MSI Press Blog

 So often there is complete shock after getting a cancer diagnosis, especially one in late stage 4. There is simply not enough time to learn everything you need to know while simultaneously coping with managing the medical, daily requirements just to stay alive. You need help! To learn about the disease, funding the fight, emotional matters, physical support, and so much more. It is out there -- by the time I found it, Carl had died (his fight was brief), but others do not have to struggle with finding support. Not only are there support groups, but there are whole support organizations with all kinds of information and resources. Cancer Support Community (logo above) and others are listed at Carl's Cancer Compendium (see link below). Here, as well, is some help caregivers:  Caregivers Guide to Cancer 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 Canc

  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 an

  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

  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 tremendous responsibi

  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

  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 negative thought