Nov 142013
 

lehmann

Next month, Mary Margaret and I will have been together 50 years.

She is a very positive gal, extremely caring and inclusive with her friends. I am not always a social animal. Mary, however, is very outgoing and makes new friends easily. These days, we are attached at the hip… but it wasn’t always this way.

In 2009, I was diagnosed with Alzheimer’s.

After I received the diagnosis our lives changed. At the time, Mary Margaret and I were living in California, but this news caused a great sense of stress, so we relocated to Minnesota to be closer to family. Moving wasn’t difficult – it actually took a weight off our shoulders. Then one of my wife’s friends said “Why don’t you call the Alzheimer’s Association’s 24-hour helpline?” That really changed our lives. Not only have I become very involved in the Association, but so has Mary. During our career years, we really did very little together – now we do everything together. Our connection to the Alzheimer’s Association and shared commitment to raising awareness of the disease has brought us closer together as a couple.

Before I received the diagnosis, Mary and I were absorbed in our separate professional lives: She had her activities, and I had mine. If we got together on a Sunday, it was a big deal. It’s almost like we are dating all over again. She has turned me on to subjects I wouldn’t normally be interested in, and we have immersed ourselves in an eclectic series of programs. She is an avid reader and I’m not; however, through themed book presentations I have been able to learn something new with Mary, and that was a different experience for me. In turn, I have turned Mary on to the arts and now we are both passionate about visiting museums. There isn’t a local museum we haven’t been to!

We support each other.  The experience for caregivers and care partners is unique to the relationship. Mary and I support each other on a daily basis; we have to. She is the social contact, the “hostess with the mostess”, and I am her assistant, you might say, helping in the ways I can. I’m not a terribly patient person, so I am trying to be more patient, which is the least I can do.

The biggest thing that I notice is her relationship with other caregivers. I have a deep respect for the sacrifices that caregivers make every day to support individuals like me who are living with the disease. Today, there are more than 15 million unpaid caregivers of people with Alzheimer’s and other dementias in the United States. The role is demanding; they are our lifeblood.

Mary Margaret’s compassion extends beyond our relationship. She spends much of her free time talking with other caregivers; learning from others and offering support. She has hundreds of followers from all over the U.S. on Twitter, and she will refer articles to them to get feedback and exchange ideas. Compassion is in her genes! During National Caregiver Month, I want Mary Margaret and other caregivers to know that I am grateful. THANK YOU!

What makes a caregiver in your life special? Leave a comment here on the blog, or leave a tribute for a caregiver or care partner at the Caregiver Center.

About the blog authorKen Lehmann is a member of the Alzheimer’s Association 2013 National Early-Stage Advisory Group (ESAG), and he pays tribute to his wife and very special care partner Mary Margaret during National Alzheimer’s Disease Awareness Month. As an Advisor, Ken encourages others living with the disease to avoid worrying about the past, but to “live in the moment.” 

Learn More

 

 

 

Oct 232013
 

flu vaccine and Alzheimer's‘Tis the season for flu vaccine! Every year we get calls from people asking if there is a link between the flu vaccine and Alzheimer’s disease. This is an idea that came about more than a decade ago and has been debunked many times over.

Fact:  Several mainstream studies link flu shots and other vaccinations to a reduced risk of Alzheimer’s disease and overall better health! For example:

   A  2001 Canadian Medical Journal report suggests older adults who were vaccinated against diphtheria or tetanus, polio, and influenza seemed to have a lower risk of developing Alzheimer’s disease than those not receiving these vaccinations.

The bottom line is that you should speak to your doctor about whether or not you should get a flu vaccine this year and don’t let fears of Alzheimer’s risk stop you!

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.

Learn More

Sep 212012
 

 A Note from Michael: I would love to thank each one of you for the wonderful comments I received from my article.  As an advocate, it can be challenging to measure the ways in which my story is received by others. Seeing all of this positive feedback has given me a boost to continue writing and raising awareness for the millions of American’s affected by Alzheimer’s disease.

Since receiving my diagnosis, I have had the opportunity to speak with many individuals living with Alzheimer’s and other dementia.  I hope that my personal story has given others a new perspective on how to live with this disease, and connect with others.  Don’t give up! It takes time and patience to find the right connections and the best ways to cope with some of the challenges you may experience; however, the benefits are priceless. I am grateful for the opportunity to connect with so many of you through this blog. The acknowledgements and comments I received have inspired me to continue advocating as a person living with Alzheimer’s. Please join me and become an Alzheimer’s advocate. Join the National Alzheimer’s Advocate Network and make your voice heard. Thank you again.

******************************************************************************************************************************************************************************************************

Alzheimer’s disease and other forms of dementia affect more than 35 million people worldwide today. An astonishing fact is that today someone in the world develops dementia every 4 seconds. By the middle of the century more than 115 million people will be affected by the disease if we do nothing.

