Tag Archives: aging

Lead pipes, antiquated laws threaten Wisconsin’s drinking water quality

Experts, and even some regulators, say existing laws are failing to protect Wisconsin and the nation from harmful exposure to lead in drinking water that leaches from aging plumbing — a danger illustrated by the public health crisis in Flint, Michigan. 

At least 176,000 so-called lead service lines connect older Wisconsin homes to the iron water mains that deliver municipal water, according to an estimate by the U.S. Environmental Protection Agency. Milwaukee alone, where 60 percent of the state’s known lead-poisoned children live, has 70,000 lead service lines.

Regulators concede that the Lead and Copper Rule, the 25-year-old federal law that seeks to minimize the danger from lead pipes and indoor plumbing fixtures, is failing on several fronts:

• Methods for sampling often fail to detect the highest level of lead in a consumer’s home. 

• Too few homes are sampled, and those that are may not be in the neighborhoods most at risk.

• The requirement that utilities replace some lead lines when they exceed federal thresholds may actually cause dangerous increases of lead in drinking water.

Lead is primarily leached into Wisconsin’s drinking water by the corrosion of lead pipes and indoor plumbing components.

Health effects of lead include irreversible brain damage in children under age 6 and an increased risk of miscarriage in pregnant women. 

Decades ago, when it became clear that lead was one of the worst toxins for the developing brain, U.S. regulatory agencies began to eliminate the heavy metal from gasoline, paint and new plumbing. But the efforts to address the nation’s existing water infrastructure were limited.

Marc Edwards, an engineering professor at Virginia Tech University and one of the nation’s foremost experts on lead in drinking water, helped Flint address its massive problem with lead-contaminated drinking water that has poisoned a number of the city’s children. 

Edwards said millions of U.S. homes have some lead components in their water delivery system, although “no one knows” the exact number. He agreed with some who have called the widespread risk posed by lead pipes and the astronomical cost to replace them one of the biggest environmental disasters in U.S. history. 

The American Water Works Association estimated in 1990 that the U.S. water infrastructure had about 3.3 million lead service lines and 6.4 million connections made of lead, many of them installed well over 100 years ago. Wisconsin is one of nine states, all in the Midwest and Northeast, where they are particularly common. 

In addition to Milwaukee, several other Wisconsin communities have a high percentage of lead service lines, including Wausau, Wauwatosa and Racine, according to the EPA. 

A 2008 study found that these service lines account for 50 to 75 percent of lead contamination in public tap water, with most of the remainder due to indoor lead pipes and plumbing components, such as faucets and connections. 

The risk of these aging pipes is so high that Madison’s public water utility made the controversial decision to replace all of its lead service lines beginning in 2001 — a move now seen as a model for other cities.

The problem posed by lead service lines is likely underestimated in Wisconsin, where census figures show about 27 percent of homes were built before 1950 and 63 percent before 1980.

Miguel Del Toral, a regulations manager at the EPA’s Chicago office, said that after five years of effort, he could only track down written documentation of lead pipes in 113 Wisconsin communities in 47 counties. The number of lead pipes outside of these communities is anybody’s guess. 

In addition, tap water from only a fraction of the 176,000 buildings in Wisconsin on known lead service lines is tested as part of the federal Lead and Copper Rule. The law requires utilities to collect water samples from households known or suspected to be served by these pipes, but a 1984 EPA survey showed one-third of utilities did not know how many lead pipes they had.

Milwaukee Water Works is currently on a reduced monitoring schedule because of a history of compliance with the federal law; it only has to test for lead in 50 homes every three years. Even before this schedule became effective, the city only had to test 100 homes per year for lead.

Finally, some testing under the federal rule may not accurately reflect consumers’ actual lead exposure, according to a study by Del Toral and another by Edwards. 

This story was produced as part of The Confluence, a collaborative project involving the Wisconsin Center for Investigative Journalism and University of Wisconsin-Madison School of Journalism and Mass Communication reporting classes.

Letting hair gray naturally is a growing trend

Joanne Hudson’s friends didn’t hide their surprise when she mentioned earlier this year that she was considering letting her gray hair show. Most were enthusiastic and supportive. But they treated the idea of going naturally gray as a bold, gutsy move.

Coloring her hair was considered the default decision, says Hudson, 52. Going gray was not.

At 58, Lydia Bishop opts to color her gray hair, though occasionally a few silver strands show through. When they do, her 88-year-old mother speaks up in code, pointing out with gentle concern that “Mrs. White is visiting.”

One of these days, Bishop might just let “Mrs. White” stick around.

“I’m ready to let all my grays come out,” she says. “But my boyfriend isn’t ready to face that we’re old enough to have gray hair.”

After a half-century, Clairol’s famous “Does she or doesn’t she?” query has been answered with a resounding, “Of course she does. And her husband and kids probably do, too.” Suburban moms in their 40s are adding dark blue streaks to tresses that are already colored brown or black, while 79-year-old Robert Redford remains perennially sandy blond.

But gray hair? That’s for college students and young pop stars like Lady Gaga who step out with shimmering, dyed-silver locks, rather than for baby boomers reaching the milestone ages long associated with gray hair.

Chatter crops up online when 61-year-old John Travolta appears with a solid block of mahogany hair on top of his head and incongruous salt-and-pepper sideburns peeking out underneath. But it’s the unflattering look that causes a stir, says celebrity fashion stylist Felix Mercado, not the fact that Travolta, or anyone else his age, colors their hair.

