MSI Press Blog

  The Hoyer lift made life work for us when Carl came home on hospice. I had been told about it by a friend after Carl had fallen several times and needed help getting up from more than one neighbor working together. Had I known a little earlier, I could have saved the neighbors some effort and Carl some dignity. Actually, once Carl went on hospice, the hospice company provided us with the lift. (Their aides would not have been able to lift Carl without it.) Having it at home meant that we could move Carl from bedroom to living room and back so that he could spend his days with his family out where they were and where he preferred to be. The Hoyer lift, as see in the picture is a tall pole with a moving base and patient sling for lifting patients who cannot stand. There are at least four  kinds of Hoyer lifts : power lift (highly recommended for large patients with small caregivers) manual (less expensive and works find for average-sized patients and average-sized caregivers)...

  Earlier, I wrote about the two paths that erupted in front us when faced with a late-stage cancer diagnosis: to focus on living or to focus on dying. There are so many problems and so much confusion when told after a fall or a blood test or something else that seems otherwise innocuous that your loved one has advanced stage 4 cancer.  The worst thing about a late-stage diagnosis is time, or the lack thereof. Not just the time left for a cancer victim to live, but the time available to make decisions.  The first decision--to treat or go on hospice --is a significant one, and there is often no time to really think in through. From my own experience with more than one relative diagnosed with more than one kind of cancer at an advanced stage, there is an automatic, nearly instinctive choice made, not a reasoned one. Got insurance? Treat the cancer. Don't have insurance? Don't treat the cancer. Those are clearly not the most logical or even medically best or viable criteria...

  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...

I have put off talking about this topic on Cancer Diary for a while because the memory is so painful. However, it did happen, and therefore it probably happens more often than one would think or hope. When it became time for Carl to go on hospice, we chose home hospice and looked forward to him being back home from the hospital with his family and having the support of professionals in our own.  Alas, that did not happen. Whatever could go wrong did go wrong -- and it would appear that with this particular hospice, it might have been regular practice rather than something going wrong. The easiest way to share is probably just to provide a list of everything that went wrong. (Any one of these might go wrong with any hospice, something caregivers should be prepared for. All of them going wrong is simply incompetence, uncaring, and abuse on the part of the hospice.) [In this list, Hospice C is the first hospice we worked with, the bad one, and Hospice B is the second one, the good one...

  Carl , who died from cancer August 16, 2021 would love to see me wearing my non-slid slipper sox . He was constantly slipping as he tried to walk with his walker, unbalanced from hypercalcemia. He found these sox online; they are stronger than the typical non-slid sox (click the link above to get to the sales site), warm, form-fitting, and comfortable.  I was always slipping when I tried to pull him up from his chair after he became too weak to stand on his own. I was barely strong enough to lift his 275-pound body with some help from him, and having sox skid me along the floor because his weight was more than my bicep strength created a dangerous situation. So, he ordered me several pairs, which came just as he was dying. I never got to wear them. He was in a Hoyer lift for transportation at that time. After he died, though the need for super-floor-sticking no longer existed, I cleaned his drawer and gave his sox (too big for me) to my son and daughter, whom they fit. Out o...

  ​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...