MSI Press Blog

  I recently came across a wonderful post on Caring Bridge , a site that helps critically ill people and their caregivers establish to communicate with family members (so as not to have to repeat the same information many times). It also has a lot of other ways of providing support and supportive information. Among that information I discovered this great piece that I wish I had seen when I was the stressed-out caregiver for my husband and MSI Press typesetter, Carl Leaver .  Here is the post. Following the post is a list of 8 tips for managing spouse caregiver burnout -- and boy, are they great, starting with #1, "understand that your feelings are valid." You can read the tips HERE . What Is Spouse Caregiver Burnout? Spouse caregiver burnout is a state of exhaustion and stress that can affect people who provide ongoing care to their partner. Also called caregiver stress or caregiver fatigue, it’s something that can affect someone physically, mentally and emotionally. Unfortu

  Times were tense. I was caregiving for my husband, dying from cancer and on chemotherapy that required multiple trips a week to a distant hospital, my spina bifida daughter in a city a half-hour away who had lost her caregiver during the days of covid, and a CHARGE Syndrome adult son living at home -- and trying to run a business at the same time. The son tried to help out as best he could with his own care, but he did not always have the skills to do so. To wit, the scene above that ensued when he tried to help out by making his own breakfast -- one that at least brought a moment of levity into a too-tense life. Speaking from personal experience, the spouse (in this case wife, but it really does not much which spouse is pressed into the role) who ends up as the caregiver for a cancer patient is in a no-win situation, emotionally and physically. The role of spouse is to support the spouse and to navigate through life together, IMHO. That complicates the matter of caregiving. The two

  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

  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 is too lat

  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

  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 negative thought

  Anger, in its narrow form, is one of the stages of dying that Elizabeth Kubler-Ross identified quite some time ago in her book, On Death and Dying . People go through various stages, according to Kubler Ross (though her stages have been disputed ), the second of which in her model is anger (though she herself later stated that the stages are not necessarily sequential).  While anger of the patient was the focus of Kubler Ross and of most books and posts about cancer (and other dying) patients, my recent experience is that anger comes also within and from the caregiver, who had not planned on this life-changing (and time-changing) activity and likely is not prepared for it, whether it be lack of skills, lack of knowledge, lack of medical communication or options, lack of time to accomplish all that is necessary and thereby creating considerable stress, or lack of temperament/patience, causing anger to well up as a reaction to inability to control the environment and limited to no time

  (diagram and contents of diagram from Beth Frates via Twitter) Literature gives suggestions for caregiver as if life is calm and caregivers are never angry or stressed out (implying that it is wrong to be so). The reality is that even in the best of circumstances, i.e. the existence of good support systems, caregivers do burn out . Thinking that other caregivers do not and that it is wrong to be angry or somehow even to instinctively respond with an unkind word or behavior is somehow is unique and makes one a bad person creates quite a guilt trip later.  In normal, circumstances, caregivers become sleep-deprived. Sleep deprivation leads NATURALLY to short tempers, frequent frustration, and, yes, bad decisions. Individuals' decisions that are made while sleep deprived cannot be thought of as intentional or well considered. At one point, I was so sleep-deprived that I fell asleep and drove off the road and into a field of cabbage (fortunately, I was not on a major highway), with m

  Excerpt from Survival of the Caregiver by Janice Snyder -  B BACKS are the mainstay of our bodies when they're in. When they go out on us, we are in big trouble as caregivers. The first time I pulled a muscle in my back, I was miserable for a week. Then I forgot all about it and lifted something incorrectly again. Two weeks of misery followed. There are rules to live by when lifting something or someone: Always bend the knees and use the leg muscles, not the back. For better leverage, get as close to the object or person as possible. Leaning into the patient's torso minimizes back strain when helping to lift the patient to a sitting position or out of the bed. A slant board enables you to slide a person from and to a bed or chair with less lifting involved. If the dependent is a heavy person, try getting a medical lift that does most of the work. There are special fabric braces made now that give excellent support for your back. They wrap around the waist and are easily att

photo: care.com When Carl was dying from Cancer of Unknown Primary , we were facing the question of how to handle his 24/7 needs for care. Everything was compressed during that time -- decisions had to be made without the time to reasonably research them and rationally make them. (That is the primary reason MSI Press established Carl's Cancer Compendium : to pull together a lot of the basic, time-consuming research that could be accessed with just a couple of clicks).  When we decided to try chemotherapy, he became not eligible for hospice care. IMHO, there is a problem with the binary system behind hospice availability. Decide to work on dying - hospice is available. Decide to work on living -- you're on your own. Yet, this is exactly the time that patients and their families need help; being on your own is certain to result in a range of emotions, including anger and frustration, as well as poorly informed decisions, burnout from family member who cannot do everything and be