Whether we’re conforming to popular beauty standards or defying them, we “don’t ask for permission anymore,” says Hilary Aquino, assistant professor of history at Albright College in Reading, Pennsylvania.

The strict definitions of beauty and femininity that prevailed generations ago, she says, have become a bit more flexible. That’s great news for baby boomers who don’t want gray hair and also don’t want the trouble of lying about it.

But the silver “#grannyhair” that teens are embracing doesn’t always get the same positive response when it’s framing a middle-aged face.

For starters, natural gray hair has a different texture than hair that still holds its original color. It can be unruly and dry, announcing that something has changed.

“Gray hair is a sign of aging and today, in that association, it still creates as much anxiety as it did in the past,” says Wanda Balzano, associate professor of women’s and gender studies at Wake Forest University in North Carolina. She sees a false liberation, rather than progress, in the widespread acceptance of banishing gray hair.

“What is different today is the fact that men are becoming increasingly conscious of their hair image,” Balzano says, “and have thus joined the ranks of women in being conscious of how they look.”

Eden-Renee Hayes, professor of psychology at Bard College at Simon’s Rock, agrees: While the choice to dye your hair at any age and to use nontraditional colors “may seem bold and liberating,” she says, it may actually be a new way of conforming.

Have we gotten so comfortable with people dying their hair that we’re unhappy when they don’t? Does gray hair mean automatic grandparent status?

Ashley Broadway-Mack, a 42-year-old mother of two young kids who lives in Alexandria, Virginia, doesn’t have much gray hair, and usually colors it. But when she lets a few gray strands appear, the response has shocked her. Strangers have assumed she was her children’s grandmother, rather than their mother.

Broadway-Mack’s wife, Heather, tells her the gray hair is flattering, but those comments from strangers have left her wondering: If she stops coloring her hair, will she be pigeonholed as “old” in a couple of years, when her children are bigger and she’s ready to seek a full-time job outside her home?

Hudson, for her part, has found it professionally useful to let her gray hair show through. In her work as director of the Ridgefield Independent Film Festival, in Ridgefield, Connecticut, she says she gets a different response in meetings now that her gray hair has emerged. It’s as if her experience and knowledge are visible along with those strands of gray.

She doesn’t worry that going gray signals that she’s over 50. In the entertainment industry, where she has made her living as a playwright and event producer, “they’re always looking for the next twenty-something anyway.”

“As soon as you’re a few years beyond that,” she says, “you’re old already.”

Social Security must be preserved

Social Security, one of the most successful government programs in U.S. history, marked its 80th anniversary this year. As it enters its ninth decade of providing basic income security for older Americans, GOP presidential candidates are working to undermine faith in it.

They decry Social Security as an “entitlement” and warn of its insolvency. Using their favorite tactic of divide and conquer, they claim the money won’t be there for young people. They say Americans can get better returns from investing the same small sliver of their paychecks in private markets. So why should the government take the money?

Please don’t drink their Kool-Aid. 

Social Security is not an entitlement. Each of us pays for it through a deduction of 6.2 percent from every paycheck. Our employers match that 6.2 percent and send the total amount to the federal government monthly.

When we draw from Social Security in retirement, we receive money we have invested in the system our entire lives. The earliest age to claim Social Security is 62. The monthly check is larger if a person waits until full retirement age, which is 66 or 67, depending on your year of birth.

Social Security is not insolvent, and young people need only look at how the program benefits their grandparents to see what a valuable investment it is. All of my older relatives and friends rely on Social Security as an important part of their retirement income. They are not moochers. They have earned their benefits.

Social Security was championed by President Franklin D. Roosevelt and adopted by bipartisan Congressional majorities in 1935. Private charity had never fully met the needs of the poor and elderly poverty, a scourge that predated the Great Depression, grew more severe during the economic crisis.

The Social Security Act included old age insurance (the focus of this column), unemployment compensation, welfare benefits for the poor and survivor benefits for widows and orphans. Welfare — Aid to Families with Dependent Children — was abolished under Bill Clinton in 1996.

Many studies confirm that in the second half of the 20th century, Social Security helped significantly to reduce poverty among the elderly. Without Social Security today, 48 percent of Wisconsin seniors would descend below the poverty line.

Concerns about the solvency of Social Security have been addressed over the years in several ways: raising the retirement age; increasing the percentage of contributions; and raising the amount of income subject to Social Security taxes.

Currently, individuals do not have to pay Social Security taxes on income above $118,500. Lifting the payroll cap to $250,000, which Bernie Sanders proposes, would secure Social Security for at least the next three generations.

Of course, the GOP opposes any new taxes — even for a successful program that keeps millions from destitution. The financial windfall for investment firms is the real motive behind those who want to privatize Social Security. 

Why should Americans hand over our one small reserve of secure savings to the banks and Wall Street, whose practices have become more secretive and whose history is full of reckless speculation? Have we forgotten the near crash that took place only seven years ago? They not only stole our money, we had to bail them out!

Social Security guarantees all of us a minimum retirement income when we grow old. It must be preserved.

St. John’s on the Lake makes room for residents’ furry friends

Anyone who’s ever had an animal companion knows just how much joy they bring. Our companion animals play an important and irreplaceable role in our lifestyles and emotions. They help to guide us through life’s many struggles and have been proven beneficial to our health and happiness. 

