Friday, May 28, 2010
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.
Wednesday, May 26, 2010
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.
Monday, May 24, 2010
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.
Friday, May 21, 2010
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.
Wednesday, May 19, 2010
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.
Monday, May 17, 2010
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.
Friday, May 14, 2010
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
Wednesday, May 12, 2010
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
Monday, May 10, 2010
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
Friday, May 7, 2010
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?
Wednesday, May 5, 2010
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.
Monday, May 3, 2010
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. …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. Coral reefs are the result of mutualisms between coral organisms and various types of algae that live inside them. 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.
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.