The Caregiving Zone

Geriatric Management Consulting #7

2010-07-05T05:55:00.000-07:00

I know I tend to harp on the fact that everyone in the relationship network is going to experience illness, aging, dying some-way, some-how, some-when. I feel compelled because I often hear people say “if I die.” Not “if I die of this disease.” Not if I die tomorrow” but “If I die.”

I will make it simple. You. Will. Die.

Now that I’ve got that off my chest I want to talk about evaluations and skill sets.

Working as a project manager in both for-profits and non-profits I came to appreciate how crucial it was to evaluate the project upon completion. For example?

What worked?
What didn’t work so well?
What didn’t work at all?
How are people feeling?
What did we learn that we can take into the next situation?
What additional skills, materials, tools do we need for the next time.

Whether it’s business or knitting or making bread, one assumes that the first few times will be rocky but that with time and practice one’s skills (and the product) will improve.

Caregiving is a business and a craft. It is also a team sport---the opposing team members being pain, loneliness, physical want, despair. Any team sport requires a certain amount of physical coordination, skill, focus and the ability to be on a team. There is also love of the business, craft, sport driving us to improve.

I know from my work how wonderful it is to be on caregiving teams---family, friends, neighbors, strangers who become friends. I have worked with the some of the same people over and over in different roles, different groups, different situations. I can see how I’ve grown in skill and sensitivity.

Typically hospice offers bereavement counseling to families, but what about evaluation counseling so they can be better prepared, more skilled for the next time?

Geriatric Management Consulting #6

2010-07-02T08:00:00.000-07:00

Interpretation of Maslow's Hierarchy of Needs

Very often holistic can seem too New Agey, too soft as opposed to hard science.

To quote again from Michael Gerber’s The E Myth Revisited:

The greatest businesspeople (read: caregivers) I’ve met are determined to get it right no matter what the cost. And by getting it right, I’m not just talking about the business.

I mean that there is something uplifting, some vision, some higher end in sight that “getting it right” would serve. An ethical certainty, a moral principle…the continuous evolution…of our humanness… (pages xiii-xv)

Decades ago the psychologist Abraham Maslow posited a hierarchy of needs: physiological, safety, social, esteem, self-actualization. If we are looking at a person holistically, then we must take into account these levels of needs. If we are looking at a person in the context of a relationship network, each individual in that network has these levels of needs. Most likely he or she will be turning to others in the network to satisfy some of these needs.

Illness, aging and dying challenge us on every level of need. It doesn’t matter whether we are the person experiencing the crisis in our own body or the people in relationship to us. By the way, I think we all experience the other person’s illness in our own bodies at some level. For example, when one spouse has Parkinson’s, it resonates in the other. How not, if they have shared bodies and a bed for decades?

Too often the emphasis is on the physiological (diagnosis, treatment, transportation, finances, etc.). We have other needs to satisfy: safety, social interaction, esteem and self-actualization. Living with illness, aging, dying as caregiver, client or both at the same time (!) provides opportunities for “the continuous evolution…of our humanness…”

Geriatric Management Consulting #5

2010-06-30T08:12:00.000-07:00

Another sentence from the article on the E-Myth website (www.e-myth.com), The Challenges of a Family Business, that grabbed my attention:

“When we stepped back and looked at the business holistically…”

Gradually the medical field is starting to look at the individual holistically---not just a bag of parts. Still the conscious and unconscious contract between doctor and patient is one-on-one as if the person existed as an encapsulated monad. Relationships are ignored or endured as major or minor nuisances.

In my experience, often in order to meet professional standards (HIPAA), geriatric care managers, social workers, hospice nurses, etc. engage with the individual in the same way. Sometimes I also see these professionals hiding behind HIPAA perhaps to avoid those pesky outsiders.

If individuals in a family/friend system are to get quality personal and medical care going forward, holistic has to expand to include the relationship network. The person is going to be drawing on financial resources; require some amount of unpaid labor.

Who else is drawing on these resources of time, money and energy? Spouse? Children? Grandchildren?

Who else will soon be drawing on these resources?

Is there enough to go around?

So often I hear from medical staff instructions issued in the passive voice with the agent unexpressed: Your bandage will have to be changed every day.

Or the instruction completely ignores the individual’s ability to comply without assistance, be it meal preparation or transportation or personal care.

I realize that medical staff have no time for this kind of discussion but that doesn’t mean it isn’t essential. Too often I see families burn themselves out on one crisis. This can breed resentment and actual (realistic) fear in the survivors---what about me when my time comes?

When we stepped back and looked at the family holistically…

Geriatric Management Consulting #4

2010-06-28T08:06:00.001-07:00

Image courtesy of Michael Pflelghaar www.pfleghaar.com

Recently there was an article on the E-Myth website (www.e-myth.com): The Challenges of a Family Business written by their staff. It describes the unique challenges family businesses face and why these often fail. It brought to mind a response I sometimes get when I ask family members a question they don’t want to answer: That’s none of your business! I usually respond---but it is yours and it is important. Do you know the answer?

Caregiving is a family business. For me family includes all the formal and informal networks that characterize modern community life.

The article cites the University of Southern Maine’s Institute for Family-Owned Business. “Three underlying causes of failure…:1) unresolved conflict, 2) failed leadership, and 3) lack of shared goals on a personal, family and business level…also differences over management roles, sibling conflict, financial issues, and lack of long-term company vision…”

It is crucial to remember that eventually every person in the family system will need care whether it is acute, chronic, and/or endstage. Facing up to and resolving these challenges will improve everyone’s quality of life. As government sponsored social services evaporate it is the family/friend network that will provide the safety net.

Wouldn’t it be wonderful if that net was woven big and strong enough of the best materials possible, checked regularly for holes and mended in all the necessary places?

Wouldn’t you feel more secure given the inevitability of illness, aging, dying?

Geriatric Management Consulting #3

2010-06-18T08:00:00.000-07:00

I will be forever grateful to the colleague who told me about this book, The E Myth Revisited, Why Most Small Businesses Don’t Work and What to Do About It by Michael E. Gerber. His insights and suggestions are so relevant to the caregiving enterprise that I can easily imagine a book entitled The C Myth, Why Most Caregiving Situations Don’t Work and What to Do About It.

“The problem with most failing businesses (read: caregiving situations) I’ve encountered is not that their owners don’t know enough about finance, marketing, management, and operations (read: medical matters)---they don’t, but those things are easy enough to learn---but that they spend their time and energy defending what they don’t know. The greatest businesspeople (read: caregivers) I’ve met are determined to get it right no matter what the cost.

And by getting it right, I’m not just talking about the business.

I mean that there is something uplifting, some vision, some higher end in sight that “getting it right” would serve.

An ethical certainty, a moral principle, a universal truth….this book is not about endings, but about beginnings, about the never-ending game, the delightful and exhilarating process, the continuous evolution of our senses, of our consciousness---of our humanness---which only comes from being present in the moment, from being attentive to what’s going on.

I believe that our business (read: caregiving) can provide us with a mirror to see ourselves as we are, to see what we truly know and what we don’t know, to see ourselves honestly, directly and immediately. (pages xiii-xv)

See why I love this book?

Getting Back to Business

2010-06-16T08:59:00.001-07:00

My goal lo! these many years has been to configure work that balances money and meaning. Geriatric care consulting is rich in meaning---a combination of social worker, chaplain, geriatric psychologist, and grief counselor. Service opportunities galore!

But how to make a living as an independent?

Consultants typically bill by the hour. This does not work for my practice. After all these years as a caregiver/consultant I know that many of my client meetings (in person or on the phone) might be as short as 10 minutes. Often this is all that the caller can manage given the topic. Sometimes there is just a question or a concern that can be handled quickly. Sometimes it’s about needing a friendly voice. I don’t want the hassle of billing by the quarter hour and I don’t want people to feel inhibited because the meter is running.

