Getting Organized

I’ve been a caregiver for 30 years. Sometimes my commitment was a few hours a week. Sometimes the situation escalated to the point where it required moving in with the person for a few days or weeks. Most of the time I was part of a team of caregivers who shared the work and the responsibility, but there were times when I was on my own.

My background is in business management, specifically computer systems—very linear and left-brain stuff. I used to teach classes in an organizational style called “Management by Objective,” where work was divided into projects. Each project was described in terms of goals, objectives, tasks, skills, timelines and cost.

When outrageous fortune brings us a sea of troubles, the first response is usually shock, followed by an emotional roller coaster ride. In my experience these reactions never really go away. They just become the background to the foreground of daily tasks. But these emotions can sometimes overwhelm and obscure the fact that caregiving is a job that has objectives, tasks and a schedule. Organization is essential. The sooner one can get organized the better.

The challenge of getting organized increases in proportion to the number of specialists, treatments, prescription drugs and other requirements specific to the person and his/her condition. There’s a saying that all politics is local. All sickness is local. It happens to a body, in a specific place, at a specific in time.

A good way to make the invisible visible is to write things down. In an earlier blog entry (Off the Radar Screen) I mentioned a TV special program, The Caregivers, produce by the UC San Francisco department of Neurosurgery and the Osher Center for Integrative Medicine. One of the caregivers featured in this program kept a daily log during the year he took care of his wife who had brain cancer. After his wife died, the man showed the inches-thick binder to his wife’s neurologist, who was stunned by what he saw. He had no idea of the complexity, intricacy, and burden of the daily care provided by the husband. For the physician this was a whole new universe.

What's in a Word?

The word “caregiver” is often used indiscriminately to describe medical professionals and social workers, as well as family members and friends who provide unpaid services. This loose use of language contributes to keeping caregivers invisible. There is a world of difference between a doctor, seeing a patient for 10 minutes every month, and a wife changing her husband’s diapers several times a day.

I prefer to use the term “care provider” to describe professionals who see clients at appointment times, are paid for their services and work within a clearly defined sphere of influence—doctors, nurses, social workers, physical therapists, home heath aides, etc. I reserve the term “caregiver” to describe the person responsible for performing the myriad tasks required on a daily basis—the volunteer or the draftee, usually unpaid and often unrecognized.

Many caregivers are family members, but there are also many caregivers who are not family in the traditional sense—partners, friends, neighbors. Ask anyone who worked in the HIV epidemic about the crucial contributions that were made, and are still being made, by friends and neighbors and even total strangers, in caring for people for whom help from family was a distant dream.

Why is this important? Language shapes perception. Words have meaning. Their use has consequences. Titles connote value and prestige—doctor has more weight than nurse, which has more weight than caregiver.

Some people use the term “lay” caregiver to distinguish the personal from the professional caregiver. This creates a problem for me. The word lay connotes a hierarchy, such as exists between a priest and a congregant, where role of the laity is to pray, pay and obey. It carries the implication of “less than”—less educated, less aware, less capable, less invested. I and many other caregivers have encountered doctors who see themselves as the Authority who must be obeyed and paid and never questioned.

I also bridle at the term “informal” caregiver. Informal carries the connotation of casual, unstructured and “laid back.” This simply does not apply to the intricate and taxing responsibilities of the personal caregiver, which require precision and attention to detail when dispensing medications, performing tube feedings, keeping track of medical records and appointments, etc.

In the interest of having an honest and fruitful conversation about caregiving, it’s helpful to be precise about job descriptions, avoiding terms that consciously or unconsciously demean the job of caregiver.

Drafted

The caregiving zone can be divided roughly into three groups.

The first group is comprised of medical professionals who may be drawn to work in their profession by a variety of motives—idealism, an interest in science, stable and respected employment. The second group contains the patients who need the medical goods and services offered by the professionals because they are sick and in pain. They enter the caregiving zone unintentionally. They are often confused, tired and scared.

And then there is Group Three—the unpaid caregivers who help to carry out the instructions dictated by Group One. How did these people get there? Most are drawn into the role of caregiver when someone they know, love or feel responsible for requires assistance. It often starts small—a ride to the grocery store, a trip to the drugstore, making lunch. Sometimes it ends there…a crisis is averted the ordeal managed with adrenalin. It was a sprint.

But, what if the needs continue to escalate? What if it’s going to be a marathon rather than a sprint? We become long-term members of Group Three—caregivers—a largely invisible, unacknowledged, yet absolutely essential element in the medical equation.

Caregivers often feel drafted into service. Friends and family may advise them to just walk away or get someone to help, but what if there isn’t any one else to drive mom to her appointments, or get grandma to the toilet, or set out the medications for dad? It’s only when the situation is upon us that we learn, first hand, that there might not be anyone else around to help. I can remember feeling the world shrink, returning from the hospital or a doctor’s office, standing a living room or kitchen, realizing that the world had suddenly become very small—that I was It.

For me this can often be the core of stress—the feeling that there is no choice. You’re trapped. Fear of appearing disloyal prevents you from talking to anyone about how you feel. But this feeling of being trapped—drafted—is commonly shared among caregivers. Expressing your experience to a trusted friend can relieve guilt, reduce the weight of self-pity, lift fatigue, and possibly strengthen a friendship.

Feeling trapped is only one of a number of competing feelings on the caregiving continuum—from feeling happily useful to feeling trapped; feeling loving and tender to feeling almost hateful; feeling frustrated rage towards a doctor, as well as gratitude. Whatever the feeling, it’s probably a common one and expressing it can be a relief.