alzheimer’s » Alzheimer's Association

Alzheimer’s Is One of My Greatest Battles

Featured Posts, Voices of Alzheimer's 8 Responses »

Jul 032012

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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Can Caregiving Make You Happy?

Caregiving, Featured Posts 37 Responses »

Jun 152012

Whether your musical tastes run to the 70s television show with the Partridge family singing their theme song, C’mon Get Happy, or the 1950s song that inspired it, Get Happy, made famous by Judy Garland, the message is that happiness is in our hands — not something we are handed.

When it comes to caring for a loved one, happiness may not be the first emotion that you would associate with a life role that many find overwhelming, frustrating, exhausting and time-consuming. Yet, as I researched more about happiness and how we go about creating the happy factor in our lives, it was apparent that many of the activities associated with caregiving are actually the principles that experts say will make us happier in our lives.

Following are five principles identified by Dr. Ian K. Smith in his book, Happy — Simple Steps to Get the Most Out of Life. I have taken his principles and added my own caregiving take on these tenets along with some tips on enhancing each of these ideas to create the maximum happiness along your caregiving journey.

1. Be kind, do something nice for someone, volunteer
According to the National Alliance for Caregiving, 75 percent of caregivers feel they had no choice to become a caregiver, the need was there and they were the one to fill the role. Even if you felt you had no choice, you have volunteered for one of life’s most important roles — caring for a loved one. This is one of the kindest, nicest gifts you can give another person. You are paying it forward for your own care later in life.

My tip: Be kind to yourself just like you are kind and caring to your loved one. Take the time to write yourself a thank-you letter for everything you do — the patience, the time, the love you are providing. Take this letter out and read it on days when you feel down or like you cannot go on. Congratulate yourself for the wonderful gift of caring — and the gift of volunteering — that you are giving.

2. Strengthen and deepen personal relationships
We know from numerous studies that isolation is bad for our older loved ones — it impacts both their health (such as not eating properly or enough) and their wellness (sometimes leading to depression). By spending quality time with your loved one, you are helping them achieve better happiness. What will take this up one more notch is to talk to them about days gone by. When I would spend time with my grandpa — he loved to talk about his early childhood growing up in Cleveland and riding the wooden roller coaster at Euclid Beach. Nostalgia and legacies are important to our older loved ones and we can learn a lot we may not have known about our family’s history.

The flip side of this happiness principle is carving out time to strengthen your other relationships. What researchers at Harvard University and the University of California at San Diego found is that our friendships actually can improve our happiness quotient. Their study showed that happiness is like a virus that spreads through social networks — your friends’ happiness and even their friends’ happiness can affect (or infect) you. The happiness of a first degree contact friend increases your happiness by 15 percent!

My tip: Increase your happiness factor — carve out time to grab a coffee or go on a walk with a happy friend and feel your spirit uplifted.

3. Develop a spiritual life – practice forgiveness
When we search for deeper meanings in life, believe in a higher power, or just take the time to understand both our own and other’s limitations, we are on the path to more happiness in our lives. Numerous studies have shown that our spirituality increases as we age. Forgiving your loved one for their behaviors — whether it is their crankiness, their obstinance or their constant needs — is hard for caregivers. Take these trying times and forgive your loved one because in the end they are probably afraid and that often changes our personalities. For your sake, find an expert that can give you techniques on how to cope so you can maintain your happiness level.

My tip: It is important that caregivers find experts: geriatric care managers, a therapist or caregiver support groups can all help you find ways to forgive the person you are caring for and forge new ways to cope when you get frustrated. Caregiving support groups can be a terrific resource on techniques on coping.

4. Spend money on someone else
This is a little tricky because sacrificing your own financial future is a concern I have for caregivers. A National Alliance for Caregiving study showed that one-half of all caregivers spend 10 percent of their annual salary on care-related costs. While you do not want to go bankrupt while caring for your loved one, feeling good about paying for something your loved one needs can be very satisfying and puts a deposit into your happiness account.