My solution is more project-oriented---have clients put me on retainer for a period of time. It might be the duration of an illness treatment cycle (chemotherapy), looking in on a parent once a month or endstage care. Would include phone calls, e-mails, internet research, one or more in-person meetings each month.

So far several families have worked with me this way. They are satisfied and I love it.

Maybe I’ve done it---money and meaning in the same career!.”

Listening Ever More Deeply

2010-06-14T06:06:00.001-07:00

I just got back from an 8-day silent meditation retreat---a week with very few words. No voice mail, snail mail, e-mail, blogs, internet research, social networking of any kind. Letting go of all the relating I do on the horizontal (relationships) in order to focus on the vertical (from the depths of me to the depths of the universe---for me, the Christ).

What has all this to do with caregiving and geriatric care consulting?

The key to providing quality care is listening. Listening takes us beyond the complications into the complexity---the only place where anything real can be accomplished. The listening and the complexity have to match in intensity and dimension.

We all calibrate our listening instinctively---listen with half-an-ear to the radio in the background or our partner’s recitation about the day---all ears for the latest gossip or news about a loved one.

The conversations I’m having with people---aging, illness, dying---complexity to the power of 10. Periodically I need to deepen my ability to listen which means time in deep silence. The silence of bone marrow. The silence between words.

I read once (apologies to the author whose name I cannot remember) that listening in silence is like waiting for the water in a stirred-up muddy pond to settle. The newly stilled water is clear and mirroring. All those pesky complications keep things stirred up---muddy the waters.

Maybe one of our major contributions as consultants is listening the client(s) into their own clarity? I get the sense that complications can be scary and exhausting while complexity can be inspiring and energizing.

Gotta love those depths!

Geriatric Management Consulting #2

2010-05-28T08:00:00.000-07:00

Focusing on managing a geriatric care enterprise gives us access to the amazing resources of the management consulting field: clarifying the mission; facilitating cooperation; planning; etc.

Families are complex systems (Bowen). Family members are typically caught up in events from the past and the concerns of the present. Medical issues create another layer of complexity. Same with economic pressures. Why would anyone want to add another element?

A knowledgeable outsider can offer a perspective on a larger picture---one that includes the future as well as the past and the present. He or she is not embroiled in the family saga. Of course in times of crisis families tend to circle the wagons--- the outsider (and the news he/she brings) might not be welcome.

Still, thinking about family caregiving as a family business, good management can make all the difference especially when

resources like time and money are in short supply;
the enterprise is fraught with all sorts of negative history and disagreements;
organizing for the future is mired in procrastination; and
quality of life is at stake---for everyone involved.

Geriatric Management Consulting

2010-05-26T08:00:00.000-07:00

A recent family consult made it very clear that Geriatric Care Management Consulting is as much about management consulting as geriatrics---perhaps more. In my first career I worked as a management consultant---planning, time and expense, evaluation, etc. Given the high cost of aging and the economic downturn---I am using that vocabulary more and more.

There is a wealth of information about diseases, the aging process and caregiving on the Internet. One service the GCM provides is vetting this information for the user.

I suggest that there is a whole other kind of essential service---managing the care enterprise. One family recently moved their father into an assisted living facility at a cost of $4K/month. His health needs and early dementia require this level of care. Given a life expectancy of 7-10 years---his care will cost between $336K and $500K. Does he have that kind of money? If not, what is the estimated shortfall? What is the plan to cover that shortfall?

It’s a given that a geriatric management consultant would bring knowledge about aging. He/she could also bring detachment, awareness of the big picture and current info about costs, asset management, resource allocation, etc. Skill in meeting facilitation will also contribute to the success of the enterprise.

Because this is an enterprise---a not-for-profit financial organization that has a specific mission---the long-term care of the parent.

The geriatric management consultant might be even more essential if that enterprise is underfunded---more and more common these days.

Little Hospital on the Prairie

2010-05-24T09:11:00.001-07:00

Sue Lowden, the Senate hopeful from Nevada, has come under fire for her suggestion that we return to the good old days of bartering for medical services. I was thinking about this as I talked with several clients about their perambulations through the medical system in search of diagnoses and treatments.

Given that each of them had received services from at least 6 professionals (referring physician, bloodwork, radiology, oncology, pharmacy, geriatric care manager) would they have to bring a chicken to each one? Now we’re talking a whole flock of chickens! Speaking as one of those professionals---I have to pay cash for what I need so I prefer to be paid in cash.

I feel great compassion for Ms. Lowden. She seems to be as overwhelmed as the rest of us by the complex cost/payment structures that support the medical industry. No wonder she longs for the good old days on the prairie. TV series like the Waltons and Little House on the Prairie show us people who are poor but happy; living simple lives and possessing a kind of virtue hard to find in modern urban society.

We need to remember the reality---that most of these farmers worked like dogs for a precarious hand-to-mouth existence. Life was nasty, brutish and short (Hobbes). Modern times brought all sorts of new complications but it also brought abundant food, leisure, public health and medical care for a great many of us.

As a result life became relatively easy, civilized and long.

We’re only going to be able to solve our health care crisis by focusing on the present moving toward the future. How else to avoid lives that are nasty, brutish and long (Rosofsky)?

Nostalgia for a time that never was gets us nowhere.

Dudley Do-Right

2010-05-21T08:00:00.000-07:00

Remember the Rocky and Bullwinkle Show? One of the segments was the on-going saga of the villain, Snidely Whiplash; the victim, Nell Fenwick; and the hero, a Canadian Mountie named Dudley Do-Right. The gist of the saga was that Snidely put Nell in various kinds of risky hostage situations and Dudley and his horse, Horse, would rescue her---with piano music from the old silent movies playing in the background.

Yes, the cartoons were a satire. Yes, intellectually we can see that these are caricatures. But the genius of it was that each of us is all four of these characters.

The saga often gets constellated on a caregiving team. Sometimes the sick person and/or the primary caregiver are Nell. Medical and insurance bureaucracies are usually Snidely Whiplash---also the occasional doctor and nurse and maybe a family member. The primary caregiver can also be Dudley Do-Right. The care-giving team (paid and unpaid) is usually Horse.

You can almost hear the silent-movie-piano music in the background.

Having myself been Dudley in all his well-meaning ineffectualness, as well as Nell and Snidely, I know how easy it is to get swept up in the drama. Horse is always the clear-seeing effective outsider.

No wonder Nell is more interested in Horse than Dudley.

One of these days I’m going to show these cartoons at a caregivers meeting.

Fellow Sufferers

2010-05-19T08:00:00.000-07:00

I used to organize teams of volunteers to care for individuals during the final phase of their life. Mostly it was HIV disease but also various cancers, ALS, Parkinson’s, diabetes, old age. The client would give me their address book and I would start phoning. I also had my own network of folks who liked to volunteer.

I was prepared for a straight yes or no. I was not prepared for the questions: “How did they get the disease? Did they bring in on themselves by their lifestyle choices? Is he or she an innocent victim or could it have been prevented?”

In other words---if it’s lung cancer, did they smoke? If it’s HIV, did they engage in unsafe sex? If it’s diabetes, were they gluttons?

Many would volunteer but there were always some who only wanted to care for the innocent victim.

Given the complex interactions of environment (chemical, socio-economic, geographic), genetics, lifestyle, etc. figuring out the complex etiologies of disease is like Star Trek’s three dimensional chess. There is seldom, if ever, one cause---the magic bullet.