One challenge we all face is aging, particularly when the time comes to move into a retirement community. It’s a hard choice to leave one home for another, and many seniors must face the decision of whether to take a beloved furry friend with them. 

During such transitional times, having the love and support of a cherished pet can make more of a difference than ever. Just ask the resident pet owners who live at St. John’s on the Lake, 1840 N. Prospect Ave., Milwaukee. There, pets are welcomed with open hearts.

“Your pet sort of becomes everyone’s pet,” says resident pet owner Jack Ford, his curly coated tan pup Casper sitting beside him.

Residents walk freely through the halls with their dogs, take them outside to the outdoor doggie run, and socialize together at pet-themed events. 

“When I walk down the hall, usually people say, ‘Hi, Dexter,’” says Bill Lau, referring to his dog. “They say ‘hello’ to him before they even say ‘hello’ to me!” 

The cat owners also have their special place. One resident walks her sleek black cat Samantha in a lovely red harness during what would regularly be the dog hours.

For cat owner Mary McAndrews, whose cats all have been named after mystery authors, the decision to adopt Josephine was prompted by the hard choice the cat’s former “parent” had to face: Leave Josephine behind with a social worker when she entered senior living.

“Josephine was 8 years old,” explains McAndrews, “and the story that we heard was that she was brought in by a social worker. Her previous owner had two cats and was going into a senior facility that only allowed for her to keep one.” 

To celebrate the bonds between St. John’s residents and their pets, Lau conceived of a touching photography exhibit called the Pet Project. Resident photographers Dan Patrinos, Art Beaudry and Jim Ballard photographed 10 dogs, 14 cats and their owners in their homes at St. John’s. The display of black-and-white photographs features candid shots, portraits and group photographs of residents with their pets.

On a special side display titled Remembrance, photographs of pets who have passed are also included. This touching project is on display at St. John’s until mid-November and is free and open to the public.

The warmth that shines through each photograph evidences the power of pet companionship and the quality of life it adds to the residents and staff at St. John’s on the Lake. The photographs underscore the family atmosphere that St. John’s strives to create for everyone, including those for whom no family would be complete without an occasional “woof!” or “meow.”

New Harper Lee book already million seller

Critics dismissed it as a rough draft for “To Kill a Mockingbird” and readers despaired over an aging, racist Atticus Finch.

But Harper Lee’s “Go Set a Watchman” is still a million seller.

HarperCollins announced this week that “Go Set a Watchman” in its combined print, electronic and audio formats has sold 1.1 million copies in the U.S. and Canada, a figure which includes first-week sales and months of pre-orders. The publisher stunned the world in February when it revealed that a second novel was coming from Lee, who had long insisted that “To Kill a Mockingbird” would be her only book.

HarperCollins, where authors have included Michael Crichton and Veronica Roth, is calling “Watchman” its fastest seller in history. Other books have sold much faster: “Harry Potter and the Deathly Hallows,” published in the U.S. by Scholastic in 2007, sold 8.3 million copies in its first 24 hours.

“Watchman” was released July 14 and as of early Monday remains at No. 1 on Amazon.com and Barnes & Noble.com, with “Mockingbird” also in the top 10. HarperCollins has increased an initial print run of 2 million copies for “Watchman” to 3.3 million.

“Watchman” was completed before Lee’s Pulitzer Prize-winning “Mockingbird,” but is set in the same Alabama community 20 years later. Critics and readers were startled to find the heroic Atticus of “Mockingbird” disparaging blacks and condemning the Supreme Court’s decision to outlaw segregation in public schools.

Questions about the book arose almost immediately after HarperCollins announced it, with Lee scholars noting that “Watchman” was the work of a young and inexperienced author and friends and admirers of the  89-year-old author worrying that the book had been approved without her participation. State officials in Lee’s native Alabama, where she resides in an assisted living facility, met with her and concluded she was alert and able to make decisions about “Watchman,” which Lee attorney Tonja Carter has said she discovered last year.

Walking with my mother in her heart-breaking decline

All life cycles have watershed moments, times when another bridge has been irrevocably crossed. In the life of a child, that moment is often a joyful one. But for an elderly parent, life proceeds in reverse, leading often to sorrowful conclusions. 

My mother Liz, who is 93 years old, reached one of those watershed moments one night three years ago. 

We had moved my mother from Milwaukee to a senior housing complex near our Madison home five years earlier. My wife Jean and I had visited her twice that Sunday to address various issues. She seemed strange, but we weren’t yet seasoned enough to understand what was wrong.

After her third call, we returned to find Mom sitting in her nightgown on her bed, with three television and cable system remotes and three cordless telephones alongside her. We realized that something was happening.

Jean began to remove the clutter, which snapped Mother out of her stupor,

“Don’t touch those,” she said anxiously. “Those are my phones!”

Some were her phones, and some weren’t. Due to their similar shape and color, she could no longer tell the difference. We bundled her up and took her to the nearest emergency room.

> > >

More than 10 million adult children over 50 care for aging parents, according to a 2011 study by the MetLife Mature Market Institute. Baby Boomers comprise the majority of caregivers. The number of parents cared for both physically and financially by their kids has more than tripled over the past 15 years.

