Sep 052014
 

A teacher affects eternity; he can never tell where his influence stops. ~Henry Brooks Adams

We had known for a little more than a month before we decided to let others in on the burden our family had been carrying. On the last day of school before Thanksgiving break, my husband, at age forty-six, stood before his beloved high school students and told them our horrific secret.

We taught at the same high school, so I was able to be with him as his words first began to spill out during homeroom that morning. “I won’t be returning to school after Thanksgiving break, I am taking a medical leave,” he began. “I have an incurable brain disease and I am no longer able to continue in this job I love.” He never spoke the words “Alzheimer’s disease” that day, but he didn’t need to. The students knew what he was talking about.1864451education

It was painful to stand beside him and watch as my husband of more than twenty years spoke to each of his six social studies classes that day. I could see the chins start to quiver and the tears begin to fall. There was a stunned silence. During that first class, after he told the students, a young lady came up and asked him so meekly, “I know you are my teacher, but for today is it okay if I give you a hug?” And thus began the long line of embraces from students. Some clung to their favorite teacher and sobbed—some of the toughest guys gave some of the most emotional hugs that day.

Makeshift cards from students began to appear as the day went on, and alumni began to show up at his door.


Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias is now available for purchase, with all royalties going to the Alzheimer’s Association. Read all the inspiring stories.

One sweet girl said she wanted to help him and offered to wash his chalkboards. We were out of the classroom when she started and when we returned this is what was written on the chalkboard:

We love you! You are the best teacher EVER! We will miss you sooooooooo much and pray for your family. Love, Your Awesome Students

And so began our journey into the uncharted waters of living with Alzheimer’s at age forty-six. The day my sweet husband stood so bravely before his students to explain the onslaught of Alzheimer’s will always be a lasting memory to me of his strength, character, and resolve to do what was best for his students and family. I know he wanted to honor God with his honesty and integrity that day—and he did.

Author: Sandy Morris

From the book Chicken Soup for the Soul: Living With Alzheimer’s & Other Dementias by Amy Newmark and Angela Timashenka Geiger. Copyright 2014 by Chicken Soup for the Soul Publishing, LLC. Published by Chicken Soup for the Soul Publishing, LLC. Chicken Soup for the Soul is a registered trademark of Chicken Soup for the Soul Publishing, LLC. Reprinted by permission. All rights reserved.

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Dec 232013
 

treeI miss Jim so much during Christmas time. I miss our discussions about what to get the kids and our families. I miss sitting next to our tree, looking at the lights and sharing quiet time together. I miss feeling excited, wondering what thoughtful present he placed under the tree. I miss singing songs, watching movies and so much more. Jim still throws out a hum (actually, lots of hums) during Christmas songs, but it isn’t the same. He is here, but he isn’t here.

Ever since I moved out into this great big world on my own, I have sent out cards every December. Except for last year. And the year before. And the two years before that. I haven’t had the energy. I haven’t felt jolly. And what would I put in there? Oh, life is great. We are watching Jim progress with Alzheimer’s and have no idea what our life will be like next year at this time. Merry Christmas.

The holidays are hard for Alzheimer’s families. I know this, yet I try to think that our holiday will be different. Last year, I was talking to a good friend and lamenting that I didn’t know if it would be our last “good” Christmas with Jim and that I needed to make it special. She very sternly replied, “You don’t know what is going to happen. This may be the best Christmas ever and next year may be even better. You need to just enjoy this Christmas.” It turns out, she was right! Last year we had an awesome Christmas. We probably had the best one ever.

I approached this year with similar hopes. But when I left for work on a recent Monday, I asked Jim to put the greenery and lights up on the porch, as he has done for as long as we have been together. While I was in a lunch meeting, Jim called. I heard him crying. “I just can’t do it. I can’t put them up.”  Why? Why did I ask him to do this? Why do we have to decorate our house for Christmas? Why can’t I find the time to do everything? Why? Why? Why?

I told him I was sorry, that I should have never asked him to do it. There really is this very fine line to walk. I have to give Jim tasks to do, yet I must make sure they are tasks he is able to do. Sometimes the “simplest” thing he did just a week ago seems foreign to him. Sometimes I forget he can’t do it. On top of that, Jim is still aware of what he isn’t able to do and it is a very hard pill for him to swallow.

Despite these moments – and the moments I feel the sadness and isolation this disease brings, I am still thankful for many things. I start with being thankful for my children. They are what motivates me, inspires me and keeps me smiling. I am thankful that I have Jim as my husband. He has been the most wonderful man, father and friend. Each day he continues to lead our family by example. He shows us all how to put our big pants on, live each day as it comes and do the best you can. He has no expectations, so he is never disappointed. That is all any of us can ask or hope for, no matter what our situation.