I think that the victim paradigm can give us the illusion of control. If I avoid this or that I will escape illness. If I engage in this or that behavior, I will avoid illness. Then, if something happens to me, I am an innocent victim.

But illness happens to us all. It is ordinary life. We are fellow sufferers.

There is a story about the Buddha encountering a woman whose child had died. She was so grief-stricken she kept looking for a miracle-cure; would not bury the poor little dead body. She asks the Buddha for a miracle. He says he will do it if she will bring him seeds from every family where someone has not died. As she travels around with her dead child’s body she hears story after story about the commonplace of illness and death. She returns to the Buddha, empty-handed but newly sane.

She buries her child.

Medicare Survey – Long Term Planning Tool

2010-05-17T08:00:00.000-07:00

A colleague mentioned this assessment to me. You can go to the Medicare website www.medicare.gov and take the survey (20 questions). One note---there is a problem with question 16---best to skip it. Also I printed out each page as I completed it so I would have the questions and my answers as well as the analysis.

According to Medicare, folks of my age with my health history will need an average of $230,050 to cover long term care needs. Given that this is an average I might need nothing and I might need $460,100. I’ve been a caregiver too long to assume it’s none. So it’s a quarter of a million dollars or half a million dollars!

Talk about sticker shock.

What if I don’t have this kind of money?

The summary of the findings also suggested that I might need also an average of 3,364 hours of informal care from family and friends. Again, that’s none or 6,728.

I’ve been a caregiver too long to assume it’s none.

Do I have family and friends who are willing or able to provide between 3500 and 7,000 volunteer hours of care? After all we will all be of an age---they will have their own infirmities. To put it in perspective, if we assume a 20-hour week, that’s between 3 and 7 years (allowing for an annual two-week vacation).

Another kind of sticker shock.

I would recommend reviewing questions 12-17 on a regular basis. Sometimes it is easier to confront hard questions about our capacities in private. If at all possible talk these over with someone who will provide honest feedback. In fact, if you’re really brave have someone close to you (friend, colleague, sibling, son or daughter) answer these questions out of their experience of you. Compare their assessment of you with your assessment of you.

Facing Deficits

2010-05-14T06:00:00.000-07:00

Image courtesy of Michael Pfleghaar. www.pfleghaar.com

Ariana Huffington (huffingtonpost.com) wrote a seriously scary blog entry Life in the Age of "Much Worse Than We Thought It Would Be". I recommend reading the whole article. Here are excerpts particularly applicable to the future of aging and caregiving.

“That's the nature of unprecedented things -- they've never happened -- until they happen. But just because something is unprecedented doesn't mean it's unpredictable or that we're unable to plan for it. We can't see the future, but we can prepare for it…and there are some other "unprecedented," "unique" -- and potentially catastrophic -- problems headed our way if we continue to accept the old order's lack of imagination about what is possible.”

She is writing about America’s debt crisis. She could also be writing about the crises that face our aging population: cost of care, dementia, caregivers, etc.
“The needs of the past and the demands of the present exert a powerful pull on our attention while the future doesn't have many advocates -- it's always something we can get to later. And there was a time when we could get away with pushing our problems down the road, secure that our reserves would always bail us out. And there was a strong safety net to catch those who fell through the cracks. Well, those reserves are gone now and the safety net is frayed and full of holes.”

I love that she talks about imagination. Confidence in our creativity will give us the courage to face these looming realities.

On a national level.

Around the dining room table.

Peggy Flynn MA
The Caregiving Zone
www.thecaregivingzone.org
415-236-1691

Mini-nursing Homes / Mini-Locked Facilities

2010-05-12T08:00:00.000-07:00

The New York Times ran a front page article on Wednesday, May 5, 2010: More With Dementia Wander From Home. The article describes the challenges faced by families and law enforcement in finding people with dementia who have wandered off driven by whatever impulse.

According to the article 6 in 10 dementia victims will do this at least once. Many will be found. Some will die in accidents or of exposure. A while ago I quoted statistics from Maria Shriver’s e-mail to The Huffington Post (www.huffpost.com):
“…There are nearly 10 million Americans providing…care to people with Alzheimer's disease or other dementias…And believe it or not, there are getting to be almost as many kids actually "babysitting" a grandparent with Alzheimer's at home as kids babysitting children…”

That’s millions of mini-nursing homes. Some of these need to be mini-locked-facilities. How does a teenager keep Grandma from leaving the house?

In my practice I see over and over again how reluctant medical personnel and family members are to confront this reality…deal with the ramifications. Institutional locked facilities are too expensive for most families. What else is available? One possibility are wristbands from Project Lifesaver, a non-profit, that can be used for tracking by law enforcement with radio devices.

I would like to see a basic protocol. At the first sign of mental and/or cognitive deficits the person would get tested. If there is a dementia diagnosis the individual and their network (family, friends, professionals) would meet with a trained professional to learn about future potential problems and appropriate coping strategies.

Dementia is a social disease. No, it is not contagious, but everyone is impacted---and not just the immediate family.

What about all the follks diagnosed with one or another form of dementia who are still driving?

Peggy Flynn MA
The Caregiving Zone
www.thecaregivingzone.org
415-236-1691

Conversation Stoppers

2010-05-10T08:00:00.000-07:00

I attended a workshop recently---When Death Comes: A Contemplative Approach to Compassionate Care. Both presenters, Joan Halifax and Frank Ostaseski, stressed the importance of having conversations about dying and death. I found myself thinking about ways we prevent these conversations.

I have a sense of why we don’t want to talk about illness, aging, dying, etc. Some fear it will make these catastrophes happen. Some fear (and quite rightly) that it will strain already strained relationships. Some of us have never learned how to talk about difficult matters. It can be hard to talk across the generations. It can be especially hard to face that there isn’t anyone to talk to.

Thinking about some recent family meetings, here are really great conversation stoppers:

“There’s no need to talk about it---I’ve got it handled.”

“That’s between your mother (or father) and me.”

“When you write the checks you can make the decisions.”

“My house, my rules.”

Crying. Yelling. Stony silence.

Turning the TV on and/or turning it louder.

It can be really helpful to have a trained facilitator to keep the conversation going---for example, a geriatric care manager.

Peggy Flynn MA
The Caregiving Zone
www.thecaregivingzone.org
415-236-1691

Caregiving on the Horizontal

2010-05-07T08:00:00.000-07:00

In the early 90’s I was the primary caregiver for my Dad at the same time I was doing caregiving for clients who had HIV disease.

I was aware from the get-go that there were major differences between caring for people much older than me and those who were in my age group; also caring for a parent is different than caring for clients and friends. Some of the differences are very obvious---age, relationship configurations, family stuff, etc. Some are more subtle---information sharing, making agreements, building trust, etc.

I worked to develop a model to illustrate the differences. It’s important because more and more of us are caring for and being cared for by friends and neighbors. Breakdowns in communication are stressful for everyone.

Caregiving on the vertical is what we consider the norm---inter-generational---family members taking care of parents. Family members have a long history with each other, shared values, often a private language, and expectations of each other (often unvoiced, even unconscious).

Caregiving on the horizontal occurs when friends and neighbors are providing care. There might or might not be a long history and shared values. There might or might not have been a lot of disclosure and/or expectations.

Here is one example of the difference. A mother can say to her daughter (out loud or tacitly)---I am your Mother; (implication: you owe me)---and not worry particularly about the cost/impact of the extra work on her daughter. In her mind it is balanced. She took care of her mother and now her daughter is taking care of her. She gave her daughter life and years of care. Now her daughter is doing her duty in return. Life goes on.

Most of us were conditioned to this kind of inter-generational flow of care. But what if it is a friend who has breast cancer or HIV or ALS. How do we even begin to talk about helping each other out? Keeping the exchange balanced? Noticing when we are acting out of our family history with folks who are not family?

