Thursday, April 30, 2009

Monica's book tour #1

Greetings! Welcome to the first of two weeks of posts about my journey through the great states of Georgia and Florida to promote my coping-with-Alzheimer's book and gather more information for my upcoming volumes on brain injuries, strokes, and brain tumors-brain cancer. This guarantees to be a most unique and totally unconventional book tour because I have no staff or PR person blowing a bugle ahead of my arrival to bring out the cheering crowds and their checkbooks.

I'll explain the many methods of my madness along the way …

Our van looks like a combination bookstore and hobby shop, with my books and my hubby Roger's model airplanes for the contest he's entering in central Georgia this weekend. Heaven forbid if any of my books crumples any of his planes!

We made it from Peoria, IL, to the east side of Nashville, TN, in a little over eight hours.

And I'll tell you more later after I get some sleep … zzzzzzzzzzzzzz …………………

Tuesday, April 28, 2009

Alzheimer's: Be somebody's hero

A few years ago, there was a show on TV called "Who Wants to be a Superhero?" Contestants created unique and sometimes wacky costumes and the super powers that came with the name they selected.

Alas, they could not actually fly or fun stuff like that, but it was a wonderful exercise in getting past some fears and revealing another side of themselves they may have not shared with the world before. They became heroes to many followers and devoted family and friends.

Well, you need not wear a cape to be a hero to a family battling Alzheimer's, only a pair of gloves to help weed out the garden.

You need not have superhuman strength, only the muscles to carry in some groceries.

You need not have supervision, only the eyes to see what little things you can do inside and outside the house.

You need not have superhearing, only the patience to listen.

You need not have the physique to wear the obligatory superhero tights, only arms that can embrace someone who needs a hug.

Be a superhero to an Alzheimer's family by being there.

Save the day by remembering them.

Saturday, April 25, 2009

Alzheimer's: Quality and enjoyment of life

“I found a note he’d written much later, but he said in very misspelled, grammatically incorrect words that he had been diagnosed with Alzheimer’s, and it had affected both his quality and enjoyment of life.”

I’m a writer. I feel great sadness every time I read this quote from a caregiver.

Wait, I’m human. I feel greater pain every time I absorb this.

Imagine those feelings of loss and helplessness trapped inside you, desperately seeking an outlet, a field of expression, that makes sense to you … while the rest of the world seems to grow smaller by the day … a life where a rich abundance of quality and enjoyment slowly vanishes from view and touch.

You may think a loved one is oblivious to the world around them in the veil of Alzheimer’s, but we never know just how much they may crave the voice of someone reading only to them … have a child or grandchild practice their reading skills—or refresh your own—and focus on this prized audience of one.

That’s an experience YOU will never forget.

Friday, April 24, 2009

Alzheimer's: Maintain dignity

“I honor and respect him and want to maintain his dignity.”

Dignity. That’s a biggie. Dignity is one of those things that separates us humans from the beasts.

According to the dictionary …

dig·ni·ty noun
1. a proper sense of pride and self-respect
2. seriousness, respectfulness, or formality in a person’s behavior and bearing
3. the condition of being worthy of respect, esteem, or honor
4. the respect or honor that a high rank or position should be shown
5. a high rank, position, or honor
6. a dignitary (archaic)

Hmm, those official definitions don’t quite cut it for me. How about this one example …

I believe dignity is not ignoring the person with Alzheimer’s when they’re part of a group of people, even when they don’t say much … because they will look around the group for eye contact, any eyes willing to meet theirs for an all-important instant or minute to reaffirm that they’re there, not alone, not forgotten … even when they can’t find the words to contribute to the conversation.

Yes, dignity is a biggie.

Thursday, April 23, 2009

Alzheimer's: Old dog, new dog

My friend announced the other day that they had a new dog … at least it was suddenly new to her husband who has Alzheimer's.

He asked her when they had gotten the dog. Not too long ago, she explained cheerfully.

Good for her! Honestly, how else are you going to respond to a question like that when this pet has been a member of the family for a long time?

Don't get angry. Don't grieve another loss.

And when the husband said that HE seems like a nice dog, the wife simply replied, yes, SHE is.

Play the game. It makes it more bearable.

