Alzheimer's Challenges are Mounting but Together We Can Move Mountains

We are happy to announce the kickoff of a movement we are calling OHIO Grassroots Alzheimer's Project or OHIO GAP. The first meeting will be held on 8/28/14 at 6:30 at The Worthington at 1201 Riva Ridge Blvd in Gahanna, Ohio.  The meeting is open to the public.  We will begin strategizing, forming committees, and discussing our purpose, mission and vision. Please consider joining us.  

Alzheimer's kills and the prognosis is epidemic.  According to the Alzheimer's Association 2014 Alzheimer's Fact and Figures Reports Centers for Disease Control and Prevention, every 67 seconds someone develops Alzheimer's in the United States. To add insult to injury, studies indicate that Alzheimer's deaths are vastly under-reported which results in a false sense of security and under-funding. Research shows that Alzheimer's was the underlying cause in 500,000 deaths  in the United States in 2010, a figure close to six times the estimate from the Centers for Disease Control.  In other words, in just one year, Alzheimer's killed nearly as many as AIDS - responsible for 636,000 deaths in the United States - had taken in more than three decades.  (Alzheimer's, a Neglected Epidemic. May 2014)  

So where is the outrage?  

I read an article in The New York Times called Alzheimer's, a Neglected Epidemic back in May that literally kept me up at night. I would lie awake while the wheels in my head went round and round wondering if we should move on what the article was suggesting. In short, the article asserted that the fight against Alzheimer's lacked momentum due to 1) distorted views about aging and 2) a lack of in your face leadership or a "strong inside game."  The sentiments of the article resonated as truth, mirrored my own observations and stirred an awakening inside of me that left me weighing options as I stood on the threshold of what to do next. A few weeks later I read another piece called The Unfortunate State of the Alzheimer's Movement  released by Glenner Memory Care Centers which further cemented my desire to do something.  

From the article: 

"But while public health campaigns to fight issues such as HIV/AIDS and infant mortality gained considerable popularity during their respective eras, Alzheimer's has not gained a similar response...The fight against issues like AIDS, infant mortality, and childhood cancer harvest immense attention because these conditions are considered extraordinarily tragic.  They deny children and young adults the opportunity to live a long, fruitful life.  On the other hand, Alzheimer's affects older adults - mostly over the age of 65. Alzheimer's is indeed a heartbreaking and disastrous illness, no one would  argue that, but a lack of attention combined with society's 'distorted' views of aging fosters a sentiment of indifference that permeates throughout all facets of our community - from legislation to the media to our own personal values."

OTHER CHALLENGES...

Lack of momentum is further complicated and confused by a host of other challenges! The fact that stigmas about mental health disorders and ageism collide in Alzheimer's in a youth-obsessed culture making the Alzheimer's patient even more invisible in the public eye works against us. Caregiver stress, frustration and fatigue make it difficult to mobilize families who would otherwise be leading the fight on the front lines. Misconceptions and a lack of understanding continue to rule pubic opinion and policy.  For example, the media has advanced the idea that healthy living can help prevent Alzheimer's,  but the scientific evidence is unclear.   This type of misinformation can and does give way to victim-blaming.  Fear is also a factor. Studies indicate that Americans fear Alzheimer's more than heart disease, diabetes or stroke.  Patients and caregivers often struggle with fear-related issues in Alzheimer's.  A cousin to fear in the Alzheimer's experience is denial.  Everyone seems to be in denial.   Patient's often hide symptoms during the early stages and family members and close friends do not want to acknowledge Alzheimer's at any stage.  

OUR COMMITMENT...

Senior Agenda will continue to work to raise awareness, demand notice from our politicians, fight for funding for a cure, and encourage treatment options through volunteerism and donation. We will also continue to back those senior advocates, physicians, scientists, families, caregivers, and businesses that participate in the fight against Alzheimer's and dementia.  We will continue to stand with the Alzheimer's Association as we believe they are currently standing alone on the front lines.  Above all that, we will continue to celebrate seniors and the elderly as worthy of the attention and dedication needed to beat this diseases.  I have blogged many times about ageism and we will stay the course! 