I am also thankful to all of those who donate time, money and energy to finding a cure to this horrible disease that has taken over my life and so many others’ lives. Thank you for being so generous and for believing that one day, we will all feel a sense of accomplishment. We will feel we were part of the solution.

Until that day, we will carry on our traditions for as long as we can. We may start new ones. We may lose a few along the way. But we will do it with each other. I love my family. I am grateful we have so much, when so many are in need. I am grateful it has been such a great year. I am grateful for all I have—and yet I still feel sad.

I miss Jim.

missingjim

About the blog author: Karen Garner is a mother of a 9-year-old son and a 12-year-old daughter.  She works full time and is care partner for her husband, Jim, who is living with younger-onset Alzheimer’s. She shares her journey through her blog, Missing Jim.

 

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Oct 292012
 

I always say, if you’ve met one person with Alzheimer’s—then you’ve met one person with Alzheimer’s. Many people don’t realize how each individual has a unique experience with the disease—unique symptoms, a unique path to diagnosis and unique needs.

November is National Alzheimer’s Disease Awareness Month and National Family Caregiver Month, and as a member of the Alzheimer’s Association National Early-Stage Advisory Group, I’m proud to share my story to help raise awareness of disease and those affected.

A year ago, at age 62, I was working as a third-grade teacher when I noticed I was having problems with balance and gait. As a two-time breast cancer survivor, I went to see my doctor, who suspected the cancer had returned and spread to my brain. You can imagine my shock and devastation when a series of tests revealed I had Alzheimer’s disease.

It took me a long time to come to terms with the diagnosis, but I found solace and support in the Alzheimer’s Association. I decided that while I was still able, I had to “Get real” with the details of my diagnosis and start planning for the future.

Although I retired from teaching, my background in education has been a great benefit in my journey with Alzheimer’s. In my previous job as a principal, I adopted the habit of taking copious notes, writing down conversations I had with parents, students and teachers. Now, I use that same practice to stay on top of my day-to-day activities. I write down everything in a notebook I carry with me: what I did, who I saw, what I said, the names of doctors and books I want to read. I stay active in the field of education by tutoring and working at after-school programs.

My life with Alzheimer’s is somewhat unique because I live alone. To keep myself safe, I have routines—I have a specific place where I keep my keys and I have a process to make sure the stove is turned off every night. Right now, I am still in the early stage of the disease, and very independent.

I’m grateful for the opportunity I have to plan for the future. I know there will come a day when I can no longer care for myself or manage my own finances. My brother-in-law has power of attorney, and I’ve started to visit long-term care facilities in my area.

I’m fortunate to have found a steady source of support in my friend Jean. We taught together for a couple of years before my diagnosis, but I don’t know what I’d do without her now.  She keeps me social by inviting me to everything—and I mean everything! We read books and go to the movies together and discuss them. She sends me notes about things I might find interesting—just this morning, she emailed and told me to read the opinion column on the stimulus plan in our newspaper.  She makes me homemade chicken rice soup and chili. We have tickets to see “Jersey Boys” together later this month. 

In short, she is a beautiful person, inside and out. She nurtures my soul.

This November, I’m thinking of all of those facing Alzheimer’s, going through their own unique experiences with the disease—and of the many caregivers whose love and support is the most valuable gift of all. 

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Janice Pfeilschifter lives in Aberdeen, North Carolina and is a member of the 2012 Alzheimer’s Association National Early-Stage Advisory Group. As an advisor, she hopes to share the perspective that life does not end with a diagnosis of Alzheimer’s disease.

Oct 012012
 

Girls on the Gridiron – Taking the Fight Against Alzheimer’s to the Field

People who work together will win, whether it be against complex football defenses, or the problems of modern society. – Vince Lombardi

 

Blondes vs. Brunettes® creator, Sara Allen Abbott (second from right) at the Washington, D.C. game

It is officially fall and fall means football season – fans, cheerleaders, Friday night lights, afternoon tailgaters, Monday Night Football.  When we think of football – we think of the gladiators of the gridiron.  However, one of the best football games this season is being played by women across the country – and they are playing to win the battle against Alzheimer’s disease.

Two Sisters, One Dad and a Diagnosis of Alzheimer’s

Sara Allen Abbott and her sister, Kate Allen Stukenberg, are two beautiful brunettes born and bred in Texas.  Their love of football is both geographically influenced (what Texan doesn’t love football?) but also a family affair.  Their mother started the Powder Puff football game at the girls’ high school that helped raise funds for an after-prom program.  Their father, Joe, had always been a football fan cheering on his favorite team, the Houston Oilers and taking both daughters to games at the Astrodome from a young age.  Both sisters also recall fond memories of how their dad indoctrinated his daughters into “game day” by taking his girls to University of Texas games to cheer on the Longhorns, where both women are now alumnae.

