Sunday, May 31, 2009

Planning the plan or living the life

It seems like life is all about planning.

Some of us plan the week's dinners, exactly what to pick up at the grocery store, our household chores, who's responsible for what in the family every day or week.

Some of us map out detailed work duties and meeting schedules.

Some of us create elaborate vacation and travel plans that outline where we're going to be every minute, every hour, every day.

We're constantly told to make plans for the future … plan for the kids' education, retirement, even our own funeral.

As a society, we're expected to plan, plan, plan, plan … And those who do not conform by planning are either considered a burden to the rest of us or are chastised or relegated to a lower rung in the ladder of the hierarchy of humankind.

Yes, we do need some plans or the universe would fall into chaos.

And those of us who do plan, plan, plan, plan keep going, going, going, going according to plan until … life doesn't go according to plan.

Is it any wonder why we endure a sudden shock to the system when that happens, when job loss, squabbles, accident, illness or death wields a pencil so big that it erases everything jotted in our daily planners or scribbled on the refrigerator to-do list. And we stare in dismay over what to write or do next.

How tolerable are we to the daily challenges of individuals who have no control over how their day is going to flow? That can and has happened to all of us at some time.

How we make plans to accomplish certain things or go places or meet people but injury or illness shuts us down for the day even before it's even begun?

I think of the many families who cope with a loved one's Alzheimer's, brain injury, stroke, brain tumor-brain cancer or other serious condition, who have the best of intentions to accomplish a lot today, but their loved one's injury or illness didn't get the memo. They had a good day yesterday, but today … sorry, it's not going to go according to plan.

There are the couples who plan to attend the support group meeting but don't show up. There are the families who plan to go to the special events and have made reservations, but they have to cancel. I attended a gathering where a stroke survivor and caregiver were unable to be there, and a hotel clerk seemed a little flustered that we had to rearrange a few things. I explained to that clerk that strokes can change plans. Period.

Sometimes bad things come along and other people are just going to have to understand.

Sometimes good things come along and other people are just going to have to understand.

And sometimes we must seize the unexpected good days to cancel the plan on paper and do something fun and memorable. And thank goodness when we do because that's a far greater accomplishment in life than anything on the official plan.

We plan for everything except the unplannable … hmm, my spellcheck didn't plan on that word in its dictionary.

Friday, May 29, 2009

My whatever has a hole in it

Somebody has dubbed Saturday, May 30 as "My Bucket's Got a Hole in It Day." I just checked all my buckets around the house, and they're all hole-free. Hmm, I think this one dates back to those metal bucket days when the bottoms would rust out.

So, I thought of other things that might have holes in them. One of my stuffed animals, Mr. Moo, has a leak in a seam and is leaking some of those tiny foam beads. Need to sew him up if I could find the sewing basket. Is that what it's called? It's been so long since I've referred to it by name that I've forgotten. Obviously, sewing is not my specialty.

Then I got to thinking about holes in other places …

I've heard recently of a friend's grandbaby who has a hole in his heart that needs the surgeon's hands to repair something so tiny that the typical sewing needle would cause more damage than good.

I thought of two high school classmates who are now slowly mending the holes in their emotional hearts, one after losing her son and another after losing her husband. Not even the most skilled surgeon and seamstress in the world could repair those holes. It takes the love and understanding of family and friends who must remember to listen and offer an embrace for a long time after the formal good-byes because that's the only way the human heart can heal.

I thought of dear friends who battle new holes in their everyday lives as they watch Alzheimer's steal a little more of their loved ones with every turn of the calendar page. This is a void that seems to widen daily, and that's why they need many helping hands to help bridge that cavern that can leave caregivers abandoned.

I thought of the individuals I've met who are trying to bridge the "holes" in memory, speech, physical ability, personality and much more when combatting the cruel effects of stroke, brain injuries, brain tumors and brain cancer. They and their caregivers, too, need a patient circle of family and friends who won't give up on them and leave bigger holes in support when they need it most.

And then I thought of people who must have some kind of hole in their common sense. You know, the family members and friends who suddenly develop amnesia when someone needs some assistance to get through one of the aforementioned or other serious life challenges. And those people who never think before they speak … Don't get me started.

And me? What part of my life has a hole in it? Nothing much right now though Mr. Moo is beginning to leave a trail of little white pellets everywhere I take him. And the hole in my memory where I put that sewing whatever …

Monday, May 25, 2009

The meaning of "mem"

It's strange how the three letters "mem" can be converted into words that bring forth different emotions.

"Mem"ories is a word that provokes, well, "mem"ories, often used in a positive context.

"Mem"orial Day is a day that prompts us to re"mem"ber those who have passed away, originally created to honor those individuals who died in service to our nation, yet a day that has become the universal symbolic moment to reflect.

