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Randy Pausch died last Friday.

He’s the Carnegie Mellon professor who wrote The Last Lecture.

The book is based off a lecture he gave to his students that received such worldwide attention on YouTube. If you haven’t seen it on YouTube, here’s the link:

It’s not his usual style lecture since he’s a computer geek who teaches about virtual reality.
But Randy contracted pancreatic cancer.
It changes your priorities.
Randy’s last lecture was about play, integrity, falling in love, and purpose.
Randy lost his battle with pancreatic cancer last Friday.
His wife of seven years and three young children will miss him every day.  
He was 38 before he ever found true love.
He said something I’m passing down to my unmarried daughter.
“Don’t get married until you find a guy who has come to the point that your happiness matters more than his.” 
Randy and his family was featured on ABC last night.
It was about the most inspiring thing on television I’ve seen in a long while.
Here’s the link: abcnews.go.com/GMA/story?id=3633945
The Last Lecture (book and video) was written Randy says, not for the masses, but for his children.
He left behind what is referred to as an ethical will.
What is an ethical will?
It’s usually a written document in which you pass down your ethical, spiritual and emotional values.

Here are some common themes seen in many of today’s ethical wills:

  • Important personal values and beliefs
  • Important spiritual values
  • Hopes and blessings for future generations
  • Life’s lessons
  • Love
  • Forgiving others and asking for forgiveness
One such document was written by Barry K. Baines MD. His book is titled, Putting Your Values on Paper
I can say with great pride that Dr. Baines read my book, Mothering Mother and endorsed it.
I didn’t put Randy and Dr. Baines together until just now. Not until I started writing this post.
I love the serendipitous nature of life. No wonder this story moved me so.
Randy’s book and lecture is so about living, really living.
He says it’s about achieving childhood dreams, but I think it’s about capturing the essense of those dreams and living them out every day.
It’s also about who you are and what of “you” do you choose to leave behind.
My adoptive daddy had a profound effect on my life. When he died, I remember asking God to pass down Daddy’s mantel onto me. It’s a religious term that is mentioned in the story of Elijah and Elisha.
In case you don’t know or don’t remember, Elijah was a powerful prophet in the Old Testament. Elisha wanted to be his under study. Elijah told him that the only way that would happen was for him to follow him around everywhere and the moment God took him, Elisha had to be there to catch his “mantel.”
The story goes that a fiery chariot swooped out of the heavens, grabbed Elijah, and as he was snatched away–his cloak fell to the earth and Elisha caught it. Elisha went on to be a power prophet in his own right.
Now this story sounds downright Greek (as in a good yarn of mythical proportions). 
While you may or may not choose to take it literally, it’s about the transfer of power.
It’s about appreticeship and mentoring.
This is what I wanted that I wanted Daddy to pass on to me: 
Daddy posessed quiet power. Wisdom. Strength. Love of family. Dedication.
Honor. Thoughfulness. Old Southerness. Sweetness. Easiness, but with a line of “this is as far as you go.”
No one messed with my daddy. Everyone respected and admired him. Everyone. He had real power.
The kind you earn. The kind earned by staying married, by being a sharp shooter in World War II.
By walking a quiet, good life.
Do you know what the physics equation is of power?
(I watch a lot of TLC, and Discovery Channel).
Power  = Energy Divided by Time
You want to know how to add power to your life?
Put in a chosen amount of energy over a chosen amount of time–and you’ll have the equation to get however much power you want.
Say you want a powerful body. Muscles.
Go to the gym for 45 minutes a day four days a week for six months.
You’ll have power. You’ll have muscles. That simple.
We over-think, try to take shortcuts, and really it’s mathematical. Put in the time. Put in the effort.
What’s this got to do with ethical wills?
Those powerful people in your life–whoever you respect and admire–your dad, a coach, a teacher–you recognize their power, their expertise, the way they make others feel and how they inspire them.
You want some of their power, their inspiration after they’re gone. You don’t want it disappated into the atmosphere.
Like Elisha, ask for it. Put in the time. (He put in ten years)
Maybe this is what caregiving is–putting in the time and being there to catch the mantel.
Ask your loved one to leave a piece of themselves behind.
Ask them to write it down, or video or audio record them.
Get them to tell stories. Ask them who influenced them, who inspired them.
You can download an ethical will form, or you can simply write a letter to those you love.
Caregivers, I urge you to get your loved ones to do this on one form or another. You’ll be glad to have something permanent, something you’ll always treasure.
Randy Pausch inspired a nation.
In a publishing era that seems too often to be more about marketing and hype than substance, a little book and a YouTube video comes along and knocks the world off its feet.
He talked about what matters most–in the end.
Love, family, hard work, truth, play.
His children–and his readers are blessed.

