Short Caregivers Quotes

I’m a modern man, a man for the millennium. Digital and smoke free. A diversified multi-cultural, post-modern deconstruction that is anatomically and ecologically incorrect. I’ve been up linked and downloaded, I’ve been inputted and outsourced, I know the upside of downsizing, I know the downside of upgrading. I’m a high-tech low-life. A cutting edge, state-of-the-art bi-coastal multi-tasker and I can give you a gigabyte in a nanosecond! I’m new wave, but I’m old school and my inner child is outward bound. I’m a hot-wired, heat seeking, warm-hearted cool customer, voice activated and bio-degradable. I interface with my database, my database is in cyberspace, so I’m interactive, I’m hyperactive and from time to time I’m radioactive. Behind the eight ball, ahead of the curve, ridin the wave, dodgin the bullet and pushin the envelope. I’m on-point, on-task, on-message and off drugs. I’ve got no need for coke and speed. I've got no urge to binge and purge. I’m in-the-moment, on-the-edge, over-the-top and under-the-radar. A high-concept, low-profile, medium-range ballistic missionary. A street-wise smart bomb. A top-gun bottom feeder. I wear power ties, I tell power lies, I take power naps and run victory laps. I’m a totally ongoing big-foot, slam-dunk, rainmaker with a pro-active outreach. A raging workaholic. A working rageaholic. Out of rehab and in denial! I’ve got a personal trainer, a personal shopper, a personal assistant and a personal agenda. You can’t shut me up. You can’t dumb me down because I’m tireless and I’m wireless, I’m an alpha male on beta-blockers. I’m a non-believer and an over-achiever, laid-back but fashion-forward. Up-front, down-home, low-rent, high-maintenance. Super-sized, long-lasting, high-definition, fast-acting, oven-ready and built-to-last! I’m a hands-on, foot-loose, knee-jerk head case pretty maturely post-traumatic and I’ve got a love-child that sends me hate mail. But, I’m feeling, I’m caring, I’m healing, I’m sharing-- a supportive, bonding, nurturing primary care-giver. My output is down, but my income is up. I took a short position on the long bond and my revenue stream has its own cash-flow. I read junk mail, I eat junk food, I buy junk bonds and I watch trash sports! I’m gender specific, capital intensive, user-friendly and lactose intolerant. I like rough sex. I like tough love. I use the “F” word in my emails and the software on my hard-drive is hardcore--no soft porn. I bought a microwave at a mini-mall; I bought a mini-van at a mega-store. I eat fast-food in the slow lane. I’m toll-free, bite-sized, ready-to-wear and I come in all sizes. A fully-equipped, factory-authorized, hospital-tested, clinically-proven, scientifically- formulated medical miracle. I’ve been pre-wash, pre-cooked, pre-heated, pre-screened, pre-approved, pre-packaged, post-dated, freeze-dried, double-wrapped, vacuum-packed and, I have an unlimited broadband capacity. I’m a rude dude, but I’m the real deal. Lean and mean! Cocked, locked and ready-to-rock. Rough, tough and hard to bluff. I take it slow, I go with the flow, I ride with the tide. I’ve got glide in my stride. Drivin and movin, sailin and spinin, jiving and groovin, wailin and winnin. I don’t snooze, so I don’t lose. I keep the pedal to the metal and the rubber on the road. I party hearty and lunch time is crunch time. I’m hangin in, there ain’t no doubt and I’m hangin tough, over and out!

It would be sad to be hired as a caregiver and then die before the person you were looking after. You wouldn't be able to let people know you did a good job.