When it comes to Alzheimer's, "mem"ories can be good or bad, lost or found.

When it comes to re"mem"bering someone you've lost, only you can select the "mem"ories you choose to cherish and the "mem"ories that can continue to teach you many new life lessons every day.

We keep "mem"entos to remind us of special moments.

We collect "mem"orabilia to save money or make money.

We create "mem"os to remind us what to do or tell other people what to do.

Make this the "mem" day of your choosing.

Just make it "mem"orable.

Sunday, May 24, 2009

Alzheimer's: Life is a scavenger hunt

Now, here's an odd date on the calendar … Scavenger Hunt Day. And I got to thinking that this describes the everyday lives of families in which a member has Alzheimer's.

The scavenger hunt goes on for years and started long before there's a diagnosis of Alzheimer's. Unfortunately, those families are not looking for fun and unusual things. They're forever searching for real valuables that individuals with Alzheimer's "misplace" or "hide" for safe keeping … keys, wallets, purses, money, jewelry, important documentation.

And it's so darn frustrating, especially if you're in a hurry. I'll never forget the day when my son was two or three and hid my car keys. I was running late for work and got to the place I was throwing things as I searched frantically. I finally broke down in tears and accepted that I wasn't going anywhere for a while.

To give myself an emotional break before I completely lost "it," I started to collect dirty dishes for the dishwasher. There in a glass were my keys.

Go on a scavenger hunt today for laughter and love, and you might be amazed what you'll find.

Saturday, May 23, 2009

Alzheimer's: Losses we don't immediately comprehend

In the many conversations I've had with family caregivers of persons with Alzheimer's, there's often a common thread that is woven deep within many of the stories …

They're not only devoting countless hours to the care of a loved one. They've had to sacrifice another world they also love: jobs/careers and/or volunteer opportunities. The ripple effect of that loss to the world is staggering.

Family-owned businesses have had to close up shop. Teachers have had to leave the classroom. Professionals have had to exit the medical field. And the list goes on …

If you don't think the entire world isn't paying the price for Alzheimer's, then think again. We not only lose the gifts and contributions of the person with Alzheimer's, we lose the attributes and skills of the caregiver.

If that doesn't make you angry enough to join the fight to defeat Alzheimer's, then what will?

Friday, May 22, 2009

Alzheimer's: Silence is not golden

Silence is not golden when it comes to Alzheimer's.

I've heard so many stories from family caregivers about how they'd give anything if their loved one with Alzheimer's would start chattering again and asking the seemingly endless banter of questions …

Where are we going … What time is dinner …

I don't need to provide any more examples. You know the questions and the answers because you memorized them to maintain your sanity.

Don't sit in silence. Don't allow yourself to forget the beauty of the human voice and that doesn't mean turning on the TV for background noise on some fictional drama and well-worn comedy or the depressing news.

Play your favorite music, even if it's instrumental because there's a song in every melody, even if you make up the words yourself along the way. Plus, you can never anticipate how the music might spark a response from your loved one, including a chorus or two. It can happen.

Buy or borrow books on tape/CD. Listen to your local public radio station because many offer reading selections from popular books.

Now, I know that doesn't take the place of your loved one's voice, but it keeps you connected to the art of the human voice, for which there is always much to be learned.

More importantly, it keeps you connected with the world, which we all need to survive.

And that's how you can take care of yourself, and that's okay.

Thursday, May 21, 2009

We all need a patch for life

On somebody's calendar, it's been decreed "I Need a Patch For That Day."

Hmm, I know there's an explanation for that proclamation out there somewhere, but I got to thinking how sometimes we just need a patch for the holes and tears in our lives.

Two of my high school friends have endured deep, personal, unexpected tragedies in just the last two weeks. The voids are unfair and beyond comprehension. There's no single piece of rugged material big enough to cover those holes at this moment, and even then, the binding stitches would be uneven and shaky.

A dear friend who copes with a loved one's Alzheimer's has gaping holes of silence now in a household that for years was filled with laughter and conversation. She and her husband used to discuss and solve all the world's problems before they'd even get out of bed in the morning. Now he says nothing unless prompted and even then, the responses are never enough to patch the silence.

Each of us has pockets full of tiny patches that we can place in the hands of those who need it most during their daily challenges. Distribute them freely, yet with compassion and purpose. The recipient will hold them and then carefully thread their own needles and stitch them into place at their own pace, even if they're a little crooked.

As someone who can barely thread the needle, I find this sew, I mean so, comforting …

Wednesday, May 20, 2009

Explaining my work to the cats

My cats, Lois and Clark, forced me to go to bed at 10:30 Sunday night. After I had been gone all but one night in two and a half weeks, they decided to seize control of me again.

