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Cancer Diary: The Horrible Hospice from Hell

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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. Ho

Cancer Diary: The Hospice Promise and the Hospice Dilemma

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  Choosing hospice is choosing to die. That may sound like a stark statement, but it is, in my experience, a true one. Now, when confronted with cancer, one can choose to live at home, not receive treatment, and not be in hospice--at least, for most of the course of the disease. That is what my sister-in-law did. She chose to die naturally and not fight nature, in part because she had no insurance (and did not want to rack up major debt for her husband or jeopardize their life savings and house) and in as much part due to her religious beliefs. She did go on hospice during the last six weeks of her life; she needed medical attention, and the hospital, to which she was ambulanced, moved her to in-patient hospice as a compromise. She was placed in a very nice New Hampshire hospice, Hyder Family Hospice House , known simply as Hyder House. Not all hospices are this attentive, gentle with the family, well-appointed in interior ambience and amenities, or surrounded by such beautiful landsca

Cancer Diary: Some Doctors Will Not Recommend Hospice until Too Late

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  I like to follow the blog of Barbara Karnes , hospice nurse par excellence. Much of what she has to say to hospice nurses about end-of-life issues in general apply to caregivers of cancer patients in particular. Her latest post, " For some doctors, it just isn’t in their tool kit to stop trying to treat,"  reflects our experience very well. Only when Carl fell and needed four people to lift him and get him to the hospital and x-rays showed complete take over by cancer of four major organs along with blood clots in his legs and lungs did the doctor suggest hospice (although he also expressed a willingness to continue treatment -- a different treatment -- if we wanted). We chose hospice, but the period of time was short. Carl returned from the hospital and went on hospice August 7. He died August 16. I have always wished that the doctor had put the hospice option in front of us much earlier, perhaps even at the beginning of the 5-month period during which the doctor tried eve

Cancer Diary: Late-Stage Cancer Diagnosis: Fast-Tracking Decision-Making on a Roller Coaster

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  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, but

Cancer Diary: The Importance of Ambiance

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  When Carl came home from the hospital and was put on in-home hospice, we, the members of his family (my daughter had come from the East Coast with her family and my son had come from Sacramento), did our best to learn all about his medical needs. The kids had come home because it was clear the end was near, and we wanted to make sure that his time at home was as pleasant as possible, surrounded by family. We learned about the various medications he had been taking and would be taking. He was not able to communicate well by then, but he had quite an arsenal of regular pills that he took every day, and once he stopped being able to sort them out himself, we had to figure out which he needed when. He was also given new drugs -- morphine, which he used only a little of, and an anti-anxiety drug, which he never needed. With the morphine, instructions were unclear, and we guessed at amounts. Checking in with the hospice nurse, we learned that we were giving a 300-pound man the dosage that

Cancer Diary: Thank You, Hoyer Lift

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  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) ceiling

Cancer Diary: Managing Pain at the End of Life

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  When Carl lay dying in home hospice, we were given three vials of morphine for pain. Oddly, we used very little of it. He did not need or want it. At one point, his liver was grieving him, and we gave him a small amount and called the hospice to find out what we should be giving since the bottle said only "as needed." We were told that we had given a pediatric dose -- for a 300-pound man. He did not seem to need more at that time, though, but the next couple of days, a couple of times, he indicated he was in mild pain, and we tripled the dose as suggested by the nurse. He, however, after that, never indicated he was in pain. Our son asked if he might like to be given at least a small dosage prophylactically, to which he responded, "You wanna turn me into a dope addict?" Carl had a limited tolerance for pain all his life, so if he said he was not in pain, he was indeed not in pain. Had he been in pain, he would have taken anything and everything available!  The opp

Cancer Diary: The Frustrations and Obfuscations of Cancer of Unknown Primary (Occult Cancer)

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  Carl, whose experience launched this blog and the MSI Press's Carl's Cancer Compendium (CCC) died after a very short 5 months post-diagnosis of occult cancer, or, as the official term goes, Cancer of Unknown Primary (CUP).  Carl fell February 23 and went to the local hospital where staff found advanced stage 4 metastatic cancer in five organs and subsequently transferred him to Stanford University Hospital, stating he would not likely return him. He did return home, for a brief four months--and he died at home on hospice almost a month later, having spent only 10 days in that capacity.  Stanford spent almost a month trying to determine the original cancer that had spread to these five organs (none of these organs was the original.) That is the problem with CUP. Finding the original seems out of reach and a guessing game. The doctor made his best guess, based on the spread pattern, but the cocktail he came up with for chemotherapy while doing no harm also did no good. The pro

Cancer Diary: What Doctors Say and Said, and What I Needed Them to Say and Wish They Had

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  The final conversation had with Carl's oncologist was what we needed in our first conversation but did not get. Not quite two weeks before Carl died, at which time he was in a subacute facility, having fallen the week before, been admitted to the hospital, then shifted to the care facility, the oncologist called us with the results of the latest scans. "Not good at all," he said, and he gave us three options: let nature take its course -- Carl could move to in-hospital hospice or in-home hospice (we chose the latter, and while we had a very bad experience with the initial hospice , it was still the best choice) try out another chemical compound - He told us he had given us the most appropriate and strongest ("the best") that he had, but if we wanted to try another mixture, he would look at other options take part in a clinical trial - He did not of any for Cancer of Unknown Primary and would have to do some research; there might not be any, and there might no

Cancer Diary: Maintaining Independence by Desire and Necessity

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This picture goes with maintaining a sense of independence and trying to help out the caregiver, especially when the caregiver is a family member and the cancer patient is still living at home (pre-hospice or on hospice -- although if put on hospice, chances are the patient has progressed to the point of not being able to assist with self-care), like my husband Carl was. Carl's push toward self-care was prompted by an unwillingness to talk about death (link to earlier post) and not wanting to admit that terminally ill (not necessarily good things because we had to scramble after he died to hack his accounts to take care of matters that could have been planned for -- but not just he but we, the whole family, were choosing to focus on life, not death . So, as a tinkerer, he came up with some home adaptations that could be helpful to anyone with reduced and reducing mobility. The picture above is the way in which he used towels to assist himself in getting up from the toilet once bei

Cancer Diary: Focus on Living? Focus on Dying? An (Almost) Unwinnable Scenario and Two Different Paths Chosen

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  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 grandchildren, two wi

Cancer Diary: The Stages of Dying Guide We Used to Accompany Carl in His Dying

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One of the most comforting and helpful resources we found when Carl was in the final days of hospice -- more helpful than what hospice workers could tell us and more than doctors did tell us -- was a little book, called Gone from My Sight: The Dying Experience by Barbara Karnes, RN. As Carl went through each predicted and predictable stage from being distant mentally, to not eating, and then to not drinking, this little book told us the range of expectations and what was happening to his body in preparation for death in relation to what he was and was not doing. The book description on Amazon is very accurate:  The biggest fear of watching someone die is fear of the unknown; not knowing what dying will be like or when death will actually occur. The booklet "Gone From My Sight" explains in a simple, gentle yet direct manner the process of dying from disease. Dying from disease is not like it is portrayed in the movies. Yet movies, not life, have become our role models. Death

Cancer Diary: Caregiver Survival

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  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

Cancer Diary: Understanding, Accepting, and Coping with Stress

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  (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