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Features
18
Jerry Louis, Graphic Designer
Toby Bilanow, Bernard A. Krooks,
Contributing Writers
10 Focusing on Love
Artist Judith Fox documents her husband’s
battle with Alzheimer’s disease in I Still Do, her Preserving Your Memory
new book of photography. is published by
Vitality Communications
407 Norwalk St., Greensboro,NC 27407
14 Honoring Older Volunteers (336) 547-8970
The National Association of Area Agencies on Sam Gaines, Managing Editor
Aging (n4a) and MetLife Foundation honor Traci S. Cossman, Senior Art Director
outstanding senior volunteers. Judy Nance, Account Manager
Jan McLean, Creative Director
F
or many of us, it’s much colder outside this time of year. And that’s all the more
reason to draw closer to our loved ones inside.
The winter issue of Preserving Your Memory will help strengthen family bonds.
Don’t miss the poignant photography of Judith Fox, a celebrated artist who has just
published I Still Do, a volume featuring her photographs of her husband as he battles
Alzheimer’s disease. If Retirement Living TV is part of your television provider’s
package, be sure to look out for Not Fade Away, the new special on Alzheimer’s that is
currently airing.
We celebrate the accomplishments of senior volunteers, whose work is touching
the lives of people of all ages, as we celebrate the MetLife Foundation’s annual Older
Volunteers Enrich America Awards, given each year by the National Association for
Area Agencies on Aging.
In our cover story, Grammy-winning country/folk recording artist Kathy Mattea Betsey Odell
tells us about more than 25 years as a celebrated musician, her most recent CD release
about her West Virginia home (Coal), and her own family’s battle with Alzheimer’s. Kathy lost her mother and an aunt to
the disease, and another aunt was recently diagnosed.
Need some healthy ideas for recipes? CRL Retirement Centers are serving up delicious menu for their residents, and they
share a few recipes with us.
We hope your winter is a time of warmth and togetherness, and we hope that Preserving Your Memory is part of your
winter, too.
Please send your tips, stories or questions to the Fisher Center for
Alzheimer’s Research Foundation, West 46th St. & 12th Ave.,
New York, NY 10036, or by e-mail to betsey@alzinfo.org.
Betsey Odell
Editor in Chief
Correction
In the Fall 2009 issue of Preserving Your Memory, the article “Memory and Aging on Exhibit” (pp. 12-13) contained an
error. The sentence, “The exhibit was initially funded by a grant from the National Science Education Partnership, part
of the National Science Foundation,” should have read, “The exhibit was initially funded by a grant from the Science
Education Partnership Award (SEPA), part of the National Institutes of Health (NIH).” We regret the error.
Free samples
“Before you’re put on a new prescription, ask your doctor
for free samples of the medication being prescribed,” suggests
Pharmacist Paul Reyes, who works with Medco, a pharmacy
benefit manager (PBM) headquartered in Franklin Lakes,
N.J., and host of the nationally syndicated radio show “Ask
the Pharmacist.” “This can be especially helpful if you are
starting a new medication and need to determine whether or
not it will work properly.”
A little advance planning can help keep
Go Generic prescription costs from breaking the budget.
Reyes also suggests purchasing generics instead of brand
name drugs.
“If you’re uninsured, this can make a difference of the FDA allows a variability of up to 30 percent between
hundreds of dollars in some cases. But even if you have the brand name and the generic,” he says. “When buying
health insurance, the difference in co-pays can be significant a generic, make sure that the pharmacist is using a product
even for one medication,” Reyes says. “And when you take from a reputable source. With the advent of $4 prescriptions,
multiple medications, that difference can add up to big over 65 percent of all prescriptions being dispensed are filled
savings.” with generics, so as a consumer make sure you are asking
But are generics as safe and effective as the brand your pharmacist good questions. Pharmacists are highly
names? Reyes says generic medications use the same active educated professionals who are the medication experts.”
ingredients as brands and are approved by the U.S. Food and So why so cheap? Brand-name manufacturers typically
Drug Administration to be equivalent to brand-name meds receive a patent from the FDA that provides them with
in treating the same medical conditions. exclusive rights to manufacture and market a medication for
“The generic manufacturer must provide evidence that a given time. After that, companies that make generics can
their product has the same active ingredients and works the produce the same medication, but without conducting all the
same way in the body as the brand name drug. Often, the research that went into making the drug initially, passing the
non-active ingredients may make the product a different savings down to the consumer.
color, shape or size,” Reyes says. If your medication doesn’t have a generic equivalent, there
But not all pharmacists agree. Dan Steiber, a registered might be similar medications in the same category that
pharmacist and pharmaceuticals consultant in Plano, Texas, do have a generic. “These are often referred to as generic
says not all lookalikes are alike. “In pharmaceutical generics, alternatives, which may be used to treat the same conditions and
Focusing on Love
Book Marries Pictures with Words
in Honor of a Spouse’s Battle with AD By Mary Adam Thomas
Photos and captions by Judith Fox
I
n the photograph, a silver-haired man sits alone at a small outdoor table, surrounded by oversized
concrete tiles whose boxy right angles stand in sharp contrast to the table’s circular fluidity. He
wears stylish sportswear, his hair is neatly combed and his leather shoes shine in the sun. We
see him from above, not to look down on him but simply to observe his moment of solitude from a
respectful distance. The image conveys loneliness and elegance at the same time.