"Mommy, where on earth have you been?" they meowed in chorus as Lois laid on my right side and Clark took the left.

"Let's see, we went through Kentucky and Tennessee to get to Georgia, South Carolina and Florida. And then I went to Chicago this weekend for stroke camp."

"Stroke camp? What's that?"

"My friends Marylee and John Nunley created Retreat & Refresh Stroke Camp ( a few years after John had a stroke. It's a place where stroke survivors and their caregivers can go and feel 'normal' for a weekend. Survivors meet other survivors and help each other. Family members and caregivers can share the many emotions and challenges they're experiencing. A stroke affects the entire family, and most people don't understand that."

"And what did you do there?"

"A lot of listening for my book because survivors and caregivers need to vent their frustrations and celebrate their triumphs. Their peers understand how important it is when a survivor can walk further than they did six months ago or how their speech has improved and new/old words have been relearned. They also share the pain of how people make fun of them or ignore them. That's made me more determined to write this book."

"So, we're going to have a lot of late nights with you planted at your computer again, huh?"

"Yep. And remember, I can only fit one of you at a time on my lap. I'll post the schedule on the door so sign up now for shifts …"

Sunday, May 17, 2009

Monica's book tour #10 THE END

And the travels continued …

The weekend was family time, but I think Roger was surprised that I wasn't going to be running around doing something else. Nope, this was the time to reconnect to his family on Mother's Day weekend. I had learned my lesson and refused to miss a minute of it.

However, the observer within me did not take a break. My brothers- and sisters-in-law had all grown up, yet they hadn't, in a good way. They were adults, yet still brothers and sisters forever. They each had their own lives, yet they connected as if not a moment had passed.

And never again would I stay away very long …

Monday morning after my Mac laptop computer completely crashed, I flustered my way through my backup PC, which drives me crazy! I dropped Roger off at his dad's and drove around the region to keep spreading the word about the Alzheimer's book and to seek new sources for my other volumes on brain injuries, strokes, and brain tumors-brain cancer.

I made some connections, but more importantly, my mind explored new roads with the rest of the body … since it was along for the ride anyway. I stopped a couple of times to jot some notes and felt good about new possibilities that suddenly made sense after a week and a half on the road. New scenery, new sensations, new sources of input had made this journey worthwhile.

And I didn't even blow a fuse or freak out (remember, I'm a child of the 70's) when I discovered on Monday that a promotional event I thought was scheduled for Tuesday was not going to happen after all.

When I picked him up, I told Roger I was ready to go home though there were some stops we'd make on the way back.

We began the trek home Tuesday after staying Monday night at the home of one of Roger's sisters and her husband and two kids. After some stops on Tuesday and Wednesday to introduce myself and the Alzheimer's book and to get myself a new baby Mac, I marveled at how Roger and I had survived this long journey without wanting to strangle each other.

This was the longest we had been cooped up together in who-knows-how many years, and we only got testy a few times when I knew I was right and when he (said he) knew he was right. But we laughed our way through it all.

Our van, though somewhat disorganized by the end of the trip, was not filled with frustration or exhaustion with each other. In fact, I think we learned to appreciate each other a lot more and gloss over some of those personality quirks that are part of any marriage or partnership. After all, we're looking forward to our 30th wedding anniversary in July and the 35th year since we started dating in August.

Don't tell him, but I actually like him even more after this trip, and after this many years, you don't find many blessings bigger than that. Oh, and I love him a lot more, too.

Maybe it's because we spent half the time saying "What? Can't hear you. Road noise too loud …" and then laughed some more.

This was more than a book tour. It was a life tour.

The scenery was exquisite, the companionship was priceless, the reconnections were life-affirming, the introductions opened many new doors of possibilities.

When we stepped in the door at 3 a.m. Thursday after driving for hours in the rain, we expected a welcoming party from the cats. They just stared at us and announced that we had interrupted their sleep.

Home sweet home. Thank God some things will never change … except the litter.

Friday, May 15, 2009

Monica's book tour #9

OK, now where was I on this crazy trip …

Ah, yes, Friday, May 8, Roger and I left the Universal land of Mickey Mouse and friends in Orlando and headed toward the Gulf side where I was scheduled to speak in the afternoon at a library there and spend the weekend with Roger's family in the Tampa area.

I knew this was no ordinary library … no library is … because I knew this place. It was a facility I had visited nearly every time I had gone to visit my in-laws because my mom-in-law Janice devoured books, and we'd make a trip to return a stack and pick up a new one. She loved cooking books and a variety of non-fiction and fiction volumes. I'd entertain myself in the history and biographical sections until she had made her selections or tired.

The cooking guides were Janice's plate of simple and exotic fare, much of which she could not sample in reality but could savor with her imagination. A damn disease, which had claimed her life in 2000 at the age of 61, had kept her from eating all the things she really wanted, especially the last couple of years.