Sara on her wedding day with her dad Joe who had already been diagnosed with Alzheimer’s disease.

In 2005, Sara and Kate’s dad was diagnosed with younger-onset Alzheimer’s disease.  He was only 63 years old, although Kate remembers that there were small signs of the disease several years earlier.

The Alzheimer’s Association estimates that more than 5 million Americans are diagnosed with Alzheimer’s disease today – in fact, every 68 seconds someone develops this disease.  What is perhaps a larger concern is that studies also show that 50 percent of those living with Alzheimer’s are undiagnosed.   The Alzheimer’s Association believes that early detection of Alzheimer’s disease can help families plan ahead for what can be a long caregiving journey.  They know that families, like the Allens, can be impacted emotionally and financially, so they have created an education campaign focused on early detection titled “Know  the 10 Signs: Early Detection Matters.”  

 And, although it was Sara and Kate’s dad who developed the disease, The Shriver Report:  A Woman’s Nation Takes on Alzheimer’s released last year from the Alzheimer’s Association shows that 10 million American women are touched by Alzheimer’s disease and other dementias.  Of the more than 5 million Americans diagnosed with Alzheimer’s disease, two-thirds are women.  In addition, 6.7 million women represent 60 percent of the family caregivers of those living with the disease.

After his diagnosis, Kate moved back to Texas from New York City and did not work for eight months so she could just hang out with her dad.  She feels this period of her life truly taught her about patience.  Although he was physically in good shape, Kate felt so much of him was missing – although she said “the core of him was still there.”

She told me, “People need to understand that being a caregiver doesn’t necessarily mean you’re changing diapers or feeding someone.  It can just be sharing time and for someone with Alzheimer’s, maybe listening to a story they feel they’re telling for the first time but you’ve heard quite a few times already.”

During this period, Sara was living in Washington, D.C. and felt the typical helplessness of being a long-distance caregiver, something that 8 million Americans are doing today.  At one point she said she was thinking of moving home but her dad said, “You can come back, but you being here is not going to cure me.  Stay in Washington and do your best.”

It was that conversation that she believes inspired her to do something to fight Alzheimer’s disease.

Blondes v. Brunettes® – Let the Games Begin

Kate Allen Stukenberg (second from right) brings Blondes vs. Brunettes® to Houston.

The age-old hair color competition (blonde or brunette?) helped fuel Sara’s idea to raise funds for the Alzheimer’s Association through a very non-traditional event.  In 2005, Sara approached the Alzheimer’s Association with the idea of tackling Alzheimer’s in a new venue – on the football field with all female players.  The first flag football game, Blondes vs. Brunettes®, was played in Washington, D.C. and a winning event was born.

It took Sara’s sister, Kate, only six months to take a page out of Sara’s playbook and host her own Blondes vs. Brunettes® game in her Houston community.  In its seven-year history, the Blondes vs Brunettes® games have raised over $3 million for Alzheimer’s research and programs.  The events now span from coast-to-coast, with more than 25 cities set to host a game in 2013. To find local events this fall, visit the Alzheimer’s Association Website (www.alz.org).

And, to prove they are democratic, Sara and Kate have invited men to serve as coaches, umpires, announcers and even cheerleaders.

Caregiving Game Changers

When I asked the sisters about their motivation for starting their fabulous female football games, Sara said, “There were three reasons.  First, my dad and I had a great love of football and wonderful memories attending games together.  Second, the fitness aspects promote health and wellness and are another way to ‘maintain your brain.’  Third, we knew in order to be successful it needed to be fun and football is a game you can enjoy on the field or from the sidelines.”

Kate believes you don’t have to love football to love the game, “I still have NO idea what a flag means.  I understand touchdowns but that’s about it.  I definitely know how to enjoy the social aspects of the game.  When Sara started it in D.C., I said ‘We have to do this in Texas.’”

When I asked the sisters what they felt their dad would say about their fund-raising and awareness-raising success, they both replied he would be proud but then they shine the spotlight back on their beloved dad.

Sara said, “He was constantly telling us we could and would do amazing things.”

Kate replied that she runs into people all the time who tell her how much he wanted to help people, what a character he was and what a difference he made.

Now it’s the sisters making a difference.  And, what a beautiful legacy of their dad that his girls are doing “amazing things” by honoring his love for the game.

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About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

 

 

Sep 052012
 
K_Murray_headshot

I was diagnosed with younger-onset Alzheimer’s disease in 2009 at the age of 56. Prior to my diagnosis, I was the senior vice president of operations for M&T Bank, overseeing hundreds of employees across the Maryland and Delaware regions.

I still run into those people — former employees or co-workers — at the grocery store or out at restaurants. I remember faces, but not always their names. Often, I notice that people make eye contact with me and then turn around the corner rather than say hello. Maybe they are just uncomfortable. Maybe they don’t know what to say.

