Monday, November 24, 2008

Social Networking Sites

The caregiving environment today, like the rest of our lives, is more complex and demanding than in the past. It’s not just about giving casseroles anymore, not that casseroles don’t have their place in the caregiving toolkit. Fortunately, there are new tools available to help manage the complexity.
A major challenge for every caregiving team is communication between all involved. What should be said? When should it be said? Who should say it? Communicating about issues surrounding illness and caregiving can sometimes be like the game of Telephone Tag, where information gets passed from person to person, with the result being that the message gets garbled and mistranslated along the way. Except in this case, people are sharing technical information about diagnoses and treatment and private information about feelings, choices and values. Misunderstandings, misstatements and fatigue can complicate well-meaning intentions. What’s the solution?

Here are two websites that can offer some help.

One is Lotsa Helping Hands (, a non-profit site created by Barry Katz, using his experience as a caregiver for four years, to help caregivers coordinate their information and schedules using a unique website. The site provides “an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during times of medical crisis, end-of-life caring, or family caregiver exhaustion. It’s also a place to keep these ‘circles of community’ informed with status updates, photo galleries, message boards, and more.”

The caregiving team chooses a coordinator who registers the group and creates an up-and-ready website. Only the coordinator can change the website. Caregivers can check the site for announcements, calendar information, resources and activities requiring volunteers. Medical information can be posted securely. Everybody can find out what is going on from a single source. The person receiving care can control how much or how little of his or her private information gets distributed. The service is free and there is a training video on line.

Another example of this kind of website can be found at To access the service, select “caringbridge org” from their main menu and then select “carepages:patient sites.” The site helps a patient create a free, personalized blog that helps him or her communicate with whomever he/she chooses. It provides the user with the means to communicate with friends, family and caregivers, post updates, share photos, connect with other patients and their families, and to search for and locate other people who have the same condition to get and offer advice and support.

Friday, November 21, 2008

A Guide to Planning

Just looking at caregiving websites will get a person thinking, “What if this happens to my mom? My husband? My friend? Me?” Many people may find it too overwhelming and stick it in their “One-of-These-Days” file. I know the feeling.

I found a particular gem on the AARP Foundation website ( entitled Prepare to Care: A Planning Guide for Families, a free 30-page booklet that can be downloaded from the website. It contains cogent information and well-designed forms to implement a five-step process including preparing to talk, forming a team, assessing needs, making a plan, and taking action. The booklet is written for intergenerational family use, but it can easily be adapted to work with non-traditional caring communities.

The introduction very sensitively states:
“Lack of planning doesn’t mean there is a lack of commitment. On the contrary, often families avoid discussions about the future simply because they don’t want to think about changes in the lives of the people they love the most…. Like writing a will or buying a life insurance policy, contemplating the “what ifs,” especially a serious illness or a loss of independence, can be downright depressing.
“So why not just throw this brochure on the ‘to-do’ pile for another day?”, it goes on to ask.

“Because failing to plan for future responsibilities can make a bad situation worse. And the loved ones you tried to protect by tip-toeing around the ‘uncomfortable’ issues will be the ones who end up suffering the most.”

I especially appreciated the first section of the booklet, Prepare to Talk. The authors ask some serious questions of the adult child who is planning to meet with aging parents.

“Who is the best person to start the conversation with your loved one(s)?

What is the most difficult thing for you about having this conversation with a person you care about?

How does your family usually respond when uncomfortable subjects are discussed?”

Wednesday, November 19, 2008

Get the Facts

In her October 30, 2008 blog entry, More Caregiving Resources Move Online, Jane Gross, writing for the New York Times at, lists several government, business and illness-specific websites for caregivers. She asks, “Do you use these and other websites? Do they save time and ease decision-making?”

These are important questions to ask, given that (1) there are an estimated 44 million Americans providing some form of care for family, friends or neighbors (AARP Bulletin, November 2008); and (2) the right information at the right time can prevent pain and suffering for everyone involved.

The November issue of the AARP Bulletin also announced the launch of a new Medicare website for caregivers at This site is a must-visit for anyone who is now or will be caring for a senior, or who will one day be a senior. It provides an overview of information on senior-care topics, including the basic Medicare health insurance system, getting second opinions, dealing with billing, home health care, prescription drugs, nursing homes, hospice care, and more. This is the kind of information that families need to know.

The site is written in plain English. I was especially glad to see how clearly the writers spelled out the policy for home-care coverage. Many families make the erroneous assumption that Medicare pays for all home care. It’s worth quoting the exact policy:

Medicare may pay for home health aide and homemaker services only if the individual requires skilled nursing care or therapy. The individual must also be homebound, have a plan of care that is prepared and signed by a physician, and the services are performed by a Medicare-certified home health care agency. Your state Medicaid program or Medicaid waiver program may pay for home health aides and homemakers if you qualify. Private long-term care insurance may also pay for health aide/homemaker services.” (italics mine)

Home care is expensive. For-profit agencies may charge anywhere from $16 to $25 an hour, depending on the services provided. They usually have a two to four hour minimum. Hiring an independent contractor can be less costly, but it has its own complications and challenges. Families can experience sticker shock when charged $50 to $100 to provide one bath and a breakfast for mom, maybe with some dishes and a load of laundry thrown in. “How many weeks, months or years is mom going to need this kind of help?”

The time to look at caregiving sites is early in the game. Learning the facts can lead to asking important questions, and it can be crucial to starting helpful, possibly awkward, but necessary conversations.

Monday, November 17, 2008

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.

Thursday, November 13, 2008

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 (, 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 (, 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 (

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.

Monday, November 10, 2008

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)

Friday, November 7, 2008

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.

Tuesday, November 4, 2008

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.

Monday, November 3, 2008


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.