My tip: Ensure you talk to your financial planner or accountant about your caregiving responsibilities and especially about what you are spending out of your own pocket so they can help you save your nest egg. It may be that some of these costs can be covered under Medicare or Medicaid or you may even be able to qualify for tax credits if your loved one depends solely on you and other criteria you must meet to claim them as a dependent.

5. Be hopeful (the glass half full form of optimism)
The Mayo Clinic actually did a study tracking participants over a 30-year period and found that the optimists had a 19 percent higher chance of still being alive and that they suffered less from depression. Other studies have shown that optimistic people have less chronic stress because they view setbacks as minor incidents that can be overcome. We know chronic stress is the number one factor that causes caregivers to develop chronic illness at twice the rate as the general public according to a study by the Commonwealth Fund.

My tip: One of the characteristics of an optimist is the power of their smile — remember how good you feel when someone smiles at you? You inevitably smile back and for a few seconds all seems right with the world. Even though you may be blue or having one of those days — try smiling. It is hard to be mad or sad when you have a smile on your face. Sonja Lyubomirsky, a researcher at the University of California at Riverside and who has long studied the health impacts of smiling, finds that people tend to mirror each other. Smiling is truly infectious — it catches on faster than the flu. You will be amazed how happy you are when you just smile.

Charles Schultz, cartoonist and creator of the Peanuts comic strip said “Happiness is a warm puppy and a side of French fries.” I am smiling as I write this (because I agree with him) and I hope you are smiling as you read it. Caregiving can be many things and maybe it can even make you happier.

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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.

Why Aren’t You Researching Coconut Oil or [Insert Other Substance Here]?

Current Studies, Featured Posts 3 Responses »

Jun 112012

My recent blog entry “Can Coconut Oil Treat Alzheimer’s?” generated a lot of comments with the same question: “Why isn’t the Alzheimer’s Association researching coconut oil?” It’s an excellent question and one I get often about coconut oil and other substances that have been rumored to help people with Alzheimer’s.

At first glance, the answer is simple: we’ve received few, if any proposals specifically studying coconut oil. However, we have received a little over half a dozen proposals on studies that look at substances derived from coconut oil such as ketones. Most recently, we funded a study in 2010 by David Morgan, Ph.D. from the University of South Florida. Find a summary of his study here: Ketogenesis and Alzheimer Pathology.

In addition, I encourage readers to check out the section of our web site that discusses a research study on Caprylic Acid and Coconut Oil. This substance derived from coconut oil looked promising in early studies but the makers of the supplement opted to stop researching it prior to phase three trials that would have tested effectiveness. We were disappointed they didn’t continue the study.

At the Alzheimer’s Association, we fund mainly studies by new investigators, which helps us encourage the next generation of Alzheimer’s researchers and introduce fresh ideas to the field.

Every year, we receive grant applications through an online proposal process from hundreds of researchers from around the world. Those proposals are then peer reviewed by a panel of three to four volunteer Alzheimer’s research experts and they are scored and ranked. Finally, they are sent to the Alzheimer’s Association Medical and Scientific Advisory Council (MSAC), a group of nationally and internationally recognized Alzheimer’s experts. The MSAC is tasked with ensuring fairness and equity in the peer review process and making recommendations for funding to the Alzheimer’s Association.

Basically, our research dollars go to the research proposals that have the most merit – no matter what the institution or country of origin, we simply want to fund the best designed studies that will get us closer to better treatments, early detection or prevention.

However, while we are the largest private nonprofit funder of Alzheimer’s research, even we cannot fund all of the studies that should be funded. For example, out of the hundreds of research proposals we received in 2011, about 22 percent were found to have merit; but we only had the resources to fund about the top 9 percent. Those studies that don’t get funding from us may find funding elsewhere, or re-apply next year – but in some cases, they fall to the wayside. It’s frustrating to know that the answers may be out there, right within reach but the research funding simply doesn’t exist.

We are working hard on several pieces of legislation right now that will help ensure the future of Alzheimer’s research, including the Breakthrough Act and the HOPE for Alzheimer’s Act. We’re already seeing our work on the National Alzheimer’s Project Act starting to benefit the research community and hope that it continues to do so.