The photo’s subject is Dr. Edmund Ackell, an Alzheimer’s sufferer, and its photographer is his
wife and caregiver, Judith Fox. It appears on the cover of Ms. Fox’s new book, I Still Do: Loving and
Living with Alzheimer’s, which pairs the author’s spectacular images of Dr. Ackell with her poignant
words about their dual descent into the disease.
For several years, Ed didn’t want people to know he had Alzheimer’s. He wanted to be
treated with respect and he didn’t want people to think he was “crazy.” There are many
incorrect assumptions about the disease—some held by the people who have it.
Up Close
While each of the book’s pictures is hauntingly moving, Ms. Fox has some favorites. “I love all of
the images in the book because they all reflect Ed in different moods and moments,” she says. “But
as the woman who loves Ed, I would say one of my favorites is the close-up of him as he’s focusing
on a friend who was sitting next to him. The unseen friend is talking and even though Ed is in the
advanced stage of the disease, he is happy and lucid and smiling. The photograph captures Ed’s
sparkle and his gentle, intelligent and sweet nature.”
In addition, Ms. Fox says she is always deeply affected when she looks at one image (not shown)
that shows her husband in an extreme close-up. “As both wife and photographer, I can see that his
disease is advanced and the photograph shows the magnitude of his pain,” she says.
When Ms. Fox talks with her husband about her book now, she reports that he’s happy for her,
even if he doesn’t always remember what the book is about. “It pains me that I can’t fully share with
him the joy of this part of our partnership, and that he doesn’t grasp how deeply his story touches
and helps so many people,” she says.
“My photography, in addition to the work I do for I Still Do, keeps me excited, challenged and
moving forward,” Ms. Fox says. “Yet I also deal daily with my loss, my deep pain for Ed’s suffering,
my gratitude that he is still in my life and my fear of what is still ahead.” ■
Read more about the book and its author by visiting www.powerhousebooks.com or www.judithfox.com.
I Still Do can be found at Amazon.com, Barnes & Noble, or at your local bookseller.
Volunteers
The National Association for Area Agencies on Aging (n4a), a national nonprofit,
supports and promotes volunteering among older adults throughout the nation. Every
year, n4a honors these volunteers with the Older Volunteers Enrich America Awards.
Volunteer
Grandpa Archie
and family.
Back row standing:
Melanie Thompson,
Sue Thompson,
Sherry Thompson,
Archie Thompson, Jr.,
Willie Thompson,
Archie Thompson, 3rd,
and Kristen Thompson.
Photo courtesy of Archie Thompson, Sr.
E
very day, all across our nation, volunteers make April Hawkins, director of the Civic Affairs Program at
an enormous difference in the lives of people MetLife Foundation. “We are pleased to celebrate the
who need help. Volunteers benefit, too. Keeping significant contributions that older volunteers are making
mentally and physically active in retirement helps the body in communities across the country and hope their stories
and mind stay healthy. will inspire individuals of all ages to volunteer.”
Every year, n4a honors older volunteers who have gone
above and beyond in making a positive impact for their The Growing Need for Volunteers
communities with the MetLife Foundation Older Volunteers As a result of the recession, local, regional and national
Enrich America Awards. These awards honor the voluntary government services are in high demand. Many such services
contributions of time and energy that older Americans are being cut during this business downturn, and the need
give to their communities in three categories: Community for older volunteers has never been greater. It’s only going to
Champion, Team Spirit and Mentor Awards. Sponsored by get more so, says Mary Brugger Murphy, program director of
MetLife Foundation, the awards recognize the winners, while n4a. But that’s just one more area in which older volunteers
celebrating the important volunteer work nationwide that can make a huge difference. “Four of the volunteers we
older Americans take on across a broad range of needs. honored this year took over the management of the programs
“MetLife Foundation is committed to building healthy they volunteered for to keep them afloat,” Murphy says.
communities and recognizes that healthy communities That’s just part of what makes them especially valuable to the
engage the time and talent of individuals of all ages,” said people whose needs they meet: Their experience and wisdom,
14 Preserving Your Memory winter 2009
honed by many years of being parents, business owners, employees
and consultants in a vast array of occupations and industries. And the Winner Is …
“Many of the volunteers we’ve met do work that is very When the n4a presented the 2009 MetLife Foundation
similar to the paid work they did over the years,” says Older Volunteers Enrich America Awards in May,
Murphy. “Thus drivers become volunteer drivers, teachers the organization honored outstanding volunteers
become volunteer teachers, etc.” But there are also older in three categories, with a Gold Honoree is each
Americans who take a set of work-related skills and apply category. The Gold Honorees were:
them in a new way as a volunteer. “Sometimes it’s a skills • Mentor Award: Robert “Bob” Burtwell,
transference,” Murphy say, “like a dentist I met who Venice, Fla. For the past 10 years, Bob has
became a volunteer plumber.” given his time and extraordinarily green thumb
Older volunteers make a tremendous impact everywhere to the Laurel Nokomis School, which serves
they’re involved, predominantly by working with local K-8 students, as well as a special dropout-
nonprofit or government agencies that offer services prevention program for at-risk mothers. A
that help people of all ages. In fact, n4a works with 629 Master Gardener, Burtwell led students in
area agencies and 246 Title VI Native American aging building planters for a local nursing and
programs, all in several critical areas. assisted-living facility that residents could tend
from their wheelchairs. He has also worked with
Touching Lives emotionally handicapped youth, leading one
The impact of volunteers on the lives of individuals with project where the boys and he built raised-bed
real needs and our nation’s welfare is hard to overstate, but gardens for wheelchair-bound residents.
there is no question that volunteering benefits not only the
• Community Champion Award: Frank Iszak,
recipient of the volunteer’s efforts, but also the volunteer.