Carol D. O’Dell

Author of 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

Kunati Publishers, www.kunati.com/mothering-mother-memoir-by-car/ – 95k

 

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Caregivers,

Do you have a place to go?

A sanctuary?

If not, it may be a big part as to why you’re stressed and resentful.

Caregiving invades your space, your head, your time–you don’t always get to say when you’re needed.

I pulled many a “late night shift” with my mom.

My mother had Alzheimer’s and Parkinson’s and not only did she have Sundowning, a condition in which people with Alzheimer’s get more aggitated and have more energy as the sun goes down–and on into the night, but she simply didn’t need much sleep–or her body wouldn’t let her sleep. (Here’s a post I wrote about my experience with sundowning).

It’s not like we could make it up during the day.

I was dragging. That made me miserable, fussy, and I tended to overeat. Why? Because studies have now shown that obesity is linked with lack of sleep. We tend to munch all day because it gives us something to do, causes our brains to perk up, and since sugar is almost always involved, we’re pumping ourselves up like we’re climbing the highest point of a rollercoaster–and then plummeting to exhaustion.

Maybe what you need isn’t to just lie down. 

It’s a renewal of your spirit you’re hungry and longing for.

You don’t have to be religious to need a sanctuary.

I love that I happen to live in a bird sanctuary area–the Timucuan Preserve. I love the thought that animals are held as sacred and that an area is designated for them.

But shouldn’t we humans create our own sanctuaries? What exactly is a sanctuary?

The word, “sanctuary” means:

Source: Webster’s Revised Unabridged Dictionary (1913) –The spelling has changed since then.

Sanctuary\Sanc"tu*a*ry\, n.; pl. Sanctuaries. [OE. seintuarie, OF. saintuaire, F. sanctuaire, fr. L. sanctuarium, from sanctus sacred, holy. See Saint.]
   A sacred place; a consecrated spot; a holy and inviolable
   site.
Two of the definitions include:
c) A house consecrated to the worship of God; a place where
       divine service is performed; a church, temple, or other
       place of worship. A place to keep sacred objects.
   (d) A sacred and inviolable asylum; a place of refuge and
       protection; shelter; refuge; protection.
Operative words: Refuge. Sacred. Shelter. Protection.

How to Create a Sanctuary:

What is sacred or holy to you?

  • Gather a few objects–a photo, seashells, stones, your mother’s broach, your dad’s pocket watch, your baby picture.
  • Grab a basket or a box and walk around your home and hard. Gather anything that interests you. Your sacred objects will change over time. Just get it rolling for now.

Find a place:

  • Where in your home or yard feels “safe?”
  • Where can you have some privacy? Where can you relax?
  • Place a table, a desk, a chair, a cover at this place. If it’s outside then create a box of your sacred items that you can carry out with you.
  • You might also want to include a journal and pen, micro-cassette recorder, a drawing pad, candles, a rosary–any object that helps you figure out life.
  • Go frivolous~ don’t think a sanctuary is all serious! Take your ipod along. Dance! Paint your toenails and read a magazine! Navel gaze. You may just need some extended down time–staring into space.
  • There are no rules. Do what you feel like doing. We’re taught not to trust our feelings. That if we got to do what we felt like, we’d all be drug addicts, cheaters who eat nothing but Oreos. Trust yourself. Do what feels right. Sleep. Stare. Rant. Cry. Sleep some more.
  • Your sanctuary is off limits to everyone else. Make your boundaries. No interruptions. No phone calls. Unless there’s blood and lots of it–you are not to be called away from your most important work–taking care of you.
  • You’ll be surprised, but your family and friends will respect your space–if you do. This is a great example for your children.
  • Don’t expect “results.”
  • This isn’t a magic box. It’s a place to rest or even to rejuvinate. Recenter. Calm down. Work things out. Place no expectations. This isn’t like Weight Watchers for the soul. You don’t have to weigh in and measure if you’ve gained or lost since last week. Just be.
  • You may need to use your sanctuary to work out your anger, hurt, and resentment. One thing I do when I’m really upset is to write it all down on scraps of paper, say it outloud, and then burn it. It helps to watch your anger turn to ash.