About the author: Elizabeth Edgerly, Ph.D., is the chief program officer for the Alzheimer’s Association, Northern California and Northern Nevada Chapter. To read more blog posts by Dr. Edgerly, click here.

This post originally appeared on www.alzheimersblog.org.

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Lee’s Story: My Diagnosis of Younger-Onset Alzheimer’s

Diagnosing Alzheimer's, Featured Posts, Voices of Alzheimer's 14 Responses »

Jun 012012

In 2008, at the age of 62, I was diagnosed with younger-onset Alzheimer’s disease (also known as early-onset Alzheimer’s). Not long after, I retired after serving 23 years as the President/CEO of the Private Industry Council (PIC) of San Luis Obispo County. While I thought I was functioning well, there were ample signs a few years before, indicating not all was necessarily right with my health.

Part of me recognized this, while another part of me chalked it up to work overload. In fact, I knew I was having a problem with my own self-confidence — and my 15 employees saw it more clearly, and earlier, than I did; if we are not careful, we tend to forget how intuitive employees truly are. Fortunately, we all came to a point of understanding that I needed help, and the Board of Directors and staff were ready to seek ways to retain me and keep me functioning, while also making sure we were all honest with one another, henceforth.

I was recognizing changes in my own behavior: I was losing my ability to juggle multiple projects. It took more effort to decide which projects had highest priority — and, worst of all, I realized that my self-confidence as an executive was rapidly eroding. I could not find any solutions to turn that around; I didn’t know how to fix it. This was brought home directly, on a couple of business trips (by auto), when I found myself overlooking familiar freeway exits and driving well down the road before realizing I was way off course.

Read Val’s experience as Lee’s care partner.

All of this led my wife and I to visit the Mayo Clinic twice in Scottsdale, Arizona, in 2006 and 2007; we also participated in a battery of testing at U.C. San Francisco. I was finally diagnosed with Early-Onset Alzheimer’s on that visit (also known as Younger-Onset Alzheimer’s), with evidence of “Executive Dysfunction.” Several medical doctors, staff and students participated in that discussion, and they video-taped the discussion. It was an eye-opening experience.

Back home in San Luis Obispo, we also took the time, on two occasions for me to be tested for sleep apnea, in a local lab located in our community. Outcome: “Positive.” Thanks to the technology of this remarkable invention, I now sleep better than I ever have in my life. While I am no expert in this technology, I am convinced there is a direct (negative) relationship between sleep apnea and potential damage to the brain, over time.

Several months later, when this all sunk in, I resigned myself to accept this fate — over which I would have zero control. But, I also have been able to put a face on Alzheimer’s in our local community, by being an advocate and local voice. I have written several “Viewpoints” and “Commentaries” in our local Tribune newspaper. I have formed a close relationship with our local Alzheimer’s Association Chapter Office and its staff, secured a seat on the three-county Chapter Board of Directors, and also accepted an appointment to the Alzheimer’s Association Early-Stage Advisory Group (ESAG) for the 2011-2012 year. This participation, in turn, has opened more new doors with the National Office of the Alzheimer’s Association in very positive ways.

I am well aware there is no known cure for Alzheimer’s. It’s a given, for now, and I refuse to spend much time worrying about it. I prefer to be matter of fact with regard to my diagnosis and I spend more time out in the community and working with the Alzheimer’s office to support them in their work. If there is anything I worry about, it is my family. Family and friends are the best medicine that any of us will have, in a journey such as this one.

Read about Val’s experience as Lee’s care partner.

Blog author Lee Ferrero is a member of the national Alzheimer’s Association 2011 Early-Stage Advisory Group. He is eager to put a face to Alzheimer’s and alert individuals, communities, the media and local organizations about the critical need to act on this disease and help find a cure. Lee lives in Los Osos, California, with his wife, Valerie. Lee and Valerie have two children, Jennifer and Eric. They take great delight in spoiling their grandson, John Ferrero Stout.

Why Berries May Delay Memory Decline

Current Studies, Featured Posts, Risk Factors/ Prevention, Women & Minorities 5 Responses »

May 312012

Berries, they’re not just for breakfast anymore.