What is it about the ancients,’ Pinker asks at one point, ‘that they couldn’t leave us an interesting corpse without resorting to foul play?’ There is an obvious response to this: doesn’t it rather depend on which corpse you consider interesting in the first place? Yes, a little over 5,000 years ago someone walking through the Alps left the world of the living with an arrow in his side; but there’s no particular reason to treat Ötzi as a poster child for humanity in its original condition, other than, perhaps, Ötzi suiting Pinker’s argument. But if all we’re doing is cherry-picking, we could just as easily have chosen the much earlier burial known to archaeologists as Romito 2 (after the Calabrian rock-shelter where it was found). Let’s take a moment to consider what it would mean if we did this. Romito 2 is the 10,000-year-old burial of a male with a rare genetic disorder (acromesomelic dysplasia): a severe type of dwarfism, which in life would have rendered him both anomalous in his community and unable to participate in the kind of high-altitude hunting that was necessary for their survival. Studies of his pathology show that, despite generally poor levels of health and nutrition, that same community of hunter-gatherers still took pains to support this individual through infancy and into early adulthood, granting him the same share of meat as everyone else, and ultimately according him a careful, sheltered burial.15 Neither is Romito 2 an isolated case. When archaeologists undertake balanced appraisals of hunter-gatherer burials from the Palaeolithic, they find high frequencies of health-related disabilities – but also surprisingly high levels of care until the time of death (and beyond, since some of these funerals were remarkably lavish).16 If we did want to reach a general conclusion about what form human societies originally took, based on statistical frequencies of health indicators from ancient burials, we would have to reach the exact opposite conclusion to Hobbes (and Pinker): in origin, it might be claimed, our species is a nurturing and care-giving species, and there was simply no need for life to be nasty, brutish or short. We’re not suggesting we actually do this. As we’ll see, there is reason to believe that during the Palaeolithic, only rather unusual individuals were buried at all. We just want to point out how easy it would be to play the same game in the other direction – easy, but frankly not too enlightening.

It may seem paradoxical to claim that stress, a physiological mechanism vital to life, is a cause of illness. To resolve this apparent contradiction, we must differentiate between acute stress and chronic stress. Acute stress is the immediate, short-term body response to threat. Chronic stress is activation of the stress mechanisms over long periods of time when a person is exposed to stressors that cannot be escaped either because she does not recognize them or because she has no control over them. Discharges of nervous system, hormonal output and immune changes constitute the flight-or-fight reactions that help us survive immediate danger. These biological responses are adaptive in the emergencies for which nature designed them. But the same stress responses, triggered chronically and without resolution, produce harm and even permanent damage. Chronically high cortisol levels destroy tissue. Chronically elevated adrenalin levels raise the blood pressure and damage the heart. There is extensive documentation of the inhibiting effect of chronic stress on the immune system. In one study, the activity of immune cells called natural killer (NK) cells were compared in two groups: spousal caregivers of people with Alzheimer’s disease, and age- and health-matched controls. NK cells are front-line troops in the fight against infections and against cancer, having the capacity to attack invading micro-organisms and to destroy cells with malignant mutations. The NK cell functioning of the caregivers was significantly suppressed, even in those whose spouses had died as long as three years previously. The caregivers who reported lower levels of social support also showed the greatest depression in immune activity — just as the loneliest medical students had the most impaired immune systems under the stress of examinations. Another study of caregivers assessed the efficacy of immunization against influenza. In this study 80 per cent among the non-stressed control group developed immunity against the virus, but only 20 per cent of the Alzheimer caregivers were able to do so. The stress of unremitting caregiving inhibited the immune system and left people susceptible to influenza. Research has also shown stress-related delays in tissue repair. The wounds of Alzheimer caregivers took an average of nine days longer to heal than those of controls. Higher levels of stress cause higher cortisol output via the HPA axis, and cortisol inhibits the activity of the inflammatory cells involved in wound healing. Dental students had a wound deliberately inflicted on their hard palates while they were facing immunology exams and again during vacation. In all of them the wound healed more quickly in the summer. Under stress, their white blood cells produced less of a substance essential to healing. The oft-observed relationship between stress, impaired immunity and illness has given rise to the concept of “diseases of adaptation,” a phrase of Hans Selye’s. The flight-or-fight response, it is argued, was indispensable in an era when early human beings had to confront a natural world of predators and other dangers. In civilized society, however, the flight-fight reaction is triggered in situations where it is neither necessary nor helpful, since we no longer face the same mortal threats to existence. The body’s physiological stress mechanisms are often triggered inappropriately, leading to disease. There is another way to look at it. The flight-or-fight alarm reaction exists today for the same purpose evolution originally assigned to it: to enable us to survive. What has happened is that we have lost touch with the gut feelings designed to be our warning system. The body mounts a stress response, but the mind is unaware of the threat. We keep ourselves in physiologically stressful situations, with only a dim awareness of distress or no awareness at all.

