Archive for the ‘eldercare’ category

Dementia from the Inside Out

March 21, 2011

Most depictions of dementia describe the impact of behavior and cognitive deficits from the outside – the observations of clinicians, family members, co-workers, and neighbors. It is rare to find a perspective from the inside out – the experience of the person with advanced dementia. A mystery novel is an unlikely place to look for such a portrayal, yet Walter Mosley’s recent novel, The Last Days of Ptolemy Grey creates that perspective convincingly.

A prolific writer, Mosley is best known for his Easy Rawlins mysteries, set in Los Angeles in the 1940s, and for his lively and authentic portrayal of African-American urban life. This book has Mosley’s characteristic earthy dialogue, colorful people, and plot twists. But the main character-cum-detective, Ptolemy Usher Grey, is no Easy Rawlins. He is 91 years old, suffering from dementia, and living in squalor. That is, until an unlikely caregiver, 17-year-old Robyn Small, literally gets him to clean up his act.

Mosley wrote this book after his 88-year-old mother Ella died of dementia. He was a long-distance caregiver for seven years. In an interview in the Wall Street Journal he said that one of the things he attempted to do in his book “is to show the narrative that exists inside [Ptolemy Grey’s] mind, to see those moments when someone is trying to tell you something and they still can’t do it . . .that struggle for articulation. That’s a very human struggle.”

As Mosley sees it, Ptolemy has a “place behind the door that kept many of his memories alive but mostly unavailable.” Shadows of the past keep intruding on the present, where he lives amid nonstop classical music and news on the radio, a dwindling supply of canned sardines, and fear of intruders.

The complicated plot, which involves past injustices, buried treasure, failed relationships, and violence, turns on the drive-by shooting of Ptolemy’s grandnephew Reggie, the only one of his large but uninvolved family who had helped him do some shopping and banking. At Reggie’s funeral Robyn, who has no family but has been taken in by Ptolemy’s grandniece, takes special care of Ptolemy. The family then sends her to assume Reggie’s role.

Robyn does much more than Reggie ever did, and her kind but firm presence gives Ptolemy the human connection and stability – the love – that is missing in his life. It also gives him a mission: find out who killed Reggie and take care of unfinished business before he dies.

In a Faustian twist, a physician offers Ptolemy a chance to recover his lost memory and lucidity. Dr. Ruben (henceforth called the Devil) is testing a new drug that he thinks will give Ptolemy a few months of clear-headedness but will kill him before he reaches 92. In a macabre version of informed consent, Dr. Ruben openly says the drug is dangerous and illegal in the United States but is being made in “a town in Southeast Asia where there are fewer laws governing research.” Over Robyn’s protests, Ptolemy chooses a few months of “getting his mind back” and signs a form giving his body to the doctor after he dies. No spoilers here: read the book to find out what happens.

The Last Days of Ptolemy Grey is a work that blends realism and fantasy. It is also a tribute to the powerful impact of a caregiver on the final chapter of a person’s life.


Taming Social Security?

March 17, 2011

While enjoying some spring training baseball this week, I’ve had interesting conversations with my fellow fans in the stands. A number of them are approaching retirement, and when they learn that I teach about health care and aging, the first thing they want to know is, “Will I have Social Security?”  This question weighs heavily on those approaching retirement, especially those whose IRAs plummeted in value at the hands of wall street brokers.  The women I speak to are especially concerned because, like it or not, most of them will outlive their husbands, not to mention their husbands’ pensions.

They are also following the budget fight in Washington, and ask me if it’s true that social security and Medicare benefits need to be cut. To be sure, the Social Security trust fund faces tough choices: we are approaching the social security tipping point – as the ratio of contributors to beneficiaries steadily heads downward.   Unless income and expenditures change, the Social Security fund is projected to be insolvent by 2037.  While not an immediate emergency, this is a situation that needs to be addressed thoughtfully in order to keep Social Security viable for generations to come.

But House Speaker John Boehner would have us believe that it is an emergency.  Despite the fact that over 75% of Americans in a recent poll oppose cuts to Social Security, he argues that they simply don’t understand the facts.  In a recent interview with the Wall Street Journal, he argues,  “People in Washington assume that Americans understand how big the problem is, but most Americans don’t have a clue… Once they understand how big the problem is, I think people will be more receptive to what the possible solutions may be.”