In a study published last month in the Annals of Neurology, researchers reported that consumption of berries and flavonoids showed a slower rate of cognitive decline in women aged 70 and older.* Using data from the long-running Nurses’ Health Study of 122,000 registered nurses, the researchers conducted assessments on 16,010 women.

The Nurses Health Study began in 1976. Every four years they were questioned on their eating habits. Between 1995 and 2001, more than 16,000 women aged 70 and older underwent memory testing. The researchers at Brigham Women’s Hospital/Harvard Medical School in Boston and the German Center for Neurodegenerative Diseases in Bonn, Germany found that greater ingestion of blueberries and strawberries correlated with slower rates of cognitive decline for up to 2.5 years. The women who showed the most improvement consumed two or more servings of the berries each week.

Berries contain a particularly high amount of flavonoids called anthocyanidins that are capable of crossing the blood brain barrier and localizing themselves in the hippocampus, an area of the brain known for memory and learning. Investigational drugs and other alternative therapies often fail because they cannot cross the blood brain barrier or reach the hippocampus.

Flavonoids are known to have antioxidant and anti-inflammatory characteristics which can benefit the brain. The study’s authors acknowledge that previous small trials of berry supplementation have shown positive results as well. In some earlier non-related studies inflammation and stress have been shown to contribute to a reduction in brain functioning. Increasing flavonoid consumption might slow these harmful effects, but more study is needed to test this hypothesis.

The authors acknowledge that this was an observational study that relied on accurate dietary reporting from the nurses. In addition they do not know if the results would apply equally to men since all of the people they studied were female. For the future the authors recommend that men be part of the cohort. Finally, they encourage older adults to consume berries as they offer an easy dietary modification that may delay memory decline and will not cause harm.

*Devore, E. E., Kang, J. H., Breteler, M. M. B. and Grodstein, F. (2012), Dietary intakes of berries and flavonoids in relation to cognitive decline. Ann Neurol.. doi: 10.1002/ana.23594

Jeffree Itrich, M.S.W., M.J.
Sr. Clinical Trials Communications & Recruitment Specialist
Alzheimer’s Disease Cooperative Study
University of California San Diego

This post originally appeared in Alzheimer’s Insights, an ADCS Blog.

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Glen Campbell Sings to Congress, Keeps Alzheimer’s in the Public Eye

Advocacy, Featured Posts 51 Responses »

May 232012

Glen Campbell

On Wednesday, May 16, the Alzheimer’s Association hosted “An Evening with Glen Campbell,” an event to raise awareness of Alzheimer’s disease among members of Congress. Held at the Library of Congress, the evening honored country music legend Campbell, who is living with Alzheimer’s disease, and his family.

Actress and philanthropist Jane Seymour welcomed a crowd including members of Congress, staff and their families. Seymour’s husband, James Keach, and his filmmaking partner, Trevor Albert, are making a documentary on Campbell and his family, following their battle with Alzheimer’s disease as Campbell conducts his farewell tour.

The attendees watched a brief film highlighting the state of Alzheimer’s today, revealing statistics from the recently released Alzheimer’s Association 2012 Alzheimer’s Disease Facts and Figures report. The film focuses on the cost of Alzheimer’s to the country, which will total a shocking $200 billion in 2012.

Harry Johns, president and CEO, Alzheimer’s Association, started the program by congratulating the assembled crowd on the release of the National Alzheimer’s Plan the day before.

“The release of the National Alzheimer’s Plan is a huge historic moment for our cause. I want thank of all the members of Congress for their support of the National Alzheimer’s Project Act,” Johns said. “Your leadership has made it possible to have a plan that creates a platform to address Alzheimer’s in America, and we truly appreciate that.”

Johns also talked about the challenge ahead, applauding Campbell and his family for their bravery as they publically face this disease.

“There are 5.4 million people today that have this disease, and because of baby boomers like me, that number is going to grow to 16 million in the next 38 years,” Johns said. “What I want to commend Glen and his family for is announcing his diagnosis and staying in the public eye. It sets a precedent and helps to advance conversation about the cause.”

Congressmen Ed Markey (D-Mass.) and Chris Smith (R-N.J.), longtime co-chairs of the Congressional Task Force on Alzheimer’s Disease, also spoke to the attendees, addressing recent successes in the fight against the disease and looking to the future.