San Diego, Calif. As the economy soured,
“It’s a great opportunity to give back to the community,
government and nonprofit programs for the
as well as an opportunity to be involved and active,”
elderly saw their budgets trimmed or eliminated
says Murphy. “It’s also a great benefit for the mind, as it
completely. Frank Iszak, a refugee from
involves intellectual engagement.”
Hungary’s fall to communism in 1956, decided
Staying socially involved can be a challenge for
it was time to serve the country he has come
some older Americans, so volunteering provides a very
to love and call home. Iszak and his wife began
productive way for doing that, as well. “We have greater
raising the needed funds to pay yoga teachers
numbers of older adults than ever, and they’re living
for their work with senior adults and the blind at
longer than ever before, too,” Murphy points out. “These
30 venues in San Diego County. Thanks to their
individuals have a need to be productive through their
efforts, many of their fellow residents of limited
extended lives, and we need their depth of experience and
income continue to enjoy the health-supporting
energy to make a difference in our communities.”
benefits of yoga as a free service.
One of Murphy’s favorite stories among the many older
volunteers she’s met is that of Archie Thompson, an 89-year- • Team Spirit Award: Beatriz “Betty” Marino,
old “Foster Grandparent” from Crescent City, Calif. (See Portland, Ore. A bilingual retiree, Betty is living
photo on previous page.) As a widower raising eight children proof that “a friend in need is a friend indeed.”
on his own after his wife’s sudden death years before, Archie Budget limitations forced the State of Oregon
knew a thing or two about mentoring youngsters. At the age to scale back a program that helped residents
of 86, “Grandpa Archie” began tutoring and mentoring teens qualify and apply for Medicaid, which left many
for a local organization and is directly credited with inspiring people in need without a way to afford necessary
several teens to finish high school. Grandpa Archie is also medicines and medical services. Betty stepped in
one of the last remaining members of the Yurok Tribe, and to help. She started her own program to research
one of the only native speakers of the Yurok language. He’s pharmaceutical payment-assistance programs
spearheading an effort to preserve the language by teaching it and connect people who needed the help with
to students and creating a Yurok-English dictionary. “Archie applications and follow-up, which entailed
is a delightful man,” says Murphy. hundreds of hours of work. In seven years since
As Murphy points out, though, Grandpa Archie is one she started, Betty has helped more than 500
of many who are making an enormous difference. As our people get the benefits they need, including many
nation faces serious needs in every community, the need of limited English-speaking capabilities.
for volunteers will only increase. ■
winter 2009 www.ALZinfo.org 15
Not Fade Away
By Cari Jackson
A
wareness of Alzheimer’s disease has grown to show how the disease would progress in those early years
in recent decades, with many media outlets and also to ask someone who is still relatively coherent
dedicating airtime to the disease. Yet, much of
that coverage falls short of reaching the general public.
People who have no experience with the
disease might not want to spend hours
watching lengthy documentaries or
immersing themselves in stories whose
outcomes are nearly always depressing.
Elliot Jacobson and David Wasser,
executive producers at Retirement Living
Television, aimed to avoid these pitfalls
when they created the half-hour TV special
Not Fade Away.
Jacobson, who is also Vice President
of Programming at RLTV, was moved
to create this half-hour documentary
after speaking with Daniel Alkon, M.D.,
Scientific Director at the Blanchette
Rockefeller Neurosciences Institute. “When
he explained the significant research studies
that they had on the way and the breakthroughs that they
were anticipating, I was enthralled,” Jacobson says.
Sen. Jay Rockefeller started the Institute nine years ago,
and BRNI received much attention when it opened its
facility in Morgantown, W. Va. But Jacobson knew that
Rockefeller and his mother, Blanchette, formed the heart
of a great story, where scientific progress meets personal
experience. Sen. Rockefeller watched his own mother’s
heartbreaking decline due to Alzheimer’s. After her death, Elliot Jacobson, vice president of programming
he formed BRNI to honor her life and to find a cure. and executive producer, left, and David Wasser,
executive producer at Retirement Living Television.
A Personal Connection
Jacobson’s own father is ailing from Alzheimer’s, so he
became familiar with programming about the disease. He what those moments of overwhelming confusion feel like.
found that shows were often unwieldy and also failed to offer Vitale’s story would also grab the youngest viewers in
the patient’s perspective. Jacobson and Wasser hoped to offer RLTV’s audience, which ranges from 50 and up.
a succinct, 360-degree view of the disease, giving the view of Viewers also hear from Lisa Genova, author of Still Alice,
caretakers, doctors, researchers and most of all, patients. a novel about one woman’s struggle with Alzheimer’s.
Wasser chose to begin “Not Fade Away” with the story of Genova interviewed dozens of patients for her book and
45-year-old Marie Vitale. “I wanted people to understand gained insight into their experience. In Not Fade Away, she
that Alzheimer’s is not always an issue of aging,” Wasser explains, “People say it feels like suddenly they’re playing
says. Wasser mined RLTV archives and found two-year- a game and they don’t understand the rules, and they’re
old footage of Vitale shortly after her initial diagnosis. In really just trying to figure it out in the moment, and it’s
revisiting Vitale and her family, Wasser saw an opportunity baffling to them.”
16 Preserving Your Memory winter 2009
Not Fade Away premiered on World Alzheimer’s Day (Sept. 21).
The Family’s Anguish of Alzheimer’s and this could result in a better outcome.
