The Long and Winding Road extends our deepest sympathy to Karen, Frances, and Brad Garner. This loss makes us even more determined to fight like hell for an end to this insidious disease.

Photo Credit: Missing Jim
02 Saturday Apr 2016
The Long and Winding Road extends our deepest sympathy to Karen, Frances, and Brad Garner. This loss makes us even more determined to fight like hell for an end to this insidious disease.

Photo Credit: Missing Jim
28 Monday Mar 2016
Tags
alzheimers, alzheimers caregiving, alzheimers end of life, alzheimers grief, dementia, missing jim, younger onset alzheimers

Photo Credit: The Garner Foundation
I know we can all agree there is plenty in life that’s unfair, but at the moment one specific example is on my heart.
Not that long ago, Karen & Jim Garner and their children were just like any other family. However, all of that changed when Jim was diagnosed with Younger Onset Alzheimer’s Disease at age 48. Jim had a long successful career in the Air Force, and pictures from just a few years ago show a strong, handsome, athletic husband and father of two young children.
This weekend, Karen added a new post to her blog, Missing Jim. If you follow the blog you know that Karen writes with a raw, pull-no-punches honesty. I have such respect for this woman’s courage and grace. The blog is a story of true love, unexpected moments of joy, the kind of loneliness only this disease can exert on a wife, and a sense of loss that defies all logic.
In February, Jim began receiving hospice care. His decline has been swift. As I read Karen’s latest post, it reminded me of my own internal struggle in those last days with Mom. On one hand, wanting to let her go to a peaceful place where she would be whole again, yet on the other hand wanting so badly to hang on to her forever. I can’t imagine being a 46-year-old woman facing that clash of emotions as she watches her husband near the end at the hand of this horrid disease.
Please read and share Karen’s March 27th post titled, I Got That Dreaded Call. Keep this family in your prayers, and share their story. Help Karen educate the masses.
“I want people to see what Alzheimer’s Disease does to a wonderful human being. I want to break the misconception that Alzheimer’s Disease is just old people forgetting someone’s name or getting lost. I want to erase the stereotypical patient idea.” ~Karen Garner
25 Thursday Feb 2016
Tags
alzheimers, alzheimers advocate, alzheimers funding, alzheimers semipostal, dementia, help stamp out alzheimers

Image courtesy of Lynda Everman
I’ve often said that when your life is touched by Alzheimer’s or another form of dementia, you are automatically admitted to “the club.” It’s a club you never knew existed and a membership no one would ever seek out on their own. However, it doesn’t take long to realize your membership card came with guaranteed friendships with some of the most compassionate, inspiring people you’ve ever met.
For me, one of those people has been Lynda Everman, Founding Member of ActivistsAgainstAlzheimer’s, ClergyAgainstAlzheimer’s, WomenAgainstAlzheimer’s, and the Faith United Against Alzheimer’s Coalition. Lynda is like the energizer bunny; she never stops, and her determination to drive toward a world without Alzheimer’s is limitless.
Lynda also founded Help Stamp Out Alzheimer’s. She and Kathy Siggins have worked (and continue to work) tirelessly to urge lawmakers to pass the Alzheimer’s Disease Semipostal Stamp Act (H.R. 3092) that will require the issuance and sale of an Alzheimer’s semipostal (fundraising) stamp. Look for an upcoming post that will include more information on this project, including ways you can help.
I’d like to thank Lynda for allowing me to post this poignant essay. About the piece, Lynda says, “I’m moved to share with you this essay that I wrote some time ago as, more than anything, it sums up my philosophy on what we must do to end Alzheimer’s. . .and hopefully explains some of my tenacity for the semipostal.”

Image courtesy of Lynda Everman
My husband was in the U.S. Marine Corps for only 4 years, but they were transformative years. The eldest son of a Conscientious Objector, he was 17 when he enlisted and was discharged 4 days short of his 21st birthday. He was a generous man, a man of principal, an innovator, a contributor, and very protective of all that he loved, especially his wife. One of his expressions was, “Nothing bad will ever happen to you on my watch.” Unfortunately, some things are beyond the control of even the best of men. For 15 years Alzheimer’s attacked the very fiber of our lives and claimed it’s prize at his death in March of 2012.
Richard was a Principal Systems Analyst for the University of California. A high school drop out and a voracious reader, he designed & set in place student information systems that were adopted nationwide and are still intact & vigorous today. In a bold and unconventional move in the 80s, he took the University of California, Irvine off the mainframe that was shared with the 5 southern campuses at UCLA and introduced personal computers to our campus. When his colleagues on the other campuses saw that it worked (and that he didn’t get fired!), they quickly followed.
Another of his favorite expressions was, “How you perceive a problem is how you solve it. Perception is reality.” It is this expression that brings me to this discussion of bonds, license plates, and semipostals.
I’ve asked my Senators and Congresswoman to support a minimum increase of $400 million in funding for Alzheimer’s research and patient & caregiver programs in FY 2017, as well as all aspects of the Alzheimer’s Action Now initiative. We’ve all read it: the federal government spends roughly $270 on Alzheimer’s care for every dollar it spends on Alzheimer’s research. So, unless and until we give our researchers the funds they need to achieve success at the bench and in our clinics, we will continue a downward spiral of needless suffering and loss.
Let me urge all who are reading this to move away from the philosophy of paucity and embrace the belief that we must use EVERY means available to defeat this formidable opponent. Of course we will continue with our individual and collective efforts; we will continue to walk, row, bike, hike, climb mountains, knit caps, bake brownies, have garage sells. . .and all manner of activities to raise awareness and funds. But Alzheimer’s is relentless and we, as advocates, must be as well. So we must identify and use any and all viable funding sources going forward: at the municipal level, at the state level, and at the federal level.
There are many in our community who believe that if we ask for one thing, we lessen our chances of asking for and receiving something else. I have to disagree. Of course, there is the risk that our requests will fall upon deaf ears; but there is also the hope that our message will get through. This is a huge and serious problem that requires our best efforts to protect the very essence of what makes us human: our memories. Anyone who has loved another, whether it be a spouse or partner, a child, a sibling, a parent, or a friend knows that we would stop at nothing to protect that individual. I know I would do that for those I love and that Richard would have done that for me. As advocates we must do no less. Let’s pull out ALL the stops and implement legislation and programs for bonds, license plates, semipostals and any and all initiatives that will decisively and quickly advance our goals and leave a legacy of a world WITHOUT Alzheimer’s!
Rest in peace, my beloved husband, and know that I will not rest until a cure is found! #ENDAlz #SemperFi
~ Lynda Everman