Posts

Showing posts matching the search for karnes

Cancer Diary: When a Dying Loved One Does Not Want to Deal with End of Life Issues

Image
  When a dying loved one does not want to talk about the ramifications of dying is an issue I have been wanting to address for a time. it was a very difficult one for us. More than head-in-sand, it was a deliberate refusal by Carl, when he was dying, to become involved with completing really important paperwork, like advanced directives, will/family trust, power of attorney. It was as if he could avoid death by not talking about it. (Of course, to be fair in representing the situation, he found out from a fall, with no warning, that he had probably only days and weeks left to live. The local hospital said days; Stanford was more positive about taking steps to turn days into something longer.) Cancer Diary will address this topic again (and likely again). For today, though, I want to share Diane Hullet's Best Life, Best Death podcast interview with Barbara Karnes on these sticky end of life questions, from the point of view of hospice worker and family member. See related MSI Pres...

Cancer Diary: Blogs for Cancer Patients, Their Loved Ones, and Their Caregivers

Image
There is a growing number of blogs for patients of cancers and their caregivers. A number of them are listed on the webpage for Carl's Cancer Compendium (link below). Here is one of my favorites: Cancer Support Community  ( logo above)). While not focused in particular on cancer, Barbara Karnes blog on end-of-life issues is particularly relevant and very good:  Something to Think About: a blog on end of life – BK Books 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 ...

Cancer Diary: How People Spend Their Last Weeks

Image
  We only get to die once (well, usually, NDEs aside). How we die can be just as important as how we live. I wish that thought had been top of the mind when Carl was dying; we might have done things differently. It is not, though, that we did not have examples. We did, actually. Dottie, a dear friend from Massachusetts, had been my secretary when I was in the Army and then opened her house to me and my infant son when, during my later reserve days, the barracks would not allow him in because of his severe breathing issues from which he was in danger of dying nearly every day. (He survived, grew up, and, still with some breathing issues, is living a robust life.) Through all the intervening years, even after I moved to California, Dottie stayed in touch. Then, she got terminal brain cancer. After some initial surgery (and more planned, which, she feared, she would not survive), she decided that she wanted to spend the time she had left visiting all her family, which had spread out a...

Cancer Diary: "Caring for Someone Who is Dying Is Different from Caring for Someone Who Is Going to Get Better" (Karnes)

Image
  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 skill...

Cancer Diary: Saying Goodbye When Goodbye Isn’t Possible

Image
  Not everyone wins their battle with cancer. As painful as that is to say—and even harder to write—it's true. For those of us walking this road alongside someone with cancer, we carry hope, strength, and belief for as long as we possibly can. But sometimes, the ending isn't triumphant. Sometimes, it's simply… the end. That was the case with Carl . Carl had Cancer of Unknown Primary ( CUP ), one of the most elusive and aggressive forms of cancer. With no known origin, it hides in plain sight and resists targeted treatment. Fewer than 15% of patients with CUP survive beyond one year, a statistic that, while low, has improved considerably since Carl fought his battle. When Carl knew the miserable odds, he believed he would be one of the rare exceptions. He expected to win. That expectation, though inspiring in the early days, slowly became a barrier. As his body declined rapidly over five short months, the signs were all there: treatment wasn’t working, strength was fading, ...

Cancer Diary: Blogs with Real Answers to Caregivers and Family Members of Dying Patients

Image
  Although it is often difficult to find time to read while coping with cancer or providing care to loved ones with cancer, following one or more blogs on cancer and interacting with them can bring helpful information and peace of mind.  Here is a list of cancer blogs from the CCC. AONN+ Blog Meant for nurses, the topics in  this blog  are nonetheless helpful for any caregiver, such as this one on  compassion fatigue . There does not seem to be a search function, so you may need to sift through the topics to get to the ones you might find helpful, but the topics can be seen at a glance so it is not unduly time-consuming. Cancer Compass This is not a blog per se but rather an  informational message board  seeking to individualize and personalize information and care. Cancer Support Community Blog This blog  addresses specific cancers on a personal level, includes posts on multiple facets of cancer, and is very easily searched. (One cancer that it d...