Just as Alzheimer’s can be scary for the individual, it is When effective treatments that slow or stop the disease
often heartbreaking to families. Sen. Rockefeller speaks are discovered, early diagnosis will be especially valuable
during the second half of the show and describes how he because the disease might be stopped before catastrophic
struggles to remember the sharp, vibrant mother he had, brain damage has occurred.
before the ravages of Alzheimer’s. “As much as I want to tell They also are conducting clinical trials of a drug called
myself that I want to concentrate on her at her best, it’s very bryostatin, derived from bryozoa, a coral-like marine
hard to get away from the end,” he says, as his voice cracks, creature. Bryostatin has been shown to rebuild damaged
“because it doesn’t leave you.” synapses in animal models, and clinical trials have
Wasser gives Sen. Rockefeller a lot of credit for sharing now moved into the human phase. It could also have
his story. “It was especially poignant to get someone like applications for victims of stroke or traumatic head injuries.
Sen. Rockefeller to open up emotionally about this,” Wasser Not Fade Away also points out that people can do
says. “For him to be a little vulnerable was, I think, a telling something to help themselves, particularly by adhering to
statement. It speaks volumes about what this disease does to strategies that also prevent strokes, such as good diet, exercise
people and how it impacts families. This is a family disease.” and intellectual stimulation, as well as avoiding exposure
to potential injuries to the head. “We wanted people to be
Focus on Research aware that there’s a lot of reason for hope, and there are a
The show turns its attention to Blanchette Rockefeller’s lot of good things happening,” Jacobson says. “At the very
legacy, the scientific advances taking place at BRNI. least, people can look out for the signs, to understand what
Currently, the only way to confirm an official diagnosis of Alzheimer’s is, and not to assume that anyone is immune.”
Alzheimer’s is through an autopsy after the patient’s death. Not Fade Away premiered on September 21, 2009—
But researchers at BRNI have discovered a skin test that World Alzheimer’s Day—and will continue to air. It was
may offer a highly accurate diagnosis. With an accurate, made possible by a partnership with the National Cable
early diagnosis, doctors may suggest supportive care earlier, and Telecommunications Association and the Blanchette
as well as drugs that may relieve some of the symptoms Rockefeller Neuroscience Institute. ■
winter 2009 www.ALZinfo.org 17
Kathy Mattea walks the road By Sam Gaines
of Coal Country in her native
West Virginia.
T
hree-time Grammy winner Kathy Mattea has built disease.
a solid career as a singer-songwriter and touring
musician no matter how she’s pegged. She’s found Preserving Your Memory: The Sago mine disaster
success at the pinnacle of country music, scoring 12 Top from 2006 prompted recording of your most recent
Ten singles and three No. 1 hits. She’s sold millions of release, Coal. What about that tragedy struck a
albums. chord to the extent that you wanted to revisit your
Kathy has also overcome great personal adversity, a fact own past as a musician?
she is quite open about—and one that only further endears
her to her passionate fans. Kathy Mattea: Actually, it was an interesting process.
In 2008, Kathy released her 15th album, Coal, a heartfelt I found myself feeling a lot of grief as it unfolded. I
collection of songs about her home state, West Virginia. followed the story day by day, checking the TV hour
Coming in the wake of the 2006 Sago Mine disaster, the by hour, the Internet. I was completely gripped by it. I
Coal been? How have your you can’t really be described as simply a “country
family and friends from West artist,” “folk artist,” or anything else. Over the years,
Virginia responded? has the loving response of your fans to your music
and its directions surprised you?
KM: What I find is that I try
to choose songs that mean KM: I don’t know. I can’t say. Early on, I hoped that
something to me, and that by this point, that I’m still enjoying it, still growing,
resonate with some deeper thing musically or lyrically or still have enough of a fan base that I can make records,
both. The people who are passionate about what I’m doing perform and contribute. And here I am.
also have that passion, and thus we’re kindred spirits. It’s an interesting thing. I got really lucky finding Alan
People have loved Coal. I know I have really yanked my Reynolds. Then there was this other person, a producer
fans around on this musical journey. But it’s been very I never met, and he gave me this life-changing couple of
much a progression, and my fans have already seemed sentences: “She’s got a lovely instrument, but she’s not
delighted by the surprise of it. I’m trying to keep myself really singing—she’s just making beautiful noise. She’s
interested in the present, and growing, and they are singing notes, but she’s not singing the words to the
delighted to come along the journey. That’s one of the songs.” So I started trying to learn the difference. I started
things that keeps me going in this—there are so many trying to inhabit the lyrics, not having to think about
great songs and challenges out there, and it’s just so fun. mechanically reproducing the melody and really being
Coal has also gotten lovely responses from the folks centered through the lyrics. It gave me a different point of
back home. I have an aunt who, from the time I began view with a song, which led ironically to my style—which
this record until now, has really sunken into Alzheimer’s. is not to have a style, to just be with the song and let the
She said, “I wish your Mom could’ve been around for song be. It was a thrill that people got it, and it’s still the
this.” I’m so glad my aunt got to be part of it. I got to ask biggest gift. Sometimes you connect, and sometimes you
her questions and talk with her about the music, before don’t. But when you are really there with the song, with
she started to get worse. the band, with the audience, you are blessed.