And my friend and I ended up laughing hysterically on the phone about this. We were not laughing at her husband, but at the circumstances that have presented themselves.

She can cope by …

Introducing the dog every day to her husband: "Honey, look what I've got! What should we name her?"

Marveling every day at how affectionate the dog is: "Honey, look, she loves you already, just as if she's known you all her life."

Taking on the role of a humanitarian: "Honey, look at what I found wandering the streets! She just needs a good home and a safe place to live. Don't worry, I'll take care of her."

Though he may not remember his pet's name—or its sex—that's okay because he will fall in love with her anew every day … and she will love him unconditionally and take her usual place alongside his chair every day.

Now, that's a love story for the rest of us to remember.

Wednesday, April 22, 2009

Alzheimer's: It was so gradual

“It was so gradual. I had seven children to care for and was working out of the home. When something went wrong, I made adjustments.”

Alzheimer’s is sneaky and downright devious. It finds corners to hide in as it carefully plots its takeover of the brain … cell by cell, so quietly that we can’t see the changes day by day or even week by week for several years.

Because we can’t see what's happening inside our loved one’s head, we automatically make those little adjustments or fill in when something’s forgotten or lost. Hey, we all forget and lose things! How many times has someone helped us when we plead temporary insanity? That’s life!

And in the challenge of just getting through the day, we often can’t see gradual … until we’re tripping over it … blaming that “thing” in our way and not willing to admit we weren’t watching where we were going.

And Alzheimer’s celebrates another victory and plans another damn invasion …

Tuesday, April 21, 2009

Alzheimer's: Don't let generosity bankrupt

“She had greatly impaired judgment in financial matters and responded to every charitable mailing.”

Alzheimer’s and dementia have been the evil culprits that have bankrupted many a parent, grandparent, uncle, aunt or friend. Keeping track of personal finances is a big enough pain without the confusion and forgetfulness that these conditions often bring.

Families have a responsibility to monitor the financial behavior of their members to keep them from ruin. Those with Alzheimer’s or dementia may not realize where their money is going or that they’re spending beyond their means or being overly generous with charitable causes.

Be pro-active by stopping mailings from organizations that send requests for money frequently. End “whatever-of-the-month” clubs that automatically send items unless cancelled. Check the types of magazines your loved one is receiving and cancel unnecessary ones or all if he/she is not reading them anymore.

Tiny battles now can save your loved one from losing the money they need to live a comfortable and safe life in their final years. They deserve that. Wouldn't you?

Monday, April 20, 2009

No better way to spend time #2

Watching the world go by from the front porch steps continued …

All this while my friend and I talked about what was beautiful and annoying in life … ridiculously funny and enormously heartbreaking … full of innocence and tainted with reality … fair and not fair.

My friend marveled at how someone the other day recognized her after a number of years and what a joy it was to revisit that ordinary time and place again … and how that person still appreciated her. She couldn't believe it!

I wanted to say, "Well, duh! You are quite memorable for all the right reasons!"

But this was a time to listen … to this symphony of a single human voice, the occasional chirp of a bird, the rustle of plants giving birth again, the gentle panting of a content dog, the crescendo of a bicycle hum before it fades in the distance … the breeze, the air that feeds our lungs and cleanses our minds.

Yes, I should have been other places doing other things during these waning hours of a Friday afternoon, but there was no better place to revitalize my soul than with a friend on the front porch in an older neighborhood full of character and something new to see every moment.

Next time, though, I'm bringing a pillow for those concrete steps. My mind can linger forever, but my tush can't.

Sunday, April 19, 2009

No better way to spend time #1

I did something Friday that I haven't done in a long time: sit on the front steps with a friend and talk and watch the world walk or drive by.

And there was no better way to spend an afternoon.

The long-anticipated spring warmth promised and delivered comfort whether you chose the sun or shade. Luckily the porch steps were in the shade when my friend invited me to sit beside her. I don't do well in the direct sun, even with my big old shades that completely cover my regular glasses.

It had been months since I had sat outside, period, but it was as if I was reintroduced to Mother Nature and mankind all in one sitting as I observed the budding trees, the growing grass and the seemingly overnight explosion of flora.