My name is Michael Ellenbogen, and I am living with Alzheimer’s and trying to make a difference. I was previously a high-level manager in the telecommunication industry. In 2008, I was diagnosed with younger-onset Alzheimer’s disease (YOAD) after struggling to get a diagnosis since my first symptoms at age 39. Losing my job and not being able to work had a huge impact on my life as I was a workaholic. I am now an Alzheimer’s advocate and a spokesperson for the Alzheimer’s Association (US) as a member of its national 2012 Early-Stage Advisory Group.

I am so frustrated, because no one realizes how seriously disabled I am. If I had a loss of limb or some other visual ailment, it would make people realize. I don’t want them to feel sorry for me or pity me, I just want to be understood. So many people say you do not seem to have Alzheimer’s, and that frustrates me. Let me tell you what it’s like to live with this debilitating and progressive disease.

Imagine for one minute that your friend, relative or family member has Alzheimer’s and has to deal with the following issues. When I go shopping and look at items, most of them never really register in my mind, even though I see them clearly. I have trouble making decisions, because I question whether I am making the right one. I can no longer enjoy my favorite hobbies, because it requires processing skills that I no longer have. I went from being a gadget person, to being threatened by technology that I no longer can use. This is what I deal with and so much more.

I go to a happy affair only to be tortured by the noise and surrounding conversations, because of the loudness that cannot be filtered out. If people try to speak with me in a public setting where there are many other conversations, I just don’t understand what they are saying. This is because all of the people speaking come in at the same volume level. All the words run together, and it sounds like a foreign language.

I went from being extremely proactive to becoming much less active and motivated. I leave things around the house and don’t put them away, because I don’t know where they go or feel I may not know where to retrieve them again. One moment I am nice and another I may fly off the handle. I can no longer write or speak like I used to. My friends slowly become distant and usually speak to my wife. I do realize this.

I worry every day about the challenges ahead. Or even worse, I am losing my mind and see it happening, but I cannot do anything to change the course. People always say ‘if I can do anything just let me know.’ If I take them up on that offer, they back out of their commitments. I have become extremely surprised by the lack of public commitment to my pleas for support of Alzheimer’s disease. While some may be sympathetic in the moment, there appears to be little follow-through. This is very upsetting, because I feel as though it affects me personally as well as the millions of others living with the disease. I was always there for others when they needed it and now I feel alone.

While many people just coast through the day, I have to use 110% of my processing skills to do most things, which increases the stress and frustration. The worst part about this disease is knowing that  I am doing all these things wrong and have no way to control or stop it, and it’s only getting worse as the days go by. I used to save lots of money by doing so many things around the house. Now I have lost the drive, determination and skills needed to do those things. Many times I hurt myself trying or make things worse.

I cannot begin to explain how it tears me up inside to see my spouse struggling to do the things that I once was capable of doing and know I cannot do a thing to help. I realize that one day I may no longer be able to drive and this devastates me. I see my wife becoming stressed, depressed and overwhelmed, but caregivers know it will only continue to get worse. Sadly, they keep telling themselves that they can do it all even when we know they will need help.

I, the patient, see it definitely. My wife is on the road to hell, and she does not even realize it yet, because she is so busy trying to block it all out. The worst part about all this is, I have not even reached the worst stage.  That scares the hell out of me.

I have been so surprised by the stigma associated with this disease. It comes at you from all angles. People think they knew what Alzheimer’s is, but they don’t. I see this not only from people living with dementia but many media health correspondents, physicians and organizations that are geared to helping those deal with the disease. I have learned that I do not want to share my diagnosis with people I meet until they get to know me. If I was to tell them upfront, I would be treated so differently, which I have learned. I kind of see this disease like HIV used to be. The people who have it are so afraid to let others know, including family. I do not get it. We did nothing wrong to get this disease, and we need to speak up to let our voice be heard. We did nothing and no one should be ashamed of having it. I feel so much better when I share it with others than when I try to hide it.

Because of my frustration with the existing environment for people with dementia, I realized change was need. I decided to use my few skills left to advocate. I have spent some of my last few years being on television, radio, newspapers, many blogs and working with many politicians. I also had an opportunity to speak at all of the public sessions to develop the first U.S. National Alzheimer’s Plan. I did all this on my own. But that was not enough, because I ran into so many people who just did not want to get involved. I am now a volunteer for the national Alzheimer’s Association Early-Stage Advisory Group.  If there is something I want you to walk away with it’s that you can make a difference, but it will take persistence. Write a letter to your public official or reach out to local support organizations to create needed programs and services. Your voice and your story are powerful tools. Please get involved.

