Crucial Conversations #3

Interdependence at its best is healthy symbiosis. When I went looking for a definition of symbiosis I learned that a better term for my purposes is mutualism. According to Wikipedia

"mutualism" describes any relationship between individuals of different species where both individuals derive a benefit.[11] …Many biologists restrict the definition of symbiosis to close mutualist relationships….for example…an Egyptian Plover picking the teeth of a Nile crocodile…and a large percentage of herbivores have mutualistic gut fauna that help them digest plant matter, which is more difficult to digest than animal prey.[7] Coral reefs are the result of mutualisms between coral organisms and various types of algae that live inside them.[12] Most land plants and land ecosystems rely on mutualisms between the plants, which fix carbon from the air, and mycorrhyzal fungi, which help in extracting minerals from the ground.[13]

I love this kind of information! I also love that mutualism describes caregiving at its best---everybody thriving. For sure I know that many times the person I was caring for felt like a different species from me!

Mutualism is a great goal. It is also a craft. Requires shared disclosure and trust built over time.

Like any craft, having a teacher can be invaluable.

I think that this is one of the services that geriatric care managers can provide: working with all the parties to craft interdependence/symbiosis/mutualism.

As I write this I remember people like Anthony and Dan and Rich and Michael and David among others who insisted that we work out from the getgo what I was getting out of the relationship.

Elder Speak

It’s not just ostracized minorities who look for freedom from insults and societal prejudice as they navigate the aging process. The list of abuses against the post 60-crowd is long, ranging from physical and financial abuse to job discrimination. Thankfully many of us will never experience that kind of egregious maltreatment.

But I’ll bet that all of us have been or will be subjected to a daily kind of insult called “elder speak.” John Leland wrote an article about this topic in the New York Times entitled, “In ‘Sweetie’ and ‘Dear’ a Hurt Beyond Insult for the Elderly.” (October 7, 2008). He describes the words and tones of voice that insult the elderly—calling a woman “dearie” or “young lady” (my particular peeve) or speaking to an older person slowly in a loud voice.

Our society is aggressively ageist. I don’t think it’s enough to say that we are just youth-oriented, it’s more like we are in love with everything young. We are age-phobic and especially afraid of those fellow-travelers of aging—illness, disability, loss, and dependence.

It makes sense that we would be afraid, especially given the prevalence of the YOYO (You’re On Your Own) ethic. We do our best to follow the example of Buddha’s father, who raised his son in a palace, unexposed to aging, illness, disability and death—a world eerily similar to that promoted by ad agencies.

Leland’s article mentions interesting research done by Professor Becca Levy at Yale on the health effects of this kind of negative messaging. She finds that negative messages reinforce a negative self-image, which can affect overall health and even mortality. The negative image doesn’t just affect seniors individually, it affects them as a group. Careers in geriatrics and gerontology are not presented as attractive career goals. There are few programs and less funding. It also affects younger generations. They can pretend it will never happen to them, so they don’t prepare, failing to take advantage of the skills and experience of older generations.

New Ideas in Senior Housing

For decades we have been hearing about the juggernaut of the Baby Boomer Generation approaching retirement. There are dire predictions that caring for us will overwhelm services for the elderly and potentially bankrupt the country. Unless there is substantive change in policies and strategies for care, this may be true.

But wait! Aren’t we the generation of change? The generation that changed society in so many ways, from natural childbirth to “green” internment? The generation that invented the internet and demanded a say in our medical care, introducing concepts like holistic treatment and prevention and being proactive?

We are already seeing paradigm shifts in geriatric care that break the cohort into groups like the young-old and the old-old. We are not 60 and 70 the way our parents and grandparents were 60 and 70. I predict that the job description of Geriatric Care Manager will expand to include activities that are more about consulting, planning and advising. After all, who wants to be managed?

One sign of these changes is the rise of alternative housing strategies. For example, the Beacon Hill Village in Boston (http://www.beaconhillvillage.org/index.html), where seniors, determined to stay in their homes, created their own non-profit organization to manage the services that support their autonomy. To quote one of the founders: “I don’t want a so-called expert determining how I should be treated or what should be available to me…the thing I most cherish here is that it’s we, the older people, who are creating our own universe.” (New York Times, 02/09/06). They are not patients and victims. They are members of a community. More to the point, they are employers of the people who provide care—a very different power-dynamic than your basic nursing home. Similar villages are springing up across the United States, such as the Elder Spirit Community in Virginia (http://www.elderspirit.net/), whose founders wanted to live in a center that would “provide a spiritual setting for older adults…resonating with traditional associations of ‘elder’ with wisdom, leadership, dignity, and ritual.”

