Posts Tagged ‘Alzheimer’s’

Read to Remember–Part II

Thursday, March 29th, 2012

When I began writing novels a decade ago, I vowed to use all my profits to benefit other people. When my first book, Luck of the Draw was released in May 2009, I needed to decide which organization I wanted to support.

I considered many. The year before, my mother had died from lung disease, so the American Lung Association was a good fit. My father and both my brothers had died from heart disease which is the leading cause of death in the U.S. for both men and women. So the American Heart Association is an important cause, as well.

I thought and thought.

I don’t know why, but I kept coming back to the Alzheimer’s Association. Fortunately, there was no history of dementia in my immediate or extended families. My Great-Grandmother Myers had lived to be 91, but only complained of a hammer-toe and how she couldn’t find slippers wide enough to fit comfortably. Her mind was sharp until the day she died.

Still, I kept coming back to the Alzheimer’s Association as my target charity.

I went to my business partner, Allen Hager, founder of Right at Home. He’s the father of my children, a brilliant man, and extraordinary visionary. I asked him how to go about promoting my book to fund my adopted charity. He gave me sound advice. He told me to develop a business plan and run it by my accountant.

My business plan included national events where I would sell my books and talk about Alzheimer’s disease. Afterwards, I would turn over the profits to the local chapter of the Alzheimer’s Association, wherever the event was held.

Only one problem, my accountant said—I’d have to get a bookstore to attend each event, so they could take care of the book sales.

If I failed to get a bookstore to support me at an event, I’d have to get a vendor’s license for each venue, and collect the appropriate state and local sales taxes, forwarding that money and all documentation to the appropriate revenue agencies. I’d have to keep meticulous records of my expenses and be sure I worked within the laws of each municipality where I sold my book.

Do you see my dilemma? I was headed for more work than I’d spent writing a “sellable” novel in the first place. That had taken me five years. Keeping track of the sales, taxes, and charitable amounts would take more organization than necessary to find an editor to publish the book. That endeavor had taken an additional two years of my time.


I had to cut all the red tape. I had to simply.

I decided to purchase my own books. I decided to provide those books at every event. To give them away for a donation. That way, I didn’t need a vendor’s license and didn’t need to collect sales tax.

I would suggest a donation amount—more than the cover price. But if someone wanted to support the Alzheimer’s Association and get a copy of my book, I’d take whatever amount he or she would offer.

To entice people to contribute, I encouraged them to make out their checks to the Alzheimer’s Association, making their donation, tax-deductible. Or as my accountant warns—“possibly” tax-deductible.

To further persuade people to contribute, I would promise to match all private donations. And if my book signing took place at a sanctioned Alzheimer’s event, I would guarantee a minimum donation amount to the chapter.

I targeted my first book signings for the Memory Walks scheduled in the Metro Omaha areas in the fall of 2009. I named my work, the “Read to Remember” campaign.

Selling the Idea…

People thought I was nuts. Oh, not my friends or family. Their jaws had dropped open months before, when I’d explained my intention to raise money for a specified charity.

The people I promised to raise money for—the people at the Alzheimer’s Association—they thought I was nuts. I guess that’s a harsh term. It’s more politically correct to say they were astounded and incredulous.

The reaction to my pitch went something like this…

“You want to do what?” they asked. They always repeated my plan back to me as though saying it out loud might make me change my mind.

“You want to give away your books—your own books, that you wrote, then purchased yourself. You want to collect donations in exchange for your books. You want to give ALL the money collected to the local chapter of the Alzheimer’s Association. To OUR organization?”


But wait—there’s more.

(Don’t you love it when the announcer says that in the infomercials?)

2009 Memory Walk in Council Bluff, IA

“You guarantee a minimum donation amount?” the Alzheimer’s director asked.

“Yes, for EACH event.” I answered.

“And you match all donations made by the people buying your books?”

I held up my index finger to correct him. “Technically, and legally, people are not BUYING the books. I’m giving them away.”

“And donors can make out their checks to the Alzheimer’s Association?”

“Yes, I prefer that actually. It’s easier to keep track of the donations.”

“What’s the catch?” they wanted to know.

Honestly, I had a difficult time convincing the Alzheimer’s Association I was not trying to scam them.

I can see their point. I really can. They didn’t know me. I didn’t have any family member with Alzheimer’s. My mother-in-law had yet to show symptoms of dementia. (See photos of her in Read to Remember—Part I.)

Why would someone give away profits— more than the net profits, even more than the royalty amount,—to a charity for a disease that doesn’t affect their family?

I didn’t know.

I wondered if it was a karmic thing. If somehow I “knew” my best friend or my cousin would eventually need the services of the Alzheimer’s Association. For a while, I even worried that maybe I would develop dementia.

But guess what? It wasn’t any of those things.