Rep. Boehner wants Americans to believe that we are trapped in a burning building and that cuts to our entitlement programs are the only buckets in our brigade.   If Americans only knew the facts, we would agree with him about raising the retirement age to 70, introducing means-testing for benefit recipients, and cutting cost-of-living increases.   Sadly, Rep.  Boehner and his colleagues seem to prefer frightening citizens by framing the problem as either accepting cuts or losing the program altogether. 

Rep. Boehner’s proposal presents a classic example of Hobson’s choice – a choice that is no choice at all.  There are other options – none of which seem to be on the bargaining table at the moment.  Recently Robert Reich did the math and found that raising the cap on the 7.5% social security income tax from $106,800 to $180,000 would solve the insolvency problem for the foreseeable future.  My seatmates at the baseball game didn’t even know that Social Security taxes HAD a cap.  When I explained it to them, they,  like two-thirds of Americans surveyed in a 2010 poll, argued that there should be NO cap, not just a raised cap.  Similarly, when people learn that terminating the Bush tax cuts to the top 2% of earners would also make Social Security solvent, most argue in favor of raising taxes.  However, most polls keep Americans “clueless” by framing any tax increase as affecting all taxpayers equally and not directly asking Americans what they think of taxing the rich.

Social Security is the most popular entitlement in America, even though it is largely based on regressive taxation.  As a percentage of total income, the bottom 50% of earners pay more into social security than do the top 50%.  The bottom 50% of earners also rely more heavily on Social Security, lacking significant retirement savings, pensions, or other investments. 

My conversations at the ballpark were enlightening, for me and for my fellow fans.  I learned that many people facing retirement don’t know how social security is funded and they are only aware of solutions to the fund’s insolvency that Speaker Boehner and his Republican friends offer.  When they hear about other solutions, like “clueless Americans” everywhere, they argue for raising or abolishing the cap, or for abolishing tax cuts for the rich?  Clueless?  No.  Misinformed.  Deliberately.

New Notions of Empathy?

March 13, 2011

Have you ever been commanded to “Put yourself in her shoes!”  Now you literally can.  Meet Agnes, which stands for The Age Gain Now Empathy System. A gadget of the Massachusetts Institute of Technology’s Agelab, Agnes is a bodysuit that has been developed by researchers for a wearer to experience the physical limitations of old(er) age.  Cords, bands, Styrofoam and tinted plastic transform what by all accounts looks like a mechanic’s jumpsuit, into the trappings of a “74 year old body” with limited mobility.  Reaching for a box of cereal in a grocery store becomes a feat when stretching an arm is restricted by a retractable cord.

Agnes is one of a number of technologies of MIT and other research centers promoting the study of the needs of aging baby boomers in the United States, 76 million of whom turned 65 in January.  Improving the “quality of life” of this demographic is a project of interest to a number of entities. Industry would like to design appealing products for this burgeoning market, and government would like to contain the soaring costs of healthcare for this typically high-user demographic.  Agelab and its peer centers are therefore hubs of development that profess a commitment to improving this next chapter of life, while also enhancing the market-value of that life.

I initially discovered Agelab in a February article in The New York Times.  It led me to the Agelab website where I perused the various techniques being developed to measure and respond to the capacities of older people.  It further linked me to the increasing coverage of Agelab in popular media, as the dapper, bowtie clad director, Joe Coughlin and his merry band of youthful suit-donners describe their gadgets on tv programs and in feature articles.

The issues are certainly timely, not only because of the pressing weight of an emergent demographic, but also in the gesture to technology’s potential for lifestyle innovation.

Let’s go back to Agnes. Putting aside the “in the year 2000” sense brought to mind by a souped-up dickie coverall and the REALLY interesting questions about enmeshed technological timescapes (such as, why choose iconic aesthetic workforce attire to represent the technological frontier?), what I want to focus on is the “e” in Agnes, the use of the term “empathy” to describe the experience of “gaining age” for a bodysuit wearer.