Sometimes the motivation to create alternatives stems from a desire for safety and freedom of expression. For example, there are an estimated three million gay, lesbian, bisexual and transgender Americans over 65. GLBT individuals often experience covert and overt discrimination in heterosexual senior housing and nursing homes. Like many other seniors, they want not only safety, but also the chance to create community with peers (http://www.thetaskforce.org/).

What’s significant about these projects is that they are organized by the seniors themselves. Planning takes priority over crisis management. Seniors are employers, not a captive population being forced into pre-existing care management structures. All sickness is local. When people need care, they need it in some place. Building in provisions for care before it is needed, so it can be accessed as needed, is efficient, cost-effective and, perhaps most important, it preserves self-respect.

New Tools

After I published my book The Caregiving Zone, I found myself at a turning point. Writing the book had enabled me to organize my ideas and reflect back on 25 years of gaining experience in providing caregiving services. What I hadn’t expected was that I would fall in love with caregiving all over again. I went looking for new ways to use what I had learned. I have been giving talks and workshops on illness, aging and dying, but I missed working with individuals and their communities.

Checking out websites on caregiving I kept coming across references to Geriatric Care Managers. As I read more about this relatively new profession I got excited. Here was a whole new set of tools for my caregiving toolkit. So I enrolled at the University of Florida in their Graduate Certificate Program in Geriatric Care Management.

What an adventure! I had to learn the technology—my first experience with a chat room. I became reacquainted with writing term papers, not to mention online midterms and final exams. Library research is a whole different universe from when I did my master’s degree years ago on the psychology and physiology of aging. Since then the whole field has changed. It’s all so different and challenging—research on the brain/mind connection, illnesses and their treatment strategies, geriatric psychology and pharmacology.

It’s an amazing process to be starting my fourth career at age 60.

In his book Management Challenges for the Next Century, Peter Drucker writes:

“One cannot manage change. One can only be ahead of it. In a period of upheavals, such as the one we are living in, change is the norm. To be sure, it is painful and risky, and above all it requires a great deal of very hard work.… To make the future is highly risky. It is less risky, however than not to try to make it.” (quoted in The Daily Drucker, pg. 69)

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.

Off the Radar Screen

The world of caregiving can be a confusing, exhausting and isolated place. A caregiver may feel as Hamlet did, afflicted by the slings and arrows of outrageous fortune and tossed on a sea of troubles. Some may even reach the point that Hamlet did and wonder whether it might be preferable to take arms against the sea of troubles and end it all, rather than to face the daily challenges and heartaches of caring for a seriously ill or dying loved one.

To my mind, caregiving needn’t be a choice between powerless suffering and escape. There is a middle ground where we can suffer through the inevitable tragedy, and yet fight against all the factors that make it worse. There are resources available to ameliorate the suffering of both the sufferer and caregiver. My aim in writing this blog is to point caregivers towards these resources, to take arms against ignorance and indifference and unnecessary suffering.

In her New York Times blog entry entitled The New Old Age, Caring and Coping, at http://newoldage.blogs.nytimes.com/, Jane Gross writes:

“Rarely does anyone tell us about hands-on care, about tube feedings, transferring bed-bound patients to wheelchairs or commodes, turning them to avoid bedsores, making judgments about which symptoms require immediate medical attention, and interacting with a cast of professionals often short on time, patience or shared information about the patient…What does it mean to be responsible for a sick, frail or demented loved one when you have no idea how to take care of them properly and nobody assigned to guide you, when you have no telephone assistance or home visits?”

One group of physicians in the Department of Neurosurgery at the University of California San Francisco is committed to addressing this isolation. They have set up The Caregiver’s Project in collaboration with UCSF’s Osher Center for Integrative Medicine and produced a TV special documenting the experiences of four caregivers and their physicians.

The video, The Caregiver, can be viewed at www.osher.ucsf.edu/caregivers/. I watched it several times and was moved by the stories of these courageous individuals taking care of family members while dealing with medical professionals. The producers don’t settle for sentimentality or taking sides. We see the good intentions, overwork, and struggle to communicate on the part of both the caregivers and the physicians. We see especially that the daily workload and stress of the caregivers is often completely off the radar of most medical professionals. It makes sense. Doctors are absorbed in their own world. But the film also offers glimpses into how mutual respect and productive communication can be achieved between caregivers and medical providers.