Pick a Sanctuary Location:

  • Some people like clearing out a closet and placing a chair, pillows, and a small table and light in their “prayer closet.” Oprah recently featured a sanctuary closet that was really decked out. 
  • Others like to go outside–they hide away in the nook of the yard and get the benefit of nature to heal them.
  • One friend keeps her “special box” she calls it in the car. She literally walks out the door and goes and sits in her car. Her family is less likely to find her there and she feels safe and cocooned. She can scream, cry or laugh in her sound-proof sanctuary.
  • For some, it’s in the bathroom. They retreat eat night to the tub–they keep candles, soaps, and a journal on hand. They know that being naked will most likely keep people away! Hey! Whatever works!
  • Be like my cat and change your sanctuary every once in a while.

Cats are great to observe. They seem to make their spots seem sacred. My cat picks a spot and goes there after breakfast each morning. He gives himself a luxurious bath, folds in his little paws and I swear, if cats could pray, I’d think he was praying. Then, he takes a nap.

This week, his spot is under my birth grandmother’s rocking chair in my bedroom. He tends to pick a spot and goes there for 3-4 weeks before picking another spot. Recently, it’s been in the back of my closet–that’s when he doesn’t want to be found. A few weeks ago, it was on a chair next to the dining room windows so he could enjoy the sun. I knew where he was, but he’s also quiet and hidden away enough to not invite attention. Smart cat.

What Do I Do in My Sanctuary?

First, let’s address what you DON’T do.

  • You don’t take care of anybody but you.
  • You don’t stay busy just to avoid what’s bothering you.
  • You don’t have your thoughts constantly interrupted with the chatter of life.
  • You don’t allow yourself to be bombarded with the demands of every day life.

This is What You DO:

Rest. Think. Imagine. Work out hurts. Cry. Zone out. Learn (maybe take a book?) Find your joy.

If it feels odd at first because you’ve never done anything like this, then let it feel odd. Your sanctuary practice will be even more necessary at the end of your loved one’s life–and especially during your time of grief. Create this space now so that you’ll have a place to run to when you really need it.

Like my cat, I change my locale every once in a while.

Right now, it’s on my back porch on my parent’s glider (they had it since I was adopted in 1965). I have a stack of books on one arm, and I recently bought a big cushion–in case I get sleepy. About 9am you’ll find me there with my 2nd cup of coffee, my journal, a few magazines, a no doubt, a couple of dogs by my feet.

I’m a Guy and This Sounds Lame:

Does it?

My daddy had a sanctuary. He called it a garage. He built it himself. He left for his garage every morning after breakfast (he was retired at this point) and after his game shows. He putzed, worked on a broken lamp, put in a small bathroom. He listened to talk radio. For the most part, he was alone–although a few friends would come and visit. Mama and I came down but never really stayed long. It felt like we were intruding.

He’d come back to the house with a smile. He’d had his time to himself. He smelled of sawdust and linseed oil–and peanuts and Coke he kept in a cooler to sustain him throughout the day. He came back relaxed because he allowed himself this break. He didn’t have to listen to Mama nag or me talk incessantly. He came back ready to be a dad and husband. Smart man.

Caregiving stress is a real issue with real ramifications to your health and realtionships. Sometimes we unknowingly contribute to our own stress by always being on call. Sometimes it’s a power thing we’re unaware of, sometimes it’s fear, sometimes it’s just a plain ole’ bad habit we can’t figure out how to break.

You need a sanctuary–caregiving or not.

You need to know that the world won’t fall apart because you take a half an hour and pull inward.

Like Daddy, you’ll come back refreshed.

~Carol D. O’Dell

Author of 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

Kunati Publishers, www.kunati.com/mothering

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Do you hear the tick, tick, tick of the death clock?

What’s the death clock you ask?

The death clock, is a website that calculates (with a little information you add in) the exact day you will die.

Sounds morbid, right?

I agree, but take this as a bit of fun and not too serious.

Playing with death–trying it on for size is one way humans deal with the tragedies of life–kind of like playing dress up with your mother’s high heels and your dad’s jacket.

So, I went to www.deathclock.com, (there’s also a few others– http://www.findyourfate.com/deathmeter/deathmtr.html, http://deathdate.info, http://www.death-clock.org/) and put in my numbers.

I didn’t really want to know when I’d die. But I have to admit, I was curious.

How can you not be curious?

