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© ALS Independence 2003-10
18 February 2010
By Michael Abernethy
“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
If you have no outside help, you become chauffeur, cook, maid, secretary, therapist, pharmacist, and patient advocate.
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?
“Order is not pressure which is imposed on society from without, but an equilibrium which is set up from within.” Jose Ortega y Gasset
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