Neurologic Function
when I stick my toe in, I feel the whole lake. sense of knowing and familiarity,”
For me, that is essential. We’re afraid to feel says Concetta Tomaino, D.A.,
the grief, but it is essential. A friend told me a MT-BC, LCAT (right), the executive
while back that while she was going through director of the Institute for Music and
a very difficult period, her friend told her, just Neurologic Function (IMNF). Music
go cry as much as you can, then call me right with harmonious melodies, or with
back. So she just let loose and bawled for 20 slow rhythms, can have that effect as well, even if it is unfamiliar.”
minutes, and that was all she had in her. Then Relying on their expertise in programming music designed to
she called back. I think the body is made to improve the quality of a patient’s life, IMNF established Well-Tuned:
handle grief if we let it come. Music Players for Health program. The program works simply: The
family member or caregiver of a person with dementia also receives
PYM: We are a nation that is growing a consultation with a trained professional to select music that is
older, broadly speaking, which means appropriate for their loved one. For a small fee (along with the cost
dementia and AD are becoming more of purchased music), patients or caregivers can send their iPods (any
prevalent. As you meet your fans when model) to IMNF for programming. IMNF takes care of downloading
you tour, do you find they, too, have been music to the player, then sends it back to the patient or caregiver.
affected by Alzheimer’s? Well-Tuned emerged from IMNF listening programs. “We met
with the Shelley & Donald Rubin Foundation and with Dan Cohen,
KM: Oh, yes. People really appreciate that director of the Foundation’s Music & Memory project,” Dr. Tomaino
story about my Mom singing, and I share that explains. “Together with Dan we assessed the impact of using digital
frequently in my performances. It’s not an music technology, such as iPods, to easily bring individualized music
uncommon thing. When someone has AD, it’s to nursing facility residents. The outcomes were very positive from
a recognition of their primary relationship that direct care staff as well as some of the project participants. This project
can bring them back however long. I’ve heard has led to the creation of Well-Tuned, a program that can be easily
countless stories of how that has manifested in accessed through our web page, so anybody anywhere in the world can
people’s lives. It’s a lovely thing to me. download suggested song titles or customize a program with our help.”
I did a show a couple of years ago, and a Dr. Tomaino says that there is a powerful connection between music
woman came through the autograph line with and memory, one that can change a person’s mood for the better. “We
her husband and, when they both got to me, she know from research that popular music and songs people enjoyed in
just burst into tears, just fell into my arms. She their teens and twenties are the songs they may find soothing and
just cried on my shoulder for a while, and I just comforting as older adults,” she says. “When someone with dementia is
held her. And after a few minutes of that, she just unable to choose their own favorite songs, it’s best to start by choosing
looked me in the eye and I looked her in the eye, music that was popular when they were young adults, and see which
and we nodded to each other. No words. Her songs they respond to. Another factor to consider when selecting music
husband told me, “She just buried her mother for people with dementia is the personal connection they may have to
this morning. Thank you just for being here.” specific songs—what music did their family play in the home?” That’s
That’s one thing about being with music—it why hymns may make sense for one person with Alzheimer’s, while
opens up something in people that is just beyond jazz might be the right genre for another.
what we can express sometimes. She waited in line To learn more about the Well-Tuned program, visit www.imnf.org,
to have that moment of connection. It was a long then click on “Well-Tuned” in lower right hand corner. Or call
line. And she just needed to be there with me. ■ 1-888-792-2247.
Every 72 seconds, someone in the United States is diagnosed with Alzheimer’s disease. There are
now more than 5 million Americans living with the disease. What is not widely known—even by some
physicians—is that there are products available that are made especially to help make Alzheimer’s
patients’ lives better with the disease, and, in some cases, to help them remain living at home longer
and safer.
The Alzheimer’s Store is dedicated to providing unique products and information for those caring
for someone with Alzheimer’s disease. Every product in the store has been carefully selected to
make living with Alzheimer’s disease as easy as possible. The store also provides a rating system
for products that tells potential buyers whether a particular product is for the early, middle, or late
stages of the disease. For example:
❖ A clock that will automatically remind an Alzheimer’s sufferer of the day and
date. This easy-to-read, battery-operated wall clock displays the day of the
week and date, and automatically changes at midnight.
❖ A telephone that allows the user to push the picture of the person they want
to call. For those who may be a little forgetful or who have difficulty seeing
the numbers, this phone is a blessing.
With over 200 products that address various activities of daily living and caregiver challenges,
the Alzheimer’s Store is dedicated to finding and providing products for people with Alzheimer’s
disease and those caring for them.
E
very morning, residents at CRL
Senior Living Centers awaken
to a continental breakfast of
fresh fruit, homemade muffins and ce-
reals. During the day, they’re treated
to two fruit smoothies and cranberry
martinis—non-alcoholic, of course—
in the afternoon. They savor home-
made soups and fresh vegetables with
meals.
At CRL Senior Living Centers, feed-
ing the residents healthy food is at the
dents also get to select from a few op- residents were eating. “One resident
tions at each meal. “It makes the resi- even thanked me for the food,” Wein-
dents feel as if they have more control berger says. ■
of their lives,” Mills says.
Adding to the experience is the pre- For more information, visit CRL on
sentation of the food. All meals are the Web at www.crlcares.com.
Ingredients
1 tsp. salt substitute
1 lb. whole wheat linguine
1/3 c. extra virgin olive oil
4 garlic cloves, 2 minced and 2 thinly sliced
4 c. fresh spinach, stems removed
1/3 c. fresh chopped flat leaf parsley
Zest of 1 lemon
Directions
1. Bring a large pot of water to a boil, add salt substitute and pasta. Return to a boil and cook 10 min. or until
al dente. Drain.
