A Personal Loss

Dear Family & Friends,

My sweet mother-in-law, Natalie (“Mom”), passed away last Thursday morning after 13 years with Alzheimer’s.  Mom had lived a life infused with great emotional courage, a constant focus on family, and a whole lot of pure and unadulterated fun. While the last few years took away much from her, her first 80 years were extraordinarily full.

First things first: As much as I HATE Alzheimer’s Disease and what it did to both Mom’s brain and to her quality of life, I know that she is now joyous and that her brain is once again whole. I know that she is celebrating the reunion with her own mother who also suffered dementia; her beloved husband of more than 40 years, David; her sister; and many other family members and loved ones. I also know that my husband and I will see her again and that she will have many things to share with us when we arrive. I can just see her with a huge grin on her face, waving her arm and saying, “Come see, come see! You won’t believe this!”

I’d like to share a little bit about Mom and the three descriptors that always come to mind when I think of her: courage, family and fun.

Courage: In 1959, Mom had three young girls and was pregnant with my husband when her first husband died very suddenly. Perhaps some of you have suffered through a tragedy similar to this, and can imagine how difficult this period must have been for Mom, but it is beyond my comprehension. What courage she portrayed, giving birth to her newborn son and raising all four of her children on her own for several years.

Family: She found and nurtured an amazing love with her second husband, David. When I first met them, they had been married more than 20 years, and yet they still held hands everywhere they went, even to the grocery store.  She clearly cherished her relationship with him, and was an example to me of how to live your wedding vows every day as if they had been said only moments before.  (Certainly, there were moments of gratitude when, after his death in 2005, Mom’s Alzheimer’s often kept her from remembering her great loss.)

Mom also was an example of celebrating family gatherings. The focus was always much more on the people, than on the logistics or the food or the venue.

Fun: That said, Mom did love a party.  Even well into the Alzheimer’s, she would be giddy with delight when a group of us would enter her room and tell her we were going to celebrate … something, anything.  It may have been just lunch out, or as time went on, just enjoying a hot fudge sundae together. But if we told her it was a party, she was IN!

I am grateful that Mom remained pleasant throughout her years with Alzheimer’s.  Even near the end, even as she lost her ability to focus on anyone or anything, she never suffered through the anger or aggressiveness that sometimes accompanies this horrible disease.  I remember giving her a manicure and pedicure once a few years ago.  She held her fisted hands up in front of her face, shaking them back and forth, her mouth in a wide smile saying, “Oooooh, Ooooooh, Ooooooh,” and grinning, a little tear of joy slipping out of her eye.

I know that it could have been much different. I’ve seen persons Alzheimer’s truly frightened to their core, believing that someone or something intended to hurt them. We were spared that particular horror with Mom.

I am grateful to Natalie for all that she taught me, and for raising the wonderful man who became my husband. In honor of her life, I will continue to be involved in the Alzheimer’s Association’s research efforts into the causes of, and treatments for, this insidious disease. I will continue to support the programs that give helpful information and relief to family members and caregivers.  I will continue to fight for a cure so that my husband and children — and everyone else’s loved ones — can be free of the threat of Alzheimer’s.

Bonnie

 

Don’t Ever Think That Just Two People Can’t Make a Diffference

Dear Family and Friends,

Ten years ago, Cathy Nagy and Susan Oswald held the first Backyard Baseball event to raise funds for Alzheimer’s in honor of their mother.   It was literally a “backyard” baseball tournament, held in the empty lot behind Cathy’s backyard.  They signed up friends from the neighborhood and their children’s schools and raised $400 for their Walk to End Alzheimer’s team. That’s better than a lot of garage sales, and a whole lot more fun for the kids!

The event grew over time to include food, raffle items and a silent auction.  Every year, in the weeks before the event, Cathy’s living room would look like a warehouse facility for an “odds and ends” variety store. A few sponsors and donors became regulars they could count on year after year.  The kids grew into teenagers and looked forward every year to the event.  The neighbors, instead of complaining about the growing crowds and cars, joined in.

As they approached their seventh year, Cathy and Susan decided it would be their last, and they pulled out all the stops and set a goal: a total of $100,000 in funds raised for the Alzheimer’s Association over eight years.  Their loyal friends, colleagues and family members stepped up, as did sponsors, and in 2009, they reached their goal.  Over seven years, Cathy and Susan had raised $100,000 for the Alzheimer’s Association.

In 2010, Becky and Brent Beanblossom stepped up.  The event had too much name recognition, too many loyal participants and too much sponsor support to let it fade away.  Longtime supporters of the Alzheimer’s Association, Becky and Brent held a successful 9th Annual Backyard Baseball event at a new location, a local church, to accommodate the ever-growing crowd. Of course, Cathy and Susan continued to held tremendously, as they do today.

