MSI Press Blog

  I never imagined that the end of such relentless days could feel like both a surrender and a liberation. For months, my world had been a blur of urgent calls, sleepless nights, and a relentless schedule—caring for adult disabled children living at home and independently but in need of support, running a business, and tending to Carl’s ever-growing needs as he battled cancer of unknown primary (CUP). Each day was a race against time: rushing to change his diapers, lifting him from his chair to the bed in the hoyer, and dashing to the pharmacy at a minute’s notice when a new symptom flared up. The demands were ceaseless, and the emotional toll was immeasurable. When Carl finally passed, I expected to grieve. Instead, I found myself caught in an unexpected and painful paradox: relief. There was an undeniable sense of release, a pause to the endless treadmill of caregiving that had consumed every waking moment of my life and more often than not, half of my night, with sleep deprivati...

  ​This post follows up on an earlier Cancer Diary post on whether or not to choose hospice help , when and where. Choosing between in-home hospice care and care in a facility is a deeply personal decision that depends on various factors, including the patient's medical needs, the capabilities of caregivers, and the resources available.  It also may depend upon the relationship between the patient and caregiver, whether it is a spouse or an offspring who is providing the care.  While many patients express a desire to spend their final days at home, it's essential to understand both the benefits and the challenges associated with each option. ​ brighthh.com Carl so adamantly wanted to be at home and so hated the two short visits he had made to a care facility that I agreed to take on the caregiving, but it left a lot of emotional scars and question marks about whether we had thought things through adequately. The answer of course, is no. The question had to be answered alm...

  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 ...

  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 ...

  Small businesses are often co-owned by spouses. The partnership blends life and work, weaving together shared goals, hopes, and sacrifices. But what happens when one of those partners becomes terminally ill—and not gradually, but suddenly, with a diagnosis that leaves little time to prepare? That was the reality I faced when Carl, my husband of over 51 years, was diagnosed with multiple late-stage cancers. His health declined rapidly, and he pushed hard to close our business—something we had built together—because he could no longer do the work he had always managed. On the surface, his wish was simple: “I’m dying, and I want everything to stop with me.” But for those left behind, nothing stops. Life keeps demanding care, attention, and difficult decisions. I was caring not only for Carl, but also for our disabled son and a daughter who needed support. And the business—our livelihood—still needed running. Carl saw one piece of the picture: his need for full-time care and atten...

  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...

  A somber topic today indeed, but an important one. One that was so completely new to us when Carl was dying from cancer that not only did we not know what to expect, leaving us feeling lost and helpless, but also we had no idea even what questions to ask and where to search for answers, leaving us feeling depressed and fearful. I think that may not be completely uncommon. Here is a clinical description of dying from cancer: Dying from cancer is a process that involves  changes in body function and loss of control over bodily functions .  Some of the common signs that your body is preparing to die are  disorientation, incontinence, rattling breaths, extreme weakness, less interest in food, trouble swallowing, and muscle jerking . These signs are caused by the cancer spreading to different organs and systems, and the body shutting down. Frankly, these signs are pretty scary and disconcerting when you do not expect them and do not know how to interpret them -- let alo...