The more I learned about the disease, the more I knew I had to help. I recalled the clients I’d worked with at Right at Home and the toll the disease took on their families. In 2009, I learned that 5.3 million people in the U.S. had been diagnosed with the disease.

Now that number is 5.4 million. And the number is expected to grow to 14 million by 2050.

I learned that if you live to be 85 years old, you have a 50% chance of developing the disease. Seriously? I’m as likely to get it as to escape it? 50%?


I set my goal to raise $1,000,000 for the Alzheimer’s Association. During the 2009 Memory Walks and through 2010, generous people in the Metro-Omaha and Lincoln areas helped me raise over $10,000.

I know. People are incredibly generous. Especially, in the Midwest. But $10,000 needs two more zeros to reach one million. I’m an optimist and in the scheme of things, I’ve only just begun.

I learned something else as I talked with the wonderful people at the local Alzheimer’s chapters. It’s tough to raise money for the disease. For many reasons.

1) The people who have the disease can’t remember to turn off the stove, let alone organize rallies. And their caregivers are too tired to establish and run fund-raising campaigns.

2) There’s no cure for Alzheimer’s, yet, so people are afraid of the disease. Naturally, they’d rather not think about it.

3) The charity doesn’t have cute mascots like the animal shelter. It doesn’t have a “promise of hope,” like charities raising money for childhood diseases or breast cancer.

But you know what’s on the upswing? Younger-onset Alzheimer’s. Those are the people who get diagnosed before age 65. Some show symptoms in their 30s. Can you imagine a mother who can’t remember to pick up her kindergartener from school?

This is serious business, folks. We can’t hide from this disease any longer.

Change in death statistics for 2012

Every 68 seconds, someone is diagnosed with AD.

Currently, one in seven Alzheimer’s patients live alone. That’s just scary.

Wouldn’t it be great if all people who live to their golden years could live independently, if they choose?

So, how can you help?

You can attend one of my events. (Check back to my website for specific dates and times.) I’ll give you a signed copy of Still Kickin’ and/or Luck of the Draw for a donation. Make out your tax-deductible check to the Alzheimer’s Association.

Please give generously, as much as you can afford.

I’ll match your donation and send the money directly to the local Alzheimer’s Association chapter.

If you can’t make it to an event, purchase my books online through Amazon or Barnes & Or you can save yourself shipping charges and ask your favorite book seller to order my novels for you. The Bookworm at Countryside Village in Omaha is my favorite independent book seller and they carry copies my books.

100% of my royalty check goes to the Alzheimer’s Association.

If you’re not a reader, or my books don’t interest you, then what’s wrong with you and why are you reading my blog? (grin)

Send a check today to the Alzheimer’s Association.

If there is an author reading this blog who would like to join me in giving away your books for donations at Memory Walks in Omaha this fall, contact me. I’ll make room for you and your books at my table. I’ll buy space for a dozen tables if we need it at the Memory Walks. Whatever it takes to raise money to combat the disease and to help the families get the education and respite care they need.

And, I’ll match ALL donations YOU collect using YOUR own books.

If this cause “speaks to you” and you are a published author who would like to start a Read to Remember campaign in your own city, contact me. I’ll work with you to make that happen. Because Read to Remember is not about me or getting people to buy my books. It’s about helping the families affected by Alzheimer’s disease.

We must put an end to Alzheimer’s now.

If you need information about the disease or help for a loved one, contact the Alzheimer’s Association. Check out their website at

Read to Remember–Part I

Tuesday, March 27th, 2012

The first time I worked with a person who had dementia, I was a caregiver for Right at Home. Allen Hager and I founded the company in 1995 with the mission to keep the elderly living independently in their homes for as long as possible. I often took a shift with a client if a caregiver called in sick.

I met Mrs. S, on a beautiful Saturday in May. Our company had been hired to take care of her husband who had cancer and had recently become blind. The family warned us that sometimes Mrs. S didn’t remember to give her husband his medications.

I introduced myself to Mr. and Mrs. S and let them know I was happy to fill in for their regular “girl” Suzie. I offered to make lunch and straighten the kitchen. Mrs. S wanted to visit first and invited me to chat with them in their living room.

We had a delightful conversation. Mrs. S told me all about their grown children whose portraits lined the walls. She explained their son was “biological,” while his older two sisters had been adopted. Trying to make an emotional connection with her, I explained that my husband and I had also formed our family by adopting our two daughters.

She asked their names and ages and was curious about their adoption stories. We had a pleasant chat. All the time I wondered why Allen had misinformed me. This woman was sharp as a Cutco knife. She pulled dates and names from her memory just as quickly as a college history professor.

I made the couple lunch, laundered their sheets, guided Mr. S through his daily exercise routine and took him for a walk.

When I returned to the office I asked Allen if Mrs. S had been misdiagnosed.

