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Last night, the television show Boston Legal had one profound moment relating to Alzheimer’s.  

The premise is that one of their leading characters, Denny Crane (played by William Shatner) has early Alzheimer’s. He’s a brilliant attorney who has never lost a case–and he’s part owner in firm. The other law partners are hesitant for Denny to continue to litigate. Not only is he forgetful, he sometimes does or says bizarre things. Things Alzheimer’s patients might say or do.

Great scenario because I happen to know a great law professor from Yale who lives in my community who now has Alzheimer’s. You can be homeless and live under a bridge–and have Alzheimer’s, AIDS, or cancer–or you can be the president of the United States.

At one point, Alan, Denny’s best friend is having a conversation with Jerry, another lawyer in the firm, (who suffers from Asperger’s syndrome) about what a phenomenal job Denny did in court. Jerry blurts out, “Too bad Denny’s dying from Alzheimer’s.”

Alan is shocked. Insulted. He retorts:

“Denny’s not dying from Alzheimer’s. He’s living with it.”

There’s a great distinction here.

One of the drawbacks to early diagnosis is giving up too soon.

Early detection should mean that you receive proper medication, spend time with your loved ones, and make plans to live–not die.

In the case of Alzheimer’s, the average patient lives 8-10 years, and even longer depending on the age you contract this disease. Parkinson’s, ALS, MS, and other diseases can even offer a longer lifespan. Coincidentally, the average caregiver spend 4.3 years caregiving–leaving a bit of a discrepancy here.

The message is: don’t give up too soon.

Don’t hear a diagnosis and go home, draw the curtains, curl up in a fetal position and wither away.

As a family member or caregiver, it’s a blow to hear that your loved one has a terminal illness, but you still have to get up and face each day.

Michael J. Fox says that Parkinson’s is “the disease that keeps on taking.” He’s chosen to live with his disease. He’s chosen to do this for the millions who look to him and rely on him to raise money for research, for the difference he’s already made, but I’m sure he does this even more for his wife and his children.

A recent example is Ted Kennedy’s diagnosis of a malignant brain tumor. He had a seizure and went into the hospital just last weekend. Yet today, he and his wife, Vicki went sailing. He loves sailing and the Boston Globe said he “finds renewal on the water.”

Ted Kennedy is actually teaching his family and others how to treat him. The Chicago Tribune wrote, “Kennedy’s cancer is dire, not hopeless.”

It’s proven that prayers and good thoughts can impact people’s lives clear across the country–and we can create the atmosphere and attitude around us by how we handle our own bad news.

Maya Angelou says, “We teach people how to treat us.”

Yes, it’s natural to feel kicked in the gut.

It’s natural to take to the bed, cry, get angry, lash out or pull in. Don’t beat yourself up for going through this very natural stage.

But after that, it’s time to move on.

You (or your loved one) most likely won’t die tomorrow. Or the next day.

So you take your meds, maybe get physical or occupational therapy. Change things around in your home, hire a home health aide, buy a walker or scooter or whatever else you need. Life is different. I don’t doubt that. But life can still be good.

You can still find joy–and purpose.

Sometimes our purpose is nestled in our situation. Sometimes something–or someone arises in our midst and a window opens where a door shut.

Yet, there will come a time–hopefully in the distant future when the tide turns again.

You, or your loved one may die from this disease, I can’t promise you won’t. 

If not, from something else.

We have to eventually accept that as well. Another transition. Another acceptance. Another change.

But until then, live, live, live, live, live.

~Carol D. O’Dell

Check out her book, a day-to-day, intimate and honest look at caregiving…

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

www.kunati.com/mothering

 

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Today, I’ll continue my conversation with author, Linda Merlino.

Her book, Belly of the Whale will be released in April and is about a woman who finds that cancer isn’t the worst thing that can happen to a person.

Hudson Catalina finds herself a hostage of a killer, held in a gas station as violence unfolds. She thought cancer would kill her. Then, a bullet. And then, she decided to fight.  

I’d pick this book up with this premise in a heartbeat.

So, what’s it got to do with caregiving? Death and dying? Everything.

It’s just like life to throw one catastrophe at us and then wallop us from the side with another. Only then, after our self-wallowing whining and being knocked around a few times do we find that we get mad, and get up. Psychologists say humans (and most animals) have a fight or flight mechanism. I say we also have a fight or die one too.  