Not surprisingly, daughters tend to provide more care than sons and suffer more financially because of it. On average, the amount of lost wages, pension dollars and Social Security benefits for women forced to leave the workforce early to provide care totals $324,044, according to the study. Men suffer less financially, but it still costs them an average of $283,716 in aggregate salary and benefit losses to care for elderly parents.

A disproportionate number of boomers caring for parents are gay and lesbian, according to John George, health care administrator for Saint John’s On The Lake, a retirement community of 330 residents on Milwaukee’s east side.

> > >

Upon reaching the hospital that Sunday night, my mother was diagnosed with dehydration and a urinary tract infection, both of which accounted for her confusion. But we would soon discover she also suffered from transient ischemic attacks, often called TIAs or “mini-strokes.” Those would lead to more dire consequences. 

TIAs are caused by blood clots that come and go in the brain. Some are relatively harmless, while others can be precursors to larger, fatal strokes. A series of TIAs followed by a large stroke killed Mom’s older brother Harold decades earlier. We felt that a similar outcome was possible, if not imminent, for her.

While doctors worked to get her situation under control, we made arrangements to move Mom temporarily to a nursing home for rehabilitation. A former RN, my mother had worked at Sunrise Care Center on Milwaukee’s south side until she was almost 86. We thought she’d be comfortable with the transition.

> > >

Transitions to some level of assisted living are often the most difficult things for families to cope with, according to Elaine Dyer, a registered nurse and administrator for the Jewish Home and Care Center, a 160-bed retirement community also on Milwaukee’s east side. Large families often have the hardest time agreeing on what should be done with an elderly parent.

“When there’s more than one child, there’s always more than one opinion,” Dyer says. “As caregivers, we need a point person whose guidance we can rely on, and that person needs to be the patient’s health care power of attorney in order to make the right decisions.”

Dyer’s own mother was a resident at the Jewish Home until she passed away from Alzheimer’s disease last October, and the administrator is acutely aware of how hard the “little losses” of cognitive decline can be on family members.

“Watching cognitive decline is harder than watching physical decline,” Dyer says. “The elderly begin to lose the abilities you gain as a child, including swallowing, talking, walking, bowl and bladder control.”

In terms of providing care, Wisconsin’s 323 nursing homes serve only about 5 percent of the state’s population over 65, Dyer says. The surprising statistic is mostly due to finances. Owing to the recent financial recession, admissions to skilled care facilities have declined over the past four to five years, because too many families need their parents’ Social Security checks to make ends meet.

And then there’s the cost of putting those parents in a skilled care facility.

“The cost for nursing home care is $8,000 to $10,000 a month, and even the wealthiest person who has saved for it could one day run out of money,” Dyer says.

But before that happens, adult children should make sure they understand what their aging parents want and then make those ultimate decisions based on that guidance, she adds.

> > >

Mom spent two weeks in the nursing home, eventually returning to a variant of her former self. But we knew that bridges had been crossed and things would never be the same again.

During my mother’s nursing home stay, we found her an assisted living facility on Madison’s west side. We moved her out of her senior apartment, disposing of furniture and other things she no longer needed. During the grueling two-week process, we discovered clues to her cognitive failure that weren’t previously apparent.

Dozens of unopened bottles of generic acetaminophen and countless file cards and paper scraps with duplicate addresses and phone numbers she didn’t want to forget filled nooks and crannies. We discovered boxes of junk mail — her “bills” as she called them — including some stored in the unused dishwasher. We found cash in the refrigerator.

Mom appeared to be settling in nicely to her assisted living facility, making new friends and regularly eating a healthy diet, something she had also stopped doing in her apartment. There were even activities and outings, but over the course of two years we could see that she had started slowing down.

When construction began on the facility’s new addition, we saw her confusion and anxiety increase. A series of three UTIs in as many months seemed to send her to the moon and back again — not to mention the hospital — on a regular basis. 

George notes that a change in a senior’s environment can result in “transfer trauma” and a large percentage of sufferers are usually dead within a year. When her strange behavior continued, we began to wonder just how long her future would be.

My mother called me on the telephone last week. 

“Mike? This is Grandma,” she said. “If you are out can you stop by? I haven’t had a working phone all day.”

And so, once again, it begins. I don’t want to spend Mothers’ Day at the hospital this year, but maybe just having one more Mother’s Day anywhere is the best I can hope for.

Walker dismantles care systems

While Gov. Scott Walker struts around the country campaigning for president, bombshells from his proposed state budget continue to shred the lives and hopes of millions of Wisconsinites.

The latest example of reckless overreach by Walker is his proposal to overhaul the state’s long-term care system for people with disabilities and the elderly. It had the usual elements of “shock and awe.” It forecloses public input, regional control and transparency. It rewards campaign contributors and destroys an effective public service that was decades in the making.

Changes in the long-term care system came as a complete shock to everyone involved. People with disabilities, the elderly and their loved ones, caregivers, health providers, managed care organizations, advisory bodies, the state’s Division of Long Term Care and even Walker’s own Secretary of Health Services Kitty Rhoades were blindsided by the proposed changes.

Rhoades insisted that the changes — which she could not enumerate — were all for the best and that the details would be worked out during negotiations with the Centers for Medicare and Medicaid Services. The feds cover 58 percent of the costs of Wisconsin’s Medicaid program.

Meanwhile, Rhoades abruptly canceled meetings of the state’s Long Term Care Advisory Council. The council is made up of consumers, administrators and service providers. Walker is not interested in their input. He is dictating the terms and has the votes in the GOP-controlled Legislature to have his way.

