Caregiving a Damn

Travels through Hell with Love

by Michael Abernethy

17 February 2010

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

“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)

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