Caregiving a Damn: Travels through Hell with Love

“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

iCasualties.org. 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)

Working the Double Shift

Working the Double Shift

Fallout from the increased load placed on caregivers is most immediately evident on the job. In essence, employed caregivers are working two full-time jobs. Consequently, their work on both jobs may suffer. In one study, caregivers for the elderly reported missing 1.5 hours of work in a week, with an overall reduction in productivity of 18.5 percent. This means other employees must “pick up the slack”. Consequently, the caregiver often worries about job security, knowing full well that his or her work performance has noticeably diminished. (Erin R. Giovannetti, Jennifer L.Wolff, Kevin D. Frick, and Chad Boult. “Construct Validity of the Work Productivity and Activity Impairment Questionnaire across Informal Caregivers of Chronically Ill Older Patients.” Value in Health, September 2009)

The study further concluded that all caregivers, employed or not, experience a 27.2 percent reduction in productivity related to daily activities. The long term effect of this reduction, ultimately, is that they are contributing less to the economy, except to the health care industry. Based on my discussions with other caregivers, we are more likely to be late or behind in paying bills, either due to a lack of funds or being so busy that it’s forgotten; less likely to go shopping for non-essential items; and less likely to spend money on entertainment, sports, or hobbies.

Becoming a caregiver is a life-altering experience that takes you away from the pleasures of your life and the daily routines that allow your household to function efficiently. Your needs must be placed behind the needs of the patient. Friends, family, neighbors, and co-workers will ask how the patient is doing first, and then ask how you are doing. If you have no outside help, you become chauffeur, cook, maid, secretary, therapist, pharmacist, and patient advocate. It all sounds horrifically taxing, and it is, but ask almost any caregiver if they would stop, and we will tell you no. It’s not about the burden, it’s about love and compassion.

I can’t remember the number of times that well-meaning friends have told me, “If you need to talk, I’m here for you.” While I appreciate the kindness offered, I can’t help but think each time, “If you really want to help, come do our laundry. Mow our lawn. Mop our floors. That would help more than anything.” (Cooking a meal is always a nice gesture, but make sure that you are aware of the patient’s dietary needs and appetite before offering.)

One of the most important aspects of the caregiver’s job is to be the link between the patient and the medical community. Oftentimes, we must give medicines, manage appointments, keep records, change dressings and catheters, and monitor machines, to name just a few responsibilities, as well as be the memory bank for the vast amount of medical information provided. Over a third of all caregivers report that they have received no training in the medical procedures they perform, according to the NFCA, which means that much of the process is trial and error and pray for the best. When caregivers perform these duties incorrectly, it places a greater burden on the medical community, as they must repair the damage done by the error. In the end, this takes medical personnel away from attending to other patients.

Communication is the key to succeeding in performing and understanding medical procedures, according to Barbara Steele, R.N.O.C.N., the Oncology Informational Specialist at the J. Graham Brown Cancer Center in Louisville, Kentucky. (The Brown Cancer Center is where the Gardasil vaccine was developed.) Of primary importance is to talk to the attending physician. If the doctor or his/her staff isn’t forthcoming with information, caregivers should check their insurance policy, as many policies will allow for a couple of visits from a home nurse who can educate on the procedures. If all else fails, Steele notes, caregivers should check with friends, co-workers, or even people in their churches or synagogues to see if someone has medical training and would be willing to offer advice or help train. “The worst they can do is say ‘no'”, she points out.

When I asked her what the biggest problem was that caregivers faced, she was quick to respond: burn out. It is not uncommon for caregivers to “give every bit of themselves”, even mentally, to the situation. However, she recommends that caregivers think of the situation as being similar to flying. If the plane is depressurized, we are told to put the oxygen on ourselves before tending to others. “Otherwise, you become disoriented and then you can’t help at all.”