Empathy is a term to describe the relational capacity of one individual to access the state of being of another.   The transfer generally relies upon something forged between persons, or between person and object that stands in for a person (for example, a relation of empathy can occur when a person reading a newspaper of Japan’s earthquake feels pain for those pictured in the wreckage). It draws up, and upon emotions of the “empathized” and the “empathizer,” as well as in the matter between them.

In this light, Agnes is a departure of typical empathic rendering.  The suit serves as a substitute for a person afflicted with the syndromes of old age. Technology, in fact, fills in and reconstructs the figure who is rendered absent in these exercises.  Leaving her aside and choosing instead to simulate her experience of old age is curious because aging bodies are described as very much not absent in daily life, but in fact present in increasing numbers. What is absent, then, are older people in the research design, and in doing so, so too are their varied perspectives that accompany living when Agnes cannot be removed.   The researcher in the suit may walk slowly, but the real older person may labor to walk while also complaining of relentless aching joints, lost youth, or absent-minded folly.  How such responses bear upon movements are not necessarily obvious, and it seems to me that they would be critical to consider. Tapping into experiences of this kind would also evoke principles of empathy that are, ironically, unavailable in the Agnes model.

Now let’s explore how the Agnes technique takes empathy cultivation not as the relationship of oneself to another, but as parts of oneself in relation to other parts of oneself.  Like the suit itself, a researcher is guided to turn a part of herself “off,” and another now-enhanced part “on.”  This strategy is uniquely hitched to an idea of individuals as needing to create new experiences to access worlds that are assumed to be unfamiliar.  Is this the case?  Drawing from my own life, at the age of 27, I developed a disk bulge because I did not exercise, and sat, hunched, for hours at my computer writing graduate school essays.  When I was diagnosed, I thought, “God, I feel old.”  I had a picture of old age, and with it a foreboding anxiety that it was coming too soon.  Now, if I were to wear Agnes, I bet that I would play the role of the older person disconnected from my own archive of experiences that might be as or more powerful than the technological simulation.  In various articles, Dr. Coughlin says that baby boomers shy away from products that obviously marketed to them as “old.”   An accompanying statement might be, “I’m just like everyone else.”  Yet, Agnes may defy this statement by perpetuating difference, rather than building off of more important mercurial possibilities between people, and between points in a person’s own life that allow for the forging of connections.  These transfers are the potent stuff  embedded in dare I say more conventional technologies of empathy.

The final strangeness of this suit is that it dotes on the physical.  I  wonder, then, if the cultural constructs that have produced it back a new vision of the constitution of self.   Is a quality life achieved if the body’s needs are met on an individual basis? If we answer yes, this sums up popular thinking, it seems that we have found ourselves in a world in which ideal states of being boltser singular over social existences.  And yet: as our bodies in this world become depleted (and this is inevitable until that technology comes along), will we really be saddened if a shelf is out of range, or will we think about whether someone is with us to reach for our favorite cookies in our stead?

Effects of Wisconsin Budget ‘repair’ Bill on Direct Care Workers

March 2, 2011

Wisconsin’s Budget Repair Bill Threatens Health Care for Vulnerable Residents

This is a guest post by Mike Bachhuber, Executive Director of the Independent Living Council of Wisconsin.

Senate Bill 11, Wisconsin’s “Budget Repair Bill” gives government officials power to change health care available to the state’s low-income residents without public opportunity for input. The legislature has held this power since the beginning of the program.

State statutes provide most of the details for BadgerCare, the state’s federally-supported “medical assistance” program. Until now, these statutes have defined details such as: 

Which people needing care are eligible;  Types of care available to them;
 How care providers are paid and what people needing care must pay.
 When these details are provided by statute, both the Assembly and Senate must pass a bill with the same language to     change the law. The change becomes effective with the Governor’s approval or over a veto with a two-thirds vote in both   houses of the legislature. This process gives the public an opportunity to give their input and tell policy-makers how the changes will affect them.

Senate Bill 11, however, will give that power to the Secretary of Health Services if passed. The bill allows him to change these details by publishing a rule. Unlike with legislation, these changes could become law before the public is even aware. Giving so much power to make these kinds of law changes has not been seen up to now.