Mutualism in the Movies

2010-05-05T08:00:00.000-07:00

Last night I watched Clint Eastwood’s movie, Gran Torino. Here we have an old man, newly widowed, who’s once all white Midwestern neighborhood is now a community of Hmong. Walt is a retired auto worker---house-proud, foul-mouthed, bigoted, truculent, mutually estranged from his children and grandchildren and afflicted by bitter memories from the Korean War. He also has advanced lung cancer.

His teen-aged next door neighbor, Thao, as part of his gang initiation tries to steal Walt’s pride and joy---the Gran Torino. Walt stops him in the act. Later the boy’s sister comes over to explain that the boy has to work for Walt for a period of time in order to make amends. Initially Walt refuses but then agrees. His neighbors begin bringing him offerings of food and flowers which he first throws away and then accepts.

Where do we see mutualism---a relationship between individuals of different species where both individuals derive a benefit? Three scenes come to mind:

--Walt eating mostly beef jerky till his neighbors shower him with food---which he comes to accept.
--The contrast between his son bringing him a reacher (a tool used to access stuff on shelves---to avoid the dangers of getting on a step stool) and Thao’s sincere awe at Walt’s many competencies.
--Saving Thao’s life in a way that both guarantees the boy’s future safety and lifts the burden of guilt Walt has carried since the war.

None of this could have been organized in advance. It is about people whose needs exceed their self-sufficiency---pushing them to at least try to relate to each other.

Emerson’s Self-reliance meets Hillary Clinton’s It Takes a Village.

Crucial Conversations #3

2010-05-03T08:00:00.000-07:00

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.

Crucial Conversations #2

2010-04-30T08:00:00.000-07:00

What are some of the factors that inhibit these crucial conversations?

I suggest there are four major factors:

1. We equate being an adult with being in the public sphere, independent and self-sufficient.
2. Bodily functions are considered to belong to the private sphere, the private self. If we talk about these at all we do so with professionals in private offices.
3. Weakness and disability are considered abnormal, almost aberrant. Never let them see you sweat!
4. For our ancestors roaming the savannah, the desert, the forest---the old and the weak become prey when they fell behind or looked weak---we still have that deep memory and the instinctive drive to keep up, hide disabilities.

As a consequence:

~We hide aging and illness in the private home and denigrate dependence on others.
~We don’t know how to communicate about our disabilities in a way that furthers respectful interdependence.
~Like many behaviors that used to be pro-adaptive, the instinct to hide needs and weaknesses can sometimes be mal-adaptive.

I think that hearing aids are a perfect example of the potential for maturing from independence (often a cover for hiding a disability) to respectful interdependence.

There is nothing wrong with my hearing. People these days just don’t speak up. My TV is not too loud---and anyway---My house! My rules!

Vs.

I will wear a hearing aid so that I can better communicate. I trust the people around me enough to reveal my disability. Also I can contribute to their quality of life by not assaulting them with the noise from my TV.

Crucial Conversations

2010-04-28T08:00:00.000-07:00

There has been a much-needed push in the media to get people to talk about end-of-life issues with their doctors and with family members. As important as these conversations are I suggest that conversations about aging are more crucial. Why?

The dying process is hugely important but relatively short-term (weeks or months). Much of the sequence and rhythm of events is dictated by the illness that is now terminal. Family and friends are called upon to provide company and care in this highly charged atmosphere. Lots of drama and adrenalin.

The aging process is more of a decades-long marathon. Most everyone who ages will experience some combination of

various chronic conditions, for example, arthritis, hearing loss, diabetes, memory deficits, etc.
acute illnesses at intervals, for example, cancer, stroke, heart attack, broken hip, knee surgery.

Almost everyone will eventually need some assistance with the normal activities of daily living ranging from food preparation to transportation to personal hygiene.

We may not know exactly what will go wrong and when but we do know that there are going to by these kinds of problems. My questions is---how do we begin to talk with each other about these probable futures?

So much is at stake!

It isn’t until we start to talk honestly that we can discover to ourselves and to each other our current condition, probable futures, values, assumptions, ignorance, fears, hopes. Especially we need to talk to the people on whom we will be depending---whether we like it or not; whether we want to or not---so that the partnership can be as informed and consensual as possible.

Suicide as a Long-Term Care Plan #2

2010-04-26T08:00:00.000-07:00

While I was venting my frustration with the suicide-as-a-long-term-care-plan strategy, my colleague, an investment counselor, remarked that these folks should “put that in writing and give it to their kids.”

For once I was speechless. I really had to think about the ramifications of what he said.

At some point everyone who is aging will need services, equipment, and medical treatment---long-term and/or short-term.
Somehow these have to be paid for or donated---individual resources, family, friends, local organizations, government.
When I think about all the people I know who do not have kids to notify---do they send their intentions to their siblings, friends, and people at church?

How would this notice read? For example:

“This is to let you know that I have decided to make no provision for my needs as I age. I am opting to commit suicide at the point when I can no longer take care of myself. I do not want to be a burden. I am not expecting you or anyone to take care of me. You are all officially off the hook.”

We are really dealing with two groups. One, the huge number of people (70+) who could never have imagined living so long let alone amass the resources to fund these decades given the realities of today’s aging milieu. For example, my oldest client just died at 102.

The second group, to which I belong, are the 40-70 group. We have to face up---longevity will be the norm, an expensive norm. For us, planning and providing for old age is not just about taking care of ourselves---in my opinion it’s a much more life-affirming way to let others “off the hook.”

Suicide as a Long-Term Care Plan

2010-04-24T08:00:00.000-07:00

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?

Now That I've Actually Been in Practice...

2010-04-22T08:35:00.000-07:00

I stopped writing this blog for various reasons. At the top of the list was wanting to have more actual geriatric care consulting experience with individuals and families. Now, after 20 such adventures, I want to capture some of the anecdotes and insights.

First of all, in all twenty situations I was called in by family members or friends---not by the individual who was the focus of concern. The main reasons the individual did not make the call him or herself:

~Incapacity
~Unaware of any problems
~Wanting to keep problems “in the family”

The main reason that a friend or family member made the call---the individual’s problems were beginning to impinge on their lives to an extent that could no longer be ignored. Impinging how?

~increasing awareness of a parent’s or friend’s failing ability to cope with daily activities
~worrying about resources (time and money)
~worry about future risks and future resource requirements
~growing awareness of how little information they had
~growing awareness of the lack of any kind of plan
~fear that he or she would be stuck with the care---would have no choice in the matter

It is very upsetting to find oneself looking at a loved one and experiencing mostly worry, insecurity, the anxiety of unanswered questions and perhaps some dread mixed with resentment.

I am learning that it is vital to get these feelings out in the open without judgment as early as possible. This honors everyone’s reality. Clears the air for the hard work ahead.

Mutualism as a Caregiving Model

2010-03-07T08:00:00.000-08:00

Thinking more about Clint Eastwood’s movie, Gran Torino...also scenes from Witness where Amish farmers come together first to build a barn and then to defend Harrison Ford and the Amish family from corrupt cops.

Mutualism is custom designed for each species partnership. It can’t be legislated. It has to grow out of the specific needs of the participants. It evolves. It might be qualitative and/or quantitative.

Why do I think that mutualism is the best model for caregiving and especially for providing long-term care?

There is less paternalism and co-dependence because all parties are interdependent in ways that can be observed and measured.
It is possible to maintain self-respect no matter how dependent one is for services.
It is possible to maintain self-respect no matter how menial the caregiving tasks are.
Mutualism as a relationship process can be developed, strengthened, and repaired as required.
Mutualism offers a way to talk with family members about caregiving realities in a way that temporarily transcends habitual family communication patterns (family history, the various family trances).