Now, I had gotten Roger out the door to visit his family about once a year. Through 2000, I had gone to visit once or twice a year since my in-laws had moved there in 1992. However, in planning for this trip, I realized I had been back to Florida only once since 2000, and that was in fall 2002. I was terribly ashamed of myself because I love my dad-in-law and brothers- and sisters-in-law deeply. And I even had a nephew I had never seen. I'd had time to go to Europe and Israel and around the U.S. for writing projects but not interrupted my schedule to go to Florida.

Ouch. I can feel Janice shaking her finger at me from heaven.

I'm telling you all that so that you'll better understand what happened when we arrived in town and went straight to Roger's dad's house, where I'd drop off Roger and go on to my presentation. I greeted and hugged my husband's father, chit-chatted for about 10 minutes, and asked Roger to get whatever he needed out of the van because I had to leave.

HAD to leave.

Not because of the clock. I simply had to cry … and I did when we stepped outside. My heart was breaking in seeing that he had aged, that he was much more frail. Roger hugged me and said that his daddy has slowed down. I needed no convincing there.

And I cried all the way to the library where I finally dried my eyes and gathered my stuff to go inside and talk about "I Almost Forgot to Laugh: Coping with Alzheimer's and Dementia." Mary, the librarian, was so wonderful and accommodating, as were some of the members of the sponsoring Friends of the Library who put out a nice spread of iced tea and snacks for afterward.

I learned much from speaking to this group of individuals who have dealt with or are now facing the terrible disease of Alzheimer's. They shared with me some of the light and memorable moments that have sustained them during the more demanding minutes or hours. I encouraged them to discover their loved one's memories and personality before they vanish, to not let good moments slip away.

I met some wonderful people, talked in more depth with some afterward, and make some great connections. Even sold some books but more importantly, filled the coffers of my passion for writing and speaking to beyond its capacity.

Add to that a vow to be a better and more attentive daughter and sister-in-law, and I bet that library had no idea of what they had put into circulation that day, a whole new volume of my life.

Monday, May 11, 2009

Hug your kids, your spouse, everybody you love

My travels have been smooth, whereas my technology has not.

The "old" me would have thrown a hissy fit when my Mac laptop hard drive crashed Monday morning right after I posted the last of the #8 accounts. My in-house, traveling computer repairman, Roger, looked at and listened to it. Though he doesn't do Mac and is strictly a PC man, he still knows the ominous sounds and sights.

My laptop has served me well. I bought it right before I went to Europe in fall 2004 to learn more about the Holocaust for a book. It was my sole source of comfort as I typed in an endless description of my travels by myself through Germany, the Netherlands and Poland, including the Auschwitz concentration camp. I didn't talk to anyone back home during that two-week trip, so my laptop absorbed all my emotions and didn't short out when my tears splashed on the keys or when my fingers pounded in anger at all I had witnessed.

It went around the United States with me when I interviewed Holocaust survivors and cried more tears and captured the priceless moments I spent with them in extraordinary personal classrooms. It was a constant companion when I took a rare vacation. It was there when I journeyed to Myrtle Beach for a long overdue trip of self-discovery to shed grief that had haunted me for more than six years after the loss of my mom-in-law.

This piece of equipment went to Israel with me and collected all the magic, inspiration, images, friendships and endless cycle of emotions that filled me as I was one of two gentiles with 23 Jewish travelers who toured the country. It cooperated and patiently accepted volumes of words and thoughts that I sent home to family and friends to explain the spiritual journey that had transformed me forever.

It was my lifeline with the world via e-mail and researching book topics as it traveled many a day around Peoria. It had been bumped and dropped and scratched and bruised, though never in anger, just sheer clumsiness or not paying attention. The CD drive quit working more than two years ago, but my laptop still had plenty of life as Roger pieced it together as best he could to keep it hobbling along.

It had gone to bed with me hundreds of nights when my brain refused to shut down and had to keep creating and overflowing with useful and useless thoughts and ideas. I think I slept with it more hours than Roger.

It had been the one on which I had written several books, there with me hundreds of hours.

Yes, it had been faithful and loyal far longer than I had expected. And you'll notice that I haven't used the "d" word in describing what has happened to it.

I can't and won't trivialize such a term now because a piece of equipment isn't a living, breathing person.

I can't use that "d" word as a high school friend buries her 25-year-old son today.

The fragility of life has taken on a new meaning this week as I'm eager to get home now and hug my 26-year-old son and hear how he sacrificed sooooo much to stop by the house every day and take care of the cats while we've been gone and how he didn't have time to check my post office box or how he forgot to do something else. Yada yada yada and I'll love every second of it while I smile at his little mustache and goofy goatee and hug him extra for reasons he'll never know ... unless he decides to read today's entry on my blog.