I was raised in a uber-religious home and this sounded like fortune telling–something stricly forbidden to dabble in–which means it’s even more tempting, dangerous, and oh so fascinating…(yeah, I’ve got a bit of a rebellious streak in me, I can’t deny it).

So I typed in my info, and you know what? I feel better!

It says I’m going to live until I’m 100 years old.

Instead of feeling depressed about knowing my “D day,” I felt expanded.

100 feels pretty far away. I’m not quite half there. I still have a a whole lotta livin’ to do. 

I do take in account I could get hit by the proverbial bus at any time–that lightening could strike me for visiting that heathen site, (sorry, Mama!) or a myriad of other diseases and accidents could come barrel my way–but I’m not the type of person to be paralyzed by the “what ifs” of life. 

But I’ve seen the dark side of agin. I know what Alzheimer’s looks like, about the challenges that come with aging.

My dad died of heart disease at 78, and my mother lived with Parkinson’s and Alzheimer’s and died at the age of 92 (they were my adoptive parents and older than most parents). I was her primary caregiver and she lived with my family and I the last three years of her life.

I wrote every day my mother lived with us.

I wrote what it’s like for her to live with this disease, what it was like for me, her daughter to struggle with the challenges of being a sandwich generation-er. I wrote about our fears, our fights, our hurts, our day-to-day challenges, and the truth about the guilt and resentment caregivers and families are afraid to say out loud.

Our story became a book, Mothering Mother and has been read by thousands.

The fact is, if you live long enough, you stand a real strong chance of getting Alzheimer’s.

Deal with it. Sounds cold, but what I mean is…do what you can now to take care of yourself.

Eat healthy, have a good attitude, walk every day. Forgive.

Those are the best ways I know of to stave off that dreaded disease.

And even if you get a diagnosis, don’t just crawl up and die. You still have time–love your family–leave a legacy. Don’t spend your precious time worrying.

I don’t know if you want to try the death clock–if it all seems like a bunch of hoo-haa.–but if you’re feeling brave, then take a twirl with the grim reaper and give it a try.

A few years ago, I wrote a “100 Things To Do in My Life” List.

I wrote it while we were on vacation. I wrote it around the margins of an old Rand McNally atlas we had in the car–apprapo, I guess.

I wrote things like:

  1. Go back to college and get my BFA
  2. Design and make a bronze sculpture
  3. Visit the Vincent Van Gogh Gallery in Amsterdam
  4. Publish books (plural)
  5. Take a cooking class in Napa
  6. Repaint all my favorite Van Goghs myself
  7. Create cool yard art–and sell it
  8. Be paid 500 bucks an hour to speak and inspire people
  9. Be on the board of a charity/organization and help make a difference
  10. Design an Italian garden
  11. Have a 30+year writing career
  12. Be a GREAT grandma
  13. Speak French, Italian and Spanish fluently
  14. Live in the South of France for several months
  15. Win a PEN award
  16. Stay married, stay healthy
  17. Forgive and not grow bitter

I wrote this in 1999. I was dreaming big,. I packed it away and didn’t look at it for more than five years. My heart and my words guided me intuitively.

There are 126 items on my master list.

Of the 16 I listed here, 11 have already come to fruition.

I have 53 years to achieve the rest.

A friend of mine said she saw The Bucket List this week and that she loved it, but a friend of hers said they wanted a list of all the things they didn’t want to do–a “Chuck It” list. I like that idea too.

Or you could do an “anti-list.”

Remember that edisode on Grey’s Anatomy when that guy found out he was dying and decided to video-taped himself chewing out all the people he hated/who had hurt and humiliated him? This is what he chose to do before he died.

How cleansing! To leave this world feeling like you said your peace. Perhaps is he had done this sooner, he wouldn’t be dying.

What would be on your anti-list?

I’d love to never ever have another root canal…how about you?

So maybe I should rename the Death Clock to the LIVE clock.

After all, I have a list that needs a whole lot more check marks. Instead of counting down the days until I die, I should count each day I’m living.

Instead of following the old cliche, “Live a little.” I think I’ll rewrite it:

Live A lot!”

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

Kunati books, www.kunati.com/motheringmother

Family advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

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There’s a new kind of caregiver out there.

She (or he) is a savvy caregiver, isn’t a martyr, and doesn’t look defeated (all the time).