In the fall of 2010, I held  the last fundraising event for my younger daughter’s soccer team.  My specialty had been corn hole tournaments, an idea germinated by her Ballard High School soccer coach, Brooke Burd. I found that these were fun, family-friendly events that brought together multiple generations to enjoy an evening together for a good cause.

That’s why I agreed to begin chairing Backyard Baseball in 2011.  I relied a great deal on Cathy, Susan, Becky and their husbands, of course, and the name recognition that drew their dozens and dozens of friends, family and other supporters each year.

We are working to grow Backyard Baseball & Bar B Q into more of a community event. We’ve added live music — this year it was Muench (www.muenchband.com) — and scrumptious bar b q from Mark’s Feed Store.  The sponsors who have stayed with us over the years — Home Instead Senior Care, Byerly Ford/Nissan, First Capital Bank of Kentucky, Norton Brownsboro Hospital, YUM! Brands, LPL Financial, The Benefits Firm and WHAS AM 840 – have been joined by Guthrie/Mayes Public Relations, Christian Care Communities, WAMZ  97.5 FM, Q Country 103.1 FM, ESPN 680 AM, and Dr. Gary Reasor. Our generous donors continue to step up every year with wonderful gift baskets, gift cards, sports team logo wear and hand crafted items.

To date, Backyard Baseball & Bar B Q has raised more than $130,000 for Alzheimer’s (the numbers are still coming in for the 2012 event)!  This money funds workshops and services for people affected by Alzheimer’s in Kentucky as well as research to find a cure.

$130,000!  Don’t ever think that just two people can’t make a difference.

Sincerely,

Bonnie

From Storming the Beaches at Normandy to Forgetting How to Hold a Spoon

Dear Family and Friends,

We all participate in the Walk to End Alzheimer’s for different reasons.  Michelle Bries sees her participation as a way to “pay it forward.”  Here is Michelle’s story:

“Thank you Norb and Dolly Bries. I choose to pay the joyful memories you have given me forward by being an active member of the Alzheimer’s Association. I’m walking to help reclaim the future for millions. By participating in the 2012 Alzheimer’s Association Walk to End Alzheimer’s, I’m committed to raising awareness and funds for Alzheimer research, care and support.

“While a junior in high school, my paternal grandparents were diagnosed with Alzheimer’s disease and dementia. There was, unfortunately, a dramatic event which became the catalyst to move both grandparents into an assisted living facility.

“Like myself, my father is an only child, and the decision to move his parents into a home was not an easy one, but the best. They enjoyed the facility and in their minds, they were staying at the resort in South Carolina they had frequented on vacation over the years. My grandfather raved about the ‘resort’s’ attentive service and was always surprised when the staff at the front desk turned down his Monopoly tip money.

“As the disease progressed, the mental state digressed from pleasant vacation reminiscing to horrid war stories, to forgetting how to hold a spoon. The mental deterioration of my grandparents was also shown in the expression on my father’s face every time we went to visit. My grandparent’s physical presences perished after 8 and 9 years. As taps played for my grandfather, who passed first, the emotion from my family was overpowering. A man who had stormed the beach at Normandy, raised my fabulous father and taught me Chinese Checkers, inspired me to pay what I can forward. The strength my father embodied and the enormous respect I gained for him during this decade, inspired me to pay what I can forward.”

I want to thank Michelle for sharing her story. Sometimes it’s painful to share these stories, because doing so reminds us of all that we have lost.  But like many of you, Michelle is using her memories as a challenge.

Sincerely,

Bonnie

I Want My David to Always Be “My David”

Dear Family and Friends,

The “C” word used to be the scariest entry in my personal dictionary of healthcare nightmares.  And while the potential of being diagnosed with cancer, the disease that caused the early deaths of both my parents (my mom at only 56 years old), led me to adopt a few healthier lifestyle changes and scared me into never trying tobacco, the truth is that I’ve never been consistent about staying fit or eating correctly. I drink way too much diet soda. I am very creative about justifying chocolate. I exercise only in fits and spurts.

 I donated to cancer research. I was moved by my Dad’s taxing effort to complete a cancer walk in 2008, just a few months after his diagnosis, as a symbolic gesture to honor my mom for the walk she was too ill to finish in 1995. I supported the disease awareness efforts of family and friends.

 Now in our early 50s (VERY early), my husband and I are still relatively young. But every medical test still comes back clean.  We recognize that we are blessed. We understand that we should do more in terms of preventative behavior. I miss my mom and dad terribly.