I can get a new computer, and luckily I had backed up almost everything. However, nothing can replace the emotions I have experienced and the lives that have touched me because I chose to live life rather than just write about it. I merely described and saved the memories via the sturdy though well-worn keys.

Today's message is to hug your kids, your spouse, your significant other, your parents, your siblings, your friends ...

All y'all (sorry, I'm in Georgia) will have to wait until tomorrow to hear the rest of my journeys. You have a more important one to fulfill today.

Monica's book tour #8 part 4

Finally, here are the rest of my adventures last Wednesday … after wishing a belated Happy Mother's Day to my family and friends who have earned that well-deserved holiday …

My fond and comforting memories of Myrtle Beach center around four days in November 2006 when I met someone there, the sister of a friend. Susie and I laughed and cried and consoled each other on a journey through grief, the loss of my mom-in-law more than six years earlier and the loss of her boyfriend barely six weeks before that weekend.

For the "rest of the story," you'll have to read my new book, "Meet Me in Myrtle," which I'll release mid-summer …

What I can say is that my husband Roger wanted to visit the place where I had experienced a number of epiphanies. He yearned to have breakfast at the little diner where Susie and I had hung out every morning to engage in frivolous and frank conversations. He had to see the stretch of beach where Susie and I walked and talked and discovered the incredible answers to some daunting mysteries of life …

And I showed him all that and more Wednesday evening and Thursday morning as we created our own special memories in Myrtle. We sat outside under the full moon that night … walked along the beach the next morning at sunrise … had a great breakfast at the popular little diner … and then …

Quickly left town to avoid the thunderstorms heading our way! But it was fun while it lasted!

Thursday was a travel day down the east coast of South Carolina, Georgia and Florida. I told Roger of my memories of my dad and me driving to Jekyll Island for spring break when I was in high school and how beautiful it had been. So Roger and I drove onto the island and just kept driving around because the bugs were so bad that we didn't dare exit the car. I got out only once to shoot some photos and quickly abandoned that venture because shooing them interfered with shooting photos …

Okay, Jekyll Island folks, I'll be back during the bug-free season …

After that, I stayed at the wheel until nearly midnight when we reached Orlando and stayed at a hotel across from Disneyland or is it Disney World … Heck, I don't know. It's all Goofy to me …

Saturday, May 9, 2009

Monica's book tour #8 part 3

Also from Wednesday …

That morning, Roger and I decided to head to Myrtle Beach, S.C., to stay that night. Why? Well, of course, it's a beautiful place. I had been there in November 2006. Roger had never been there, but he wanted to go because of what happened to me that weekend two and a half years ago.

Stay tuned for more on that …

After the stop at the community center, we drove through South Carolina, where we detoured to an Alzheimer's Association office. There I met an angel with whom I clicked immediately. She understood what I’m trying to accomplish with my book and the very personal approach I take with my writing. She was an ordinary person, and I just loved her!

Sometimes that’s really refreshing when some people put on airs that they know more than you do and want you to be sure that you understand that. Ordinary people. What a gift they are to the world!

And I will have much more to share about that meeting later this summer :-)

Welcome to Myrtle Beach … there were more than enough signs extending that greeting as we entered this coastal city. I was at the wheel and many emotional waves splashed me with feelings of comfort, security and deep spirituality. This was the place where my life had been transformed two and a half years earlier when I met someone here …

No, I didn't have an affair!

Sorry, got to run and will finish later!

Friday, May 8, 2009

Monica's book tour #8 part 2

To quote the wonderful Paul Harvey, here's the "rest of the story" from Wednesday's #8 …

Roger and I wandered our way through one Georgia town, following our detailed directions to the community center where I was scheduled to talk at 11 a.m. about coping with Alzheimer's, which coincides with my book. I found this organization during my Internet search a month ago when looking for places to reach new audiences and hopefully help some families as they deal with the daily challenges of Alzheimer's and dementia. At the same time, I eagerly awaited the opportunity to learn more from the individuals in attendance.

Now, I mentioned the other day's blog that I had contacted the center again, and my contact apologized for forgetting that I'd be there. We laughed about it, and I told Roger later that I just might be talking to myself on Wednesday. And that was okay and good practice, if nothing else.

As Roger parked the car and joined me on the walk inside, I knew this community center would be considered on the “wrong side of the tracks” by some people, but it’s a lifesaver for others. As I turned the worn doorknob and opened the creaky screen and interior doors, I first saw a group of elderly men settling in for a long stretch of card playing.

I was reassured that I was in a place where everybody truly knew each other’s names. This was a home that fed souls hungry for human connections. These gentlemen all knew each other, which provides a huge source of companionship, friendship and social interaction that is so desperately needed.