There are times when my husband, Robert, and I are out and friends will ask him, “How is Kathy doing?” He will say to the person “Let’s go talk with her.” Most individuals don’t know what to say and it may be easier for them to avoid me.

I want people to know the truth about Alzheimer’s disease. That it’s not a mental disorder or “just a little memory loss.” It’s the most common form of dementia. And it’s a progressive disease.

I speak up and tell people about my diagnosis and take as much time as I need to educate them. I want them to have a better understanding of Alzheimer’s. I want them to know there is much more to the disease than the late stage. Someone with Alzheimer’s doesn’t have to be in a wheelchair or lying in a hospital bed; they can be like me, still able to travel and live life to the fullest. Maybe they are not at the top of their game, but they have found ways to adapt. Like me, someone with Alzheimer’s can still be functional and independent. I still have so much to contribute.

It’s not always easy to speak up about Alzheimer’s. Even now, several years after my diagnosis, it can be very difficult for me. 

Last week was Robert’s birthday. He received a card from friends that read something like, “At your age, we knew you wouldn’t remember we sent the same card last year!” Robert and I just sat and looked at each other.

Kathy Murray is living with Alzheimer's disease.This isn’t an issue about a level of education or intelligence. We’re fighting against popular culture. This is about awareness and education around this particular disease.

Keep talking openly about Alzheimer’s, and little by little, it will get easier. Sometimes you have to put yourself out there, and that’s not easy for everyone. Make sure your friends and family members are educated about the disease. They can speak up on your behalf, too.

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About the Blog Author: Kathy Murray is an alumna of the national Alzheimer’s Association Early-Stage Advisory Group (2011). She lives in Frankford, Del., with her husband, Robert. Kathy and Robert have two sons, Robbie and Bryan, and six grandchildren.

Jul 302012
 
Photo courtesy of Kristine Walsh

Caregiving blogger Sherri Snelling spoke to actors Jill Eikenberry and Michael Tucker about their journey in caring for Jill’s mother who has dementia.  At the heart of their story is family and how “eat, pray, love” may be their new catchphrase when it comes to caregiving. 

What struck me the most when I spoke to Jill Eikenberry and Michael Tucker – her partner in marriage, career and life – was that in all things they are a team.  We even did the interview with the two of them together, at their suggestion, and it gave me a glimpse into how their special bond of support, respect and caring for each other is a recipe for all couples who face a tough caregiving situation.  In fact, their story is about love of family and food and the ingredients needed to keep it all cooking.  Jill and Mike are like salt and pepper shakers – two distinct personalities and characters – but you never pass one without the other.

We all watched them as one of our favorite TV couples in the 80s and 90s in their roles on the Emmy-winning series L.A. Law (what boomer woman can forget the famous Venus Butterfly episode?).  Since then, both Mike and Jill have thrived as solo artists – Mike as an actor and as an acclaimed author, and Jill as a continually sought-after star on stage and screen with her latest turn in the movie, Young Adult.   However, it is when they are performing together – whether it is playing the couple in Broadway’s Love Letters, or caring for Jill’s mother with dementia – that they really are at their best.

 Our House in Umbria

For many years, New York City-based Jill and Mike, have been vacationing with friends – sometimes for weeks, other times for months – in the lovely Italian countryside in the Spoleto Valley of Umbria, Italy.   This is where the couple recharges – the sumptuous food that infuses Mike’s meals, the chilled wine, the warm people, the beauty of the olive trees and the vineyards versus the urban jungle – it is their version of Cinema Paradiso.

It was on one such trip about six years ago that Jill and Mike went from the calm of their Italian reverie into the storm of caregiving.  Jill’s mom, Lora, was 87-years-old at the time and had been living in a Santa Barbara, Calif., assisted living facility for several years with her husband, Ralph.  Although Lora had been hard of hearing for more than 40 years and had been experiencing some memory lapses, she was in pretty good health for an octogenarian.  But Jill had recently grown worried.  Her mom had started having paranoid fantasies according to Ralph and she had survived a fall, which according to the Centers for Disease Control puts 2 million seniors into emergency rooms every year, and Ralph was not in good health.  Just a few days into their latest Italian sojourn, Jill and Mike got the call that Ralph had died.

“All of a sudden I felt so far away,” says Jill.  She had been anxious of leaving her mom before this trip and now the guilt washed over her for not being by her mom’s side.   As the weeks rolled by after Ralph’s funeral, Jill’s daily phone calls to her mom could no longer bridge the 3,000-mile distance.   After a few in-person visits and more falls, it became clear to Jill that her mother needed more care. But, moving her into the assisted living’s dementia care center seemed wrong.  Jill still was not sure Lora was “there yet,” Lora would be isolated from neighbors and friends and as Jill says, “It just wasn’t family.”