“She doesn’t seem to have any symptoms of dementia,” I reported.

“Just wait,” Allen replied. “And don’t let her send you home early. She has a habit of trying to dismiss caregivers before the end of their shifts.”

Two weeks later, I again had the privilege of working with Mr. and Mrs. S. The trees were in full bloom and the couples’ mid-town neighborhood was alive with people tending their gardens and lawns.

Mrs. S greeted me at the door. I re-introduced myself, reminding her I was from Right at Home and that I had worked with her two weeks ago. She enthusiastically invited me in and bade me to sit with her and her husband in the living room. She brought me a cup of tea.

During our chat, she asked about my two daughters. Without any prompting, she retold details of their adoption stories. She politely asked about Allen. We had a lovely ten-minute chat. Then without a verbal hint or physical cue, she stared at me, smiled, and asked, “So what’s the nature of your visit with us today, dear?”


In the time it took for her to take a sip of tea, she didn’t know me. She’d forgotten who I was and why I was sitting on her sofa. Her instant confusion slapped me into reality. This was a stark example of the ravages of Alzheimer’s Disease.

I had other opportunities to work with clients who had dementia. Our company provided around-the-clock care for Mrs. G in her apartment in the independent living tower of an upscale retirement village in Council Bluffs, IA.

Mrs. G was an absolute joy. She told me of her travels to Asia. How she raised her two daughters alone after she divorced in the 1950s. She reminded me that a single-mother was rare in mid-century Omaha. But she had flourished, managing an apartment complex, later buying the buildings to secure steady income for her family.

She was an amazingly accomplished woman. One, now tethered to an oxygen tank because of her decades of smoking. Little by little I saw what happens when the brain is deprived of oxygen. Over the months I worked with Mrs. G, she lost her vivid memories. Her recollections of the life she’d built with her two daughters vanished. She always recognized me when I came, but forgot who I was when she discussed me with other caregivers.

I have to admit, sometimes her comments made me laugh. Like when her regular day-time caregiver, Marlene, told me that Mrs. G questioned why I left Allen and Right at Home to go build houses with Jimmy Carter and Habitat for Humanity.

“Why would Allen let Terry go?” she wanted to know.

Clara Eva Oswald

An Example Closer to Home

Clara Eva Oswald, my wonderful mother-in-law has dementia. We began recognizing the symptoms shortly after her husband died three years ago. Like in many cases, “Grandma” (as everyone calls her) can’t recall recent events, but her long-term memory remains intact.

Thank goodness she can remember me or she might be calling me by my husband’s ex-wife’s name. You see, I came to the Oswald party late, having married Alden just five years ago.

Grandma only remembers events that happened over three years ago.

So, she doesn’t recall the birth of her last three great-grandchildren. We do have to laugh though. Every time we talk about Ashley, who is two years old, Grandma wants to know who Ashley is. When we explain she is Cyndy’s and Don’s youngest child, we see the wheels turning in her head.

Then wide-eyed, Grandma exclaims, “Cyndy has FOUR kids?”

Grandma can’t believe it. She’s astonished every one of the hundreds of times we tell her. Cyndy has four kids.

Grandma now lives in Iowa with our daughter and son-in-law, Kathy and Larry Harvey and their two children, Melanie and Jacob. Grandma’s life is beautiful. Kathy and Larry take marvelous care of her and include her in all their activities. Grandma goes to soccer games, school plays, friends’ game night, and band concerts in the town square. She greets Kathy’s students who arrive every morning for the pre-school class in the Harvey home.

And when Alden talks with his mother and asks her what she’s been doing, she can’t recall. She denies ever going fishing with Larry and can’t remember last weekend’s visit with Cyndy and Don.

“Cyndy has FOUR kids?”

I guess Grandma lives the way many people claim they want to live—in the moment. She always enjoys the concerts, baseball games, and walks in the park. She smiles and claps her hands to the beat of the music. Win or lose, she hugs Melanie and Jacob after their ball games.

Grandma’s life is full. She really enjoys her days. She just can’t form new memories of her activities. She can’t recall those recent, amusing family reunions or simple, quiet afternoons. So, sometimes she gets sad. Sometimes she feels abandoned by her husband who isn’t there anymore. She frets over where Kathy is even when she’s gone only twenty minutes to run to the grocery store.

Life, even a good, safe, care-free one, can be tough for a person with dementia. Sometimes it is for Grandma.

In my next blog, I’ll tell you about the Read to Remember Campaign—my effort to raise money for the Alzheimer’s Association. And I’ll let you know how you can help.

Grandma wears many hats.

Iowa State Fair reminds her of NY when she was 20

At a basketball game with Larry and Jacob


Grandma wants to wear Jacob's volcano project as a hat

Kathy, Melanie, Larry, Jacob & Grandma