I know if I get pushed down (and I have, many times), I collapse, cry, grow quiet, too quiet, doubt myself, and then….I get mad. I get back up. I’ve seen myself do this in an almost out of body experience (observation–observing that I’m observing) I hate to see me cower. God, I hate that. I hate bullies, but man, do they teach good lessons.

Where I got this from, I don’t know. I’ve always been stubborn—and rebellious.

What’s your default? How can you use your “bad” qualities for the good? I’ve learned I have to, they’re like a good old pack of dogs always laying under my feet and following me wherever I go. Faithful to a fault. I have to put my “bad side” to work–give it something to do. Make it play fetch.

Even before I was adopted, I’ve been told that my grandmother would tell me the opposite thing to do in order to get me to do the thing she wanted. And I was only four!  Now, I try to use it for the good.  

Linda’s character, Hudson, has gone into “the belly of the whale,” the dark night of the soul, the fear of death and suffering…and that got me wondering…

where does the “will to live” come from?  

Some caregivers are passive. They let life happen to them, and then caregivingcame along and “just happened.” But many times, caregiving will cause us to face our own fears and reflect on our own lives.  

Some people with Alzheimer’s, Parkinson’s, or cancer (not to mention ALS, MS, and other debilitating diseases) succumb to the sorrow and seemingly give up. Others fight like hell. Why? Personality? Life events? What causes a person to get to the point to either lay down—or stand up—to life?   So I asked Linda:  

Q: When it comes to life and death, how much do you feel is “will” or just a person’s time to go? A: You can will things to happen.  I believe that; even death.  I believe also, that there is a time and a purpose in all of what life brings to us.  We do not know when we will run out of summers.  In “Belly of the Whale”, Hudson Catalina feels her time to go is imminent.  The beast she’s been running away from since she was fourteen has finally caught up with her and although she appeared to be fighting the fight, at heart, she probably never believed she would win against cancer. People of extraordinary faith, whether it is old time religion or simple spirituality, can defy the odds.  Even if death finds them through illness, accident or tragedy, rather than old age, these faith-driven folk teach us all a lesson.  

Here is an excerpt from “Belly of the Whale”: 

Ruby Desmond to Hudson Catalina “I’m a woman of great faith,” Ruby said. 

“When Charlie passed, I relied on my belief in God to help me through those long days and even longer nights.” “Weren’t you angry?” I asked her. 

“His dying just like your Daddy is like my mother and I dying of breast cancer.” 

First off, child, you are not dead yet; and second, things don’t go according to our plan, no way, no how.” 

Ruby made her point by thrusting her head back into her rocker and pushing off hard on the runners. 

“I’m not unfeeling to your situation, child, but the truth is you have already decided what is going to happen and that’s plain crazy.  God isn’t to blame for these unfortunate times in our lives.” 

“Who is then?” I asked. 

“Just like I said before, I never get the answers I want when I ask.” 

She made a circle with her fingers in the air. 

 “If you’re asking me, which you are, I’ll tell you that life’s a circle and we go around like the spokes on a wheel.  Sometimes we’re happy, our faces in the light, and sometimes the wheel thrusts us into harsh places of darkness and despair.  But we have to believe that it keeps going around, back into the light.  Never give up hope.”   

Q: What was the bud or seed of this story? 

A: The interesting thing is that the seed or bud of this story was not about Hudson Catalina or about breast cancer.  In fact, the very seed of this book was centered on the character, Willy Wu.  The original title of the novel was “Willy Wu”.  At the time that I began putting words to paper I was re-reading some of Joseph Campbell’s works and I was taken once again with his concept of heroes.  Coupled with this and the desire to write a story about a character like Willy, who is challenged physically, mentally and verbally, I wondered how much Willy processed and if he could transcend his stereotyping and be a hero. 

Part II of “Belly of the Whale” begins with: “Heroes are the most unassuming, and the most improbable of individuals.”Through the filter system of publishing Willy became autistic.

 In the early stages I hesitated to tag Willy.  I felt that the community of his peers might be offended by the mention of a more defined diagnosis.  Now that the story is completed I am comfortable with Willy being autistic.  He rises above his handicaps and fulfills my original intention.   

The story evolved and Hudson Catalina became the main character leaving Willy to be a hero in the true sense.  Hudson must face her fears, but Willy is not capable of fear.  He trusts everyone.  He is innocent, he is pure, he knows about heroes. 

More tomorrow. This is just too good to gorge on all at one time. Savor.

~Carol D. O’Dell

author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir,

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