While at first Mike felt some resentment as his Umbrian dreams were put on hold and his concerns mounted about the toll this would take on his wife, he said, “Jill’s focus was on her mom but my eye was on Jill.  My new job was to help her do the right thing.”

 Mamma Mia!

One of the toughest decisions for caregivers, especially those 7 to 8 million long-distance caregivers of older parents, is wondering whether it is better to have them live in a special facility that can provide the care they need or move them into your home or closer to you so that you can care for them.

“My mom was calling people at all times of the night, wandering off and eventually it got to a point where she was physically attacking the nurses caring for her after a bad fall,” says Jill.  “One night we went to dinner with our son Max, and he said what I had been in denial about, ‘you have to move Lolo to New York City.’  At that moment I looked over at Mike and he just nodded and I knew this is what we had to do.”

Many caregivers of older parents, even those who are married or who have siblings who can help, often tell me they feel “all alone.”  While Jill is an only child, the secret ingredient in her caregiving situation is that she never had that feeling – she had Mike.

“It was a huge moment in that restaurant when I looked at Mike and I just knew no matter what, he was going on this journey with me,” says Jill.  “Believe me, the last thing Mike wanted to do was have my mother in our lives every minute.  Even though he loved her, Mike felt my personality changed, and not for the better, when I was around my mother.” Now, not only would Mike have Lora in the same city but he would have to live with the “two Jills.”

What came next is something almost all caregivers face because so few families have that essential caregiving conversations before a crisis hits. (In fact, only one-third of all caregivers have had any conversation with their older loved one about long-term care.)   Jill and Mike had to look for the paperwork to close Lora’s bank and other accounts; they had to deal with Lora’s expired passport and driver’s license to get her on the plane to New York.  They also needed to find a memory care facility in New York City, and the list didn’t stop there.  After the move to New York, it eventually became clear that although Lora needed almost constant care, the facility that Jill and Mike found for her was not a good fit.

Caregiving As An Ensemble Show

The solution came when the apartment literally across the hall from Jill and Mike became available and they moved Lora (whom the family calls Lolo) in.  Around the same time both son, Max, and their daughter, Alison, from Mike’s first marriage, found themselves living in New York and helping out with caregiving duties.  Alison, who is a chef and personal caterer, cooks most of Lora’s meals, Max gives his parents some respite by playing companion to his grandmother (when he is not playing drums in his band) and two professional nurses round out the “a la famigla” that Mike had always envisioned as part of their Italian excursions but is actually now playing out in the Big Apple.

Photo courtesy of Kristine Walsh

“We could not have planned it better but going through this experience really brought us together as a family,” says Mike.  Besides the familial ties, Mike believes his gifts from caregiving are that he and Jill have become even closer and that he is now more realistic about his future and how he will want his family to care for him.  Jill told me that she feels caregiving has taught her to “just let things happen and to not be in denial because it doesn’t serve you.”   She also feels it has improved the communication she and Mike have and his support has allowed her to really discover who she was through this experience.

As the “Tuckerberry” family gathered recently for Lora’s 93rd birthday, Jill and Mike have proven successful as both co-stars on screen, in life and in caregiving.  When I think of Jill and Mike, I think of Julia Child’s quote, “…nothing is too much trouble if it turns out the way it should.”

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About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

Jul 032012
 
American Flag

I have faced many battles in my life.  I served in Vietnam as a Marine Corps corporal. I also completed four tours in Iraq in the U.S. Army, and four of my sons served in Iraq, too.  But all my battles have not been while serving in the military.

My mother passed away from Alzheimer’s disease.  I lost my son, Dennis Jr., in a motorcycle accident.  And now, I am facing my own battle with Alzheimer’s disease.

I was preparing for a sixth deployment to Iraq when my Colonel and my wife brought up concerns about changes they were seeing.  I had just received a Secretary Manager of the Year Award, but I was aware that something was wrong.  I had been waking up in the middle of the night realizing there was something I forgot to do — or something I needed to do.  Recognizing my memory was changing, I decided to retire.   Too many people’s lives would be at risk if I went on a last tour in Iraq.

I was diagnosed in 2008 with early-stage Alzheimer’s.  When I received the diagnosis of Alzheimer’s, it was almost a relief.  It provided an explanation for what was going on.  It also provided a path forward.  There were plans I needed to put in place for the future.

I had made my living will before my first trip to Iraq. But after the diagnosis, my wife Mary and I updated our advance directives, power of attorneys and will.

Dennis Henley Sr. with General Franks and son Dennis Henley Jr.

Everything has been documented, so there is no dispute and no questions for my children when this disease progresses.  We dotted all the “I’s” and crossed all the “T’s” to make sure everything is in place. It’s an important thing for anyone who has been diagnosed to do.

