Geriatric Management Consulting #6

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

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

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?

Listening Ever More Deeply

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!

Little Hospital on the Prairie

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.

Fellow Sufferers

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

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

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

Conversation Stoppers

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

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

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.

Suicide as a Long-Term Care Plan #2

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.”

Mutualism as a Caregiving Model

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.