MSI Press Blog

  An Open Letter to Cancer Patients: Partnering with Your Caregiver Dear Cancer Patient, Your cancer journey is one of the most challenging paths you'll ever walk. As you navigate this difficult terrain, your caregiver walks beside you, sharing your burden and helping to light the way. Today, I want to talk about how you can work together with your caregiver to create the best possible care environment for both of you. First and foremost, please remember that your caregiver, while dedicated to your wellbeing, is also human. They experience fatigue, stress, and emotional exhaustion. Your kindness and appreciation mean the world to them. A simple "thank you" or acknowledgment of their efforts can replenish their emotional reserves and help prevent burnout. This is especially crucial if your caregiver is your spouse, who needs adequate sleep and rest to maintain their own health and continue providing you with quality care. Communication is the foundation of any caregiving r...

  One of the existential questions that we faced when Carl was diagnosed with terminal cancer in four organs, although it was not evident as a question until after Carl died, was whether we should focus on living (enjoying the life that was left) or staying alive (fighting death). For one reason another, in part waves of crises, we kept being pushed to focus on staying alive. We planned to do something special, even if small, every Monday--an attempt at living, and, darn it, every single Monday for those last five months of Carl's life, he ended up in the ER not because of doing something special but before we could do something special. Five months passed, and as I look back it, we were focused exclusively on staying alive. I wish we could have focused on living.  I was very taken with one young wife, who called herself Widow in Waiting on X, who somehow did manage to focus on living. Her husband was in the hospital more often than not. her posts on X were focused on living....

  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...

  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...

  Excerpt from Survival of the Caregiver Prologue This is not a technical book. If your loved one has Alzheimer's Disease, Parkinson's Disease, Cystic Fibrosis, Heart Failure, Diabetes, Cerebral Palsy, or has experienced depression, a stroke, spinal injuries or any number of other debilitating catastrophic illnesses, there are many books in the library that describe all the problems, treatments, and prognoses of each of these conditions. Doctors and scholars who have specialized in these illnesses write these books. There is valuable information to be found in these accounts, and you should avail yourself to the ones pertaining to the particular problems of your loved one. This is a book devoted to the caregivers of those with tragic illnesses. My twenty years of experience as a caregiver have given me many insights into coping with and surviving the problems that come with caring for an ill person. This book gives encouragement, along with valuable information I learned th...

  In March, Carl was diagnosed with advanced stage 4 (metastatic) cancer of unknown primary. In August, he died.  When we got the diagnosis, we had to choose a detour from our normal life. There was no way to move straight ahead with life as usual because, you see, there was this big obstacle, called cancer, straight ahead. So, the question was to detour to the left and choose a treatment option, hope, and focus on the living or detour to the right and let nature takes its course, choose to accept the situation at face value, letting nature take its course, and focus on the dying. To fight or to surrender? There was no logical superiority of either path, not knowing what lay behind the cancer tree and how long was the path for it  continued out of sight. We decided not through reasoning but through conditioned reaction to fight. That is what we had done all our adult lives, as we successfully navigated life for four children, two with rare birth defects, and three grandch...

  ANGER needs to be verbalized and needs an outlet. Show me a caregiver who says he or she never gets angry, and I’ll show you a liar or a saint.  Once, a patient who was 75 years old came into my office. She had been caring for her 97-year-old mother for ten years. I told her I was a caregiver, too, and remarked that I thought caring for someone else when you were 75 must be most difficult. With a sheepish look on her face she said, “You know, I’m ashamed to tell you this, but sometimes I get very angry." I responded, “Of course you do; that’s only natural. I get angry, too.”  She looked astonished. “You do?” she said, “I thought I was the only one.” I couldn’t believe my ears. I assured her that most caregivers experience this strong emotion more often than they would like to admit. She was very happy and relieved to hear that.  There is no way you can keep from feeling angry about seeing your loved one suffering and about having acquired such tremend...