I walked to the office closest to this main meeting room where I introduced myself to Sherrie and explained that I was a half-hour early but not to worry because I could keep myself entertained.

Well, 11 a.m. came and went and no one came in to hear my presentation, and that was okay because Sherrie shared her life experiences with me, and that was a far more precious experience. A staff member for 19 years, Sherrie told me of her mother who had dementia and how her mom wanted to live with her only daughter, but the place where she was living was the best place with caring people who provided more companionship than Sherrie could give her at home.

Her mom had died on Mother’s Day 2005 and this was the week of the fifth anniversary of her passing. She talked of how her family lifted her along with her strong faith in God and a reassurance that her mother, along with her father who has passed away a few years earlier, are in a good place with the Lord.

I could not help but be uplifted by hearing stories of the bonds Sherrie has made through the years at this center. She pulled out a file of old printed memorial service programs and shared with me a special memory she had of each and how the sweet and funny memories they had so generously given her. She said this is her ministry.

I wish we all could find our ministry the way Sherrie has found hers, and I told her I had found mine, writing these books and finding places like hers. She smiled.

And what a loving woman she was to give me a bear hug when I left. I guess there’s a reason why no one else was there to hear me talk, because there was someone there for me to listen to.

Thursday, May 7, 2009

Monica's book tour #8 part 1

It's been kind of a crazy couple of days so I'll tell you more about Wednesday later today because of a special detour Roger and I took. We're hitting the road right now to avoid the thunderstorms getting ready to hit where we stayed Wednesday night.

A few things didn't work out as planned … but some better things happened. Sometimes, it's supposed to be that way!

Wednesday, May 6, 2009

Monica's book tour #7

As Roger and I worked our way across Georgia, I met some really incredible people Tuesday …

Stopping at an Alzheimer's Association office, I talked to just a few of the dedicated individuals who work so hard to help families learn as much as they can about this horrible disease. We talked about the current economy and how it's making it even tougher for some families in their caregiving roles. I explained that families don't need statistics to tell them how challenging being a caregiver is, because they already know that. They need words of support and practical suggestions and solutions to get through the day or hour. This is what I've committed myself to.

Earlier, after Roger told the hotel clerk about what I do and my book, this gentleman said he had lost a relative to Alzheimer's and how horrible it had been, and how this disease makes no sense. He was right. Alzheimer's and dementia do not make sense and honor no boundaries. From individuals who have little schooling to those who are gifted and highly educated, Alzheimer's preys on everyone. From the poor to the rich, Alzheimer's doesn't care as it plows into our lives …

On this journey, I'm also learning and making as many connections as I can for my upcoming books on stroke, brain injuries, and brain tumors-brain cancer. I was very fortunate to be given a personal tour of one of the premiere medical and rehab centers in the country for the treatment of brain and spinal injuries.

Amazing. Simply amazing and inspiring and thought-provoking … Truly hard to describe but you know I'm going to try :-)

This facility has an ABI (acquired brain injury) unit, which treats individuals who have brain injuries that result from external trauma to the head, strokes (which are also considered a brain injury) and other conditions, including diseases, that injure the brain in one way or another.

I saw rooms buzzing with therapists interacting with persons with brain and spinal injuries. I witnessed a young man on the amazing machine that enables his body to walk, with the assistance of a team of therapists, a device I had seen demonstrated on TV by the late Christopher Reeve during his unwavering and determined fight to conquer his spinal injury. Chris may have not reached his goal, but he inspired the science and medical community to dig deeper, harder and faster to find ways to help others.

Amazing. Yep, that word still echoes within me. After talking with personnel and seeing everyone in action, I'm more determined than ever to complete these books and reach out to families who need that boost of support.

Looking forward to today and tomorrow. So much more to see and hear and absorb. Good thing I wore my track shoes …

Tuesday, May 5, 2009

Monica's book tour #6

Monday was not an ordinary Monday.

Roger and I hit the road again, heading back to Atlanta after the weekend in Macon, but not before we stopped at the headquarters of Pilot International, the service organization we both love and that offers the volunteer opportunities we enjoy doing together.

It was a WOW moment as we drove up the quiet street to the new structure about which we had read and heard so much and have supported financially. Photos don't do it justice because it ignites such feelings of pride and awe. We saw staff members we have come to love and appreciate, folks who give 1,000 percent to Pilot. We saw the historic artifacts about which we had read or only seen in photos. To touch our organization in this way made us more determined supporters.

And the Heritage Garden … awesome, beautiful and breathtaking. All the inscribed bricks and benches with familiar names of even more people I have come to love, admire and respect.