Thus polyvictimization or complex trauma are "developmentally adverse interpersonal traumas" (Ford, 2005) because they place the victim at risk not only for recurrent stress and psychophysiological arousal (e.g., PTSD, other anxiety disorders, depression) but also for interruptions and breakdowns in healthy psychobiological, psychological, and social development. Complex trauma not only involves shock, fear, terror, or powerlessness (either short or long term) but also, more fundamentally, constitutes a violation of the immature self and the challenge to the development of a positive and secure self, as major psychic energy is directed toward survival and defense rather than toward learning and personal development (Ford, 2009b, 2009c). Moreover, it may influence the brain's very development, structure, and functioning in both the short and long term (Lanius et al., 2010; Schore, 2009). Complex trauma often forces the child victim to substitute automatic survival tactics for adaptive self-regulation, starting at the most basic level of physical reactions (e.g., intense states of hyperarousal/agitation or hypoarousal/immobility) and behavioral (e.g., aggressive or passive/avoidant responses) that can become so automatic and habitual that the child's emotional and cognitive development are derailed or distorted. What is more, self-integrity is profoundly shaken, as the child victim incorporates the "lessons of abuse" into a view of him or herself as bad, inadequate, disgusting, contaminated and deserving of mistreatment and neglect. Such misattributions and related schema about self and others are some of the most common and robust cognitive and assumptive consequences of chronic childhood abuse (as well as other forms of interpersonal trauma) and are especially debilitating to healthy development and relationships (Cole & Putnam, 1992; McCann & Pearlman, 1992). Because the violation occurs in an interpersonal context that carries profound significance for personal development, relationships become suspect and a source of threat and fear rather than of safety and nurturance. In vulnerable children, complex trauma causes compromised attachment security, self-integrity and ultimately self-regulation. Thus it constitutes a threat not only to physical but also to psychological survival - to the development of the self and the capacity to regulate emotions (Arnold & Fisch, 2011). For example, emotional abuse by an adult caregiver that involves systematic disparagement, blame and shame of a child ("You worthless piece of s-t"; "You shouldn't have been born"; "You are the source of all of my problems"; "I should have aborted you"; "If you don't like what I tell you, you can go hang yourself") but does not involve sexual or physical violation or life threat is nevertheless psychologically damaging. Such bullying and antipathy on the part of a primary caregiver or other family members, in addition to maltreatment and role reversals that are found in many dysfunctional families, lead to severe psychobiological dysregulation and reactivity (Teicher, Samson, Polcari, & McGreenery, 2006).

The young girl was waiting in the sky-walker suite’s dayroom when she arrived, sprawled across a massive chair and playing a tap-click game on her questis. She looked to be nine or ten, but sky-walkers tended to be on the short side, so that was only a guess. She looked up as Thalias came through the hatchway, gave the woman a rather suspicious-looking appraisal, then returned her attention to the game. Thalias started to introduce herself, remembered how touchy she’d usually been whenever a new caregiver came to call, and instead took her luggage to her part of the suite

I asked Wilson why assisted living so often fell short. She saw several reasons. First, to genuinely help people with living “is harder to do than to talk about” and it’s difficult to make caregivers think about what it really entails. She gave the example of helping a person dress. Ideally, you let people do what they can themselves, thus maintaining their capabilities and sense of independence. But, she said, “Dressing somebody is easier than letting them dress themselves. It takes less time. It’s less aggravation.” So unless supporting people’s capabilities is made a priority, the staff ends up dressing people like they’re rag dolls. Gradually, that’s how everything begins to go. The tasks come to matter more than the people.

The Lonely, Deprived Child The most popular theory is one we often encounter in the treatment room. It’s the story of a child who grew up feeling conditionally loved based on performance. His parents may have expected him to be the best, instilling that to be anything short of perfect is to be flawed, inadequate, and unlovable. He may have been taught that love is tentative and contingent, or that his emotional needs would be met if he achieved greatness. His parents may have sought pride and attention through his achievements, implying a less-than-perfect performance would devastate them. This scenario may be complicated by different treatment from each parent. These children are often criticized by one parent while doted on, overprotected, or used as a surrogate spouse by the other. They may comply with their parents’ demands and expectations to receive attention and dodge criticism and shame. In response to this profound emotional deprivation, manipulation, and stifling of the precious and vulnerable little self, the child develops an attitude of I will need no one, No one is to be trusted, I will take care of myself, or I’ll show you. He was not loved for being himself, and was neither guided nor encouraged in the discovery of his true inclinations. He was not made to feel completely safe and unquestionably cherished by a caregiver. He was not shown how to walk in someone else’s shoes—how to feel the inner emotional life of another person. There was no role model for empathy and attunement. He was left with shame and a sense of defectiveness, both from the direct criticism and from the withholding of emotional nourishment and, often, physical affection. He was made to feel there was something wrong with him, as if wanting comfort, attention, and understanding were weaknesses. In defense, he mustered up whatever safeguards he could to extinguish the pain.

