Caregiving a Damn: Travels through Hell with Love

“Drip IV white light detail” (partial) courtesy of Dan Corson, Corson

Were lawmakers to seek a better understanding of the work of the caregiver, health care reform would reflect an economic model that placed altruistic motivation above financial consideration.

“There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers”. -- Rosalyn Carter

It's 1:30 in the morning. I finishing tallying up the grade on the research paper I've been grading and slide it into the appropriate folder. If I hurry, I can be in bed by 2AM, which means four hours of sleep before I am up to shower and shave and head off to the hospital. I like to have breakfast with my partner Jim before he heads off for another round of tests and I trek to the university. I try to get as much done at school as possible, then head back to the hospital in time to share dinner and a couple of hours of talk and TV before Jim passes out for the night. Once home, I do whatever cleaning or domestic chores I can manage and settle down to grade papers or do lesson plans. Then another four hours of sleep, or less, and I do it all again. This goes on for 14 days.

Once Jim is home, we finally get the call with a diagnosis: Non-Hodgkin's Lymphoma. Ten days of radiation, four months of chemo. That was three years ago, and happily, Jim went into remission. Until a couple of months ago, that is, when we learned the cancer was back. Now, we get to do it all again.

October was Breast Cancer Awareness Month in America, and there were thousands of banquets, runs, fundraisers, awareness drives, news reports, and ad campaigns throughout the country to heighten awareness of the disease. There won't be a similar outpouring of support for patients with Non-Hodgkin's Lymphoma, or any other type of cancer, for that matter. Nor will there be any parades or news reports to celebrate the men, women, and children who must assume the unenviable position of caregiver to the almost 12 million people worldwide who fall prey to the hideous disease that is cancer this year, even though stateside, November is National Caregivers Month.

Naturally, it is not just cancer patients who require the support of a caregiver. Currently, there are 33 million people who live with AIDS/HIV, and in countries with high rates of infection, many of these people are both caregiver and patient. Whether the patient in question suffers from AIDS, Alzheimer's, Muscular Dystrophy, ALS (better known as Lou Gehrig's Disease), or any of the countless other conditions that leaves one debilitated, including reduced capacity from old age, there is no question that the patient will recover more quickly or at least be more comfortable with the care of a loved one. It's too often a thankless task and a job I wish on no one.

Unfortunately, since 2001, even more American families have found themselves serving as caregivers, as 36,000 soldiers have returned from wars in Iraq and Afghanistan gravely injured, according to Given the young age of most of these soldiers and the severity of their injuries, many are looking at a lifetime of being dependent upon others to survive and function. The emotional and financial strain on their caregivers will last decades. The same is true of the millions who become caregivers when their loved ones fall prey to traffic, household or work accidents, or become victims of violent crimes.

According to data cited on the National Family Caregiver Association's website (NFCA), 50 million Americans will serve in the capacity of caregiver this year; of this number, 1.4 million will be between the ages of eight and 18. For many, this will be a temporary job, as their loved ones recuperate from injuries or illnesses that are neither life-threatening nor life-altering. The remainder will assume this new role for months, years, or decades, depending on the condition of the patient. Were these caregivers to be paid at the current market rates for the services they provide, the bill would come to $306 billion dollars.

Even without receiving pay, caregivers have a definite impact on the economy. In "Time Costs Associated with Informal Caregiving for Cancer Survivors", authors Yabroff and Youngmee report that the caregiver of a cancer patient spends "an average of 8.3 hours daily for 13.7 months" performing caregiving duties. Depending on the type of condition being dealt with, other caregivers may spend more or less time. (Cancer, 16 September 2009)

Next Page

The year in song reflected the state of the world around us. Here are the 70 songs that spoke to us this year.