Finding an ally is also pivotal. For my partner Jim and me, that person has been Barb Steele and her assistant, Gina. I was also able to find allies and valuable information by joining a support group for caregivers. Believe me, I am not the group-meeting, share your inner feelings type of person, so I was initially hesitant to get involved. Since there were no local groups that met at a time convenient for me, I joined an online group at The Wellness Community. Despite my expectations otherwise, we spent as much time laughing as we did crying and worrying. It was laughter well-earned and much needed.

Whether in a group setting or one-on-one, being able to talk to someone who understands the challenges of a caregiver is vital. It’s only natural to have negative thoughts, to feel guilt, to grow to resent the patient while recognizing that it’s not his or her fault, to mourn the loss of the life you formally knew, and to miss the person that the patient once was. Realizing that such feelings are normal and that they don’t make you a bad person is key to your mental stability. It’s one way that caregivers can “put the oxygen on themselves”.

The NFCA reports that those caring for a spouse are six times more likely to suffer depression and anxiety and twice as likely if the patient is a parent. Unfortunately, they are also more likely to develop serious illness themselves, so taking care of oneself while serving as caregiver is imperative. “It’s a hard lesson to learn,” Barb Steele notes. Rest, diet, and exercise are vital. If not dealt with, the physical and psychological damage places a further strain on the medical community, as the caregiver then becomes patient.

The final lesson caregivers must learn, and one that affects those who aren’t caregivers, is that relationships will change. Some of my friends pretended nothing had changed in my life; others acted as if the cancer was the only thing that I could talk about anymore. If you know someone who is a caregiver, it’s OK to ask if they want to talk about it or to express that you aren’t comfortable discussing illness. Realize that the caregiver’s life has changed, often radically, but underneath, he or she is still the same person whose company you came to enjoy.

According to Stephen Healey in Gender, Place & Culture: A Journal of Feminist Geography, the lessons that society can learn from the work of caregivers, who Healey refers to as “the informal sector” of healthcare, should serve as a model for health care reform. Healey warns that the economic structure of reform could result in increased demand for caregivers, as “large, well-funded public sector” of health care may reduce access to health care, thereby requiring more work on the part of caregivers. Although Healey’s conclusions were published before President Obama introduced the current health care bill being considered, his suggestions are wholly relevant to the current debate:

Both sides of the health care reform debate are focused almost exclusively on a miserly consideration of how best to economize on formal sector care costs. For our purposes, if the health care reform debate is at an impasse, perhaps an exploration of the informal sector might allow for a different approach to health care reform. Informal caregivers are, after all, not financially compensated for their efforts and therefore cannot be understood through the lens of demand inducement. (“Caring for Ethics and the Politics of Health Care Reform in the United States”, June 2008)

The distinction between those invested in the health care debate and the average caregiver is the difference between “self-interest” and “ethical commitment”. Caregivers have no ulterior motive or desire for financial reward, Healey argues. “It is difficult to see their actions falling under the sign of rational self-interest”, he notes, thus making their motivations of primary significance. Were lawmakers to seek a better and more empathetic understanding of the work of the caregiver, health care reform would reflect an economic model that placed altruistic motivation above financial consideration.

In seven days from the day I write this, Jim will undergo the first of this round of chemo. I’m better prepared this time. I know that the steroids he must take will make him an emotional wreck — he’ll cry at the most sentimental commercials and laugh uproariously at his favorite sitcoms, often within minutes of each other. He’ll lose his hair. Our diets will change to insure that he has lots of protein and fiber. He’ll sleep more. Or not at all. He’ll lose much of the feeling in his hands and feet, a symptom of the chemo drugs. He’ll get depressed and declare that he is ready to just die. And he’ll get energized and fight like hell to live. And I’ll be right beside him on this journey, sharing every emotion, worry, and physical challenge.

After all this, I — and every other caregiver — deserve a month of recognition activities in our honor — a parade, a banquet, and a thousand news stories singing our praises. It’s not a role we would ever choose for ourselves, but it’s one we do with honor and pride. Think of the most important people in your life. Would you do any less for them?