Cancer Diary: Understanding, Accepting, and Coping with Stress

 

(diagram and contents of diagram from Beth Frates via Twitter)

Literature gives suggestions for caregiver as if life is calm and caregivers are never angry or stressed out (implying that it is wrong to be so). The reality is that even in the best of circumstances, i.e. the existence of good support systems, caregivers do burn out. Thinking that other caregivers do not and that it is wrong to be angry or somehow even to instinctively respond with an unkind word or behavior is somehow is unique and makes one a bad person creates quite a guilt trip later. 

In normal, circumstances, caregivers become sleep-deprived. Sleep deprivation leads NATURALLY to short tempers, frequent frustration, and, yes, bad decisions. Individuals' decisions that are made while sleep deprived cannot be thought of as intentional or well considered. At one point, I was so sleep-deprived that I fell asleep and drove off the road and into a field of cabbage (fortunately, I was not on a major highway), with my mentally challenged son sitting next to me, yelling, "Mom, why we go off road this way?" I was lucky. I only caused $1700 damage to the car (another source of stress: money and car repair) and early-harvested a few rows of cabbage; my son and I were unhurt.

While Carl was dying, I was providing all his care (a 300-pound, incontinent, wheelchair-bound man, who needed assistance in transfer to/from the wheelchair), care for my mentally and physically challenged son with breathing anomalies, who lived with us, care for my spina bifida daughter, 20 miles away, who had lost her caregiver due to covid, a situation that did not resolve until several months after Carl died, and care for three cats with cancer (one 18-year-old, Murjan, who died one month after Carl died, following three years on chemotherapy, another on immunotherapy, who went into remission and then was declared cured, months after Carl died, and one who simply needed some surgery and watching, all cared for by veterinarian specialists 40 miles away). We were 75 miles from the cancer center and the nearest hospital capable of the kinds of ER visits he sometimes needed -- no ambulance would transport him that far and so I would have to take him. No one from the cancer center was willing to come to our house and evaluate us for any kind of in-home assistance. We could not get hospice help without giving up treatment (subject for another post, for sure). We tried to get live-in care and turned Carl's office into a private bedroom/studio for that purpose, but during covid, there was no interest. 

Avoiding anger was difficult. It came with the territory. Anger at the situation. Anger at cancer. Anger, even, sometimes at Carl --- displaced, unfair, but erupting at the most stressful moments, particularly after several nights of 2-3 hours of sleep. Janice Snyder, psychologist, author of Survival of the Caregiver, and herself a long-term caregiver, claims, with evidence, that ALL caregivers experience anger at one time or another. To claim otherwise, she says, is either self-deception or a lie. (Pretty frank statement, but likely she is correct.)

When all is said and done, life is messy. Cancer makes it a lot messier. Cancer in a covid era has made it messier than could possibly have been imagined prior to 2020.

But, also, when all is said and done, life goes on. And we must go on, too. 

Understanding the nature of stress can help us control it better (not completely, but better), whether one is a caregiver, a patient, a family member, or a friend trying to help. I found the diagram above, posted on Twitter by Beth Frates, to be very helpful. (I find many of her posts to be very helpful -- calming and self-confirming.) I recommend that those blog readers who are on Twitter check out her tweets.

Blog editor's note: As a memorial to Carl, and simply because it is truly needed, MSI Press is now hosting a web page, Carl's Cancer Compendium, as a one-stop starting point for all things cancer, to make it easier for those with cancer to find answers to questions that can otherwise take hours to track down on the Internet and/or from professionals. The web page is in its infancy but expected to expand into robustness. To that end, it is expanded and updated weekly. As part of this effort, each week, on Monday, this blog will carry an informative, cancer-related story -- and be open to guest posts: Cancer Diary. 

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