Cancer Diary: "Caring for Someone Who is Dying Is Different from Caring for Someone Who Is Going to Get Better" (Karnes)
I have raised two children who were not supposed to live because of the type of birth defects they have. Today, both are in their 40s. I know how to care for someone whom I honestly believe will -- and who does have a hope to -- get better. There was always the struggle of making sure they got the meds they needed, that they did the kinds of activities they needed to do, that their father, Carl, and I researched everything that was going on in medical research about their defects and brought it up to their doctors, and that we interacted actively with all specialists working with them, asking for clarification for us at time and for them at times, ensuring that they knew as much or more than we did. It was purposeful care that had an expected point of diminishing need, with the reins turned over to the children as time passed. Time, then, was a positive. It allowed us to build a brighter future than an initial diagnosis proposed. Things got better over time. The kids gained skills and knowledge and independence over time. The burden on our time got less over time. We began to sleep more over time. We began to feel relaxed about every tomorrow over time.
That caregiver experience in no way prepared me for caring for Carl in his final days. The diagnosis -- terminal cancer, stage 4, unknown primary -- came just as suddenly as did the kids' diagnoses. It was just as unexpected as with the kids. But, while I generally know how to care for someone whom I believe will or can get better, I had no idea what to do for someone who likely will not or cannot. In the beginning, we both treated the diagnosis as simply a label and went about doing what we did for the kids (well, mostly I did the doing) -- fighting, going for the meds, doing hours of research, asking for clarification, and so on. However, with the passing days, the purpose of the care became less and less clear -- it was not for a hopeful, better future; it was to at the very best maintain the present, which was already bad. Time, then, was negative. Over time, we were not able to improve on the diagnosis as Carl steadily declined. Over time, he lost skills and independence. Over time, the burden on my time grew. I began to sleep less and less. With the increased burdens of compensating for Carl's deteriorating skills and growing dependence, I grew less and less relaxed about tomorrow. Adding to my stress, which, of course, had an additional negative impact on the quality of care I was able to provide, was Carl's intransigence -- not wanting to hear what he was being told about inevitability, not wanting to hear my pleas that he needed to sign a power of attorney, will, and other end-of -life documents (that took the intervention of an attorney). I, too, did not want to hear that perhaps hope was far smaller (actually, non-existent for CUP), but I did know, realize, fear that if he were to take none of the necessary end of life steps, his family would be in deep trouble after he died. Fortunately, we got over that hurdle -- but he did not want to hear to look at that option, only at the option that he would stabilize at some managable level (in spite of losing independence week after week, very clearly).
Barbara Karnes, hospice expert extraordinaire, is correct in saying that caring for someone who is going to die is very different from caring for someone who is going to live. "How do you tell someone something they don't want to hear?" she asks--and answers HERE.
For other Cancer Diary posts, click HERE.
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 CCC 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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