Place is a major factor in mutualism. The characters in Gran Torino are next door neighbors---Walt won’t move and the Hmong families can’t. The Amish farmers In Witness depend on each other---come running when the alarm bell is rung.

We saw a real-life example of this in San Francisco during the worst of the AIDS crisis. Many elderly Irish Catholic residents in the Castro were leery of the young gay men pouring into (and changing) “their” neighborhood. As more and more of these interlopers became sick from this strange new illness many of these neighbors provided all sorts of care. What made it mutual?

Caring flowed both ways.

Why Don’t We Plan

2009-10-12T08:29:00.000-07:00

I just finished A Long Bright Future, An Action Plan for a Lifetime of Happiness, Health, and Financial Security by Laura L. Carstensen, PhD. The book offers a comprehensive overview of the current realities, possibilities and challenges presented by our changing demographics.

Each chapter is rich in suggestions to individuals, employers, agencies, policy makers, etc. The basic message: the tsunami of aging baby boomers is upon us. How are we going to cope? What does coping look like?

Much of my work the past 15 years has been trying to get people to plan for their end-of-life---with very little success. I was curious to see how Dr. Carstensen handled the issues of planning for the future.

First she warns us: “retirement could revert to what it once was before the prosperity, leisure time, and health gains of the mid-twentieth century…a brief, unenjoyable period of sickness and infirmity that buffers the time between work and death.” Then she encourages us: “Thinking about what might go wrong helps us to prepare, so that we can avoid calamities…”

In Chapter 7: What Might Go Wrong, she describes obstacles to planning. I now understand much better how difficult it is for humans to imagine and then intentionally create different kinds of futures. She got me thinking---how many of us are children and grandchildren of people who came here reactively---fleeing misery---focused on survival? Many of us are recent descendants of peasants---where almost everything is out of the individual’s control: weather, war, sickness. Perhaps a one-generation veneer of middle-class security isn’t enough to rewire brains. I think of my grandmother intoning “Don’t borrow trouble.” Or the King James Version of Matthew 6:34: Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.

Depending on Your View

2009-10-06T17:13:00.000-07:00

Last week I was walking through a city near where I live---strolling along, enjoying the beginning of Fall, fending off the normal amount of requests for money. I had taken the afternoon off to wander around and visit some used bookstores.

Gradually it dawned on me that there was something different about the requests for money. For one, there were a lot more people sitting with signs and cups. For another, there was a lot less of the usual banter and funny signs (lwill work for beer). But the stunner was the number of elderly men and women sitting on the sidewalk with cups and signs. These were men and women in their sixties (my age) and seventies. What made them look elderly?

Ironically the book I had with me to read on the train was A Long Bright Future, An Action Plan for a Lifetime of Happiness, Health, and Financial Security by Laura L. Carstensen, PhD. Dr. Carstensen is the founding director of the Stanford Center on Longevity. She encourages the reader to “envision the possibilities of a longer life; design your future with smart choices you make today; diversity your social, civic, and leisure pursuits; and, invest in yourself, your family and your community.

The contrast could not have been more ironic, more bitter. How many of these people had been proactive?---envisioning, designing, diversifying, investing---only to find that events over which they had no control (like an economic meltdown or critical illness) had made a shambles of their plans for a long, bright future.

Dr. Carstensen makes some very good points from her 50,000 foot view. But what about the person on the ground whose best-laid plans have blown up in his/her face?

Getting Back in the Game

2009-10-01T09:05:00.001-07:00

I was shocked when I realized how long it had been since I did a blog entry. I have been doing so much at the computer: designing the brochure for my practice; learning LinkedIn; answering e-mails; writing reports; doing research etc. Surely in all that computer time I had written a blog entry?

It seems that my resistance to writing my own thoughts had used my Internet industriousness (and reading and thinking) to accomplish its end---no creative writing. Clever! What woke me up?

I have to give credit to the late Joan Erikson. I have been reading Erikson on Development in Adulthood by Carol Hren Hoare. Professor Hoare explored Erikson's published and unpublished works to discover his theories on adult development and how these evolved. She had also been conducting many interviews including some with Joan Erikson, then in her 90's. Joan Erikson, looking at her progress, said: “If you don't stop going around talking to people about Erik...this book is going to come out of your ears instead of your pen!”

I confess to the same tendency. One more article. One more book. One more exciting conversation. It doesn't look like procrastination... Still what people are writing and talking about today is so interesting and important.

People are starting to talk seriously about the realities of illness, aging, dying---the challenges and the costs. More people are questioning some of our basic assumptions like “do everything.” In my opinion even the “death panel” folks are providing a service. They are wrong, of course, but their extreme position is challenging those of us in the middle and those of us at the other extreme to state our positions/values/concerns.

Just what we need to have a healthy debate.

What’s in a Name?

2009-08-03T13:36:00.000-07:00

The main reason I got my graduate certificate in geriatric care management (2008) was to bring my skills up to date as I shifted from hands-on caregiving to consulting. So much of the suffering I’ve seen in my work could have been prevented with better information and prior planning.

For example, I work with an elderly woman who was diagnosed some years ago with myasthenia gravis, a degenerative neurological disease that can result in difficulties with swallowing and increased weakness in the arms and hands. Simple daily tasks like feeding and dressing oneself become impossible. As she begins to experience these disabilities it is obvious that none of her healthcare practitioners have discussed this condition with her. After the initial diagnosis the subject was dropped. Instead her various health care practitioners tell her how great she looks and that she will get to be 100. Now, at 94 and living alone, she is experiencing all those symptoms. She is caught by surprise. There is no plan. It’s crisis time.

Initially I called myself a geriatric care manager. This didn’t feel right. I don’t want to manage anyone and most adults don’t want to be managed. Then I tried geriatric care consultant which is a better description. Also people of my generation are used to working with consultants. However feedback from friends and colleagues was that most people hate the term geriatric.

A good friend asked me point blank “what was I trying to accomplish in my work with clients and their families?” My answer? Aging well! Working with individuals and their networks to design a style of life uniquely tailored to his/her specific circumstances. Key words: collaboration---coaching---confronting---creating.

Now---how do I put that on a business card?

Catching Up

2009-07-15T12:13:00.000-07:00

I was really surprised to find that I had not done a blog entry since the end of May which was almost 6 weeks ago. I can see that I have a ways to go in this new world of websites, blogs and social networks because it seems as if I just did this last week. I think my age is showing.

In the interim I have been consulting with clients, reading, and finishing a spinning project.

Consults have ranged from aging and two addictions (alcoholism and gambling), end-stage care issues for the family of someone with mental illness; suggestions on how to partner with parents to explore housing options; and the challenge of getting family and healthcare practitioners working together on behalf of an elder.

I love this job!

I will confess to being a perpetual student. I get caught up in reading and reading and reading. Most recently I discovered a biography of Erik Erikson by Lawrence J. Friedman. Much of my M.A. work was on lifecycle development in the second half of life and focused on Erickson’s theories. Of course reading the biography got me interested in rereading some of Erickson’s books, for example, Young Man Luther, Gandhi's Truth and The Life Cycle Completed.

I was excited to discover that there was an extended version of The Life Cycle Completed. I learned from the biography that Joan Erickson was not only a teacher and innovator in her own right---she had also been a close collaborator with her husband from the beginning. They had worked for decades on the development of lifecycle theory. Joan Erikson died at 94 in 1997, three years after Erik who was 92. They continued to rework their theories as they engaged/endured the vicissitudes of their own aging process.

Joan Erickson collected these insights into a Ninth Stage of Development. More about this ninth stage later.

