From right to left: Christ Jarot, Diana Law, Rose Law, Rick Law, Hillary Peck, and Kerry Peck

Recently, Kerry Peck of the law firm of Peck Bloom LLC and his wife Hillary invited us to join their table for the Alzheimer’s Association’s Rita Hayworth Chicago fundraising gala.  I am unaccustomed to attending formal black-tie events, but this one was worth the effort.  Princess Yasmin Aga Khan is the gala’s general chair.  Princess Yasmin is the daughter of the 1940s-1950s screen star and pinup girl Rita Hayworth and Prince Aly Khan.

Rita Hayworth was the first “reel life” glamour star to become a “real life” princess.  (Grace Kelly was the second.)  Unfortunately, in 1981 Rita was diagnosed with Alzheimer’s Disease.  In those days very little was known about both the illness and proper caregiving.  Yasmin left her career as an opera singer to become her mother’s conservator and chief caregiver.  Following her mother’s death, Princess Yasmin dedicated herself to honoring her mother’s memory by promoting awareness of Alzheimer’s Disease and fundraising in the hope that one day there will be a cure.  The annual Rita Hayworth galas, which are held in Chicago, New York, and Dallas have raised millions of dollars.

The theme of the event was “The World is a Circus” and featured acrobats, jugglers, and Cirque du Soleil style acts.  For Rose and me, it was a true joy to attend this fundraiser with our great friends Kerry and Hillary, our daughter and son-in-law Diana Law and Chris Jarot, and other friends of the Pecks.

After dinner we danced until 11, when the raffle winners were announced.  Much to my amazement, my wife Rose and my daughter Diana were both “major award winners”! Seriously, there were over 500 people in attendance and only five raffle prizes.  Rose won #4 and Diana won #5.  I feel like a winner, too!  It is my honor to have attended this event the Pecks and their dear friends.  Thank you, Kerry and Hillary!

Please consider joining us in donating to find a cure for Alzheimer’s Disease.

How do you think you would feel if you could not remember a time that your father or mother did not have memory issues?  John Remaly was only nine years old when his dad was diagnosed with Young Onset Alzheimers.   He and his sister Alyssa have grown up adjusting to the gradual loss of their dad’s memory and ability to care for himself.

I spoke to John and his mom, Melinda, and asked them to share with me some of the trials and victories that they have experienced during the last few years.  John told me that in his family, they have worked together to provide a united front to withstand Alzheimers’ attack on their family happiness.  “Most people, when dealing with something like this, start to fight and blame each other.  We have decided to use our gift of humor to find creative ways to work with my dad.”  He went on to share with me that his father, Rick Remaly, has always been a guy who loves the quick one-liner jokes and over-the-top comedy.  He says that the family enjoys shows like Will and Grace, Everybody Loves Raymond, and Family Guy.  John and his sister Alyssa love theater and acting, and they have memorized sketches from the different shows, complete with script, dialogue, jokes, and timing.  This helps keep their father engaged and laughing.  John quickly added, “Dad can still catch ‘quick humor’ and he is very easily amused.  In fact, one evening when he was feeling low, I decided that he and I should have a little fun and put calcium tablets in our mouths.  Do you know what happens when you put calcium tablets in your mouth?  It doesn’t hurt you, but you foam like a rabid dog!  Dad and I could not stop laughing.”

Melinda added that life at home is not always humorous and that John has had to take on the role of being an adult and a caregiver for his father.  She admires the way John works with his father.  Rick seems to take direction better from John than anyone else.  “When you’re dealing with Alzheimers, you need to work together as a family and be open to sharing with loved ones and co-workers.  You need to be truthful in keeping people informed about the real situation at home.”  She went on to say that it’s very important to be able to go out with friends and to have support systems.  In fact, one of the key principles in helping the Remalys stay emotionally healthy is recognizing that from time to time, you have to get away from the caregiving at home.

The Remaly family is about to embark on a new phase of life.  John Remaly has applied to, and been accepted at, Bradley University in Peoria, Illinois.  His dad and mom will be losing one of the pillars that support being able to provide for Rick at home.  John wrote a college admissions essay in October 2009 which detailed his experiences in growing up with Alzheimers.  The entire text is available by clicking on this link: John Remaly’s College Admissions Essay

In both October 2008 and October 2009, Melinda Remaly organized a group to participate in the Alzheimers walk in Libertyville, Illinois called “On the Move for Alzheimers.”  Each year the family, friends, and John’s friends from school walked together to raise funds for Alzheimers research.  All the friends and family members wore t-shirts that said. “Walk for Rick.”  On the back of Mr. Remaly’s  t-shirt it said, “I am Rick.”