 I guess I’ve never truly believed my health was at immediate personal risk. My parents have been gone a while now. The fear has faded.

 In recent years, the subject of my healthcare nightmare has refocused in a new direction.  And this time, I think that the fear is even more real because I am worried about the health of my husband, David, rather than my own health.  The shift has occurred as my mother in law, Natalie, continues her 13-year battle with Alzheimer’s disease.

 Today, this woman who journaled every day of her interesting life of travel and fun for decades can no longer hold a pen in her tightly curled-up hands.  She does not recognize anyone; not her daughter in law, not even her children. Her chin rests as if glued permanently onto her chest. Her eyes are unfocused, often closed, although she is not sleeping.  He lights have gone out.

 As recently as early last year, when my David and I were visiting Natalie, she heard Dave’s voice as when he walked up behind her and said, “Hi Mom.”  She immediately lifted her head and smiled, “That’s my David.”

 She might have meant her husband, David. The moment of joy, though powerful, was just a moment. It hasn’t happened in a very long time, and it may never happen again.

 I truly love Natalie. She was a great mother in law to me, especially after I lost my own mom. And Natalie is certainly one of the reasons I volunteer for the Alzheimer’s Association of Greater Kentucky and Southern Indiana.

But the driving force behind my volunteer efforts is the fact that I want my David to ALWAYS be My David. 

 I want to know that he will continue to rigidly follow his morning routine, and to be able to count on the fact that he will take exactly the same amount of time to get ready to leave the house whether we are on time or running a little late. I want to know he has a Plan B. He’s always has one.

As we enter our empty nest years, we hear stories about some of our friends wondering how their marriages will survive the lack of children’s activities and issues to keep them engaged with each other.  Not us.  David and I relish the coming years, and have loved virtually every moment of the tastes we’ve enjoyed as our youngest daughter goes to and from college. We look forward to watching our girls start their careers, create new families and discover what’s truly important to them.

I watched my mom suffer with cancer for 10 years.  My dad died more quickly, in a mere nine months.  Both deaths were incredibly difficult, but bearable. I was far away. I could compartmentalize.

 Perhaps it’s wrong to admit this, but I just don’t think I could bear it if I were to lose who David is long before I lost him to death. I need his light in my life. Next to my Heavenly Father, it is the most brightly burning light I can imagine. I cannot compartmentalize David’s role in my life.

 That’s why I am chairing the 2012 Louisville Walk to End Alzheimer’s.  I want a cure to this disease to be found in my lifetime.  I don’t want my husband to get a diagnosis of Alzheimer’s.  And I don’t want my children to face a future where Alzheimer’s is still a possibility.

 If you’ve read this far in my blog post, perhaps you have a personal connection to Alzheimer’s as well.  Please, visit www.alz.org/kyin and sign up to play your role in finding a cure. Sign up a team to Walk to End Alzheimer’s.  You’ll be playing a small role in my love story as well.

 Sincerely,

 Bonnie

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Walk Team Week -Friday Incentives

If you register the most team members for your Louisville walk team today, you will win a $25 iTunes gift card and a movie basket! Visit http://www.alz.com, and call Whitney Vogel at 451-4266 if you have questions or need fundraising ideas.

Ginger and John Sanders’ Story Chronicled on KYForward

Dear Family and Friends,

The first installment by Kentuckian Ginger Sanders about her husband’s diagnosis with Alzheimer’s and their life since then can be found on today’s KYForward.  I’m grateful that Ginger is sharing her experience and hope that those who read it will be reminded that they’re not alone, and that their experiences and thoughts are shared by many others in Kentucky

Here’s a link to Ginger’s first post: http://www.kyforward.com/2012/07/alzheimers-diary-ginger-sanders-chronicles-her-trying-journey-through-husbands-illness/

If you would like to share your story on this blog, please email me at bonnie@guthriemayes.com.  Thank you!

Bonnie

 

 

 

Monday’s Prize: Ultimate Movie Snack Basket

Make Monday “MARVELOUS”

To adapt Billy Crystal’s famous sayings, YOU ARE MARVELOUS! 

 Today’s Challenge:  For EVERY THREE WALKERS that join your team TODAY, we’ll enter you in a drawing for the ULTIMATE MOVIE SNACK BASKET!

This is a great opportunity to encourage those returning team members to go ahead and register.  Grab the low hanging fruit and share the rewards!! Register at :  www.alz.org/walk

For more information on recruitment efforts or to have one of our staff members visit your company or facility, please contact Whitney Vogel whitney.vogel@alz.org or 502-451-4266