70. The Horrors - "Machine"

On their fifth album V, the Horrors expand on the bright, psychedelic territory they explored with Luminous, anchoring the ten new tracks with retro synths and guitar fuzz freakouts. "Machine" is the delicious outlier and the most vitriolic cut on the record, with Faris Badwan belting out accusations to the song's subject, who may even be us. The concept of alienation is nothing new, but here the Brits incorporate a beautiful metaphor of an insect trapped in amber as an illustration of the human caught within modernity. Whether our trappings are technological, psychological, or something else entirely makes the statement all the more chilling. - Tristan Kneschke

Keep reading... Show less

Electronic music is one of the broadest-reaching genres by design, and 2017 highlights that as well as any other year on record. These are the 20 best albums.

20. Vitalic - Voyager (Citizen)

Pascal Arbez-Nicolas (a.k.a. Vitalic) made waves in the French Touch electro-house scene with his 2005 debut, OK Cowboy, which had a hard-hitting maximalist sound, but several albums later, Voyager finds him launching into realms beyond at his own speed. The quirky, wallflower vocals and guitar snippets employed throughout Voyager drop a funk that brings to mind WhoMadeWho or Matthew Dear if they had disco-pop injected between their toes. "Levitation" is as pure a slice of dance floor motivation as theoretically possible, a sci-fi gunfight with a cracking house beat sure to please his oldest fans, yet the album-as-form is equally effective in its more contemplative moments, like when Miss Kitten's vocals bring an ethereal dispassion to "Hans Is Driving" to balance out its somber vocoder or the heartfelt cover of "Don't Leave Me Now" by Supertramp. Voyager may infect you with a futuristic form of Saturday Night Fever, but afterwards, it gives you a hearty dose of aural acetaminophen to break it. - Alan Ranta

Keep reading... Show less

Hitchcock, 'Psycho', and '78/52: Hitchcock's Shower Scene'

Alfred Hitchock and Janet Leigh on the set of Psycho (courtesy of Dogwoof)

"... [Psycho] broke every taboo you could possibly think of, it reinvented the language of film and revolutionised what you could do with a story on a very precise level. It also fundamentally and profoundly changed the ritual of movie going," says 78/52 director, Alexandre O. Philippe.

The title of Alexandre O. Philippe's 78/52: Hitchcock's Shower Scene (2017) denotes the 78 set-ups and the 52 cuts across a full week of shooting for Psycho's (1960) famous shower scene. Known for The People vs. George Lucas (2010), The Life and Times of Paul the Psychic Octopus (2012) and Doc of the Dead (2014), Philippe's exploration of a singular moment is a conversational one, featuring interviews with Walter Murch, Peter Bogdanovich, Guillermo del Toro, Jamie Lee Curtis, Osgood Perkins, Danny Elfman, Eli Roth, Elijah Wood, Bret Easton Ellis, Karyn Kusama, Neil Marshall, Richard Stanley and Marli Renfro, body double for Janet Leigh.

Keep reading... Show less

The Force, which details the Oakland Police Department's recent reform efforts, is best viewed as a complimentary work to prior Black Lives Matter documentaries, such 2017's Whose Streets? and The Blood Is at the Doorstep.

Peter Nicks' documentary The Force examines the Oakland Police Department's recent reform efforts to curb its history of excessive police force and systemic civil rights violations, which have warranted federal government oversight of the Department since 2003. Although it has its imperfections, The Force stands out for its uniquely equitable treatment of law enforcement as a complex organism necessitating difficult incremental changes.

Keep reading... Show less

Mary Poppins, Mrs. Gamp, Egyptian deities, a Japanese umbrella spirit, and a supporting cast of hundreds of brollies fill Marion Rankine's lively history.

"What can go up a chimney down but can't go down a chimney up?" Marion Rankine begins her wide-ranging survey of the umbrella and its significance with this riddle. It nicely establishes her theme: just as umbrellas undergo, in the everyday use of them, a transformation, so too looking at this familiar, even forgettable object from multiple perspectives transforms our view of it.

Keep reading... Show less
Pop Ten
Mixed Media
PM Picks

© 1999-2017 All rights reserved.
Popmatters is wholly independently owned and operated.