We here at Law ElderLaw are grateful that the Remaly family has chosen us to be their legal advocates.

Recently I was sitting down with some very good friends when a cell phone rang.  A look of worry shot across my friend’s brow as he looked at me and apologized, “I’ve got to take this call… my Dad’s missing!  He’s gone wandering…”  I could not help but listen as he spoke to relatives several hundred miles away.  He murmured hopefully, “Maybe they’ll bring Dad to the shelter.”  After saying goodbye he looked at me with pain across his face and said, “Nobody knows where he is.  He’s got Alzheimer’s, and my mom can’t keep him in the house anymore.”  About 30 minutes later he got the call that Dad had been found and everything was okay—this time.  As I sat there, I wondered if my friend knew of some of the resources available to help keep track of vulnerable or wandering loved ones—and it occurred to me that our readers may also be unaware of some of these resources.

One of the reasons that having a wandering relative afflicted with dementia is so frightening is that they don’t act (or react) in the same way that a typical lost person would.  A helpful page at Ask.com explains how wanderers with dementia will not cry out for help or respond to your calls to them, nor will they leave many physical clues to lead you to them.  What a wanderer is likely to do is go to an old place of residence or a favorite location.

Luckily, there are resources out there to help with wandering relatives—so you don’t have to just wait nervously by the phone.  One of these resources is the Medic-Alert Safe-Return program detailed on the Alzheimer’s Association website.  This program provides 24-hour nationwide assistance and supplies members with an individual emblem engraved with the program’s emergency response number.  If you want to try to stop wandering at its source, the Mayo Clinic has a page detailing some of the reasons why elderly relatives may wander, and includes some suggestions on how you might prevent it.  But remember—no matter how much you do, Mom or Dad may still wander.  Don’t blame yourself if it happens!

The best thing to do is be prepared for the occasions when the wandering does happen.  Use the resources provided above, and keep other relatives and caregivers informed.

Most of us have seen angels represented as either winged cherubs or gracefully-robed harp players.  Just before last Christmas, I met a real harp-playing angel named Barbara Fackler.  I was introduced to Barbara because she had been employed by Passages Hospice to provide music for a resident at Aurora Rehabilitation Center.  Frankly, I had never heard of music therapy, so I was eager to understand what Barbara does and how she helps the healing process.

Barbara became involved with therapeutic music accidentally.  She has loved playing the harp since she was a child—she says there was no other instrument that she wanted to play.  Her idea of the perfect harp is a pedal harp, which is a large, heavy, awkward-to-move instrument.  She smiled when she told me that her husband, Dan Fackler, always jokes that she married him only because he was the most careful guy that she had “auditioned” as a harp-transporting boyfriend.

A number of years ago, Barbara decided she needed to acquire a harp small enough to take when visiting relatives out of town.  The first trip the little harp made was to visit her grandfather, whose Alzheimer’s had progressed to the point that he rarely spoke.  However, after Barbara played her harp for him, he went from silence to speaking in short sentences.  Additionally, he became responsive in his interactions with other family members.  It was a stunning discovery.  “There is something magical about acoustic sound.  Scientific research has repeatedly suggested that acoustic music has a more profound effect than recorded music,” Barbara relates.

In addition to her work with hospice patients, Barbara uses her harp as a way to share her gift of music with friends and loved ones who are ill.  She takes her harp with her to the hospital sick room.  “Having a conversation with someone in the hospital can be very exhausting to the patient.  So, I decided to just show up with my harp and play beautiful music.  It is great to just go, play, and provide a human connection that does not require any expectations of an interactive response.”

Barbara has earned respect for her uncanny ability to connect with many seniors and others who suffer from chronic progressive diseases.  One of her clients at Aurora Rehabilitation Center has primary progressive aphasia.  “Aphasia” means the inability to create words or speak.  This particular client cannot recover and often appears confused and unintelligible.  However, following a music session in which Barbara plays the harp for an hour, the client often appears much more capable and articulate for the next few days.