He's Your Dad, Too

2009-05-27T12:29:00.000-07:00

There is a very interesting commercial produced by Liberty Mutual as part of their www.responsibilityproject.com. It shows a man and a woman driving through empty city streets in the pouring rain. They stop in front of a diner and see an elderly man dancing in the rain---no umbrella. The woman, obviously distressed, comments that Dad can’t live on his own anymore. The man turns to her and says, “What are you going to do.” She responds with some asperity that this is his Dad too. “You’re part of this family.”

What struck me right off? The woman is driving and looks very worried. The man is sitting on the passenger side---kind of slumped down---almost sullen. Right away you get that the woman has two problems: the parent who has dementia and a sibling who is signaling in multiple ways that this is no concern of his.

The day I saw this commercial, I had done a consult with a family whose mother has Alzheimer’s disease. Now in her early eighties, she is in an assisted living facility. She has enough money to cover the costs for the next 2+ years. Her children blithely assured me that once she had spent down her assets, government aid would pay for her nursing home care (Medicare and Medicaid).

My questions to them were: How can you be so sure? What’s plan B?

If they’re reading the same newspapers I am, it is conceivable that the increasing needs of the aging population and the economic recession are producing a perfect storm. Will federal and state budget deficits allow government to continue to be in the nursing home business? If not, what happens to people like my client’s mother?

If there is a chance that this family will have to share the cost of private pay for their mother’s care in a couple of years, it might be a good idea to confront that possibility now.

Caregiving Decisions: What is the right thing to do?

2009-05-23T07:51:00.000-07:00

Right for whom? Right for now? What about later?

Caregiving often requires hard choices about priorities---how to allocate scarce resources like time and money. How do we make these decisions in a way that works for us as individuals? How do we make these decisions in tandem with others who are also part of the equation?

Suzy Welch, in her book 10-10-10, 10 Minutes, 10 Months, 10 Years, A Life-Transforming Idea, offers a deceptively simple technique for evaluating priorities and making choices. Basically one asks oneself what will be the consequences of a particular choice in 10 minutes, in the next 10 months, and in the next 10 years. Of course no one has a crystal ball with which to accurately predict the future, but we can use our intellects to gather facts and our imaginations to describe probable outcomes.

Then comes the real challenge: making a choice. Even if the decision is not to make a choice at this time---one has examined the probable consequences of not making a choice.

Sound too existential? Think about this. The commitment to care for a parent or spouse or whomever is a commitment to dedicate resources. This often means transferring resources from one use or one person to another. Paying for nursing home care for a parent might mean less college tuition for a grandchild. Staying home to take care of someone might mean one less paycheck.

Thousands of families are already facing these hard choices; making these decisions. Many wonder if they are doing the right thing. Many feel torn between responsibilities to their parents and to their children. Using techniques like 10-10-10 can help us articulate the decision-making process and identify the values that underpin our choices. This can provide a place of peace when worry and doubt threaten to overwhelm us.

Mini Nursing Homes

2009-05-20T14:25:00.000-07:00

Another set of statistics in Maria Shriver’s e-mail to The Huffington Post (www.huffpost.com) provided backup to one of my major themes---more and more homes are becoming mini-nursing homes. She tells us:

“Seventy percent of people with Alzheimer's live at home, cared for by family and friends. There are nearly 10 million Americans providing 8.4 billion hours of unpaid care to people with Alzheimer's disease or other dementias - valued at $89 billion. And believe it or not, there are getting to be almost as many kids actually "babysitting" a grandparent with Alzheimer's at home as kids babysitting children. That's where we are.”

Let’s see, that’s somewhere in the neighborhood of how many million mini-nursing homes? Maybe we could call these nursing homelets.

These nursing homelets are unsupervised, unregulated. Families and friends are often dealing with complex challenges. Completing simple activities of daily living (toileting, bathing, dressing, eating) can become ordeals. Behavior problems like uncontrolled anger and anxiety, rummaging, and wandering can be major challenges even to someone who is trained in this work.

What about the person who isn’t trained? Who might not be there by choice? Is it any wonder that tempers flare? That it becomes easier to forgo the bath or the meal or the medication?

What can we do? One idea is that health care organizations providing medical care to someone with a neuro-degenerative disease also provide oversight of these mini-nursing homes and ongoing training and support for those caregivers. There could be an initial home visit at the time of diagnosis with additional elective visits either at the request of the caregiver and/or the client or mandatory visits if medical professionals perceive problems with care, i.e. weight loss, poor hygiene, bruising, etc.

Another is to set up an on-demand cable channel showing programs that deal with just these issues. Programs already exist at many health care institutions: how to lift a person; strategies for bathing a resisting adult; short courses on specific diseases and treatments---but you have to go there for access. Caregivers often have little free time. I can tell you from experience that when I get time away from a client I am not going to a library to read up on their situation. I want to get as far away from the reality as possible. But at 9 in the morning, faced with a dementia sufferer who doesn’t want to eat or take a bath---it would be so helpful to be able to see a program that shows strategies for accomplishing these activities.

Maria Shriver describes Alzheimer’s disease: A Baby Boomer Epidemic

2009-05-15T11:06:00.000-07:00

Maria Shriver, First Lady of California, wrote in a blog on www.huffingpost.com:

“I wrote a book called, What's Happening to Grandpa? At the time, I said I wrote it to help my children understand what was happening. In truth, I wrote it to explain Alzheimer's to myself. But when I wanted to turn it into a television special -- to shine some light on this subject -- no one was interested. I was told Alzheimer's wasn't big enough -- it was just "an old person's disease."

It is time for this attention. Because someone is diagnosed in this country with Alzheimer's every 70 seconds. And fully one third of Americans have a direct experience with this disease. The epidemic is growing.”

What a contrast with the 24-hour news cycle about the current flu which to date has affected a few thousand and caused (thankfully) relatively few deaths. It is also worth noting that an individual sufferer deals with flu for a matter of weeks. Decline and death from Alzheimer’s is often measured in years if not decades.
How do we make the invisible visible?

The HBO special on Alzheimer’s is a great start. Taking a cue from the current flu crisis I went to www.pandemicflu.gov. The website has a wonderful map. Visitors to the site can click on each state to see the number of flu cases reported including any deaths.

What about a site www.alzheimers.gov? Where we could click on each city to learn how many individuals with Alzheimer’s disease reside there? Of course it would be great to have this kind of visual presentation available for every disease.

As of now, most media attention about illnesses related to the aging process come from the pharmaceutical industry, i.e. advertising their drugs to treat Alzheimer’s, selling power chairs, or the like. Naturally their messages are geared toward the products they are selling. These commercials usually suggest that the viewer speak with his/her doctor about this or that condition.

Is the doctor’s office the only place for discussions? Are these subjects that only affect the individual?

No and No.

Alzheimer’s Disease---A Different Kind of Pandemic

2009-05-13T14:53:00.000-07:00

Yesterday I watched "The Alzheimer's Project," a four-part HBO documentary which looks at the faces behind the disease and the hope for a cure. Anyone can watch these programs for free online at the website for the National Alzheimer’s Association.

The NAA has also published a new report, 2009 Alzheimer’s Disease Facts and Figures. The report is a comprehensive statistical abstract of U.S. data on Alzheimer’s disease that includes: prevalence, mortality, the costs of Alzheimer care, caregiving and a special report on Mild Cognitive Impairment and early-stage Alzheimer's.

The numbers are mind-boggling:

• As many as 5.3 million people in the United States are living with Alzheimer’s.
• Alzheimer's and dementia triple healthcare costs for Americans age 65 and older.
• Every 70 seconds, someone develops Alzheimer’s.
• Alzheimer's is the seventh-leading cause of death.
• The direct and indirect costs of Alzheimer's and other dementias to Medicare, Medicaid and businesses amount to more than $148 billion each year.