At a gut level, she knew this illness was one more ploy by her mother—one more ploy to keep Karen under her mother's thumb.

The second teaches my son that his feelings are too powerful and scary to be managed, that they harm others and threaten attachment security with a caregiver. (We’ll get into more detail about attachment in chapter 4, but the short of it is this: focusing on a child’s impact on us sets the stage for codependence, not regulation or empathy.)

Block said. “I mean, he’s a professor emeritus. He’s never watched a football game in my conscious memory. The whole picture—it wasn’t the guy I thought I knew.” But the conversation proved critical, because after surgery he developed bleeding in the spinal cord. The surgeons told her that in order to save his life they would need to go back in. But the bleeding had already made him nearly quadriplegic, and he would remain severely disabled for many months and likely forever. What did she want to do? “I had three minutes to make this decision, and I realized, he had already made the decision.” She asked the surgeons whether, if her father survived, he would still be able to eat chocolate ice cream and watch football on TV. Yes, they said. She gave the okay to take him back to the operating room. “If I had not had that conversation with him,” she told me, “my instinct would have been to let him go at that moment because it just seemed so awful. And I would have beaten myself up. Did I let him go too soon?” Or she might have gone ahead and sent him to surgery, only to find—as occurred—that he was faced with a year of “very horrible rehab” and disability. “I would have felt so guilty that I condemned him to that,” she said. “But there was no decision for me to make.” He had decided. During the next two years, he regained the ability to walk short distances. He required caregivers to bathe and dress him. He had difficulty swallowing and eating. But his mind was intact and he had partial use of his hands—enough to write two books and more than a dozen scientific articles. He lived for ten years after the operation. Eventually, however, his difficulties with swallowing advanced to the point where he could not eat without aspirating food particles, and he cycled between hospital and rehabilitation facilities with the pneumonias that resulted. He didn’t want a feeding tube. And it became evident that the battle for the dwindling chance of a miraculous recovery was going to leave him unable ever to go home again. So, just a few months before I’d spoken with Block, her father decided to stop the battle and go home. “We started him on hospice care,” Block said. “We treated his choking and kept him comfortable. Eventually, he stopped eating and drinking. He died about five days later.

Therapy must begin with empathy - not a patronizing sympathy, but instead one that is unflinching (Marotta, 2003). Empathy of this sort is highly attuned to the client, no matter the circumstance. The therapist strives to "travel in the client's shoes" or to "view the world from the client's perspective" in order to really understand his or her emotions, cognitions, and beliefs - in short, to understand from the perspective of the other (Wilson & Thomas, 2004). Treatment involves understanding that a client's defeatist and apparently helpless, disempowered, or "masochistic" perspectives can be a logical outgrowth of formative traumatic experiences and, further, may be highly creative means of self-protection. The therapist must not attempt to undo or "make up for" past abandonment or betrayals by their client's caregivers or in their close relationships, but instead first understand the client's perspective and approach to the world, while working to provide alternative perspectives on both past and present that promote change.

the unpaid care they also provide at home.34 Why does it matter that this core economy should be visible in economics? Because the household provision of care is essential for human well-being, and productivity in the paid economy depends directly upon it. It matters because when—in the name of austerity and public sector savings—governments cut budgets for children’s daycare centres, community services, parental leave and youth clubs, the need for care-giving doesn’t disappear: it just gets pushed back into the home. The pressure, particularly on women’s time, can force them out of work and increase social stress and vulnerability. That undermines both well-being and women’s empowerment, with multiple knock-on effects for society and the economy alike. In short, including the household economy in the new diagram of the macroeconomy is the first step in recognising its centrality, and in reducing and redistributing women’s unpaid work.

Every American should be able to expect certain standards, freedoms, benefits, and opportunities form a twenty-first-century health system. If they are willing to participate and be responsible, they will gain: •Improved health; •Longer lives with a much better quality of life; •A more convenient, understandable and personalized experience -- all at a lower cost; •Access to the best course of treatment for their particular illness and their unique characteristics; •A system that fosters and encourages innovation, competition, and better outcomes for patients; •A system that truly values the impact that medical innovation has on patients and their caregivers as well as on society as a whole; •A government that facilitates and accelerates extraordinary opportunities to improve health and health care; •Continuous but unobtrusive 24/7 monitoring of their general health, chronic conditions, and acute health problems; •Access to the most modern medical knowledge and breakthroughs, including the most advanced technologies, therapies and drugs, unimpeded by government-imposed price controls or rationing; •The chance to increase their personal knowledge by learning from a transparent system of information about their diagnosis, costs and alternative solutions; •A continuously improving, competitive, patient-focused medical world in which new therapies, new technologies, and new drugs are introduced as rapidly and safely as possible -- and not a day later; •Greater price and market competition, innovation and smarter health care spending; •A system of financing that includes insurance, government, charities, and self-funding that ensures access to health and health care for every American at the lowest possible cost without allowing financing and short-term budgetary considerations to distort and weaken the delivery of care; •Genuine insurance to facilitate access to dramatically better care, rather than the current system, which is myopically focused on monthly or annual payments; •A health system in which third parties and government bureaucrats do not impede the best course of treatment that doctors and their patients decide on; •A health system in which seniors, veterans, or others under government health programs receive the same quality of care as their children in private markt systems. Big reforms are required to transform today’s expensive, obsolete health bureaucracy into a system that conforms to these principles.