One of Barbara’s current endeavors is teaching the harp to senior citizen students.  She told me that learning to play a new instrument is one of the best ways to create mental stimulation.  She says, “Musicians work between the left and right hemispheres of their brains faster than other people.  In addition, it’s great therapy after a stroke.  If you teach the dominant side of the body to do something, then the less-dominant side can learn to mimic.”  She has seen how learning to play the harp after a stroke allows people to regain more functionality than other types of therapy.

Barbara has just completed a new CD entitled Pleasantries & Diversions.  You can click on this link: www.hornandharp.com to find out how to purchase that CD.  I highly recommend that you consider visiting her website www.harpinstead.com or phoning her at 630-665-6098 to purchase her music and/or engage her services as a harpist.

About a year ago, for reasons I can’t really explain, I wanted to find out what books specifically for children had been written about Alzheimer’s.  It was easy to find a book called What’s Happening to Grandpa? by Maria Shriver.  When I went to Amazon.com to find out more about Maria Shriver’s book, I saw a review that said that “Dr. Ann Frantti wrote a book entitled Grandma’s Cobwebs several years ago on the same topic.  Unfortunately, Dr. Frantti doesn’t have the benefit of Ms. Shriver’s ‘star power’ in terms of getting publicity about Grandma’s Cobwebs, but her book is excellent.”

Once I saw that quote, I was intrigued at the idea of finding this “lost” children’s book, Grandma’s Cobwebs.  The book is out of print but was available through an online used book service.  I bought the book for $135 (don’t tell my wife, Rose).  Once it was in my hands, I wanted to share it with everyone!

With the help of a very artistic and creative team (Shawn Hunt, Angie Moreland, and Catherine Law), the book is now out of hiding for  you to see.  Go to our new website called www.AlzheimersHope.com.  Click on the link and go to the Alzheimer’s Hope home page, and then look directly to the right of the logo to find an icon which reads, “Featured book—Grandma’s Cobwebs, a story for children about Alzheimer’s disease.”  Click on that icon, and you’ll be taken into the world of Ann Frantti when she was caring for her mother Elizabeth and trying to help her daughter Claire deal with Grandma’s ever-growing cobwebs.

Claire’s world gets turn upside down by experiencing her beloved grandmother’s struggle with memory issues.  The term “Grandma’s cobwebs” becomes a way for Claire and her grandmother to name the intrusive memory loss.

The book was written by Ann Frantti, a gifted educator who recently retired as an award-winning principal of an elementary school in New York.  One of the most poignant lines in Grandma’s Cobwebs is this—“It’s like having my mind filled with cobwebs, and sometimes these silly cobwebs make me so mad!”

Please read and enjoy the story.  I trust that you too will be captivated by the storyline, the illustrations, and the fact that this is a true story written by a woman who knows what it’s like to be part of that generation sandwiched between caring for a beloved parent and one’s own children.

At the Marbles store, they love to sell games that are “easy to learn and difficult to master.”  That is the key principle that you can use to boost and/or maintain your brain power.  As we have previously written, we are really excited about a new Chicago-metro store called Marbles.

Marbles store owner Lindsay Gaskins and her team are committed to helping brains age well.  And they have a lot of fun doing it!  Each of the brain games they sell in their store serves a specific purpose and benefits a specific part of the brain.  “The whole concept for the store came out of the idea that there are new developments in science saying that if you exercise your brain you can stave off Alzheimer’s—you can  live better and longer,” says Lindsay.

Since each of the games is available to try in the store, people get very involved in finding out what is their next step toward brain health.  “We get people who will sit and play the games for half an hour or more, and that’s what our intent is.”

So what are some of the best tools to start with?

• Keep Your Brain Alive – this book explains how to create new connections in your brain by doing physically different things than you’re used to.
• Rush Hour – a classic game, Rush Hour is every valet’s worst nightmare: how do you get the red car out of the gridlock moving only a few spaces at a time?
• Tangoes Classic and Tangoes Deluxe – this game, based on the same concept as ancient Chinese tangram puzzles, lets you build pictures using wooden shapes to match those on a set of 45 cards.  You can play as a couple, and have races to see who can build the picture first.  This game was rated “top senior gift” in the Chicago Tribune during the fall of last year.
• 30-Second Mysteries – this is a book full of quick mysteries you can play with the whole family – on a road trip, around the table, or wherever!
• Dakim – at around $2,300, the priciest “toy” in the store is a computer system that works with an individual to improve parts of their brain they might be having trouble with.  It’s geared toward seniors and features music and pictures from the 40s & 50s.  Content updates every night and the system tracks a user’s progress. It’s touch-screen for people who are not as computer savvy.  There is a system available to try at Marbles locations, and the Dakim system also has placements in many senior centers and care facilities.