The law provides for only two limits on this power. First, the Secretary must give advance notice to the co-chairs of the Legislative Joint Finance Committee. Both co-chairs are currently from the same party so, unless they let others know, most members of the Legislature will not know about the changes until they are published. The Committee chairs can, however, delay or stop the proposed changes by action of the Committee.

The second limit on the “edict” power is that most changes would have to be approved by the U.S. Department of Health and Human Services. If not approved by the federal government, other cuts to medical assistance will go into effect.

Cuts are most likely to affect individuals and families making more than 133% of the Federal Poverty Level, as little as $1,207 monthly. People with disabilities and others have fought hard for protections that give them care to keep them alive or allow them to live in the community and work real jobs. They are afraid that changes might be made to take away these protections before they even know someone was thinking of particular changes. The two limits on power may not be enough to protect them. Read an excerpt of a memo from Wisconsin’s Legislative Reference Bureau. 

Reposted by permission from the Direct Care Alliance.

Healthcare Typecasting – “Nobody Knows My Name!”

February 18, 2011

Shakespeare had it wrong. If a rose were called a stinkweed, it wouldn’t smell as sweet. And if Romeo’s name had been Rosencrantz or Guildenstern, Juliet might have had a long and happy life. Names signify.

That was the message I took away from Paula Span’s recent New York Times blog “What’s In a (First) Name?” about the way health care professionals address patients. Most comments agreed that doctors, nurses, and other health care professionals should acknowledge the patient’s unique identity by using his or her preferred name. The patient is a person—the first principle of compassionate medicine.

Names also matter to the relative, partner, or friend who has major responsibilities for providing or managing that person’s health care—the family caregiver. But before you have a name, you have to exist. I’ve been professionally and personally involved in caregiving for the past 20 years. In that time many family members have told me, “I’m invisible in the hospital/nursing home/rehab facility.”

“Invisible,” that is, until it’s time for discharge, payment, or major decisions. Then the family member morphs into someone with a name, except it’s not a first name or a full name. And it’s generally not “Sweetie” or “Honey.” It’s “The Wife,” “The Daughter,” “The Son,” “The Friend.” Typecasting is a convenient way for professionals to distance themselves from the individual who is not their patient, but who makes demands on their time and attention. The relationship between family members and the patient’s health care team is ambiguous, sometimes collaborative but often full of conflict.

As The Wife for my late husband who suffered a traumatic brain injury and was left quadriplegic, I was expected to be at the service of professionals, do their bidding, fill in the service gaps, and be the passive recipient of their “teaching.” My other responsibilities and preferences counted for naught. An elderly mother, a full-time job, children and grandchildren—nothing mattered.

The category of The Wife came with certain expectations, different from those of The Husband, who was given far more leeway. Husbands were praised for just showing up, but wives were expected to do the dirty work. I suspect that the same differential exists with The Daughter and The Son. It was not that I did not want to be known as a wife; it was in fact that I wanted to be able to maintain that identity in a way that preserved and honored our long and loving marriage. The only time I remember my husband crying in the rehab facility was when a nurse berated me loudly in his presence for failing to master some medical technique on the first try. He wanted to protect me but couldn’t. By turning me into a distorted version of a wife, the nurse had taken away his identity as a husband.

Who was I? I immediately rejected the research term “informal caregiver,” which bore no relation to my demanding responsibilities. Other terms like “care partner,” “caretaker,” “support person,” or “volunteer” may work for some, but not for me. The British term is “carer,” but that is unlikely to take hold in this country. I finally acknowledged that I was a “family caregiver,” with “family” referring to who I was and “caregiving” describing what I did.

Many people do not recognize themselves as family caregivers and do not like the term. They may feel that this designation deprives them of their primary relationship to the patient or that they may become overwhelmed by responsibility, not an unrealistic fear. At the United Hospital Fund we created a Next Step in Care guide to becoming a family caregiver, which stresses the importance of self-identification in health care settings to assert one’s rights to participate in care planning and obtain appropriate and timely training. Another guide helps family caregivers rebut misinformed claims that the privacy rules under HIPAA prevent sharing information with them. Community services for family caregivers are available for those who are ready to seek them out and are willing to take on the designation for this purpose.