There is no evidence from anywhere in the world that harm reduction measures encourage drug use. Denying addicts humane assistance multiplies their miseries without bringing them one inch closer to recovery. There is also no contradiction between harm reduction and abstinence. The two objectives are incompatible only if we imagine that we can set the agenda for someone else’s life regardless of what he or she may choose. We cannot. Short of extreme coercion there is absolutely nothing anyone can do to induce another to give up addiction, except to provide the island of relief where contemplation and self-respect can, perhaps, take root. Those ready to choose abstinence should receive every possible support — much more support than we currently provide. But what of those who don’t choose that path? The impossibility of changing other people is not restricted to addictions. Try as we may to motivate another person to be different or to do this or not to do that, our attempts founder on a basic human trait: the drive for autonomy. “And one may choose what is contrary to one’s own interests and sometimes one positively ought,” wrote Fyodor Dostoevsky in Notes from the Underground. “What man wants is simply independent choice, whatever that independence may cost and wherever it may lead.” The issue is not whether the addict would be better off without his habit — of course he would — but whether we are going to abandon him if he is unable to give it up. Are we willing to care for human beings who suffer because of their own persistent behaviours, mindful that these behaviours stem from early life misfortunes they had no hand in creating? The harm reduction approach accepts that some people — many people — are too deeply enmeshed in substance dependence for any realistic “cure” under present circumstances. There is, for now, too much pain in their lives and too few internal and external resources available to them. In practising harm reduction we do not give up on abstinence — on the contrary, we may hope to encourage that possibility by helping people feel better, bringing them into therapeutic relationships with caregivers, offering them a sense of trust, removing judgment from our interactions with them and giving them a sense of acceptance. At the same time, we do not hold out abstinence as the Holy Grail and we do not make our valuation of addicts as worthwhile human beings dependent on their making choices that please us. Harm reduction is as much an attitude and way of being as it is a set of policies and methods.

How could he believe that this was all part of a master plan, that a supreme being was choosing to confine him to a hospital, waiting for a heart that might not ever come? Then I came to see that, our caregiving notwithstanding, his faith was the primary thing keeping him alive. His perpetual good nature, his resilience in the face of countless near-fatal setbacks—all was built on the foundation of his belief that God would take care of him. I had to admire the intensity of his belief, even if I couldn’t share it.

anthologies like Accessing the Future (gathering together voices of disabled people to create SF tales of disability), The Sum of Us (an anthology complicating ideas of care and caregiving), Alison Sinclair’s Darkborn series (presenting the social changes that would occur in a world where half the population is blind), Tanya Huff’s novel Gate of Darkness, Circle of Light (which features a protagonist with an intellectual disability who resists containment or control), Ada Hoffmann’s short story “You Have To Follow the Rules” (which transports the reader into a world where autism is the norm and asks us to reconsider how we codify rules of social interaction and privilege neurotypicality),

way stress impedes healing.49 Kiecolt-Glaser and colleagues have also examined how stress affects aging—at the cellular level. At the ends of each of our forty-six chromosomes, which house our DNA, are structures called telomeres. As we age, the telomeres become shorter and shorter. Once they become too short, mistakes start creeping into the way our DNA replicates, which is the leading edge of the aging process. Kiecolt-Glaser points out that there is “ample epidemiological data that stressed caregivers die sooner than people not in that role.” So she and her team compared various elements of the immune response as seen in the blood, as well as telomere lengths in circulating blood cells, in forty-one caregivers and forty-one matched controls.50 As you might suspect, not only was immune function off in the caregivers, but their telomeres were shorter. This shows that stress can age people at the very level of their cells, thereby potentially shaving years off their lives.