I asked Lindsay if there was one thing she wanted people to walk away with.  “Get up and do something about your brain health.  Mental stimulation is really important and really fun, and if you get engaged you’ll feel better.  We want people to love their brain as much as they love their body.”

Marbles has two locations with another on the way.  At each location they have weekly events, including game nights and brain aerobics classes.  Scheduled events can be found at www.MarblesTheBrainStore.com.

written by Catherine Law, with Rick Law

Most of us think that the only thing we have to worry about as our brains age is memory loss.  If you ask your doctor, he’ll tell you that there are different aspects to what we think of as memory: critical thinking, cognitive reserve, auditory processing…  it’s enough to make your head spin!  Recently I stopped in at a new store called “Marbles” in the Chicago Loop and talked to owner Lindsay Gaskins, who uses brain games to help us make sense of it all.

“Nutrition and fitness are the two things that get hammered home all the time,” says Lindsay.  “What we really want, from a science standpoint, is mental stimulation.  That’s the third cog in the wheel.  We think Marbles is a place where you can find that third thing.”

The Marbles store grew from the idea that there should be a gym for your brain in the same way there are gyms for your body. The store is divided into five different areas: Memory, Coordination, Visual Perception, Critical Thinking, and Word Skills.  The place is exciting and colorful!  It’s filled with tables of various games, so you can try out different ones and see what you like best.  “[Mental] cross-training is really important,” says Lindsay.  “People have heard “memory,” but they don’t realize they need to be working on other skills too.  Your whole brain is connected.  We try to get people started with something that they like, but then you really need to try something else.” She is convinced that we have to push beyond the comfort zone!

Where the biggest difference lies between this brain gym and a physical gym, is that the brain gym is a whole lot more fun!  Lindsay went on to explain that since all of these tools can be taken home, they also incorporate the social aspect of mental stimulation—which makes it doubly beneficial when working to boost your brainpower.  She said that many of the games are fun and challenging for seniors, but are simple enough that they can be played with the grandkids.  In addition, there’s something for everyone: learning games for children, brain-building software, 3-D puzzles, books, even toys to help with coordination.

While they have gifts and toys for every type of person, what Lindsay wasn’t expecting was the multiple-generational interest they have seen. She thought this was all going to be about the Boomers.  “We weren’t expecting that twenty- to forty-year-olds would enjoy this store.”

Want to know what you could do to improve your brain health?  Lindsay and the team at Marbles will help you find out.  “We have games that work on very specific things people have challenges with; even when they may not be aware of which challenges they have, we can work to assess them.  Of course we’re not doctors, but what we have are interesting tools that have been developed by the scientific community and are now available for people to use at home.”

Marbles can be found online at www.MarblesTheBrainStore.com, or in the Chicagoland area at their Loop and Old Orchard locations.

I highly recommend that you ‘remember’ to visit with them!

This blog is not about strangers lurking in an alley.  Nonetheless, nursing homes are routinely “invaded” in the wee hours and weekends, because they are subject to unannounced night and weekend visits by trained teams of Medicare inspectors.

These snoopy night stalkers show up and  “camp out” in the facility for days.  These teams have full authority to review and audit over 180 different items covering all major aspects of care in a skilled nursing facility.  They inspect the buildings, the medical records, the residents, the cleanliness, the staffing hours per resident, and much, much more.  These investigators are there to find deficiencies, note them, and  report them to the Center of Medicare and Medicaid Services (CMS).  The report is used to provide a rating which is available to the public at the Nursing Home Compare website. 

The website lists each nursing home and assigns a quality rating between 1 and 5 stars.  A 5-star nursing home is heavenly! Unfortunately, a 1-star nursing home is a probably a living hell.

CMS has created this rating system to help seniors and their loved ones see behind the scenes and beyond the nice décor to find a safe and nurturing care facility for a frail senior.
 