It been even longer since I had watched children get off the school bus at the corner and walk home, alone or in clusters. Listening to their chatter and laughter reminded me of 17 years ago when my son was in fourth grade and was so excited that he got to ride the bus to and from school for the first time. Why? Because his mom had lost her job in January 1992 and could finally stay home to send him off to school and greet him after the final bell.

And all this while my friend and I talked …

More tomorrow.

Thursday, April 16, 2009

Alzheimer's: A beloved Grandma

“My grandma and I were very close. I would help her with daily activities, and she would give me a shoulder to cry on when I was upset.”

Alzheimer’s robs us of a loved one who used to respond to our everyday and special questions … someone who knew exactly what to say to make us feel better … someone who used to share their highs and lows with us.

While they struggle with, or eventually forget, the basics of communication, which make our human relationships unique, they have left us in one respect, even if their physical body survives for several years. That creates a void so deep within us that we often struggle for a long time with how to replace it.

Resist the temptation to fill it with food, alcohol, drugs or other self-destructive behavior. Fill it with other individual connections that lift you and affirm you as a human being. That’s what we’re here for.

Wednesday, April 15, 2009

Alzheimer’s: Lack of reasoning

“Lack of reasoning and common sense.”

We all have days when it seems our common sense has taken a vacation. We all have moments when we wish our reasoning skills had not abandoned us and left us in an embarrassing situation. We see it in ourselves and vow to make it better next time.

However, with a disease such as Alzheimer’s, some of the earliest symptoms we witness in someone are major lapses in reasoning ability and common sense reactions to everyday life. We often explain that away with stress or some kind of physical ailment. It often isn’t until an official diagnosis of Alzheimer’s that years of faulty judgments begin to make sense.

Don't put off your concern for one more day.

Tuesday, April 14, 2009

Every pity party needs a friend and dessert

We are human. Therefore, it's impossible to have a perfect day, though there are many near-perfect or pretty good ones.

We are human. Therefore, some days will suck big time.

We are human. Therefore, it's okay occasionally to have a pity party to get anger, frustration, fear, and other uncomfortable feelings out of our system … and remind us just how blessed we are almost every other day and compared to many others in the world.

We are human. Therefore, we should not throw a pity party without inviting at least one good friend who will listen and offer, as needed and requested, words of comfort, cheer or "give 'em hell!"

We are human. Therefore, every pity party needs refreshments and other necessities of life.

Dear friend, what time does the party start and what shall I bring … regular or sugar-free, regular or decaf, regular or low sodium, regular or non-fat, regular or diet …

I'll take care of you. That's what pity party pals are for … because we're in this human thing together.

Monday, April 13, 2009

Alzheimer's: She could not be left alone

“On my father’s deathbed, he told me my mother was forgetful. I observed her and realized she could not be alone.”

That’s a tough and startling confirmation in what is already a stressful situation. However, it’s not uncommon for spouses to “cover” for another’s forgetfulness or unusual behavior to avoid worrying adult children. Is it love or embarrassment or both that prompts this mask?

Sunday, April 12, 2009

Look Up at the Sky Day

Look Up at the Sky Day seems to be marked at a perfect time this year, with the seasons of Easter and Passover celebrated at the same time.

No matter your religion or whether you're not the religious type, it's a good time to look up at the sky to witness the changing of the seasons, to try to comprehend how blue skies can blanket us and how clouds can entertain our imaginations and just how small, yet important, we are in this vast universe.

We can pray, seek inspiration, laugh, look within, gaze upward at the miraclous sky. No wonder we embrace that cliché, "The sky's the limit."

However, the sky's not the limit. We're the only limit to ourselves when we truly look at the sky because we have vision and power beyond what we can see.

I think I'll don my sunglasses and stretch my 5 feet 1 and a half inches a little more today no matter what the spring sky brings. Hope to see you there.

Saturday, April 11, 2009

The 8 track tape memory of my mind

It's time to celebrate 8 Track Tape Day. Yippee.

Growing up, my music money was invested in records and cassette tapes. I was not a big fan of the 8 track tape era because it seemed like all my favorite songs split between tracks and the actual tapes were more fragile as they seemed to clunk loudly through the player. My mom had a couple dozen 8 tracks she liked to listen to but gave me the unit and tapes a number of years ago. Alas, time has not been kind to the wide strips of magnetic memories.