“No coach goes into a big game without a strategy, and now we have a fully integrated plan with public and private stakeholders,” Smith said. “We have worked on this for a long time.”

“These families at home, they are heroes. But heroes need help,” Markey added. “You’ve heard the numbers. We have to give them hope.”

Dr. Ron Petersen, director of the Mayo Alzheimer’s Disease Research Center and a member of the National Advisory Council on Alzheimer’s Disease, gave an update on scientific progress in the field and the ways in which the National Alzheimer’s Plan will help to advance that research.

“Now we have a blueprint, a roadmap, for how we are actually going to get to a cure for this disease,” said Petersen. “The charge is back to us, the charge is back to Congress. I think we’ve done part of the work, but in another sense the work has just begun.”

After Petersen’s remarks, Campbell’s daughter Ashley took to the stage to introduce a sneak preview of the documentary focusing on her father’s farewell tour. She and her brothers, Shannon and Cal, are members of Campbell’s band and travel with him; Campbell’s wife, Kim, is his primary caregiver.

“We decided to go on a farewell tour with him to keep his struggle public,” she said. “We didn’t want people to think they were going through this alone. This isn’t a disease that just affects the person living with it — it affects their entire family.”

After a sneak preview of the documentary, Campbell took to the stage and received a standing ovation. Moving around with the microphone in hand, he was at ease, joking with the crowd and teasing his children. He drew repeated thunderous applause as he displayed his skill with the guitar, performing favorites such as “Galveston,” “Wichita Lineman,” “Rhinestone Cowboy” and “Southern Nights.”

Ashley and her family feel that performing is helping Campbell to face his disease and its symptoms.

“We’ve seen music as a form of therapy on this tour. He seems to be happier, to do better with his memory,” she said. “Happiness is the non-medical medicine.”

Throughout the evening, Campbell reinforced this observation, frequently telling the crowd, “I’m a happy, happy man. Do you want to hear some more?”

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Why I Signed the Petition for a Strong National Alzheimer’s Plan

Advocacy, Voices of Alzheimer's 9 Responses »

Apr 232012

My mother had Alzheimer’s disease, and what it did to her was just terrible. Her mother had it too. A few years ago, my wife, a retired nurse, noticed that I was having short-term memory problems. When I got lost trying to find my way around a familiar hospital campus, we decided that I needed to be medically evaluated. That was in 2010, and I was diagnosed with an “early-stage” memory problem.

A year later, I found out that I carry the ApoE 4 gene, which means I have a genetic risk factor for developing Alzheimer’s disease. This gene was passed down to me from my mother’s side of the family. My doctor informed me that I had mild cognitive impairment, meaning that I was at increased risk for Alzheimer’s. This January, I learned that I had progressed to early-stage Alzheimer’s.

When I was diagnosed, I got very down. But I’m an extremely positive person, and I don’t take “no” for an answer! I said a prayer and asked for help, because I was tired of being negative. I turned things around in one day. I decided that I’ve got Alzheimer’s and it’s got a hell of a fight with me!

I started giving presentations about Alzheimer’s disease. With support from my local chapter, I speak at houses of worship, corporations, community organizations — anywhere that will have me. I do this to raise awareness, and in hopes that there will be a day when Alzheimer’s can be prevented, effectively treated and cured. My kids are in their 40s, and they may have the gene. I do this work for them, and for their kids. I do it for the future.

I will continue to use my voice to fight this disease as long as I can. I will never give up. And I’m hoping you will join me by signing the Alzheimer’s Association Petition for a strong National Alzheimer’s Plan. Right now, I am with hundreds of other advocates at the Alzheimer’s Association Advocacy Forum in Washington, D.C. This week, we will deliver a message to our elected officials that Alzheimer’s can’t wait. You can make that message stronger by adding your name to the petition. To sign, click here.

The more that I’m involved, the more I find that fear is the greatest obstacle to defeating this disease. People don’t want to know how cruel Alzheimer’s is, or what’s coming down the pike if this country doesn’t get a fix on it soon. But together, we can raise awareness and work toward a future where our children and grandchildren don’t have to face this disease.