The current long-term care system took years of development and is based on active input from the individuals whose lives are most impacted. The programs are cost-effective, outcomes are good, satisfaction levels are high (an astonishing 95–97 percent), and the regional managed care organizations have won respect for their responsiveness and accountability. 

Among dozens of dastardly deeds, Walker’s budget eliminates IRIS, a program that allows consumers to choose their own caregivers and support services within their allotted budget. Self-determination and independent living have been central goals of the disability rights movement. Just as those values have finally made inroads into changing the traditional top-down, medical model of long- term care, Walker is kicking them to the curb.

A $19 million cut to Personal Services translates to 1 million fewer hours of personal care for our elderly and disabled neighbors.

Leave it to Scott Walker: not only do his policies threaten the welfare and self-determination of our most vulnerable citizens, they also destroy jobs. The budget eliminates the eight long-term care districts and requires Managed Care Organizations to provide services statewide. This opens the door to contracts with big national insurers — no doubt, campaign contributors — displacing the regional MCOs that have built trust with consumers. More than 3,000 local jobs could be lost.

Big insurers will direct care with all their usual restrictions and arbitrary decisions. Changes in doctors and caregivers will be traumatic for elderly and disabled people. The budget also removes legislative oversight of Medicaid programs. Public oversight is being handed over to the state commissioner of insurance. How convenient.

Walker is like the proverbial bull in the china shop, wiping out valuable assets Wisconsinites have built over many years — worker protections, our university system, natural resources and, now, a long-term care system considered a model for the nation. It will take generations to undo the damage.

For a detailed summary of disability-related impacts and information on public hearings on the budget, go to http://www.disabilityrightswi.org/archives/4867

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‘Still Alice’ highlighting often hidden toll of Alzheimer’s

Her performance as a vibrant woman fading into the darkness of Alzheimer’s is doing more than earning awards for actress Julianne Moore. The movie “Still Alice” is raising awareness of a disease too often suffered in isolation, even if the Hollywood face is younger than the typical real-life patient.

Some things to know about Alzheimer’s:


The movie is about a linguistics professor stricken at the unusually young age of 50 with a form of Alzheimer’s that runs in her family. That type of Alzheimer’s accounts for a small fraction of the brain-destroying disease.

About 35 million people worldwide, and 5.2 million in the U.S., have Alzheimer’s or similar dementias. The vast majority are 65 or older. Barring medical breakthroughs, U.S. cases are expected to more than double by 2050, because of the aging population.

As many as 4 percent of cases worldwide are thought to be the early-onset form that strikes people before age 65, usually in their 40s or 50s, said the Alzheimer’s Association’s chief science officer, Maria Carrillo, who served as a scientific adviser for the movie. In the U.S., the association estimates that’s 200,000 people.


Alice’s type is even more rare; she tells her three adult children in the movie: “It’s familial. It’s passed on genetically.”

With this autosomal dominant form of young Alzheimer’s, inheriting one of three genes with particular mutations leads to the disease. Children of an affected parent have a 50 percent chance of having inherited the family’s culprit mutation. As in other families, Alice’s children have to grapple with whether they want to be tested to find out.

But the vast majority of Alzheimer’s isn’t linked to a particular bad gene. There are various genes that can increase the risk, but people who never develop dementia symptoms can carry them, too. That’s why medical guidelines don’t recommend genetic testing for the average person.


“I can see the words hanging in front of me and I can’t reach them, and I don’t know who I am or what I’m going to lose next,” Alice says.

To help with the movie’s first-person perspective, Carrillo’s group put actress Moore in touch with someone in the earlier stages of Alzheimer’s who could describe how disorienting symptoms felt — that frustrating inability to retrieve a word or the fear that comes with suddenly not recognizing a familiar place.

Forgetting a word now and then happens to lots of people. The Alzheimer’s Association lists warning signs that may distinguish between normal forgetfulness and something you should discuss with a doctor. On the worry list: memory loss that disrupts daily life, difficulty completing familiar tasks, withdrawing from social activities and personality changes.


If it seemed like the movie’s Alice suddenly declined fast, consider a concept that neuroscientists call “cognitive reserve.” People who have had more years of education are thought to have some protection because the extra learning increased connections between their brain’s neurons. When Alzheimer’s begins blocking those connections, the brain at first can choose an alternate route to retrieve a memory.

“Your brain’s kept buffered up,” explained Carrillo. But eventually, the brain reaches a tipping point and can’t compensate any longer, so “the change seems more dramatic.”


There is no cure for Alzheimer’s, and today’s treatments only temporarily ease some symptoms. Scientists aren’t even sure what causes the disease, although a sticky brain protein called amyloid is one suspect.

Nor is diagnosis simple. There is no one Alzheimer’s test, but a battery of evaluations. Sometimes, doctors use PET scans to measure amyloid buildup, but only in carefully selected cases because plenty of people without Alzheimer’s harbor the gunk, too.

The Obama administration has declared a goal of finding effective Alzheimer’s treatments by 2025. Research suggests Alzheimer’s begins silently ravaging the brain up to 20 years before symptoms begin. One approach under study now is testing to see whether curbing sticky amyloid during that window period might at least postpone symptoms a few more years, if not prevent them.

