Suicide as a Long-Term Care Plan

Earlier this year I went to a talk about long-term care insurance.

On my way to the bus I caught up with one of the other attendees, a woman in her late 40’s. She commented that the talk was very interesting but irrelevant since she had long ago decided to commit suicide when she started to decline into old age.

I wish I had a dollar from everyone who has told me this is their plan to cope with the vicissitudes of aging. Suddenly three separate reactions vied for expression---like a Three Stooges episode where they are all trying to get through the door at the same time.

Anger. Perplexity. Compassion.

Anger because I have seen the aftermath of suicides. It is not a peaceful panacea. It seems to me as if the person embracing this strategy has already cut themselves off from the land of the living. Note: I am not talking about end-of-life issues resulting from terminal illness.

Perplexity because this woman is obviously educated and has resources. So many of the declines simply require supports. If one can’t drive---there are cabs. If one can’t hear---there are medical devices. I have had clients tell me that if they can’t drive that will be the signal that it is time to kill themselves. I usually ask “You’d rather die than take a cab?

Compassion because I sense the almost primal fear and dread that underlie this kind of decision.

In the meantime we are making our way to the bus.

I turned to her and asked: What if, when you get to old age, you change your mind?

Why not make a plan just in case? Wouldn’t you like to have a choice?

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.

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.