Today’s guest blog comes from Bill Frost, a member of the Alzheimer’s Association’s^® national 2011 Early-Stage Advisory Group, a council that helps the Association raise awareness of the issues faced by people with Alzheimer’s, advocate for research and support programs and provide the best services possible to people with the disease. Diagnosed with early-stage Alzheimer’s in January 2012, Bill is a retired telecommunications executive and consultant. He and his wife of 51 years, Nancy, live in Houston, Texas. They have three children and one granddaughter.

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Scott Kirschenbaum on Making a Film in an Alzheimer’s Unit

Caregiving 10 Responses »

Mar 292012

In the fall of 2008, I wrote a screenplay I intended to film entirely in an Alzheimer’s Unit. After many weeks of rehearsals, I arrived at a troubling realization: I was not just making a challenging film—I was making the wrong film.

Writing a fictional Alzheimer’s narrative—creating a neat and orderly plot whose course I could control, from a disease by nature chaotic and nonlinear—was impossible. In the way that a son or daughter doesn’t know exactly what to expect during a visit with a parent who has Alzheimer’s, it’s inconceivable (some might even say ridiculous) for a screenwriter to map out the trajectory of a scene in an Alzheimer’s Unit, and expect it to play itself out in a manner remotely resembling what was written.

Other than the loose structure provided by a schedule of daily activities—a parachute toss, the hair salon, an oldies sing-a-long—life in an Alzheimer’s Unit does not follow the logic of the real world. It is founded upon the incidental and accidental; a string of interactions and experiences that digress unpredictably, omnidirectionally, and constantly turn back on themselves. The Alzheimer’s Unit almost never adheres to the continuity of the linear narratives that we enjoy on a daily basis—or that screenplays require.

The first time I visited the Traditions Alzheimer’s Unit in Danville, Calif., I was greeted at the door by Lee Gorewitz, a spry septuagenarian in a baby blue jogging suit. With the exuberance of a cruise director, Lee presented herself as a staff member, took my hand and gave me a tour, during which she delivered a soliloquy unlike anything I had ever heard before: for well over a minute she prattled on about purses, windows and gardens, before she eventually locked eyes with me and said: “I hear the song in my ears, and I think they don’t love me anymore.”

From this spontaneous word-salad came two things that forever altered my film project; I realized Lee was not staff, but a resident. And, I decided, her presence in the Unit was reason enough to throw away that screenplay I’d just written.

For the next six months I visited Lee with the hope of making a documentary that would capture her inner universe: the discord and frustration, the communication breakdown and uninhibited behavior everyone speaks of when they speak of Alzheimer’s—and, the unusually poetic candor it can distill. Reflecting on her birthplace, Lee would say, “Brooklyn, it’s right behind you.” Considering love: “That’s a damn good thing to work with.” Regarding her deceased husband: “How do I even say it? The air — was very good.”

Like many in an Alzheimer’s Unit, for Lee every day is an odyssey: wandering to and fro with no destination in particular, on a quest for something that she can neither articulate nor comprehend. Having advanced Alzheimer’s was once described to me by a neuroscientist as akin to waking up in the middle of hinterland Russia, alone, not knowing a lick of the local language, not knowing how you got there, and being expected to act like it was home.

Due to that constant sense of disorientation, in the span of minutes Lee could morph from pensive thinker, to gregarious helper; from bubbly mover-and-shaker, to morose and sometimes cruel instigator. When in good spirits, she consoled heartbroken women, kissed caregivers and shook a tail feather even after the music had stopped. And with no realistic option for leaving, Lee also gave in to frustration: she argued with her tablemate at lunch, kicked a bouncy ball at a frail man’s legs, and unapologetically told a sickly woman that she is going to die.

My time with Lee, and her struggle, left me utterly confounded. Who should say Lee’s fragmented reality is any less valid than my own?