On the Web

Information on volunteering for research: http://bit.ly/1dRZCv5

The government’s clinical trial database: http://www.clinicaltrials.gov

Death Cafes allow end-of-life discussions

On a blazing afternoon, cars vie for the few shaded parking spots outside Radiance of Sarasota in Florida, a storefront in a small strip mall billed as a “wellness and inspiration center.”

Visitors, mostly aged 50-plus, enter the center’s cool, dimly lit quarters, where they’re invited to help themselves to tea, pastel-colored pastries, gluten-free brownies and a seat within a large circle of chairs.

They are not necessarily seeking radiance, wellness or inspiration. They are here to participate in a frank, open-ended discussion about life’s grand finale at the monthly Sarasota Death Cafe.

The idea? To provide a casual, comfortable space for people to discuss everything from the practical (legal documents and right to die legislation) to the ethereal (near-death experiences and the great “What’s next?”). The free gathering is based on the writings of a Swiss sociologist who believed talking openly about death could lead to a fuller, richer, more conscious life.

If that sounds a little morbid, a growing number of people would disagree. Death cafes are just one of the ways a subject once taboo — or at least uncomfortable — is coming out in the open.

Over the past year, Sarasota, Florida, with one of the oldest demographics in the country, has joined other communities across the nation in embracing frank discussions about the end of life — everything from how to avoid dying in the hospital to advancing legislation in favor of physician-assisted suicide.

A public lecture at the Selby Library by the president of the World Federation of Right to Die Societies in February drew a capacity crowd and went an hour overtime to accommodate questions.

Two panel discussions with end of life experts sponsored by the Herald-Tribune in March following its publication of “Dorothy’s Choice,” the story of one elderly woman’s choice to end life on her own terms, were standing-room only.

A 9 a.m. weekday screening in July of “Consider the Conversation,” an award-winning documentary that encourages people to plan ahead for their deaths, had to be moved to a bigger Lakewood Ranch theater to meet demand.

And the Sarasota Death Cafe, begun in May, tripled in size from the first meeting to the third.

Even parents and children are more frequently broaching the once-taboo subject, though Joelle Angsten, chief medical officer of Tidewell Hospice, doesn’t endorse the frequent suggestion to have “the conversation” over Thanksgiving dinner.

“I’d recommend while you’re in a car on a long trip,” she says, only half in jest. “That way you don’t have to look at each other but you can’t escape.”

As the aging but fiercely independent baby boomers effort to control their own destinies clashes with modern medicine’s ability to sustain life to extremes, a backlash is building. This generation is determined to rewrite the script on dying, much as they have altered social acceptance of living together without marriage, nursing babies in public or same-sex unions.

But it won’t happen, they say, unless we talk about it.

“No previous generations have had to figure this out,” Angsten says. “So there’s no role model. But we’ve adopted so many things that support social change _ like maternity leave, for example. Wouldn’t it be great if we could figure out how to do that at the other end of life?”

The first official “death cafe” was organized by a 40-ish father of two, Jon Underwood, who hosted the initial gathering at his home in East London in September 2011. Underwood’s “Mum,” a psychotherapist, helped to facilitate.

“They’re not being morbid,” Underwood said at the time of the original participants. “These are people who want to live more fully. The more we talk about dying and what it means about ego and self, the more we add to life.”

After he created a website, deathcafe.com, with instructions on how others could start their own chapters, the idea proliferated into a global movement. The first death cafe in the United States was held in Columbus, Ohio, in 2012; there are now hundreds of regular gatherings in this country and more than 1,000 meetings have taken place around the world.

The cafes _ which have no set objectives, agendas or themes, nor any profit motives _ reached Florida during the past year, with sessions held in Tampa, Naples, Gainesville and Ocala, as well as Sarasota.

The local group was started by Lori Marshall and her partner, Mark Sanders, who call themselves “spiritual mediums and life counselors.” It has drawn a diverse crowd: from psychics to educators, elders on oxygen to an 11-year-old girl who accompanied her mother and, at one point, burst into tears, protesting, “But I don’t want to die!”

Donna (who does not share her last name) says that when she first heard the term “death cafe,” she assumed it must be a party for Grateful Dead fans. Then she thought it was a joke. But as caregiver for both of her parents, who are in their 80s, she is looking for help with end of life planning.

Tobie DeSantis, who assists the elderly with end of life challenges _ her business card advertises help with household needs, doctors appointments and “special projects” _ came to learn more about Florida’s laws regarding deaths that take place at home.

Mark Tishman wants to help people through the dying process with a more natural approach than the one he was taught as a funeral director.

Susan Dana figured a birthday trip to the death cafe was a fitting follow-up to a stop at the Marie Selby Botanical Gardens for a glimpse of the Amorphophallu titanum or “corpse” plant, which blooms only once every few years and smells, so they say, like a decomposing mammal.

“Every month we’re not really sure what will happen,” says Marshall, who was motivated to start the group after the “amazing experience” of watching her father die in hospital hospice two years ago. “But everyone leaves feeling just a little more connected, a little more comfortable and little less fearful about the idea of death.”

Death and how we deal with it has changed dramatically over the past century, Marshall says. Before advances in medicine made it possible to sustain life beyond “natural” limits, a death at home was the logical bookend to a birth that also took place at home. Family members held vigils as a loved one expired and personally prepared the body for burial.