The simple truth is, if you have not been touched by this devastating and debilitating disease yet, consider yourself extremely lucky. Sadly, it’s just a matter of time before it touches you. It is my hope that my actions today may prevent future generations from suffering with this disease. So give yourself piece of mind and do something today. I hope that what I am doing will allow me to leave this world knowing that I did everything possible to make that next generation have a fighting chance. There are no excuses for not wanting to help. The human cost factor is too high, and we are all accountable to do something.

There are many organizations out there like ADI and the Alzheimer’s Association that can help you. The Alzheimer’s Association got me started in many ways with my new journey. It not only helped me, but it also had helped my wife as my caregiver. They have a website with many resources at www.alz.org. I encourage you to reach out today if you have not already. I would also encourage you to educate yourself.

Please join me and Go Purple on Friday, Sept. 21 for World Alzheimer’s Month. I wear a purple Alzheimer’s bracelet every day.  And for those living with Alzheimer’s, stop focusing on what you cannot do and join me in the battle to advocate. We still have so much to give, and we need to use our skills at our own speed. There is nothing to be ashamed of.  I, and your loved ones, are counting on all of you.

Learn More:

About the Blog Author: Michael Ellenbogen is living with Alzheimer’s and trying to make a difference. Michael is also a member the Alzheimer’s Association 2012 National Early-Stage Advisory Group.

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.

Learn More:

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.

Aug 302012
 
Shirley is a full-time Alzheimer's caregiver

We spoke with Shirley Sillman, wife and caregiver of Bob Sillman, who was diagnosed with younger-onset Alzheimer’s in 2007.

Have you noticed stigma or jokes about Alzheimer’s in pop culture?

Of course.  But we (society) tend to mask our fears and misunderstanding though humor.  I do it every day.  If I didn’t joke or laugh about it — especially with Bob — I would probably be a wreck.  Do jokes marginalize and ultimately stigmatize the disease?  My view of the world these days is pretty selective, considering caregiving is a full-time job.  I haven’t noticed that pop culture has had the chance to really address this disease, I think because of how misunderstood it is.

Were you surprised by the stigma associated with Alzheimer’s?

With all of the information at our finger tips these days,  it surprises me more when I see the blank look of people who don’t know what to say or do when they learn Bob’s has Alzheimer’s.  I often wonder if people are more uncomfortable with themselves than with the disease.  On one hand, leprosy can be held up as an example of a disease which holds the ultimate social stigma society can offer.  The condition is terrible, and even in the absence of actually encountering someone with leprosy, we’re all conditioned that those afflicted are outcasts and should be avoided at all cost.  Alzheimer’s, on the other hand, invokes a very honest insight into what people know about the disease (and importantly, how to react to someone with this disease).   Where is the collective conditioning that you find with leprosy (or any other disfiguring, immediately degenerative disease)?  It’s not there.  Nobody has really explained to us how to act and cope with this one.

How did you deal with the stigma?

I can only answer this as it relates to my own circle of friends and family. I deal with it as directly as possible.  In the case of family, friends and neighbors, the best approach has been to educate them early on and as much as possible.  Not unlike the shock you see after an accident or catastrophic event, people need (in some cases want) to be instructed what to do.  I believe laying down all of the facts and telling friends, family and strangers how they can help Bob is crucial. In the absence of understanding is fear and uncertainty.  It’s really easy to look away when you can’t identify with and understand what you don’t know.

What advice would you give other families dealing with stigma associated with Alzheimer’s?

Don’t let it spread in your social circle — your family, friends and neighbors.  You cannot (and should never) force anyone to cope with what they are unwilling to handle, but certainly know your facts about the disease and educate those closest to you. You can hope that some of what you impart and share with them will make it to another set of ears that may have a desire to learn more.  That’s how ignorance is overcome: one person at a time.  Ask people 30 years ago about the symptoms of heart disease and compare those answers to what people know now, and I’ll bet you’ll find that all of that public education about heart disease has paid off.

What would you say to the people who believe the stigma surrounding Alzheimer’s?

This is a tough one. Because until people are directly impacted and affected by what they fear (or do not understand), it is unlikely that they will change their mind or perception about the disease.

Learn More:

Shirley and Bob Sillman Sillman live in Oklahoma where they are very active with their local Alzheimer’s Association chapter. Bob was recently featured in a Walk to End Alzheimer’s television ad. Their team, Forget Us Not, has raised nearly $5,000 to support Alzheimer’s research, programs and care. To find a Walk to End Alzheimer’s in your area, click here

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.

Alz.org main site  |  Research  |  Advocacy  |  Care and support  |  Message boards  |  Disclaimer  |  Donate  |  Contact us  |  Sign up for e-news
© 2011 Alzheimer's Association | Blog Suffusion theme by Sayontan Sinha