J. Michael Jones

I will start with a statement that many will take objection to. The spouse, parent, child, or significant-other of an ill person has no obligation to take care of that person. Yes, there are some societal expectations, but no, true obligations. I say this with confidence because I’ve witnessed several times where the significant-other person (including spouses) walked away after a terrible diagnosis of their loved one.

In one case, I remember a 34-year-old woman crying in her hospital room. She was acutely ill, having just been diagnosed with acute leukemia. She shared that morning that her boyfriend, who she had been living with for several years and who had been in the hospital with her the previous two days, had announced to her the previous night that he was leaving her. This new diagnosis was more than he could bear, so he was getting his stuff out of the apartment and leaving.

Closer to home, one of the men in my Multiple Myeloma online support group, shared that his wife of 28 years did the same to him. He is in—almost—the same place I am with the disease. He is newly diagnosed and facing this daunting course of chemotherapy, followed by stem cell transplant. I don’t think he has renal failure and having to do dialysis. His wife, like the previous described boyfriend, said it was more than she could handle, and she was leaving him. She wanted out before the difficult course began. I felt grief for him.

I know of countless cases where children of an ill parent quickly puts them in a skilled nursing facility at the slightest inconvenience of care. Certainly, there is a place for these facilities but these adult children, which I’m talking about, made no efforts to help their parent but kept a distance and made the choice to not be involved.

My mother, and aunt (my father’s sister) were caregivers to my father. He was more than most could bear, physically. He was about 200 lbs, six foot and immobile. He was suffering from a brain injury after a fall, followed by a terminal lung cancer diagnosis. My mother’s interpretation of her marriage vows was that no one would take care of her husband, except her. This would be true as long as she had the strength to stand and the air to breath. I didn’t agree with her and wanted to get in-home help, but she would have nothing to do with that.

I’ve made it clear to Denise many times that she is not obligated to walk with me on this journey. I’m serious about this. I can make it on-my-own, barely. To her, such an offer of release seems absurd.

Multiple Myeloma, like all cancers, is intrusive. It has totally disrupted my life, ending all thoughts of a good future. It has taken away my career, my financial security, well-feeling, and practical hope for normalcy. It has done all those things for her as well, but for her, it is an issue of choice. She could go her own way and leave me. At least she could stay married to me, but still save her career, her hobbies, her friends, and let the medical system take care of me. She has, of course, chosen not to go that path.

The cost to Denise, expect for the physical discomfort, is the same as the cost to me. The disease intruded into the tranquility of her life like it did mine. The difference is, she has entered this nightmare willingly. There is something about heroism, where the level of valor is measured by the individual’s freedom to choose the hardship. As I’ve said before, I am no hero because this came upon me without a choice. My choice it is between trying to live or die and the difficulty of each is severe.

Within this gloomy darkness, I am deeply blessed and feel equally loved. How could I ever repay her?

Mike