2. Meanwhile, heat oil in a large skillet over medium-low heat until hot. Add garlic, spinach and 1/2 of the
parsley, stirring constantly for 3 min. Remove from heat.
3. Add pasta and toss until well coated. Transfer to bowl and sprinkle with zest and parsley. Serve.
Directions
Process all ingredients for approximately
30 seconds.
Directions
Process all ingredients for approximately 30 seconds.
Slipping away,
You’re slipping away.
Not all at once
But little
By little,
Like blurred images
Of impressionistic art,
Or forgotten words
To a once loved song.
The cadence of your voice is true.
But clarity has been replaced
By confusion.
Alertness overpowered
By disconnections.
Wit and humor
Out of your cerebral reach,
You laugh the right laugh
At the wrong places.
Slipping away.
You’re slipping away.
I already begin to mourn you.
I awoke with screaming and hollering abounding around the clock bounding across the room, my head fell into the mess;
house; the old man was at it again. “Where the heck is my my rear was poised in the air. Grandpa looked at me and
finger?” warbled Grandpa. I knew he was heading this way, said, “Well, I know it’s not up there. So where the heck did
and I scrambled out of bed, desperately searching for some- you put it?” As I arose and gained my composure, I knew
thing to cover myself up with. Grandpa burst through my today was going to be another forlorn journey into the world
door startling me; one of my legs was halfway into my pants. that the old war horse scarcely remembered. We were going
There I was hopping on one foot, trying so very hard to stay to travel through the gates of time and into the past to help
upright, when his fear-filled eyes looked right at me and he grandpa find his finger.
yelled, “Tommy, did you take my finger?” At that moment I ushered the now frail-looking man out of my room, and
the law of gravity met Murphy’s Law, and I fell over. Crash- we walked the long hallway down to the living room. Mom
ing into my nightstand, spilling my water and sending my had already set out the scrapbooks filled with newspaper
26 Preserving Your Memory winter 2009
clippings, letters from military commanders, pictures, and Dear Joe,
just about seven pounds of medals that Grandpa had been They tell me that this will do us both good in years
awarded in his dignified walk through hell. Hell it was, for to come. Right now as you read this I am sure that you
Grandpa was a hero in every respect of the word. He was are lost, upset and feeling very angry. I know, because
shot in two different battles, but he recovered and returned that is exactly how I feel right now as I write this. I am
to his post each time, earning purple hearts and bronze stars sure you are wondering what happened to that finger on
for his bravery. His last battle, in which he lost his finger, your hand, and I am going to tell you. You lost that fin-
was his most memorable—he not only saved his squad, but ger saving the lives of over 120 men and as much as you
an entire company of soldiers. will argue with me, you are a hero. Our squad, our entire
As I opened one book, a picture fell out. The old man company had become trapped between two fighting tank
picked it up and said, “That’s Chester” and told me about divisions; we were stuck with our backs to a fuel depot
Charlie Nestor. It seems that Charles didn’t fit him, nor and were desperately trying to fight our way backward
did Charlie or Chuck, so the men gave him a new name— and into the woods. A stray anti-tank rocket came in to-
Chester. I opened the book to the first page. It was a clip- ward us and headed right for a full tank of diesel. You
ping from the local newspaper, with the headline “Outrage” reached up and swatted at the round with your hand. Its
and the story about the Japanese bombing of Pearl Harbor sheer momentum picked you up and flung you hard into
on Dec. 7, 1941. “Those jerks really hit us hard that day,” the side of the tank. The rocket veered off and hit the
Grandpa said. He looked us down at his hand and I reas- empty shell of a building, taking your finger with it. You
sured him we would be finding his finger soon. hit the tank so hard it cracked your skull open and you
The next page was a letter from his commanding officer. broke several ribs. That was 12 years ago from the day as I
Staff Sergeant Joseph Jennings, my grandpa, had been in- write this. I am sitting here in the VA hospital and they’re
jured but would recover. It went on to tell of how he’d been testing me for memory issues; you see, I forgot the way
wounded in battle and how his heroic return to his post, home last week and my doctor is worried. I tell you right
manning his guns while wounded, had saved his squad. now I am worried but I think things will be fine. They
Grandpa just looked at the scar on his leg from that day. wanted me to write this so in the years to come you would
As we continued leafing through the scrapbook, we passed have something to explain the unknown. But I doubt it
stories of victory and defeat for our armed forces during will be needed. Keep a stiff upper lip.
World War II. Grandpa would interject from time to time
about how he recalled hearing the voices of men around him, Joe
but he could no longer remember what they looked like. He
enjoyed looking at the pictures; it helped him “remember Grandpa looked at his finger and asked me how many
the ones who should be remembered,” as he’d say. Again times he had read the letter, or heard the letter being read.
he looked at his hand, where his finger should be, this time Mom told him it had been read to him at least once a week
remembering something about it. “The war took this from for the past 29 years and that he had never read it himself.
me,” he said. I acknowledged that fact and turned the page. He slowly rose and announced that he was going to lie down.
We journeyed on and came across an article about one of Mom poured me some orange juice and looked very wor-
his squad members, Johnny Rumbas. They called him “No ried. “He’s never responded that way before,” she said. She
Toes.” Grandpa told me how he had lost the toes on his right explained that hearing the letter being read always cheered
foot: He stood near the path of a tank as it rolled by, tearing him up and brought him back to reality.
his toes from his foot. “Ha ha ha,” Grandpa burbled. “The The rest of the day was uneventful, and soon nightfall ar-
feckless dolt!” rived. I slept soundly that night.