I got to thinking that the 8 track design is kind of like our memories. The 8 track tape would run continuously, looping until the end of time if we had allowed it, smooth until it reached a limit and cut off our favorite song midway, putting us on hold to continue singing along until it moved to the next track. We all have those pauses in life when we forget something, those frustrating moments when we know we know but the answer, the name, the direction, the step, seem to vanish, and then return like that click of the next track.

And I think it's a sad, but true description of Alzheimer's, dementia and memory loss, when the pause between songs grows longer and eventually the tape breaks without warning … is pieced together temporary at best … and then begins to crumble.

Families may not be able to repair the golden tape within the one they loved, but they can recreate the harmonies of this life to share and pass along for generations to come because the beat of life does go on.

Friday, April 10, 2009

Alzheimer's: What becomes unimportant

"Both my mother and sister experienced loss of memory, how to dress as to what color went with another. They giggled when caught doing the wrong thing. They didn’t remember important dates or meetings.”

This description shows how the important and simple things can be “lost” to Alzheimer’s. It makes no sense to the rest of us when somebody forgets how to pick out clothes to wear when they’ve been doing it most of their lives. That’s just one of many things that will become very unimportant in the “priorities of life” list.

Thursday, April 9, 2009

Name Yourself Day

Well, according to a calendar of odd days, this is Name Yourself Day.

What name would you give yourself? Would you come up with something totally wild that would have totally horrified your parents? Or would you have been the envy of all your peers?

Hmm, what name would I have chosen if I had had a say more than 50 years ago … I don't think it would have been an ordinary name, nor one too fancy. My first name is OK. I'm used to now. But I never liked my middle name and promptly dropped it when I got married, choosing instead to make my maiden name my legal middle name. It wasn't a bad name, and I know several people for whom that name fits nicely, but I never could stomach it.

Actually I think I'll stick with Monica Vest Wheeler. I did get a lot of mileage out of Monica during the Clinton years. During the height of the scandal, after returning from a vacation in Washington, D.C., I truthfully told a group that I had seen President Bill Clinton drive by in a motorcade, but that's as far as it went.

And to milk the situation further, I announced that my dad's name is Bill, which it is, and my mom's name is Paula, which is it. (Remember Paula Jones, another one of Clinton's friends …) It was a great icebreaker for a couple of years, and I vowed I'd never be caught dead in a blue dress …

As for my name, I think I'll stick with what I've grown accustomed to. Besides, if I ask my web gal to change anything else on my website this week, she might call me everything but Monica …

Wednesday, April 8, 2009

Alzheimer's: Don't do this

Do you know one of the caregivers' top pet peeves concerning their loved one with Alzheimer's, dementia or memory loss?

Let's set the scene: You're out shopping or whatever and you run into your friend Mary, whose husband John is in the early-mid stages of Alzheimer's and is with Mary. You say, "Hi, Mary, how are you doing? How's John doing?"

Did you figure out the pet peeve? So many caregivers are frustrated and angry when people talk about their loved ones as if they're not right there. That's painful because it sends an immediate message that loudly negates the original, simple, friendly question, "How's John doing?" If you want to know how John is doing, ask him yourself!

John may not say much, which is OK, but he shouldn't be ignored or forgotten. I've watched the faces of loved ones fade into sadness or emptiness when they're ignored and/or spoken about as if they were invisible. I've witnessed their smiles and glimmer of recognition emerge when they're treated with the same everyday dignity we give someone else who doesn't have dementia or memory loss.

Tuesday, April 7, 2009

Alzheimer's: Not knowing

“He couldn’t remember where we kept things and couldn’t ‘catch on’ to new information.”

You’ve heard it a million times how married couples know each other better than they know themselves. Each should just simply “know” what to do or say or where to go or find things. Imagine the day a spouse doesn’t remember.

Monday, April 6, 2009

Alzheimer's: I didn't know much

“I didn’t know much except that it was a long-term disease.”