Now, with most people dying in the hospital, the process has become clinical and the intimacy desensitized, she says; the body becomes an object to be whisked away to a crematory or funeral parlor and the vigil agonizing or feared.

No one gathered here thinks being hooked up to a ventilator matches their idea of a graceful, dignified leave-taking. But they aren’t necessarily unified about what does. Over the course of two hours, the conversation veers from the inadequacy of living wills and “Do Not Resuscitate” orders to how to communicate with those “on the other side.” At one awkward moment, it even segues into someone’s tirade about drones, but that topic is quickly shut down. Organizers are emphatic that meetings are not meant for grief counseling nor political rants.

For the most part, the exchanges are sensitive, thoughtful and accepting of a diversity of opinion. In fact, were it not for the skeleton skull that decorates the refreshment table, you might think you’d stumbled on a friendly coffee klatch or a “Meet Up” group. Though there is plenty of solemnity and even the occasional tear _ Marshall has learned to have a box of tissues on hand _ humor surfaces just as readily.

In fact, it doesn’t take much more than the brief self-introductions that kick off the session, to demonstrate that, while death may be no laughing matter, it can elicit plenty of good-natured jokes.

One elderly man smiles endearingly at the woman seated next to him as he shares that on this very date 56 years earlier, they were in the middle of their wedding ceremony.

With perfect comic timing, John St. Clair, a retired probate attorney, quips:

“Well if that’s the case, no wonder you wanted to come to a death cafe today!”

Not every death cafe takes place in a public place.

In Ocala, monthly meetings that began last October were moved from Mojo’s Grill, which proved too hot, noisy and distracting, to the comfortably middle-class living room of Teddy Laury.

Jovial and direct, Laury is a native of the Netherlands, the first country to legalize physician-assisted suicide in 2001 and the catalyst for starting this first death cafe in Florida. She is not accustomed to holding back her opinions on death or anything else, for that matter; the back of her SUV bears bumper stickers with environmental, political and religious slogans.

“Holland has always been a refuge for people persecuted for every reason,” she says, with a gutteral accent. “In the Netherlands, we talk about everything.”

So does this group of eight people _ plus one dog and two cats _ who met on the last Monday evening of July in a cramped circle, perched on an assortment of overstuffed chairs and furniture dragged in from the nearby screened porch.

Donna Wright and her friend, Lee Hansen, arrive a few minutes late after the 30-minute drive from their home in Cross Creek. Wright promised her late husband she would not allow him to suffer during his death from cancer; Hansen worked for many years in hospice.

Diane Podkomorski is an administrator at an assisted-living center looking to “open people’s eyes to the fact that you can’t wait until the last minute to make your plans.”

Don and Dave Laury, Teddy’s brothers-in-law sit mutely on the couch; they are here because they are Laury’s health care surrogates.

Whether because of its seniority, make up or location, this meeting has a different feel than the one in Sarasota. There are salty snacks and beer on the refreshment table as well as coffee and cookies and the conversation is less New Age and more topical, occasionally getting sidetracked by current events.

At a previous meeting the group watched a Dutch documentary about assisted suicide. But at this one, like most, there is no visual or verbal “prompt,” just friendly, like-minded chat about what Hansen calls “our death-denying, death-defying” world.” Laury sees that attitude as particularly American.

“This country is all about winning and American doctors feel like they have to win the fight,” she says. “Whereas our doctors in Holland look much more at the quality of life.”

For example, she says, when she recently refused a mammogram based on her conviction that, even if she had cancer, she wouldn’t choose to treat it, her doctor responded with: “I did not hear you say that.” When she speaks of her late husband’s choice to refuse chemotherapy after a diagnosis of stage four lung cancer _ he loved food and enjoyed a steak and potatoes dinner the night before he died _ it comes with a warning about the difficulty of charting a course that defies the medical model.

“When I asked for a referral to hospice after his diagnosis, the nurse gave me the dirtiest look, like, ‘So, you’re trying to get rid of him?”” Laury recalls. “And even as on top of it as I was, I let the oncologist talk us into a test that put him in the hospital for two days. He died at home, but I had a hard time getting him back out.”

Agrees Hansen: “Once that 911 call goes in, it’s out of your control.”

When the talk turns toward physicians’ inability to discuss end of life with their patients, Lila Ivey, the outreach coordinator for Marion County Hospice, is sympathetic, but pragmatic.

“Our doctors don’t want to go to jail,” she says. “They’re trained to meet people where they are, but people are uncomfortable talking about this with their own families. They’re certainly not going to talk to their doctors.”

Leslie Robertson, who is working on a graduate degree in suicidology — she’s careful to clarify that means counseling people who are suicidal, not advocating for it — wants to be part of altering attitudes about what constitutes a “good death.” She represents the youngest edge of the boomer generation, and believes a tidal shift is coming.

“Older folks might have wanted to go to the hospital to die, but baby boomers don’t,” says Robertson. “I feel like we need to let the community know there’s a better way.”

An AP member exchange.

FACETIME: Filler turns back the clock on your face by replacing volume lost from aging

In their never-ending quest to maintain a youthful appearance, Americans of a certain age and mindset are increasingly choosing dermal fillers over surgery to smooth the cracks and crevices of time. Together with Botox, fillers can erase a decade or more of age’s cruelties in a relatively inexpensive and painless hour. Unlike cosmetic surgery, which carries the danger of branding you with that alien or “wind-tunnel” look, fillers are subtle and non-invasive. 