She (I use the feminine pronoun to apply to everyone) has her act together (in some respects) and isn’t going to let her life and her plans be completely derailed–and yet she loves her family, her elders, her children, and embraces the fact that she’s an integral part of their life.

How does she do it all?

It’s not about being perfect.

In part, it’s about being prepared, looking at the big picture, and then breaking down the day-to-day components into manageable bites.

It’s also about choosing to care-give.

This isn’t a passive thing–and yes, it may have come to you sideways, unexpected or by default, but you didn’t have to say yes. Everyday people place their family members in care facilities, sometimes out of necessity and sometimes by refusing to give them any level of care.

Realize that you are choosing to care-give. That sense of choice also provides you with purpose and direction. It means you’re not a victim.

Preparedness (Boy Scouts, move over) and How to Care-give Not to Kill Yourself

  • She’s (the healthy caregiver) gathered the necessary info and has it at her fingertips–Living Wills (The Five Wishes is the one I highly suggest) DNR orders, if necessary, insurance info and numbers, notes made about recent doctor appts. or hospitalizations, and medicine info.
  • She uses her calendar and to-do lists efficiently, but she’s not a robot. Some days you chuck it all and love on the person who needs it the most (that may be yourself).
  • She has her down days, her pajama days, and she knows that balance isn’t about doing a little every day–sometimes there are seasons–seasons of quiet, seasons of chaos, and seasons of grief.
  • She’s learned not to let every little thing rial her. She’s experienced enough in life to know what’s worth freaking out about (which is very little) and what isn’t (which is most everything else).
  • She listens, repeats back what is said (to a loved one or to a doctor) so that she understands clearly. She takes notes if it’s important or could be necessary later.
  • She can shut it all off and be a woman, get a mani-pedi, be silly and play Prince in the car and sing to the top of her lungs. She doesn’t get sucked into being an elder or being a teen just because she happens to spend a lot of time with either (or both).
  • She prioritizes. Sometimes a home-cooked meal is soothing and rattles her nerves. Sometimes it’s pizza night. She laid down the “shoulda’s, woulda’s, and coulda’s.”
  • She has a great support team–friends to call and gripe to, a gynecologist or family doctor who’s looking out for her, knows the stress she’s under and can monitor her well-being. She relies on her faith, her heart, her circle of support and doesn’t try to go it alone. She considers herself a part of a team and shows a heart of gratitude.
  • She asks for and accepts help. She isn’t interested in being super woman or perfectionist woman. She’s willing to get help and seeks out competent care.
  • She knows she’s vulnerable to stress, so she’s devised a meditation time and exercise time she can manage–it may be only a few minutes a day, but it keeps her sane.  She’s found her own spirituality.
  • She continues to improve her own life–she takes an on line class, a yoga class, is learning how to knit–something that keeps her mind active and learning.
  • She utilizes the internet, finds help, information, and forums that help support her and her caregiving experience.
  • She can see past tomorrow–she knows that caregiving isn’t forever–and she has her own personal plan to move on with her life.
  • She gives herself permission to “lose it” every once in a while–sometimes things just go in the crapper and that isn’t a reflection of her, it’s just life. If she bites someone’s head off, forgets an appointment, bounces a check, she admits her faux pas and lets it go.
  • She values her marriage/intimate relationship and allows sex and intimacy to heal her. Even when she’s exhausted, she finds and asks for ways to connect.
  • She enjoys caregiving–even with all its craziness, caring for a loved one is a privilege. She finds ways to incorporate everyday pleasures to share with her care partner–bird watching from a bedroom window, stopping for ice cream on the way back from the doctor.
  • She takes the time to hold hands.
  • She’s strong enough to make the touch choices, to not be popular, to figure out how to get a doctor, care staff to understand where she’s coming from–and she’s brave enough to know that when death comes, she may be asked to make critical end-of-life decisions, decisions others may disagree with.
  • She’s not afraid of Alzheimer’s or Parkinsons and doesn’t give up in the cruel face of whatever disease her loved ones face. If they forget who she is, she’ll remember for them. If they become uncontrollable, she gets help and doesn’t take it personal.
  • She knows that she may not always be able to do this–and she’s explored other options. She isn’t going to wreck her health or her marriage. She’s planning for those changes now.
  • She knows that caregiving will take her to the bitter edge, and she’s got to figure out how regain the parts of her that get lost in the mix. She knows how hard this is, or will become, but there’s a thread that’s pulling her along, a thread will lead her out and will allow her to continue her journey once caregiving is over.