It’s also important to realize that a diagnosis isn’t the end of the world.  Truly – it’s not.  You aren’t alone. There are so many people available to help you and so many people committed to finding a cure.  It’s difficult to accept, but easier to do if you are open and honest with those around you.

In fact, I talked until 2 a.m. about my diagnosis with one of my military buddies last week.  I have friends that I went through grade school, high school and the military with, and we have no secrets. We openly talk about this disease.  It’s a source of strength and comfort to have the people around me know what is going on. Alzheimer’s isn’t my fault.  It’s no one’s fault.  And there is no reason to feel guilt over it.  It’s out of my control.

It really helped having an Alzheimer’s Association representative from my local chapter come and explain why things aren’t like they used to be to my family.  I have 11 grandchildren – and they all understand that things aren’t quite the same and the whole family is making adjustments.  But that doesn’t keep us from spending meaningful time together, which is what I plan to do tomorrow on the Fourth of July.

We will all dress in red, white and blue and gather together for a barbeque at my son’s house.  Our flag will be at half mast, and I will remember the battles I have been in and the one I am facing now.  I believe we are here to help others – to leave a legacy.  As I spend time with my family, I know that I have left my mark by raising my family to be good citizens.  And I still have more to give. I will keep on moving forward and not give up.

Dennis Henley is a member of the national Alzheimer’s Association 2012 Early-Stage Advisory Group. He was diagnosed with early-stage Alzheimer’s in 2008. Prior to his retirement, he served in the U.S. military for 26 years, including working in counter intelligence for the Army and as the Chief of Security for the Army Corp of Engineers in Jacksonville, Fla.  Dennis lives in Littlestown, Pa., with his wife, Mary.  

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Mar 092012
 
woman

This post originally appeared on the ChicagoNow blog, “Ask Dr. Chill: Practical Answers to the Toughest Caregiving Questions.” It is being reposted here with the author’s permission.

Almost eight years at the Alzheimer’s Association — five at the Utah Chapter and close to three at the National Office right here in Chicago — left equally enduring imprints on my mind and heart. The mental imprint is analytical, bridging science and people in the shape of a fervent belief that a cure is inevitable.

The imprint on my heart is much different. It’s in the form of my own grandmother, who died of complications from Alzheimer’s disease and vascular dementia at the age of 89. It’s a delicate imprint, and it still hurts sometimes, even though she died more than 20 years ago. I see her face in almost every person I meet who has the disease.

It is because of these imprints that I took great interest in the Alzheimer’s Association’s recent release of its 2012 Alzheimer’s Disease Facts and Figures Report. This compendium of facts is impressive and startling. For a very cool visual summary of the toll that Alzheimer’s disease takes on individuals, caregivers, families, and the health care system, check out this 2-minute video marking the report’s release:

It gave Dr. Chill the chills…and some tears. According to the report, there are more than 15 million caregivers in the United States caring for someone with Alzheimer’s or a related dementia. In 2011, they provided over 17 billion hours of care valued at more than $210 billion.

But here’s the thing that really disturbs me. Caregivers don’t only care for people with Alzheimer’s disease and other dementias. There are caregivers for people with cancer, diabetes, heart disease, lung disease and those who had a stroke among other health complications. Some of you reading this blog may be caring for someone with a developmental or physical disability. Others might be taking care of someone who is simply having trouble maintaining independence due to the normal course of aging.

The numbers in the Alzheimer’s Association’s report are stunning, but they paint just one swath of the caregiver landscape. I started to wonder how much of the landscape remained. Some digging turned up a 2009 report—the most recent I could find that provides general numbers — compiled by the National Alliance for Caregiving and AARP. Caregiving in the US states there are 65.7 million caregivers in the United States caring for someone who is aged, disabled, and/or ill. Now that’s really stunning.

Remember that mental imprint I described? The analytical, more objective one. When I hear these kinds of numbers, my mind turns toward concepts of magnitude, awareness, research, the badly mired health care system, graphs, charts, grant proposals, and yes, cool videos that send shivers down my spine. In other words, I see the big picture.

But if you recall that other, more subjective imprint inside me — the one on my heart — I see a different vision. Try to imagine these massive numbers melting together into an indecipherable glob of hurt. What I see is one caregiver, one that represents the hundreds I’ve known over the years. She is tired, distraught, scared and doesn’t know where to turn for help. She feels incredibly alone. Yet she is not alone. As we’ve learned, she is literally in the company of millions.

It’s a bittersweet reality.

About Guest Blog Author Carrie Steckl, Ph.D.

Carrie Steckl, Ph.D. is a freelance writer specializing in caregiving, psychology, and aging. Her blog, “Ask Dr. Chill,” provides practical answers to the toughest caregiving questions.

