions, I watched her friend cuddle her.
It wasn't that we didn't get along. I worried about my wife's physical comfort. I administered oral morphine, but the pain from metastatic breast cancer never fully subsided. As I watched how she reacted to this physical contact, I questioned myself. Why hadn't I thought of this? We'd been together 21 years and were extraordinarily close. Still, I asked myself why I hadn't gotten onto the bed and held her like that.
Jealousy vs. self incrimination
Throughout my years as a caregiver for various friends and family members, I've come to learn that many cancer patients can't tolerate extended physical contact. Whenever I was ill and in the hospital, I hated it when people sat on my bed, causing it to jiggle or bounce, along with my surgical wounds.
I often wondered why so many people didn't understand that some patients have personal boundaries. But there she was, cuddled by her friend. I wasn't jealous in the romantic sense. I felt irritated as I chastised myself, jealous that I hadn't thought of it first.
After her friend left, I asked my wife how she felt about it. She said it was the best thing that had happened since she entered the final stage of advanced breast cancer. Of course, I still showed her a lot of affection after the hospital bed arrived. I held her hand and kissed her, gave her massages and personal grooming treatments, and hugged her from the shoulders up, but I hadn't fully embraced her for fear that I'd hurt her.
When I asked her if it hurt, she said it was worth the pain to have somebody hold her. Oh, man, I felt terrible. From that point on, until her death, I got on the bed with her for a little while every day, and I received sweet healing as much as she did. These are precious memories now.
Caring vs. resentment
Providing cancer care during the Covid-19 pandemic was difficult. Sanitizing everything that came into the house – groceries, clothes, myself – was the worst. It was time-consuming and frightening, but I couldn't risk bringing it home whenever I ventured out. Then, despite all of my careful considerations, we both tested positive, and I found it impossible to take care of myself properly. My wife was at a much greater risk.
Friends brought us meals, picked up prescriptions, and ran errands for us for two weeks until, at last, I was able to get back to my role as caregiver. I felt bad, however, for the resentment I carried inside me, not over my wife but over the crap show, our life had become.
Providing cancer care
It's easy to get so caught up in the physical care of someone that we forget about the personal side of things. There's more to caregiving than administering medication, bathing, feeding, and changing sheets. There's staying positive, smiling, swallowing down our despair, and giving moral support. This causes conflicting emotions.
We get tired. We don't go out. We don't sleep much, and when we do, it's with one ear open. Exhaustion permeates every part of our being. I often found myself overthinking and chiding myself.
If I did more, she wouldn't be in pain. If I drink more coffee, I'll always be alert. If only I weren't so burnt out, I might not be so selfish.
Don't beat yourself up. You matter, and you're learning, too, and one day this will end. I remember, when I was fatigued and in pain from my own physical disabilities, I mentioned that there was no happy ending for me in our love story.
Of course, I immediately got angry at myself for indulging in my brief moment of self-pity. Her response was to hold my hand and say she understood, asking me to share with her everything I felt. I couldn't tell her that one minute I wanted to hold onto her, keeping death at bay, and then in the next minute, I wished it were all over. But these conflicting emotions are normal.
You are enough
If I've learned anything about providing cancer care for a friend or family member, it's that we constantly balance two states of mind. We don't want to lose them, but we also wish we could have our own life back. It's okay. It's natural and normal to have conflicting emotions during extremely difficult times.
As time goes on, we remember the beautiful moments and emotional rewards that come with being a caregiver. Eventually, we find a new normal, although it takes some time. Don't condemn yourself for it. You're doing the best you can, and you are enough.
Have you ever changed your treatment regimen because you were experiencing side effects?