The National Pandemic Influenza Preparedness and Response Plan mandates that state plans identify “public and private sector partners needed for effective planning and response.” Also the plan insists on “coordination with local authorities, such as county and city public health departments, to assist in developing local plans on which the state plan depends.” Every state had to submit their plans to the CDC by April 2007 for evaluation.

What if we had this kind of plan for a community response to Alzheimer’s disease? To cancer? To all of the illnesses and disabilities that already afflict individuals and communities---contagious or not?

How would the national health care debate be different if we were asking each elected official---how many people in your district have Alzheimer’s? Are disabled? Need special equipment? Are dealing with cancer or HIV? Are 80+? 90+? Are the public and private sector partners in your district ready to meet these needs? Today? Tomorrow?

I think there is a huge disconnect between national discussions about health care and the current and projected local requirements.

All illness is local. All aging is local. All politics is local.

The Five People You Meet in a Pandemic…

2009-05-11T12:49:00.000-07:00

I am a member of The Hastings Center---an independent, nonpartisan, and nonprofit bioethics research institute founded in 1969. To quote from their home page: The Center's mission is to address fundamental ethical issues in the areas of health, medicine, and the environment as they affect individuals, communities, and societies.

During the recent flu flurry I checked to see if the Center had published anything on the flu pandemic. I found this treasure written by Nancy Berlinger and Jacob Moses: The Five People You Meet in a Pandemic—And What They Need from You Today. (November 2007)

The five people (truck driver, gatekeeper, triage officer, janitor, and public health official) each represent a group of first responders. Each has needs and complex responsibilities to the community. The authors ask important questions about health care during a pandemic, for example: incentives, public education, collaboration, fairness, end-of-life care, training for triage, and rationing supplies. They urge public and private sector leaders to recognize the duty to plan, the duty to develop rules and tools for first responders, and the duty to be accountable to one another. The also urge that ethics be given a seat at the planning table. The report ends with these words:

“All of these decisions are hard decisions. To say these decisions are too hard to make today is to shirk our duty to plan, and to make the duties of first responders even more difficult.

And to say Americans won’t plan, or won’t ration, or won’t care about others---and will no longer trust the public sector to be on their side---is to allow cynicism to triumph over civic responsibility and the public interest. In considering these five people, pandemic planners must show the rest of us how we will care for one another, as communities and as a society, in perilous times.”

My question is---how do we apply this commitment to planning, to confronting hard choices to less sexy illnesses that afflict millions already---like alzheimer’s disease? The chronic, debilitating illnesses of old age?

Do only contagious diseases merit a community response? Qualify for public and private sector planning?

These questions are vital. I think we make an artificial dichotomy between contagious disease and non-contagious disease. We see the former as a community issue requiring planning/preparation and the latter as a private tragedy/responsibility confined within the home. Yet anyone who has had an illness or cared for someone through an illness process has met the truck driver and the gatekeeper; has confronted the ethical challenges of collaboration, fairness, end-of-life care, triage, and rationing supplies.

All illness is a community issue. All illness mandates planning by both the public and private sector.

Tell Me, Doctor

2009-02-23T09:59:00.000-08:00

I recently proposed to teach a course on caregiving for seniors to a noncredit educational program that would focus on financial concerns, getting and giving care, nurturing relationships and facing challenges of extended caregiving. The course was approved, but it had to be canceled because of insufficient enrollment. Now I can imagine that the economic downturn was a factor in the low enrollment, but I can't help but wonder if another factor had even more weight. Caregiving is perceived as something not worth studying.

Perhaps it’s because many caregiving tasks are viewed as common, normal activities, like preparing food, making appointments, getting groceries, doing laundry. What’s the big deal? These activities may be part of our normal daily routine, but when we are doing them for someone else on a protracted basis, we are assuming responsibility, whether a little or a lot, for the care of another adult human being. Whether preparing a meal or dispensing medication, caregiving becomes a big deal over time.

So many times I have heard caregivers say, "if only I'd known…I would have done things differently." Too often caregivers find themselves committed, but unprepared to meet their loved one’s escalating needs. The older we get the more likely it is that our friends and family members will need care, just as we will one day need care. Wouldn't it be wise to learn as much as possible about the subject? Wouldn't it be a good idea to acquire some skills so that we didn't have to learn only from our mistakes?

The low enrollment for my course offering was disappointing, but as often happens with setbacks, it got me thinking. The only way to get folks to even consider taking classes on caregiving is for doctors and hospitals to recommend them, like Lamaze classes for pregnant couples. This would require that medical professionals acknowledge that much care now happens in the home. They need to be open and honest about prognoses and the amount of care that may be required as the illness progresses.

I envision a day when a frustrated and frightened family member can ask her mother’s physician, “Tell me, Doctor, what should I do?”, and hear something like the following. Your mother has severe chronic obstructive pulmonary disorder. Here’s the prognosis…. She will need…(equipment, services, resources). Wherever she is living will gradually become a mini-nursing home. Her care needs will escalate over time and this situation could go on for several years. We have a class here that can help you to learn more about giving and receiving care in general and for COPD in particular. This way you can be prepared.

Photo by David Webber

2009-01-26T09:17:00.000-08:00

Care Managers, Working with the Aging Family, by Cathy Jo Cress

2009-01-26T09:01:00.000-08:00

Ms. Cress presents us with papers written by both her and her colleagues in care management that address the current realities faced by the aging family, for example:

Navigating Families Through the Hospital to Home
Helping Aging Families Communicate with a Physician
Working with Long-Distance Families
Family Meetings and the Aging Family
Working with Couples
Dying, Grief , and Burial in the Aging Family

The target audience is other care managers but I think this book can also be useful to families trying to get a handle on their situation. The clear, concise text provides much needed vocabulary and concepts that relate to elder care. It would be useful for the long-distance caregiver and anyone trying to organize care. Just as many of us see our homes becoming mini-nursing homes, many of us will need to be geriatric care managers for our loved ones. This book is a great resource---well worth the investment.

The Caregiving Map

2009-01-21T11:58:00.000-08:00

Our consultant to all things WEB, Sherry Knecht, suggested the What I’m Reading Now section. This makes sense since I read a lot. However as I started listing what I was reading, I realized how it might seem to be all over the map. In a way it is. Because caregiving in general, and geriatric care in particular, covers a big map:

Illness and/or geriatric issues and concerns
Caregiving issues and concerns
Management challenges and strategies

When people are faced with a new set of responsibilities it is very normal to reason---this is similar to something I’ve done before, therefore I can do this.

Here is my problem with this reasoning. The situations may only be similar on the surface. A deeper look will reveal major differences which, if unaddressed, will cause serious problems down the line.

For example, one comment I hear quite a lot from women: I raised x number of children---I can take care of my mother. Often there is a specific body language/posture---the jaw sets, the chin comes up and the arms are folded---the captain at the prow of the family ship. While I applaud the women’s commitment to family care needs and am glad they are on the job, I worry that their equating caring-for-children with caring-for-Mother will spell trouble.

In my experience, caring-for-Mother is to caring-for-children as
---cooking at home is to running a restaurant or
---starting a business is to buying a business that is 80+ years old and the founder is still the CEO!

More about this later.

My Stroke of Insight, A Brain Scientist’s Personal Journey, by Jill Bolte Taylor, PhD

2009-01-16T07:55:00.000-08:00

How often do we hear the words “So and So had a stroke.” We wonder---how bad? Paralysis? Speech impediments? But most of us don’t know exactly what a stroke is or how one occurs or even where? Dr. Bolton, a neuro-anatomist (brain scientist) has written this book to answer these questions. More importantly she gives us a first-person account of her own experience with stroke at 37(!).

