MSI Press Blog

There are salt lamps glowing in the bedrooms again. For five long months, their light bulbs burned out one by one, quietly surrendering to the dark as I didn’t have the time — or the clarity — to replace them. There was no time for anything outside the urgent, consuming task of caring for my husband Carl as he moved through the final stage of his life. It started with a fall. A routine day, until it wasn't. Tests led to more tests, and the doctors came back with something I wasn’t prepared for — stage 4 cancers. Not one, but five: liver, lung, skin, bone, and stomach. Cancer of unknown primary. Nothing they could point to. Everything failing at once. He lived five more months. At first, we tried chemotherapy. When it failed, we shifted to palliative care. I say “we,” but it was me who made those shifts, who bore the weight of each medical decision, each adjustment, each indignity he faced. And it was me who stayed awake at night, while others slept, making sure Carl didn’t fall, di...

  Cancer, like other debilitating illnesses, require immense effort from those taking care of the cancer-stricken patient. This effort can be redoubled and accompanied by a range of personally invested emotions when the caregiver is a relative, particularly a spouse. Cleveland Clinic says"  Caregiver burnout is a state of physical, emotional and mental exhaustion that happens while you’re taking care of someone else. Stressed caregivers may experience fatigue, anxiety and depression.      To that, I would add anger -- followed by remorse. In waves and cycles. Never feeling good about yourself. And then feeling guilty from the sense of relief after the cancer-stricken relative dies. Being able to understand oneself and forgive oneself can lead to stabilization and at least some aspect of comfort (unfortunately, often months after the patient has died). This article can help wtih the understanding and forgiving part:  Caregiver Burnout: What It Is, Signs Yo...

  Today would have been the 54th anniversary for Carl  and me. Last year, I spent it in the cemetery with Carl, as I did the year before. This year I cannot because I am in Bandung, Indonesia, but perhaps that is just as well.  On our 51st, he was alive, but not well. Three weeks earlier, he had fallen, been xrayed, and found to be in the advanced stage of cancer of unknown primary , with liver, lungs, bones, and stomach completely riddled with cancer cells, blood clots in his lungs, and his bones throwing off cells to create hypercalcemia, the reason he had fallen. It was a difficult time. We were just coming out of the covid months. We brought our CHARGE Syndrome son CB who had been living in group homes for 20 years home when they were not careful with protection from covid. At the same time, our spina bifida daughter, who lives about 30 miles to the south of us, independently, with a county-provided part-time aide lost her caregiver to surgery and no one wanted to tak...