Mom came in and gave Grandpa his morning meds, along But I awoke to screaming and yelling again the follow-
with some hot Earl Grey tea. Grandpa would drink the stuff ing morning. At first I thought it was Grandpa, looking for
by the gallon if he were left alone with it. his lost finger. But not this time. I ran out of my room to
We returned to the book, and as we turned the page we find Mom on the kitchen floor, sobbing. I went to check on
found another letter. “Open and read often,” it instructed, Grandpa and found him—sitting in his chair, a peaceful
and Grandpa looked down at his hand again. I asked him smile on his lips, with the letter in his lap. He had finally
if he wanted to read it, or if I could read it for him. He put read the letter for himself, and at that found his peace.
his face in his hands and asked me to read it. I opened the The old warhorse was laid to rest three days later in
dried yellow paper, hearing the crackle of age and noticing Arlington National Cemetery with full military honors. He
the acrid, moldy smell. I looked over at Grandpa, held the rests forever now, finally finding peace under the watch of
letter up and began: his honor guard. ■
winter 2009 www.ALZinfo.org 27
Ask the Experts Do you have a question you would like to ask the experts at the
Fisher Center for Alzheimer’s Research Foundation? If so, please call
1-800-ALZINFO, visit ALZinfo.org or send surface mail to Fisher Center
for Alzheimer’s Research Foundation, West 46th Street & 12th Avenue,
New York, NY 10036, or e-mail info@alzinfo.org.
Fitting in Fitness
Making time for physical activity shouldn’t be a last consideration—especially for caregivers. Put fitness
at the top of your list.
I
t’s all too familiar. You are stressed
and tired, and find there aren’t
enough hours in the day to do all that
needs to be done. Taking care of a loved
one can be hard on the mind, body and
spirit, and unless the caregiver takes care
of important personal needs, detrimen-
tal to those under one’s care.
Symptoms of caregiver stress include:
• Denial
• Anger
• Social withdrawal
• Anxiety
• Depression
• Exhaustion
• Sleeplessness
• Irritability Regular exercise benefits health in many important ways, including
• Lack of concentration improved mood and attitude.
• Other health problems
cising three times per week to maintain for all the major muscle groups.
Peter Schroeder, author of Reverse- a healthy level of fitness. The council Experts say weight-bearing exercise
Parenting: How to Survive Caring for suggests the following guidelines based helps bones stay strong and can prevent
Your Aging Parents, says caregiver stress on your goals: bone loss. Robyn Stuhr, an exercise
is often caused by denial of the situa- • Warm-up: A 5- to 10-minute physiologist, suggests these weight-
tion, over-scheduling of everyone involved session of walking, jogging, knee bearing exercises:
and physical neglect of oneself. One lifts, arm circles or trunk rotations • Brisk walking
of the best ways to relieve that stress is before exercise, and a 5- to • Walking a hilly course
through exercise. 10-minute cool down with slow • Running
“Exercise is one of the basic compo- walking or stretching afterward. • Aerobic exercise classes
nents of good health, which minimizes • Muscle strength: A minimum of • Various forms of dance and some
the likelihood of excessive stress. The two 20-minute sessions per week calisthenics
way exercise works best, and most suc- that include exercises for all the
cessfully, is to have a regularly sched- major muscle groups, such as light Stuhr says weight training/strength
uled time, and a variety of ways to exer- weight lifting. training also promotes bone growth in
cise,” says Schroeder, who cares for his • Muscle endurance: At least three the specific bones involved in the ex-
elderly father. 30-minute sessions each week that ercise.
The President’s Council on Physical include calisthenics, pushups, sit- “Muscles are attached to bone and
Fitness and Sports recommends exer- ups, pull-ups and weight training every time a muscle contracts, it pulls
W
hatever your opinion on emerges from Congress will significant- patient was hospitalized for 3 days during
health care reform, the very ly change this reality. Seniors work hard the 30-day period preceding the nursing
public conversation now dom- their entire lives to accumulate a mod- home admission. In addition, Medicare
inating headlines is momentous. For all est nest egg. However, if they become will pay only for the first 20 days in full.
citizens, but especially for seniors and indi- ill they may be forced to spend all their After that (days 21–100), a copayment
viduals with special needs, access to qual- assets, including selling their home, to of $133.50 is required. Thus, a person
ity medical services is essential. It’s impor- pay for the cost of their long-term care. who has long-term care needs due to
tant that our national dialogue is giving Alzheimer’s disease or other chronic ill-
this central issue the attention it deserves. Limitations of Medicare nesses will soon discover that Medicare
As many of us know, we must plan and Medicaid benefits are very limited. Medicare is
for the possibility that a long life will Long-term care insurance provides a simply not a viable alternative for those
be accompanied by serious health chal- valuable planning alternative and should in need of long-term care.
lenges, including the need for either in- be considered as part of an overall estate Medicaid is the only government
home care or long-term residence in an plan. However, many seniors cannot program that pays for long-term nurs-
assisted living facility or a nursing home. afford long-term care insurance or are ing home costs for seniors. However,
Although we overwhelmingly prefer to not insurable due to various infirmities, unlike Medicare, Medicaid is a means-
age in place—at home—a bias still ex- such as Alzheimer’s disease. tested program. There are strict income
ists in our health care system in favor Some are interested in qualifying for and asset guidelines that must be met
of institutional solutions. The desire to Medicaid to pay for their long-term care. in order to become eligible for benefits.