I appreciated her chapters called “Simple Science” and “Hemispheric Asymetries” in which she gives us all a short course on the brain and the origin/impact of strokes. She also provides two practical checklists:

Ten Assessment Questions to determine capabilities such as the ability to perceive three dimensions, a sense of time, ability to think linearly, etc.
Forty Things I Needed the Most which range from the need for respect, clear speech, lots of sleep, a team of professionals and loved ones. She asks that we “trust that my brain can always continue to learn.”

The book is easy to read. I think it is a must for anyone who is dealing with someone who has suffered a stroke---professional or not. What stroke sufferers need most is patience and time---often in short supply.

10,000 Hours

2009-01-15T12:35:00.000-08:00

What do the Beatles, Bill Gates, Mozart and Peggy Flynn have in common?

I just finished reading Malcolm Gladwell’s Outliers, The Story of Success.

The dictionary definition of outlier is “something that is situated away from or classed differently from a main or related body.” (pg. 3) The book jacket describes outliers as “those people whose achievements fall outside normal expectations.”

Caregivers are outliers. We fit both the definition and description. The main or related body is the medical system that sets normal expectations for care delivery. Caregivers’ achievements definitely fall outside those normal expectations.

No wonder we feel invisible much of the time!

I have often felt like an outsider (more tolerated than welcome) in doctors’ offices and during home hospice visits. Caregivers are often made to feel like an outsider in many subtle and not so subtle ways---hard on the self-esteem and especially the morale.

From now on I intend to see myself as an outlier.

What has all this to do with the Beatles et al? The author makes that point that hard work is one of the major factors in success---practice, practice, practice---whether it is Bill Gates at the computer, the Beatles performing in Hamburg for hours each day, or Mozart composing for years---10,000 hours devoted to perfecting one’s skill.

It dawned on me that my caregiving work, especially in the HIV epidemic in San Francisco (1990-2004), gave me the opportunity to put in those 10,000 hours. Practice. Practice. Practice.

According to Mr. Gladwell “success follows a predictable course. It is not the brightest who succeed…Nor is success simply the sum of the decisions and efforts we make on our own behalf. It is, rather, a gift. Outliers are those who have been given opportunities---and who have had the strength and presence of mind to seize them.” (pg. 267)

I am so grateful to everyone who gave me the opportunity to care for them!

Some Warning Signs of Telemarketer Fraud”

2009-01-05T12:28:00.000-08:00

While news reports about the Madoff scandal could be heard in the background, I was going though some old files and found this gem from a course on financial elder abuse. It is important to remember that it is not only elders who are vulnerable. Hard times can make us all wishful thinkers. Unfortunately the current economic climate makes individuals both more likely to engage in fraud and to be susceptible to fraud.

1.You’ve “won a prize” or “a prize has been reserved for you.”

2.You’ve been “selected to receive” a special offer.

3.You must “act immediately” or lose your chance for a special offer.

4.You must spend money to “reserve your free gift” or “pay for shipping for your gift.”

5.You’re promised “fantastic financial returns” or “risk-free investing.”

6.You’re told that a “legal loophole allows people in the know” to profit from a “one-time-only situation.”

7.You’re asked for your credit card number and expiration date “to make sure you are a credit card holder.”

8.You’re asked for your Social Security number or personal financial information, such as your bank account number.

9.You’re asked to donate to an agency that sounds like a well-known charity, such as “American Cancer Center” (instead of the American Cancer Society).

10.You’re asked to give to an organization you don’t know, but that sounds like it’s linked to a public agency, like the “Police Support Center.”

Remember: IF IT SOUNDS TOO GOOD BE TRUE, IT PROBABLY IS.

New Aging

2008-12-22T09:03:00.000-08:00

In her book Aging, the Health-Care Challenge, Carole Bernstein Lewis notes that “old age is a new concept and a relatively new phenomenon.” She quotes Leonard Hayflick as saying of aging that it is “…a process for which evolution never prepared us. One might conclude,” he adds, “that aging is an artifact of civilization.”

Our prehistoric ancestors were lucky to live to 30. Only in the past few centuries has the allotted time for a reasonable lifespan been extended to the familiar three-score and ten. Living beyond 70 into one’s eighties or nineties is new, thanks in large part to public health improvements resulting from increased food production, sewage treatment, water purification, vaccination, and antibiotics.

But along with these improvements in age extension, a host of new problems has arisen. We need to remember that a tribe taking care of three elderly people is different from three young people taking care of an elderly tribe. This extends beyond the financial burden placed on the children and grandchildren of aging baby boomers, ranging from home-care expenses to medical emergencies and future Medicare and Social Security obligations. It also extends into emotional and ethical territory, where questions about eldercare inevitably lead.

We need new ideas to begin to deal with this new phenomenon. We need to ask new questions. Seek new answers. Clarify new values. Experts may propose and debate the issues, but we all are living in this new reality and we all need to join the discussion. We need to confront the hard realities of resource production, availability and allocation. We need to come to a consensus about values. How much do we value the elderly?
How will we provide the resources—medical, financial, physical, emotional, psychological—to care for a large population of people living into their nineties?

I have found that sharing stories of actual experiences helps create programs that work. We need to confront the hard realities, clarify our values, and create solutions that work. Share your stories!

Past Perfect

2008-12-15T08:37:00.000-08:00

In the Huffington Post Complete Guide to Blogging (www.huffingtonpost.com), Arianna Huffington observes that “perfect” can often be the enemy of “done.” The pursuit of perfection can be an excuse for not getting things done. The time and energy expended in this elusive pursuit could be used to better effect.

In undertaking this blog, I’ve been introduced to new ways of sharing ideas over the internet. I’m learning how to shift from essay mode to blog mode—communicating ideas and questions now—not pursuing some elusive perfect expression or resolution. Just share the idea. Ask the question. Start a conversation.

What has this to do with caregiving? Well, often caregivers, like new mothers, try to do everything perfectly, despite the fact that they may have no training or experience in providing this type of care. Family members and friends may back away from providing assistance because they worry that they won’t perform the service perfectly. Sometimes this quest for perfection becomes a convenient excuse for procrastination or neglect.

Whether it’s making a meal, cramming a wheel chair into a trunk or keeping vigil in a sick room—if you wait for perfection to arrive, nothing will happen. Life is messy. You can make mistakes. It’s okay. Just do something.

The same holds true for needed conversations that don’t occur because nobody wants to have them—about advance directives, “Do Not Resuscitate” forms, disposition of assets, funeral arrangements, etc. There is no perfect time to talk about these matters or to complete the forms and get them on record. There is no perfect speech to deliver on any of these topics. You just have to start the conversation and live in the moment. Get past “perfect.”

Social Networking Sites

2008-11-24T13:21:00.000-08:00

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 (www.lotsahelpinghands.com), 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 www.caringbridge.org. 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.

A Guide to Planning

2008-11-21T10:39:00.000-08:00

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 (www.aarp.org/) 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?”

Get the Facts

2008-11-19T07:51:00.000-08:00

In her October 30, 2008 blog entry, More Caregiving Resources Move Online, Jane Gross, writing for the New York Times at newoldage.blogs.nytimes.com, 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 www.medicare.gov/caregivers. 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.

Elder Speak

2008-11-17T08:28:00.000-08:00

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

2008-11-13T08:11:00.000-08:00

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

2008-11-10T10:36:00.000-08:00

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

2008-11-07T07:45:00.000-08:00

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?

2008-11-04T07:50:00.000-08:00

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

2008-11-03T07:38:00.000-08:00

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

2008-10-14T14:34:00.000-07:00

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.