You want to know why I love Pilot so much? Aside from being the "thing" Roger and I do together, Pilot introduced me to what has become part of my life's passion, assisting individuals and families coping with brain-related disorders, injuries and illnesses. Without Pilot, I likely wouldn't have connected with the Alzheimer's Association and the growing list of groups and individuals I'm encountering every day.

I love Pilot!

Monday, I also connected via phone and e-mail with some representatives of organizations that assist stroke survivors and/or persons with brain injuries here in Georgia. Hopefully I'll be able to meet with all them on my way back through after I finish in Florida. Next week will definitely be a rush!

And if you're ever in Norcross, GA, be sure and stop at the Georgia Diner for some of the best homecooked food you've ever had and the friendliest and funniest people you could ever hope to meet. Yum …

Monday, May 4, 2009

Monica's book tour #5

Airplane camp was over. It was time to pick up my boy, uh, my hubby Roger.

And I realized that I kinda missed him as his mouth started flying faster than his fleet of planes to tell me every detail of his adventures … who he met, what he did, when he flew, what he ate, and even how he paid $5 for a shower on Saturday. I particularly appreciated the latter because we did have more than an hour in the van on the way back to the hotel.

Yes, I missed him because I better understood how incomplete and empty I am without him.

I've seen so many couples drift apart through the years of marriage, and I marvel at and appreciate how Roger and I have grown closer as we near our 30th wedding anniversary this summer and the 35th anniversary of our first date.

That's something I celebrate deep within me more and more as I meet many couples whose lives together have been challenged and threatened by Alzheimer's, brain injuries, strokes, brain tumors-brain cancer, and other catastrophic diseases and events.

I'm one lucky girl.

And so very, very grateful for so many things … especially that $5 shower he took or I would have tied him to the top of the van.

Ain't love grand?

Sunday, May 3, 2009

Monica's book tour #4

Saturday was a quiet day … I spent most of it in my hotel room reading or surfing the Internet. That's all I wanted to do … I think.

However, I did stop occasionally and say aloud, "Hey, you can do anything in the world you want! What's it gonna be?"

And I was genuinely stumped. And that was genuinely frustrating … for me. Would it be for you? Let me know.

Oh, and I also transcribed several hours of interviews for a book. That actually felt good because that's less waiting for me at home. And I discovered some other folks I want to talk to and places I want to visit on this trip. And I did organize some paperwork …

I guess Saturday was a work day of sorts, and that's okay.

Just don't tell Roger because he had given me explicit orders to take some R&R … rest and relaxation … Hmm, I can honestly say I took some R&R … research and recordkeeping. Yeah, that sounds good!

Remember, that's my story and I'm sticking to it!

Saturday, May 2, 2009

Monica's book tour #3

Friday was a day of hurry up and waits, getting lost, chillin' and sweatin', solitude, memory loss, and some nice people and annoying people …

Hurry up and waits … I spent most of the morning on the phone trying to set up times to meet with folks at rehab hospitals. I talked mostly to voice mails. However, it was great practice to make sure I was saying my name and cell phone number clearly and slowly and repeating it at the end. So, it was hurrying to make all the calls and waiting to get answers … zzzzzzzzz …

Getting lost … Somehow I butchered my sense of direction and ended up taking a really loooooong tour of I-75 in Macon, GA. I thought I was going the right direction to get back to my hotel. And I was so prepared for the day that I forgot the big print map in my hotel room and only had the small print one in the van. I stopped several times to study it and thought I had it all figured out and then again was going the wrong direction.

I could have indulged in some road rage and screamed a tune in my vehicle, but I wasn't missing an appointment or holding anyone else up. So I tossed frustration out the window and stopped … to shop. For those of you who know me, I'm NOT a shopper, so how I found solace in this activity, I'll never know. But I only bought a few things, which eased my conscience …

Chillin' and sweatin' … I got plenty of exercise getting and down adjusting the hotel room temperature. I just need some air moving more than anything. All I could find was low, medium, high, nothing marked "perfect."

Solitude … It's a rare day when I'm not with somebody I know, and this was one of them. With Roger fighting bugs at the model airplane contest, I was truly alone and by evening wished I was back home talking and laughing with friends. Miss you folks!

Memory loss … Now, I won't say where this is, but the place I'm supposed to talk May 6 forgot I was coming. I was reconfirming everything with the gal with whom I made all the arrangements, and she laughed and said, "Oops, we forgot!" So, I may be talking to myself Wednesday. That's okay. I can use the practice …

Some nice people and annoying people … Southern hospitality is true to its name. I've met some really nice folks who are helpful and inquisitive. And then there was the gal in the medical office I stopped …

"Do you have a social worker or someone who works directly with your patients?"

She stared at me as if I were an alien. "No ma'am."

"Do have you anyone who assists patients with planning their treatment or follow-up care?"

"No ma'am." And she got up and walked away while another gal looked at me from her desk.