Alzheimer’s is a complicated and confusing disease. We hear in the media about promising and not-so-promising research discoveries, and that confuses us more. That’s why families must take the time to educate themselves. Start with the Alzheimer’s Association

Sunday, April 5, 2009

As easy as Rubber Eraser Day

If it was as easy as Rubber Eraser Day, which somebody has labeled today, life's mistakes and misgivings could be corrected with a simple application of the pencil or chalkboard eraser.

Sometimes a little rub would do it and other times it would require some extra muscle. Sometimes it all depends on much energy we want to exert. Sometimes it's easier to just scrawl another layer of lead or chalk to cover it up, forget it and move on.

Maybe that's the big stick we should carry through life. Not the one that threatens and scares others, but the one with a big eraser on the end that acknowledges we're going to make some mistakes along the way and are willing to correct them the best we can, albeit clumsily and incomplete at times … all because we fit into that category of being human.

Saturday, April 4, 2009

Alzheimer's: Everybody has days

“Taking so long to complete a sentence. Slow thought process.”

Everybody has days when thoughts are jumbled due to fatigue, tackling multiple tasks, stress and other ordinary factors. There are countless moments when we all forget the right word to express what we want to say. There are times when grammar rules are tossed aside for the sake of simplicity. However, frequent episodes of difficulty in conversation can leave listeners wondering what’s happening.

Friday, April 3, 2009

Tweed Day … huh?

Okay, Tweed Day is right there on my list of "what on earth is that?"

According to one holiday website, Tweed Day celebrates the familar woolen clothing that hails from Scotland.

Actually, I think I'd prefer Tweedle Dee and Tweedle Dum wearing tweed. How fashionable is that!

Thursday, April 2, 2009

Step right up with Publicity Stunt Week!

I'm not sure who declared April 1-7 to be Publicity Stunt Week, but we know many somebodys out there will milk it for everything they can.

In this era of soundbite indigestion, we're inundated with outdated and overrated publicity stunts. And now, reality shows have gone over the edge. Just how much reality can we handle when we're trying to escape reality?

Was that sentence based on fantasy or reality …

I admit, I did watch the second half of American Idol a couple years back when whatshisname won, oh, yeah, Taylor Whatshislastname. I also admit I watched it with the critical eye of a social observer trying to figure out why the callers and judges select the performers they do. I also admit that I looked at the reality of the situation that this guy had only one style week after week, and I knew that would not bode well when the Idol footlights dimmed.

And while he's a talented and nice guy, I knew he would fade rapidly, and unfortunately he has. That's tough to be on top of the world and then slide into near oblivion. Is that why it's accurately called 15 minutes of fame?

So, I haven't been back to Idol. I only watched Dancing with the Stars for a couple of shows when actress Jane Seymour was on last season … or was it the season before that … Hmm, it's amazing how reality flies. And while I could have watched Cloris Leachman because I've always liked her, I've been more entertained by the soundbites about her tell-all book being released. Not bad for 80-something, huh? I knew years ago that she would be a funny dirty old woman.

Alas, I must confess that there is one reality show to which I have succumbed, and I'm still not sure why because it has whiny, rude, arrogant people on it sometimes, and I wonder why I waste my reality time on them. No, I can't understand it except that my husband seduced me into joining him one night in front of the tube. I was hooked, though again, I think it's because I'm still the social scientist trying to understand human behavior.

However, this show has led to some feuds in our household, basically the reality that whoever gets to the TV room first gets the most comfortable chair. But it's a project we can't run away from, though we have tried. Well, at least I think I've tried a little harder than my hubby.

Sew, I mean, so, I guess it's guess it's fashionable and fitting that we have adopted just this one pattern of behavior in our household. We don't want to be too far out of style because I guess reality TV has become part of our society's fabric. I'll just never confess which show it is, and I've zippered my lips shut.

Now, excuse me while I try to design my own seamless event for Publicity Stunt Week.

Wednesday, April 1, 2009

Alzheimer's: When it isn't automatic

“She was unable to fill out a check or write the date after 2000. I just did not understand that.”

Much of what we do in life is automatic. We go through the motions of every day often without thinking. We perform personal hygiene or household duties without stopping to analyze every step. Imagine how confusing and frustrating that is when it doesn't seem so simple anymore.