The new kind of caregiver isn’t a super-mom or super-daughter (or super-son).

They’re real people loving their families. It’s realistic. It’s not martyristic.

The world may not understand the “sacrifices” as some might call them that caregivers (plain ole’ family) makes, but those who have been there understand the love and loyalty that comes in tow.

You don’t do all these things at once, so don’t try to measure up.

You don’t do them to impress anybody.

This is survival. This is how to care-give and not kill yourself in the process.

~Carol D. O’Dell

Author of 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

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This June, my mother will celebrate her sixth anniversary “on the other side.”

I can hardly believe it’s been that long. I spent the first year in grief and rebuilding my life.

That’s normal, and you can’t rush it or fix it. It was more like two years, and that’s also “normal.”

That’s how long it takes to assimilate a death, process your emotions, and begin to incorporate your loved one into your being. Of course, averages are just numbers and each person’s process if different, but you really shouldn’t expect much from yourself during those first two years–at least that long. 

For me, that time was a mix of guilt, regret, longing, lostness, mania, and vacillating between lethargy and intensity. To the outside world, I might not have looked like I skipped a beat, but what choice did I have?

I was a sand-gener–I had daughters to finish raising, to get into college. I returned to college myself, lost 30 pounds, stayed married, wrote my book, wrote short stories, essays and articles–I looked busy. I was busy. But there was a whole lot going on under the surface.

But only in retrospect can we see the bigger picture.

Now, I can look back and see where I’ve been and what I’ve learned.

It’s a laundry list and I can’t say when I learned what.

There’s no order, only this is what I know–about caregiving, life, death, mothers, daughters, families, faith, and surviving.

What I Learned:

  • I’m glad I didn’t know what was ahead–if I did, I would have never gone on this journey. 
  • Believe that caregiving has come into your life to heal you, show you things about yourself, give you a chance to work on old issues–and that in the end, you’ll emerge a better person.  
  • To accept myself and my mother and our relationship “as is.” It’s okay not to try and fix things.
  • Forgiveness are like small pebbles you pick up along the way–nothing big and monumental–just a gathering of what I choose to keep–and what I leave behind.
  • Doctors and nurses aren’t gods and I don’t have to do everything they say. I can speak up, ask for somehting different. I know my loved one much better than they do–and I have to make–and live with my decisions.
  • For the most part, going into the hospital in those last few years only made things worse. It wore me out, and there is a time to just accept that your loved one’s health is falling apart and let it.
  • Live with the chaos, the dishes, the laundry–sleep whenever I can–there are times to just get by.
  • Stop worrying about what my relatives or our neighbors think. Unless you’ve been a caregiver, youy can’t fathom what this is like.
  • To ask for more and more and more help. I tried to do too much alone and on my own.
  • Trust that I will bounce back from caregiving. Don’t drive my health to the absolute bitter edge (just almost), but then reclaim my health, my life, and my sanity and move on.
  • Guilt and resentment take up too much time and energy–stop giving my power away by mulling on things I can’t change.
  • You might not want to piss off all your doctors and nurses because you might eventually need them–so be savvy about how you deal with them.
  • If you’re forced choosing between your health, your marriage, your sanity, your children–and your elder–then choose your life to put first. Not theirs. As cold as that sounds, life moves forward. This doesn’t mean you ditch them on the side of the road, but in your mind and heart, put your life first.
  • Don’t just tolerate things you can’t stand. Stop being passive agressive and complaining about it later. Do something about it. Pitch a fit. Tell off your sibling. Fire a home health aide. Scream for help. Be a bitch. It probably isn’t the first time–nor will it be your last. You get what you tolerate, so stop tolerating so much. (I’m talking to myself, here)
  • No matter how religious a person may have been in their life, it doesn’t mean they aren’t fearful of death. Fear, or lack of, has more to do with a person’s psychological make up, and a way they’ve practiced seeing and responding to life–and this will determine how they handle death.
  • Realize that those last few years, months, or weeks may be more about semantics–that their spirit has already left this earth and the shell, their body, just hasn’t left yet. Be okay with taking care of that shell–but don’t make it hard, and don’t over think.
  • Understand that anger is sometimes a useful emotion–it’s a way we protect ourselves, but there’s also a time to lay anger down.
  • Laugh whenver you can–at whatever you can. Be irreverent, be snarky, other than downright cruelty, laughter is so good for you that you need to see the humor and crazyness of your situation.
  • For the most part, go with your gut. Do what feels most natural, particularly after your loved one passes and you’re grieving. Sleep, eat, cry, run a marathon, join thepeace corp–whatever is driving you, let it drive you–it’s part of your journey, and other than truly dangerous behavoir, you can’t screw up, so go for it.
  • You feel really lost after losing your mother. You wonder who you are without them to help define you. Later, you might even feel free-er, less confined.
  • Missing someone hurts, but sometimes it’s good to hurt.
  • It may take a few years, but eventually, let go of the exhaustion, resentment, guilt, and begin to enjoy your new relationship with your loved one. People “on the other side” still teach us, guide us, speak to us–and realize that they are now a part of who you are. You carry them with you.
  • Understand that you may have to care give again–a spouse, another parent, a sibling, who knows? Begin to think–how would you do it different?