Those on the fence should know that fillers come with a double-edged benefit. If you don’t like the results, you can just wait: They generally dissipate after eight months. But if you do like the results, that temporary nature is a liability. As one of the latter, I was excited to learn about ArteFill, a dermal filler that, in the hands of a skilled practitioner, cannot only pave over the potholes of time but also resculpt the youthful contours of your face.

Best of all, the effects can last for seven years — or longer. 

Comfort level

When Dr. Stacy Kaiser, who owns A Younger You Medical Spa in Brookfield, offered me the opportunity to try out ArteFill, I instantly agreed. Kaiser is a Picasso with a syringe, as she’s proven several times in the course of applying various injectable products to my face. Because I have very thin skin (literally, not metaphorically), such procedures usually leave me with a few bruises. But Kaiser, who began her medical career as an ER doc, has given me dozens of injections without even breaking a capillary. She says that’s a matter of luck, but after 15 years of undergoing such procedures, I’m convinced that it’s skill.

A Younger You operates three small offices, in Burlington, Lake Geneva and Brookfield. The Brookfield office is a small, homey suite, a welcome contrast to the faux McMansions and strip mall castles where I’ve generally had such work done.

Feeling at ease is an essential ingredient in achieving success with cosmetic fillers. You have to be comfortable enough with the doctor or practitioner to share insecurities about your most defining physical characteristic — your face. The practitioner must have not only technical skills and product knowledge, but also the ability to manage your expectations, and to read and maintain your level of comfort during the procedure. The best practitioners engage you in the process, soliciting your input and approval.

Dermal fillers correct changes in the face that accompany aging, particularly the loss of subcutaneous fat and protein-like substances. Those losses create the sunken cheeks, hollow eyes, creases and wrinkles that are inevitable markers of our golden years. 

Beginning around age 25, the body stops producing collagen and elastin, which are in the deepest layer of the skin. As a result, your skin becomes gradually thinner and looser. It’s not gravity that makes your face look like it’s fleeing to Mexico as you get older, it’s the loss of elastin, the substance that holds your skin in place.

Fill ’er up

The dermal fillers Restylane, Juvederm and Radiesse (I’ve tried them all) are effective at correcting the loss of volume in the face. They’re used most commonly to plump up cheeks and fill crevices in the nasolabial fold, the area of the face between the nose and mouth. Fillers also add volume to the lips, replace fat loss under the eyes and erase “puppet lines” — those pesky creases that form at the corners of the mouth.

I’ve used dermal fillers for more than a decade and, in most cases, I’ve been highly satisfied. They create subtle improvements that make my face appear healthier and refreshed but not artificial. The only times I’ve been disappointed were when I failed to heed the doctor’s advice and insisted on overdoing it.

Making collagen

There are several important differences between ArteFill and other fillers. It’s injected with a blunt-tipped cannula tube rather than a syringe, which I found more comfortable. ArteFill is also more flexible, and can be used in more areas of the face and for more purposes.

Most importantly, the technology behind ArteFill, the longest studied of all dermal fillers, provides twofold benefits.

One ingredient in ArteFill is bovine collagen, which instantly plumps up the skin as it is applied, just as other fillers do. But contained within ArteFill’s collagen are beads of polymethylmethacrylate (PMA), a compound used for years as a surgical glue and a permanent filler for soft-tissue augmentation.

After the collagen in ArteFill breaks down and is absorbed by the body, the tiny round particles of PMA remain behind. “They’re too big to eliminate and they’re inert,” Kaiser says. “The body can’t dispose of them or degrade them, so they just remain there.”

You want that because PMA stimulates collagen production. Kaiser says the PMA works like scaffolding, on which the body goes to work building new matrices of collagen. It’s truly a gift that keeps on giving.

Before my procedure, Kaiser scrutinized my face to identify areas of fat loss and asymmetry. Research has shown that people rate symmetrical faces as more attractive than asymmetrical ones, so Artefill can improve on what you had before aging began.

From lax to firm

I quickly discovered ArteFill could help out cosmetically in ways that I’d never imagined. When I complained about some droopiness over my right eye, Kaiser simply inserted a dollop of filler over my brow. The filler slightly pulled up the skin above my eye and voila — the droopiness was gone.

Kaiser also used ArteFill above my cheeks and forehead to balance out the volume added to the lower part of my face, where I had ArteFill placed in my jawline. The filler also made the sides of my face more symmetrical.

As Kaiser predicted, the initial volume slowly dissipated over the course of several weeks. But after two months, the collagen-making process began to show dramatically in many ways.

After three months, my skin is appreciably smoother and healthier looking. The volume lost after the initial collagen injection was absorbed, but now collagen has returned in force, supplied by own body. The skin on my jawline is dramatically firmer, an effect that I hadn’t thought was possible. 

All told, Kaiser used five syringes of ArteFill on my mug, which carries a total price tag of $2,750. That represents far less than I would have spent on my annual doses of fillers, which are now unnecessary. In fact, the treatment accomplished many of the goals of a facelift, which costs upwards of $12,000.

And the process might not be over yet. With my body now in collagen-churning mode, I will likely continue to see improvements, Kaiser said.

Because of the body’s delayed response to the treatment, she requires patients to wait three months after their initial application of ArteFill before receiving more. But I think she got it just right for me the first time. My face is good to go.