The most coveted score is a 5-star Medicare quality rating.  That score is received by only 10% of all skilled nursing home facilities.  There are very few facilities who receive such an award even when they are in the luxury market.  It is even more impressive when a facility which accepts Medicaid residents qualifies as a 5-star-rated Medicare facility.  Recently Tower Hill Healthcare of South Elgin, Illinois announced in their newsletter that they had received a 5-star award.  I was impressed!  Tower Hill is a 206-bed Medicaid-certified skilled care facility with a 31-bed Alzheimer’s wing.

In my next blog, you will be introduced to a 33-year-old orthodox Jewish synagogue cantor and  wedding singer, Jeremy Amster, whose leadership skills have earned the 5-star rating.

You can play a big part in delaying and/or preventing the symptoms of Alzheimer’s Disease!

At a recent Alzheimer’s Association event in Chicago, I was surprised to learn that we can make lifestyle choices that can push back against the effects of Alzheimer’s Disease. Dr. David Bennett of Rush Medical Center reported that based on yearly interviews and later autopsy of participants in the 2,400 person Religious Orders Studies, there are people who have the Alzheimer’s Disease cerebral plaques and tangles but do not experience AD dementia, and/or have a delayed rate of decline.

Read on to see how you can choose to model these people.
 
When the Rush investigative team examined the data, it was clear that the best lifestyle models are those individuals who remain active in the areas of physical fitness and use of their mental capabilities, and have a vibrant social life.  A vibrant social network is defined as having more than seven active and significant relationships (friends, family, and coworkers).

People who remain consistently physically active usually have better brain health.  Those who are committed to exercise experience fewer falls, better balance, less brain shrinkage, and a higher level of independence.  For those of you who do not like to sweat, there is still good news.  Physical exercise does not have to be strenuous or require a major time commitment.  However, substantial physical exercise does mean a commitment to the regularity of the activity.

If you combine regular physical activity such as walking with mental activity such as Sudoku, and have an active social interaction such as playing cards with your friends or being involved in volunteer activities, then there is a much higher probability for you to successfully push back against Alzheimer’s Disease.  This is good news, in that most of us want to have this type of a lifestyle—we all want to be fit, have wit, and stay “with it.”  Let’s all get off the couch and go for a walk… or maybe a little hula-hooping!

Last weekend I was blessed to attend the Chicago preview showing of the HBO special documentary entitled “The Alzheimer’s Project.”  This is an exciting joint project of the Alzheimer’s Association and HBO which is designed to give us all new insight and hope that we can push back against Alzheimer’s Disease (AD).  For those of us in Chicago the documentary was even more personal, in that it included a live interview with Dr. David Bennett of Chicago’s own Rush Alzheimer’s Disease Center.  The medical staff and researchers at Rush Hospital are one of the premier teams investigating Alzheimer’s Disease.  Dr. Bennett is the director of a large group study entitled “The Religious Order Project.”

 “The Alzheimer’s Project” focused on some individuals with early-onset Alzheimer’s, which affects people who are younger than 65. We learned several new and startling things.  Most people are aware that Alzheimer’s Disease is a brain disease wherein brain function is progressively destroyed by the emergence of plaques and tangles. Surprisingly, there are individuals whose  autopsy reveals the presence of the AD plaques and tangles, but the individual did not exhibit memory loss during their lives—some people continue to function in a normal manner.  This phenomenon is not yet understood but is currently being referred to as “cognitive reserve.”  The presence of this cognitive reserve gives researchers a hopeful avenue of new investigation. 

In addition, part of the question-and-answer portion of the program focused on current drug therapies.  Today there is not a drug which cures or delays the disease.  Our current drug therapies are limited to enhancing the remaining brain function during the continuing degenerative progression of the Alzheimer’s Disease.  Dr. Bennett told the audience in Chicago that there are numerous medical research and drug trials going on right now which demonstrate new possibilities to not only delay but possibly create a vaccine against Alzheimer’s Disease. There is a high probability that medical science will have these enhanced weapons available to the public within the next five to ten years.  This is great news of a brighter view of aging for  millions of people who would otherwise face the prospect of AD. 

If you missed this wonderful program, you can watch each of the documentary films individually online, by streaming them to your computer through HBO’s website. I highly recommend that you click here to see all of the resources that you can download and stream from the HBO program entitled “The Alzheimer’s Project.”