MSI Press Blog

  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...

  Giving care to cancer patients or to anyone with a chronic, life-threatening, terminal illness is highly stressful. This includes hospice situations as well since hospice nurses and aides are only there for a few hours (if that) a week. Meanwhile, the loved one receiving the care may be experiencing deteriorations that are hard to understand (either as patient or caregiver).  While the medical professional generally does a good job, focusing on the needs of the patient, few in the profession give much thought to the caregiver (although some church programs [support groups] exist that do help).  As the patient deteriorates, the stress on the caregiver generally increases -- from a pending sense of doom, from escalating demands on time and knowledge (often inferior to the need), and decreasing lack of time for self-renewal. If you are a caregiver, find some help. Live-in assistance with care provides the most relief, but respite care can help as well. Don't wait until it ...

  Have you ever made sure your clients, children, partner, friends, family, or coworkers were OK before noticing you were drained and exhausted yourself? Or maybe you noticed, but you told yourself, "Later. I'll deal with you later." Other people's needs may seem more pressing, and perhaps they legitimately are. You care, and that's a beautiful thing. It's not the caring that's the problem; it's the carrying everybody else's emotions around that is unsustainable.   If you work in a helping profession, or you have children or elderly dependents, or you're the go-to friend for everyone around you, being helpful is probably such a part of who you are that you can't imagine life without being needed. Thank goodness there are people out there in the world who will give the way you do, who put their own problems to the side for a while to attend to others. However, without healthy boundaries and deeply respectful self-love, caretaking can get pre...

  Excerpt from Survival of the Caregiver A Treasury of ABC Self-Help Words that Give Encouragement and Support to the Caregiver  by Janice Hucknall Snyder: ABILITIES are unique and varied in each individual. I hope your parents let you become the person you were meant to be. Did they? If so, then you have developed your own interests. You have been given the opportunity of becoming a happy and well-adjusted person. In which case, you are now better prepared mentally to deal with your current role as caregiver. In fact, all the problems that face you during your lifetime will be more manageable. It is a tragedy when a child is expected to follow in his/her parent’s footsteps. Many times, it leads to failure, depression and even self-destruction. Ultimately, some of these people end up requiring a caregiver—sad but true. When you are comfortable with who you are, you are better able to respond in affirmative ways to all others. When your life is smothered in negativ...

  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 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 prognosis 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 that is devoted to the caregivers of those who have the tragic illnesses. My twenty years of experience as a caregiver has given me many insights into coping with and surviving the problems of caring for an ill person. This book gives encouragement along with valuable information learned the hard way by trial and error. It is my hope that i...

Being sick is the pits! The authors of these recommended books know. They are not only experts; they have also lived the experience. Read one, read them all! They are available at discount from MSI Press webstore (use code FF25 for a 25% discount). All are available on Kindle. How to Be a Good Mommy When You're Sick Soon after receiving her Bachelor's Degree, Dr. Emily Graves was diagnosed with Rheumatoid Arthritis and given a prognosis that she would be confined to a wheelchair within ten years. Shortly thereafter, pregnant with her first and only child, Emily's kidneys shut down. Thus, began a new chapter in Emily's life: balancing chronic illness, motherhood, and the professional ambitions that had caused her to excel as an academic and meet her husband. Today she is still fighting chronic illness, but she has found some answers as to how to manage that fight while being a good mother and spouse and continuing to pursue her professional ambitions. In this...