 

Feb 242012
 

When Glen Campbell took the stage at the Grammy Awards and accepted his Lifetime Achievement Award, he did so as one of the more than 5 million Americans diagnosed with Alzheimer’s disease.  What is inspiring about the 75-year-old Campbell’s Grammy night appearance is that he has not retired from his love of making music despite his recent diagnosis.  In fact, he is starting his Farewell Tour and is cutting a new album.

Is music one of the keys to a longer, happier life – despite your health issues?

The news about Campbell got me thinking about studies and articles I have read about music therapy.  Although music has been with us since the dawn of time, in the last few decades studies have found that music as a therapeutic tool can increase cognitive function in Alzheimer’s patients, help premature infants gain weight, encourage autistic children to communicate, lead stroke patients to regain speech and mobility, control pain for dental, surgical and orthopedic patients, and manage anxiety and depression for psychiatric patients.

Dr. Oliver Sacks, a renowned neurologist and psychologist at Columbia University Medical Center best known for his 1973 book Awakenings, which became an Academy Award-nominated film starring Robin Williams and Robert De Niro, and who also wrote Musicophilia: Tales of Music and the Brain, testified at the Hearing before the Senate Special Committee on Aging entitled, “Forever Young: Music and Aging,” and issued this statement:

“The power of music is very remarkable… One sees Parkinsonian patients unable to walk, but able to dance perfectly well or patients almost unable to talk, who are able to sing perfectly well… I think that music therapy and music therapists are crucial and indispensable in institutions for elderly people and among neurologically disabled patients.”

The Magic Brain Workout Is Music

Since music is associated with one of the five senses — hearing — which is controlled by the brain it makes sense that we should exercise our brains with music listening to spur cognitive function in the same way we use physical therapy to exercise our limbs, muscles and joints to regain mobility and physical function.

When it comes to Alzheimer’s patients, studies have shown that music reduces agitation or improves behavioral issues such as violent outbursts.  In one pilot program, 45 patients with mid- to late-stage dementia had one hour of personalized music therapy, three times a week, for 10 months, and improved their scores on a cognitive-function test by 50 percent on average. One patient in the study recognized his wife for the first time in months.  Another music therapy study showed that stroke victims can learn to walk and use their hands again.

And, music therapy is not just used with older patients.  When it comes to those children diagnosed on the autism spectrum, music therapy allows these children to develop identification and appropriate expression of their emotions — music becomes the universal language.  Many people with diagnoses on the autism spectrum have innate musical talents so music therapy can give these kids a sense of accomplishment and success.

When I spoke to Holly Robinson Peete, the successful actress, talk show host and singer, about her son R.J. who was diagnosed at age 4 with autism, she said he loves music and he has even recorded a song.  In fact, Holly finds music a great way for her entire family to connect with R.J. and to enter his world.

She told me, “I think music makes him more comfortable — it is a way for R.J. to communicate without being judged.”

Music — Cure for Caregiver Complaints, Too

Music as therapy is not just for your loved one.  We know that caregivers encounter increased stress over caring for a loved one.  Since studies show that listening to music can lead to increased secretion levels of melatonin, a hormone associated with mood regulation, lower aggression, reduced depression and enhanced sleep.  Using music to cope with these common caregiver complaints can be a welcome relief to caregiver burn-out.

How to Use Music in Your Caregiving Plan

Although the 2008 documentary Young @ Heart, showcased a chorus of 80-year-olds singing Beatles, Rolling Stones and Sonic Youth cover songs, most experts agree that with an older loved one it is best to choose music that reminds them of an earlier, happier time in their lives.

  1. Discover the “happy times tunes”:  Talking to your loved one about happy times in their life and understanding the music associations with that time are essential.  Whether it is big band, gospel, rock ‘n’ roll, country, opera or blues, find out what made your loved one happiest.  Most older loved ones, especially Alzheimer’s patients who retain long-term memory as opposed to short-term memory, find tunes from their youth the most joyful but be careful.  Music can also evoke sad memories.  One Holocaust survivor in a pilot program reportedly became very upset upon hearing a Wagner opera which reminded him of that era of his life.
  2. Engage younger generations:  You can help create emotional intimacy when spouses and families share creative music experiences.  Whether it is downloading songs from iTunes, creating a Pandora play list or using the latest technical creation for digital music files, engage your kids in interacting with their grandparent or sibling with special needs to choose their favorite music.
  3. Pick the right setting:  It may not be as simple as turning on a radio.  The radio can be distracting with constant advertising that breaks the peace of music.  Instead, try internet radio like Pandora channels, or use an iPod or CD player.  And, be careful with headphones — some may take comfort in the privacy of headphones while others will become irritated or uncomfortable.   Also, consider live music situations carefully.  For author Gail Sheehy, being able to take her husband, who was suffering from cancer, to a last jazz night out on the town was a gift she will always treasure.  But, for special needs children and some older adults — the unsettling activity of a live concert or band can be frightening.
  4. Let your music play:  As a caregiver music is your therapy as well. Whether it is creating your own playlist to lift your mood when you have a “down day” or just taking pleasure in watching your loved one become engaged, music can make your heart soar.  Celia Pomerantz, author of A Mother’s Daughter’s Journey,  found that her mother, who grew up in Puerto Rico, loved a certain era of salsa music such as Tito Puente.  She created song lists of her mom’s favorite tunes while her mother was in the nursing home.  Celia became enchanted as her mother blossomed into the woman residents called “the dancing queen.”  The joy of music and watching her mother dance lifted Celia’s spirits about her mother’s Alzheimer’s diagnosis.
  5. Find a professional music therapist:  The American Music Therapy Association (AMTA), a non-profit organization that represents over 5,000 music therapists, corporate members and related associations worldwide offers information about music therapy studies and a listing of credentialed music therapists that offer services in institutional, residential and private home settings.