Now, the first gal came back to her post and seemed surprised to see me still standing there.

I'll try one more time … "You have no one who works with patients?"

"No ma'am."

So, I gave up. A medical practice that has no one working with patients …

I took the elevator back to the first floor to leave. Now, on my way in, I passed a lady on a gurney and a young man who had just wheeled her in. On my way out, this young man was talking the woman through all the motions to get her off the gurney into a wheelchair. They were blocking part of the entrance, but that was okay as I watched the scene closely and nodded to reassure them to take the time they needed.

I'm not sure if the woman had had a stroke, but I knew it was something that had affected her brain and kept her body from doing what she wanted it to do. Her eyes remained focused on the floor as it was clearly evident that she was concentrating on every movement. Her companion did not push, only coaxed. She knew where she was going and how she needed to get there. She was going to control what she could, and if the whole world had to wait on her, then let 'em wait.

And I waited because I was in a real-life classroom. I learned much in these three or four minutes … how we need to slow down, how we need to listen, how we need to appreciate the things most of us take for granted, like putting one foot in front of the other, controlling our own movement, making our schedule, and not having to rely on anyone else.

Life lessons come when you least expect, so keep your eyes open and your patience intact.

Friday, May 1, 2009

Monica's book tour #2

After driving through the back hills of Georgia Thursday, I've decided that God must have accidentally cut His finger while creating this part of the country. The red clay has an undeniable beauty and is mesmerizing to someone from the North who is surrounded by black soil, dirt, no, actually mud from all the rain that is still saturating central Illinois.

Is the ark done yet?

And why was I passing through the Georgia countryside? I dropped my husband Roger off at his model airplane contest near the Andersonville Civil War site and will pick him up Sunday evening after I've achieved and learned as much as I can concerning Alzheimer's, brain injuries and strokes.

A month ago, Roger decided he would "rough it" with a tent, sleeping bag and other such luxuries along with a million other model airplane enthusiasts. Now, Roger hasn't roughed it since his Boy Scouting days, other than the time he and our son Gordo slept in the van for an airplane contest and had to keep the windows closed because of all the bugs and run the air conditioner every two hours or so to keep from suffocating.

Now, as I write this from the comfort of my hotel room in Macon, I have to admit that I actually did feel sorry for Roger. God love him, but he's no nature boy. He bemoans the arrival of grass that has to be mowed and the raking of the leaves. And to watch him pitch his tent was amusing since he'd never put together this type before. However, the engineer in him refused to give up, and I was quite impressed that he figured it out as quickly as he did … as I sat watching from my foldable chair.

As we moved his belongings into the tent with his air mattress, I was already getting a headache from the whirly whine of the miniature airplanes flying nearby. I knew I would go mad if I listened to that much longer. On the way to the event, I had told Roger to hurry it up. He said, "What are you going to do, dump me off?"

"Yep. Gonna roll you right out the door as I drive by."

"I don't think they have a ramp to catch us."

"Well, too bad." Insert evil grin and laugh.

Now, I needed to tell you that so that you understand what happened when I left. He thought I was going to walk with him among all the flyers to look at the airplanes … even as I'm climbing into the driver's seat.

"Aren't you going to go with me?"

"No." I looked at the only man I've ever loved … all adorned in his Army green shorts with tons o' pockets, and camouflage hat to protect his shiny, bald head from sunburn, his glasses, and salt and pepper beard and mustache.

"Oh, I thought you were going to see the line of planes with me."

I sighed. "No, I've got more than an hour drive back to the hotel, and it's already 6:30. Remember, I'm working on this trip."

"Oh …" I think the reality finally hit him that I really was "dumping" him off despite the fact that a number of other pilots' wives were standing by their man … and ducking at the appropriate times to avoid the planes.

I sighed again. "If you really want me to, I will —"

"No, no, you go."

"You are here to have fun. Go do everything you want to do. If there's something you want to buy, go ahead, and we'll figure out how to pay for it later."


As I left my hubby with the puppy-dog eyes, I didn't feel guilty. It was like leaving a kid at camp that is a bit scared at first … until he joins the other kids and forgets who mom and dad are. I knew I'd have trouble prying him out of the place on Sunday evening.

I had insisted he keep the cooler and forced him to go through the boxes of food and supplies we had packed for the trip to make sure he had enough to eat and drink. He only took a few energy bars I pushed on him, and he reassured me that everything he would want to eat and drink would be available all weekend.

I'm a woman, and I knew better, but he's a man and he knows everything.

Ten minutes after I leave, my cell phone rings. It's Roger.

"Hi, just checking to make sure the phone worked from out here."

"Yep, I can hear you clearly …"

"The concessions closed at 6:30."

"Do you have enough to eat?"

"Yes, I have the bars …"