Here I am, almost to June. Six years ago I was at my mother’s bedside.

It was grueling, and the weeks were dribbling by.

It rained every day, and my mother was in a coma. It felt like she’d never die. That may sound cruel, but I was beyond all human niceties. It also felt like I’d never live. Practically speaking, I knew I couldn’t fix Alzheimer’s. I knew her living would keep her in a place of perpetual lostness, and I didn’t want that for either of us.

I hated everybody–hospice, me, my mother–and then I let go and just allowed.

The barometric pressure felt off the chart. ‘

Death had to come, but when? Mother had quit eating and drinking, and I let her. That was an excruciating decision, but I chose to let her leave this world. I chose not to intebate her, to do a feeding tube. I knew that this decision would be one I would have to bear alone. I would have to sit there, every minute and see the ramifications of my choice. I did, and as hard as it was, as many times as I wanted to panic, jump up, run out, beg for intervention, I didn’t. I stayed firm.

My world grew calm, my movements quiet. We waited.

And here I am–six years forward. Blogging. I had no idea I would wind up blogging every day. I doubt I even knew what a blog was at the time.

My book, Mothering Mother has been out a year. I’ve talked to hundreds and hundreds and hundreds of caregivers. I’ve been featured on CNN and other tv and radio programs. I’ve written a novel about Vincent Van Gogh, and finished my prequel, Said Child. I graduated from Jacksonville University and danced at my daughter’s wedding, and buried our beagle. Life is full. It swells and ebbs.

What I’ve learned is to accept each day, the power of now. Each season. To be alive with what is given to me at the time. To realize I’m not so much in control as I am in the flow. I am a part of what is happening, not orchestrating it.

Caregiving gave my life a deeper meaning. It revealed things about me, how I think, how I handle life–things I’m proud of and things I’d like to address.

One thing for sure, caregiving changes you in ways you can’t imagine.  

~Carol D. O’Dell

Author of 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

Publisher: www.kunati.com

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The latest stats released by the Alzheimer’s Association paint a grim picture.

USA Today reported that ten million are expected to get Alzheimer’s over the next 2 decades.

Most boomers I know are a bit stunned. 1 in 8 will get Alzheimer’s.

I started bunching people I know in eights. Terrible, I know.

My husband has 8 siblings. Which one?

I mentally grouped my friends and imagined myself visiting them, trying to rouse the remnants of our relationship.

It was so much easier in my imagination for it to be somebody else other than me!

I felt like those people in the Titanic lifeboats. The boat’s too heavy, who’s going to get the ole’ heave ho! We always kid about poor Leo’s icy fingers being pried off one by one. My husband says he can see me doing that. I tell him I’ll sing him a Celine Delion song and wave to him as he sinks to the bottom of the Atlantic. Just kidding.

I walked around for days living too far into the future, speculating too much about whether or not I’d be the one in eight.

Then, I remembered the quote:

“To tell a man his future is to condemn him to one.”

That’s kind of what this news did. Maybe it didn’t mean to.

I assume their reasons for imparting this knowledge was to spar research, educate the masses, but I wonder if they know what they’ve done?

It doesn’t take long for the rebellious inner child to stand up and yell, “Hell no!” I’m not going without a fight.

I’ve already seen Alzheimer’s up close and personal with my mom. She had Parkinson’s for 15 years and Alzheimer’s for at least the last three years of her life. That’s when I brought her into my home, so I know how brutal it can get. What I’m not willing to face is a two, three, four decade old bully poking at me, taunting me, telling me over and over he’s gonna get me in the end.

Are you worried about getting Alzheimer’s too?

