Carers and Carers
on being a chronically ill carer with an acutely ill partner
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During the medical crisis that my family is currently going through, the schedule is a bit off. I hope you’ll understand.
December. The wind sluices like ice even though it’s only 40 degrees and I was born in Michigan, long-lived in California. Sitting on a bench in front of the hospital, I wait for a car to pick me up. I’d thought that with three dresses on top of one another, I’d be warm enough to tolerate the cold until I could climb inside the rideshare, but I was wrong. I am very cold. The air bites but I can’t say exactly where it’s biting. (Say where the pain comes from, or is the pain radiating?)
C is still in the hospital. It’s been a week since we first checked him in because on top of his severe neutropenia (a condition in which a person has a low number of white blood cells called neutrophils, which are essential for fighting infection; <500 per microliter is considered severe neutropenia, and he has been at zero since early November), pain management for his mouth had become impossible at home. I’m glad he’s in the hospital because they can care for him in ways that I certainly can’t at home—prescribing things at the drop of a hat, sending specialists, bringing him his complex series of medications, infusions, and treatments when he needs them, and so forth. My job now is to come in the morning and take part in the doctor’s rounds—asking questions and taking notes so that the family can be updated—and to spend the rest of the day keeping my beloved company. When it gets dark, I take a rideshare home and try not to cry; adrenaline keeps me going all day, but when I’m alone, I’m terrified and exhausted, and I hate how the doctor refers to his case as a “medical mystery” every morning because it reminds me that he seems to be getting worse, but no one knows why. He has been an odd duck ever since being diagnosed with cancer last year, exhibiting primary symptoms not ordinarily associated with his type of bone marrow cancer, but I don’t want him to be this kind of odd duck, where they don’t know exactly how to help him.
But his spirits are good, which I think of as a good sign, and our time together is sweet. Unlike last year, under which we were under very different circumstances while he was hospitalized in the Bone Marrow Transplant Unit, I am able to climb into bed with him and watch “Dune: Prophecy” on his iPad or simply sit in silence together and draw birds. Because his mouth is painful and talking is often difficult, we do a lot of things that don’t require him to speak. Yesterday, right before I left, I read to him a passage from Small Rain, the newest novel from pal and genius
, and Chris nodded vigorously along to the pieces that he could relate to.It’s strange to be a chronically ill person who is used to being cared for by her spouse and then to find that spouse becoming critically ill himself. I am now the carer, even though nothing has really changed about my own chronically ill nature.
The final night that I valiantly tried sleeping in the hospital room, C had to wake me up because I was having nightmares about being sliced into pieces while still alive, and crying out in my sleep as I tend to do when I have nightmares. “You owe him,” my mother said to me last year, and this year again. Because after this many years of me being the sick one, and C being the hale and hardy one, he is now the sick one, with the Biohazard plastic goofily taped onto his arms to protect his picc line from getting wet during a shower. Before the cancer, he was so rarely sick, only getting colds here and there, and I was so consistently sick.
Now we are two sick people who love one another. Only in our early 40s, I keep thinking; this is not the time I envisioned this happening. His form of cancer is usually found in people in their 60s or 70s.
Please don’t let the worst happen. I need so much more time, I find myself thinking in the dark on the way home, and then I stop myself from thinking because I can’t bear to keep thinking it. The approach is to laugh and joke and cuddle and be with one another while we can, and to be optimistic because the doctors encourage us to be optimistic. People pray for us, and I pray, too, even though I, who was raised without religion, feel hapless at prayer.
I was scheduled to go to a retreat for women survivors of child sexual abuse in two weeks, but I don’t think I’ll be able to go. I haven’t canceled it because I haven’t done anything administrative or “useful”; I owe many emails and my to-do list has become as long as the Great Wall of China. The idea of spending intentional time thinking about (and trying to heal from) terrible things from the past seems preposterous when there are already terrible things in the present that need my attention. How would I do it? I would be too worried about C; even if he miraculously began to recover, I would worry about his aftercare and any chance of relapse.
He is the priority, and I will keep being there.
I recently found a copy of C’s wedding vows, which he wrote himself in a notebook with an owl on the cover. On that beautiful day, C said to me and everyone, “I’ll love you till I die.” He said it again last night in a text message.
“No,” I said, “not for a long, long time, please.”
“Of course not. Too many books to read,” he replied. “I’m so behind.”
From Small Rain, I read last night to him:
But I’ll be coordinating your care [said Dr. Ferrier], and here she held up her badge, which she wore in a little plastic pouch that hung on a lanyard from her neck, and said her name again. If you forget it and need me to tell you again, that’s fine, I know how disorienting this is, it’s not your job to worry about anything, she said, your job is to relax and let us do the worrying.
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This is such a beautiful, heartfelt, engrossing post. I send my prayers for comfort, healing, and miracles as well as a virtual hug from Arizona. I have some idea of what you're going through. I have been chronically ill for 37 years, and I was used to my mother being my mother, friend, financial provider, and carer. Then she got breast cancer, and although I still needed care, I had to help care for her until her death in January. She was my whole world, and I have been so utterly lost without her. I am deeply in debt and without an income at this time, or I would also upgrade to paid subscriber.
It’s beautiful how we can show up even as we need so much ourselves.