 Music can both evoke and create memories that last forever.  I close with this heartwarming story from the AMTA website:

When a couple danced together for the first time after five years of the husband’s deterioration from probable Alzheimer’s disease, the wife said: “Thank you for helping us dance. It’s the first time in three years that my husband held me in his arms.” Tearfully, she said that she had missed him just holding her and that music therapy had made that possible.

©2012 Sherri Snelling

Learn More:

About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.


Jan 132012
 
Caregiver Mondays

Answer: One Resolution for Caregivers –52 Chances to Make It Work

Ahh the New Year is here – the hectic pace of the holidays is over, the frenzy over buying gifts and seeing  friends and family is done (at least for another 12 months).  You can finally breathe.  That is, unless you are one of the 65 million Americans who are caring for a loved one – that moment to put the world on “pause” and get a break never seems to happen.

When it comes to caring for an older parent, a chronically ill spouse or a child with special needs, we know that caregivers are at risk for adopting bad habits such as smoking or drinking, for not getting enough sleep, for not having the time to eat or exercise right and for not taking enough time to focus on themselves – whether it is a coffee date with a friend, a pedicure, a movie or other things that can bring a smile to our face.

This is why my wish for all caregivers this year is to make a promise to yourself that you can keep.  Make it simple.  Make it just about you.  Here are some tips on how to get there:

3 Steps to Keep That Promise to Yourself

1.       First of all, you need to have an actual plan. If you just have a desire to improve something, it is not enough.   You will be more successful at achieving your goal if you have steps on how to get there.  For instance, it is not about losing weight – it is about the changes you will take to reach that goal.  Breaking a big goal into small increments is a key part of your plan.

2.       In addition, you need to track your progress.  This instills a sense of mini accomplishments on the path to your goal.  It helps to talk to someone who is invested in seeing you be successful.  Having a friend or other support person who can be your “cheerleader” – celebrating your milestones towards the goal can help keep you going.

3.       Lastly, be committed to your goal.   Keep it simple (one resolution is better than two or three) and treat occasional “slips” as temporary setbacks on the path to reaching your goal.  You have to commit to change.   This is a marathon not a sprint.  Be kind to yourself if you have a bad day that makes you reach for the chocolate.  Remember the words of Scarlett O’Hara, “Tomorrow is another day.”  Start fresh the next day after a lapse.

My Answer:  Me Time MondaySM

I had the luck of meeting with a non-profit organization that I thought had a brilliant idea.  It is called Healthy Monday – based on scientific research and the support of prestigious institutions such as Johns Hopkins University, Syracuse University and Columbia University, they have found that starting a new routine on a Monday will make you more successful at whatever you want to achieve.  Essentially the premise is simple – just as the New Year is a time when we resolve to do something, every Monday is an opportunity to renew that promise to ourselves.

Healthy Monday says their research shows that most Americans feel Monday is the day for a fresh start.  It is part of our cultural DNA – Monday is the start of the work week, the school week and we feel renewed energy to start something after a nice weekend respite.

For caregivers, I believe using the Monday point in time to remind you of “what have I done for me lately?” would make sense.  Whether it is 5 minutes or 5 hours – it does not matter.  Check in with yourself every Monday and take time for you.

I was thrilled when Healthy Monday created a specific Caregivers’ Monday campaign.  They are part of a national movement to get our society focused on the value of family caregivers and the need to help caregivers stay healthy themselves.

Fifty-two weeks to reach your goal.  Pick one thing that you would like to accomplish just for you this year.  Check in with yourself every Monday.  And, tell me what your “Me Time” tip is – I will include it in future videos and blogs.  Good luck – 2012 is your year!

Learn More:

About Blog Author Sherri Snelling

Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self care” while caring for a loved one.  She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers.

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