Being proactive is the best way to assert one’s identity and importance in the patient’s well-being and care. Just as health care professionals are supposed to introduce themselves to every patient, family caregivers should introduce themselves to everyone who plays a role in patient care. “My name is _________. I am _________’s ____________ and also his/her family caregiver. Let’s talk.” Having a name and an identity will not guarantee an effective working relationship with professionals, but it’s a good start.

All In the Family: Rise in Multigenerational Living

August 25, 2009

Last week’s issue of Newsweek magazine reported that multigenmultgenerational3erational living in the U.S. is on the rise. According to the U.S. Census, households with three or more generations increased by 38 percent between 1990 and 2000, to about 4 million multigenerational households in 2000. Since then, the trend appears to have continued with the number of parents living in the homes of their adult children having increased by 67 percent between 2000-2007, as well as more adult children moving back home with their parents.  Part of this trend may reflect an increase in immigration to the U.S., with many immigrants preferring extended-family living.  Also, these changes likely stem, at least in part, from tough economic times. As sociologist Frances Goldscheider points out in the article   “It is so much less expensive to have one kitchen, one living room, one dwelling to heat.”  Furthermore, changes in young adulthood with the extended time it takes for young people to complete their education and attain financial independence may partly explain young people’s “failure to launch” and prolonged coresidence with mom and dad.  On the other hand, increased longevity may mean that more elderly parents are moving in with their adult children as they are healthy enough to live without intensive medical care, but may need or prefer family help or care.  But in addition to these economic and demographic changes, there is likely a cultural shift around intergenerational relations toward closer, friendlier connections between generations that may make multigenerational living more appealing. As family scholar Stephanie Coontz remarked  “Over the past 30 years, more democratic methods of child-rearing and delay of marriage have resulted in deeper friendships between parents and children.”

Certainly multigenerational living  may present some challenges to family members, particularly those who do the bulk of the household work and caregiving.  But this also may offer new possibilities for lifelong family relationships, shared care and pooled resources that may benefit all family members, particularly those in the younger and older generations.

Seeing Susan Boyle as a Caregiver

April 21, 2009
Susan Boyle, before and after?

Susan Boyle, before and after?

Susan Boyle, the famous “unemployed Scottish Spinster” of “Britain’s Got Talent” fame has another story to tell.   She is also youngest daughter of eight children born to Irish immigrant parents who lived at home to care for her aging mother during the ten years following her father’s death.  Diagnosed with learning deficiencies due to a difficult birth, she may have had a hard time finding employment outside of her parents’ home, but thanks to the UK Carer’s Allowance, she probably had paid employment as her mother’s primary caregiver inside their home.  While I cannot speak to Ms. Boyle’s specific situation, it is the case that in Great Britain, as well as in Australia and several other EU countries, family members who care for a frail elderly or disabled relative on a live-in or live-out basis are eligible for income replacement from the state. 

These programs have been controversial in many ways:  conservatives worry that cash for care will erode the notion of self-sustaining families, that it might taint family relations and blur the line between “care” and “work”.   Some conservatives fear that this kind of caregiving remuneration will lead to an increase in elder abuse.  Liberals, and in particular feminists, worry that payment for family caregiving will create a pink collar ghetto of female caregivers living on subsistence wages while caring for their elderly parents.  Others worry that paying family members for care will deprive care receivers of the autonomy they might have in supervising an employee rather than a family member. 

These questions are worth considering.  However, we know that women provide the vast majority of care for the frail elderly, and in the United States, at least, the vast majority do so without any compensation.  They receive no more than the standard unpaid FMLA leave from employment, and many must choose between employment and caregiving or balancing childcare with eldercare, both of which are unpaid and socially undervalued.

This last point deserves special note: unpaid care work is accorded little or no social value.  In a recent article entitled, “Why Susan Boyle Makes Us Cry,” feminist activist Letty Cottin Pogrebin writes that Boyle’s sudden rise to stardum creates a collective lump in the throat because it makes us think of “the years of wasted talent, the career that wasn’t, the time lost…”  As if Ms. Boyle and others like her were locked in a closet. 

Don’t get me wrong.  I think it’s great that Ms. Boyle’s beautiful voice is being heard all over the world.  I listen to her sing before I start my writing workday.  But I think it’s a shame that so many of us think that the time she spent before she met Simon Cowell was wasted.