Wish We Had Talked About Death Before Papa Died

I pulled into the driveway and there he was standing in the window with the dog by his side.  They were waiting patiently for some word about the events of the night. I had left the house around midnight and now the sun was preparing to show itself. More hours had passed than I realized. Why didn't I think about this before now? How should I tell him?  What words should I use?  Oh God!  There is no time to ponder anything.  He sees me.  He has been waiting for hours.  I hope he wasn't afraid.  Why didn't I use the drive home to figure this out?  Mommy will be here in a minute, maybe she will know what to say.  I waited for her to pull in behind me and we got out together.  We were in shock. She was still trembling. I was numb and the tears that would flood my world in the coming days and weeks and months had not yet made an appearance.  The front door opened and he stepped out into the twilight and asked, "Where is Papa?"  Neither of us spoke as we walked towards him. "Go in house and put Moses away before he gets loose,"  I instructed.  "Ok, but where's Papa?  Did he have to stay?  Who's with him?  My son had already experienced more hardship than most but this kind of loss was still unknown to him. For a moment, I felt like a complete failure.  I could not protect him.  "Moses doesn't want to go out," he said.  I rolled my eyes and commanded the dog to go lay down somewhere but he was already laying down. "What's wrong," my son asked. My mother sat on the couch and asked my boy to come sit in her lap.  "Isaiah, Papa went to be with Jesus".  It was clear that he was not grasping the message that she was trying to convey so she tried again.  "What I mean is that Papa is needed in Heaven so that is where he went.  Do you understand," she asked.  Isaiah turned to me and asked, "Will he come back when he is finished doing what God needs him to do?"  "No, Isaiah.  Papa died at the hospital tonight."  I will never forget my child's reaction.  I could see the brutal reality of that night roll through his being.  I can still hear his sobbing. He was 12 years-old and until that day he had never sobbed.   Mommy sobbed.  Isaiah sobbed.  No one spoke for almost an hour.

I have often wondered how that night might have played out differently and if it would have made a difference in the way my child processed his grief had I been better prepared.  As parents, we want to protect our children from harsh realities. Death is inevitable and unpredictable and real.  It is absolutely beyond our control. We cannot protect them from it. We can do a better job of preparing them for it. The experts agree that talking about the possibility before a tragedy occurs is best. I think common sense would agree!  

Endurance in Action: Sandi Latimer Style

Sandi was interviewed on Senior Agenda for one of our Slow Down, Listen & Learn segments in early May.  Afterwards, she agreed to help organize our "Author's Pavilion" for the Parkinson's Benefit on June 13th in a volunteer effort to help make the event as inviting as possible.  Just four days before our signature event, Sandi returned home from a day of volunteer work to find her husband dead.

I was aware of her loss but thought it insensitive to ask if she was still planning on attending. I privately speculated that the funeral might actually be the same day as the event.  Authors were contacting me asking what to do.  "Did you hear about Sandi's husband?"  "Is the 'Author's Pavilion' still on?"  "Should we cancel out of respect for her loss?"  I had only known Sandi for just over a month but something told me she would want us to plunge forward.

The day of the event, one by one the authors arrived and each inquired about whether or not I had heard from Sandi.  I had not but instructed them to save her a spot just in case.  "She's not coming. She is burying her husband today, " one author explained.  "You are probably right, but save her a spot anyway,"  I replied.

Not only did she attend the event that evening, but I have watched her continue to put one foot in front of the other and keep on keeping on in a way that is truly remarkable in recent weeks.  She continues to promote her books, volunteer and offer words of encouragement to others.  Consider her recent blog or her recent post of facebook: "Many of you have asked how I'm doing.  I'm proud to say I'm vertical and breathing.  I still have a vast supply of tears.  I'm trying to keep up with my regular schedule as well as do what other things are expected of me.  Anger, frustration, wonderment, and a variety of other feelings are present.  I'm trying to turn a negative into a positive.  Someday I will learn to release the parking brake, or start a lawnmower or snow thrower, or back the SUV out of the garage, or even play a CD.  But right now other things have taken priority."  

The podcast of her interview back in May will only be available on our site for a few more days.  If you missed that program, listen here.  I also think you will enjoy my recount of our initial meeting if you haven't read that piece.  Read here.

Sandi has shown incredible resolve, fortitude and strength in the past couple of months.  She is endurance in action.  She is obviously actively grieving but she is also still making her own special contributions.  If you know someone like Sandi, please consider contacting her via her blog link listed above.  Sharing stories is one way to keep hope alive and make it through another difficult day.  

Our thoughts and prayers continue to be with Sandi.   
  

Local Author Raising Money for Presidential Libraries Project

Sandra Gurvis, the author of 16 commercially published books and hundreds of articles,  was interviewed on Senior Agenda this morning.  Her titles include DAYTRIPS FROM COLUMBUS, 3rd ed.; OHIO CURIOSITIES, 2nd ed; CAREERS FOR NONCONFORMISTS, AMERICA'S STRANGEST MUSEUMS, and more. Her work has been featured on "Good Morning America," "ABC World News Tonight," and in other newspapers and magazines.  We had fun in the studio as we chatted about everything from life in the 1960's to idealism (or the lack thereof) in this decade.  If you missed the live broadcast, you can listen to the Slow Down, Listen and Learn interview here.  

One of Sandra's current projects is all about Presidential libraries.  If you are a history buff, patriot or just enjoy Americana here's your chance to support a local artist in her effort to produce what she is calling CLOSE ENOUGH FOR GOVERNMENT WORK. According to Sandra, the book will contain photographs and be organized geographically so if you were to visit, say, Texas you'll know where to go.  Learn more about the project and/or donate here.

Please consider making a donation.  What a wonderful way to say happy birthday to our country this 4th of July 2014! Sandra is an accomplished and prolific writer so we can rest assured our donations will help move this project along and result in yet another valuable and insightful published piece of work.