keep beloved family members at home Many confuse Medicare and Medicaid Medicaid is a state program funded in part
currently demands tremendous finan- since the names are so similar; however, by the federal government. Each state has
cial sacrifice. the programs are very different. Medi- its own Medicaid rules and regulations,
care is the federal insurance program so there are 51 Medicaid programs (in-
Where We Stand Now covering those 65 and older and certain cluding the District of Columbia). If you
Long-term health care costs are sky- persons with disabilities. Medicare pays are considering applying for Medicaid to
rocketing out of control. Nationwide, for a very limited amount of nursing cover the costs of your long-term care, it
the average annual nursing home costs home care and does so only if the patient is critical that you become familiar with
are approximately $90,000. In many is receiving skilled nursing care. Skilled these rules and regulations, along with
metropolitan areas, these annual costs nursing care is a legal term of art which the policies and procedures of your local
can exceed $200,000. In-home care and generally means you are receiving certain Medicaid authorities.
assisted-living care are also very expen- types of treatment, such as a stroke victim
sive. receiving physical or occupational therapy. Legal Complexities
Many families are concerned about It does not include help with activities Long-term care planning has always
how they would finance the cost of of daily living, such as eating, grooming been a complex area of the law, and it has
long-term care if a loved one became ill. and getting in and out of bed. become even more complex over the past
Unfortunately, our country has no health If you are fortunate enough to qualify, couple of years as new laws and regula-
insurance system for long-term care. It Medicare will pay for up to 100 days of tions have taken effect across the country.
is uncertain whether the final bill that skilled nursing care, provided that the Generally, individuals become eligible for
Medicaid assistance once their assets are There are rules in place that are de- Although the rules are complex, plan-
below a certain level—approximately signed to limit asset transfers by seniors ning opportunities remain to protect
$2,000–$4,000, although some states to children and other persons. Transfers your assets. Certain assets such as the
allow slightly higher levels. There are, of assets or income made within 5 years home and retirement accounts receive
however, special protections for married of applying for nursing home Medicaid special treatment in many states. The
couples, so that the spouse living at home will be assessed a penalty period, which earlier you plan ahead, the more assets
(the community spouse) has sufficient will not start until the Medicaid appli- that can be protected for you and your
funds to meet his or her needs. Gener- cant is out of funds, is otherwise eligible family. Although the process might in-
ally speaking, the community spouse is for Medicaid and applies for assistance. volve a significant amount of time and
entitled to keep non-exempt assets of up These rules could potentially cover gifts effort, and force you to confront some
to $109,560 (in many states this figure is to grandchildren to help pay for their difficult issues, you’re worth it. You and
actually much lower). This is called the education or gifts to children to cover your family will be glad you did. ■
Community Spouse Resource Allowance medical expenses. If the grandparent
(CSRA). In addition, the community needs to apply for Medicaid within 5 Bernard A. Krooks, J.D., CPA, LL.M (in
spouse is entitled to monthly income of years of paying for a grandchild’s educa- taxation), CELA is immediate past president
up to $2,739. This is called the Minimum tion or a child’s medical expenses, then and founding member of the N.Y. chapter
Monthly Maintenance Needs Allowance the grandparent may not be eligible for of the National Academy of Elder Law
(MMMNA). These amounts vary de- Medicaid, and there may be no funds Attorneys and a nationally known and
pending on which state we are talking available to pay for the grandparent’s widely quoted expert on elder law. For more
about and may be increased through a care (since they have already been spent information, visit the firm’s website at www.
fair hearing or court order. on the education or medical expenses). littmankrooks.com.
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34 Preserving Your Memory winter 2009
B R A IN - B OOS T I NG CRO S S W O RDS
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winter 2009 www.ALZinfo.org 35
BRAI N - B O O ST IN G PU Z Z L ES
HIDDE N-ME S SAG E WORD- FIND™
Hidden-Message Word-Find
Hidden-Message Word-Find
The names of these charitable organizations can be found in the letter grid reading across, up and down, and diagonally.
When you have found them all, read the leftover letters to discover an apt quote from English author and physician Sir
Thomas Browne.
The names of these charitable organizations can be found in the letter grid reading across, up and down, and diagonally.
When you have found them all, read the leftover letters to discover anYou
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author and physician Sir
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CITY Browne.
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Sudoku
SUDOKU
To complete the puzzle below, fill in the squares so that each digit 1 through 9 appears exactly once in each
Sudoku
row, in each column, and in each enclosed nine-unit block.
To complete the puzzle below, fill in the squares so that each digit 1 through 9 appears exactly once in each
row, in each column, and in each enclosed nine-unit block.
9 2 4 6
4 1 9 6 2 4 6
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Agnes
We are happy to share with you the indomitable Agnes—also
sometimes known as “Wellness Woman”—the delightful cartoon
creation of artist Tony Cochran. Win, lose, or draw, Agnes faces life’s
challenges with spirit, humor, and a never-give-up attitude.
Job#: 071008075 Client#: REDBRD7011 # of Colors: 4c Trim: 7" X 4.625" Bleed: NON Lnscrn: 133
Natassia gives blood to feel Josh is living proof
like she’s making a difference. that she is.
Pub: Various
Donate blood today and change a life, starting with your own.
Call 1-800-GIVE LIFE or visit givelife.org.
H20396
The EmSeeQ is the only nationwide emergency location system, and its protection
is what you need when you can’t be with your loved one. It’s a reliable, secure
solution that is fully integrated with 911, so if your loved one wanders, emergency
responders can quickly recover them.
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