Composer John Cage once wrote, “The first question I ask myself when something doesn’t seem to be beautiful is why do I think it’s not beautiful. And very shortly you discover that there is no reason.” A shift happened for me when I started to embrace the sublime chaos of Lee’s world. Spending time with her became not about remorsing on what will never be; her past (most of which she cannot remember)—nor was it about analyzing the tragedy of her plight. It became about letting Lee tell her own story, one unfolding in the context of a cruel, debilitating disease. And it became about learning that there was no reason not to let that story seem beautiful.

In ways that are often painful and intense to the rest of us, Lee and others with Alzheimer’s stumble along a road we’re all traveling, trying—often desperately—to communicate something, anything, grasping for unanswerable riddles.

And until there’s a cure for Alzheimer’s, there’s one way, outside of medicine, to counter this disease, which we all have within our reach, whatever the road, whatever our relative agility at traversing it.

Empathy.

Scott Kirschenbaum is a filmmaker based in San Francisco, Calif. His documentary “You’re Looking At Me Like I Live Here And I Don’t” will premiere nationally on PBS’ Independent Lens on Thursday, March 29, 2012.

Joey McIntyre’s Story: My Mom May Not Know Who I Am…

Caregiving, Featured Posts, Women & Minorities 21 Responses »

Mar 272012

But she does a pretty good job of making me feel like she does. I believe she knows there is a connection. She keeps it very simple when she talks to me. Partly I think because she knows that she can’t quite remember but is still witty enough to know that she doesn’t want to make it any more confusing than it already is for her.

I think she is past the most scary part— realizing she is “losing her mind.” She knew something was happening. And at first I thought it was just my mom being dramatic. But looking back a few years, her behavior was strange. And soon it was clear that she was slipping away. That mostly showed up in her feeling scared and not wanting to be alone.

I remember in the fall of 2008, she said something very profound and sadly poetic. She said, “me and the night don’t get along.” I thought that was quite a lyric. My mother was as witty as they come. She wrote tons of poems and parodies of songs. Mostly for co-workers leaving for another job or for cast-mates at the end of a show she was in. Or for my sisters’ bosses or workmates. She would whip something up in an evening. She could do it all. Of course she had and raised nine kids — that says it all.

I don’t want to keep saying WAS because she still IS. She still has her one-liners. She is still sweet and very interested in what you are saying.

When I saw her last December at my sister Carol’s Christmas show at the fabled Footlight Club, she was so into the show. I enjoyed watching her as much as the show. If you didn’t know she had Alzheimer’s, you wouldn’t think it. She was very in the moment — happy to see my father introduce my sister, but also zinging him saying to herself, “he’s awful.” She watched each song— liking some and loving others. But then a few minutes after, I asked if she liked the show, and she answered, “what show, dear?” That kind of sums up where she is right now.

I am no expert and I am 3,000 miles away, but she is doing ok for someone at her stage of this disease. My mother was a force and could do so many things. Now, she is very slow. But through all this there is a bitter sweetness. I hear stories from my siblings about how sweet she is and the simple loving words she says to them. There is still a person in there. And she is alive and still working it out.

I think she still knows that she has some kind of disease, but she has moments of peace. Hopefully, with more funding and the hard work of all involved, we can find a cure so that Alzheimer’s will not affect generations to come. This disease affects the whole family. My mother is so fortunate to have the care she has, but so many are not as lucky.

I will be running the Hollywood Half Marathon on April 7, 2012, in her honor — and in honor of all those affected by Alzheimer’s — and to raise awareness and funds for the Alzheimer’s Association. If you can, please donate to my page at http://www.crowdrise.com/JoeyMcIntyre

Thank you for always supporting me in anyway you can— in your thoughts and prayers and deeds.

Joey McIntyre is a singer/songwriter who rose to fame as a member of New Kids on the Block selling over 80 million albums and countless sold-out shows worldwide. He continues to push boundaries with his music as a solo artist and has vast theatre and screen experience including appearing in Wicked on Broadway and as a season regular on Boston Public. Recently, Joey declared himself an Alzheimer’s Association Champion and is fighting to end Alzheimer’s on behalf of his mother who is living with the disease.

Caregiver Facts and Figures: A Bittersweet Reality

Caregiving, Women & Minorities 19 Responses »

Mar 092012

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.

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