One thing I’ve done is to go ahead and play my own devil’s advocate.

So what if I get it? What will life be like?

Many scenarios here: I could be mean and belligerent. Doesn’t sound half bad, I’m kind of tired of being nice all the time.

If I just had one day where I told people what I really think…

It could be scary. That’s what I don’t want. To be on the edge. Nervous, agitated, restless to no end. Paranoid. Angry beyond consoling. To that, I say, drug me. Drug me in a stupor if you have to. By then, I promise you, I’ll have had a good life, and if it’s too awful for me or for you, then I give you permission to gork me out of my…mind. If the last couple of years are a throw away then so be it. If it’s painful to watch, then don’t.

Go live a big, bold, purpose-filled life. That’s the best way I can think of being honored.

I’ve told this to my husband and my girls and it’s going in the “important drawer.”

If you love me, then do something meaningful with your life–in my honor, if it makes you feel better.

But, if I’m just in la-la land, rambling around in the past, and I’m rather amiable, then let me enjoy it.

Don’t remind me who’s dead or that I’m nearly there myself. I don’t expect you to play along and mess up the delicate balance of reality you’ve scrambled for–just make me comfortable. If I think I’m sixteen, or twenty four, or forty-four, then let me enjoy it.

I learned the hard way with my mom that most people fear Alzheimer’s (both as caregivers and for themselves) because they can’t control it. It scares them, rattles their nerves. Their loved one acting “not like themselves,” angry, sexually explicit, fussy, playing in feces–it unnerves people. Is it really all that bad? My brain went kaflooey. It’s not a reflection of the kind of person I chose to be–we are in fact, what we choose. It’s not a reflection of our relationship or of you. It just happens.

Brains go haywire and you can’t control it any more than you can control your dreams, your nightmares, and all those random blips that you dare never admit or mention to anybody. It’s just random electrical spasms of disconnected thoughts and of all the other thoughts you’ve suppressed. We all have it inside us, don’t kid yourself. We have to eventually make peace with our humanity, and our lack of humanity.

We have to make peace with this base self, animalistic, driven, insatiable self.

This isn’t even the bad part.

Alzheimer’s does a lot more to the body and mind than simply making a person different or moody or playing in their poop. You think that’s your biggest hurdle at the time, it’s not.

The forgetting grows like a fertilized weed and it begins to invade a different part of the brain and a person’s life: recognizing not only those they love but even themselves and what it means to be here, recognizing objects like what to do with a spoon, what to do with the food someone placed in your mouth, or when your body forgets to take its next breath.

 That’s when you wish for your fiesty loved one to return to you–memory intact or not. We have to come to terms with this too, and this is much harder and deeper. This is when chaos collapses in on itself. This is when as a loved one, you get quiet. You stop talking about it all, complaining. You’ve shed so many tears you don’t have any left. 

This is Alzheimer’s.

I kidded with my girls on Easter Sunday. I told them if I have mild dementia or Alzheimer’s, that I want a dress-up box–with a fireman’s hat like I had as a child, and French beret (we always had a dress-up box when they were little) I want a boa, and lots of make up, and a yellow rain slicker and golashes. I want a cat, I’ve always had a kitty. I want paints and crafty things. I want my room filled with Van Goghs. I want to work in a garden. I want to dance. A lot. I want loud music and me in my boa and fireman hat clutching a bouquet of forget-me-nots and a kitty in a windowsill looking thoroughly disgusted with it all.

We laughed. They said they would. Then they argued as to who would get me. They said they all took their turns with Nanny (my mother). I told them if I had known that would do them in, (trust me, I was the primary caregiver, not them), then I’d have let her fend for herself (joke, we’re quite a facetious bunch).

Each of my daughters have their attributes. At my youngest daughter’s house, I’ll be a fashionista–coach purses and Italian scarves. She promised me we’d make tents in the living room out of sheets and blankets.

At my middle daughter’s house, she’ll clean out my ears and under my nails. My clothes will be folded neatly–neater than they’ve ever been folded. We’ll color a lot there, and I’ll finally be on time wherever she takes me.

My oldest daughter will feed me anything I want. She’s a candy-aholic. We’ll stay in our pjs and watch movies, and she will kick butt with doctors, let me tell you.

While all this is “play talk,” it’s a good way for families to start easing into the more serious conversations.

I do this on purpose. To open the doors. To make everything not seem so ominous.

We all have living wills. We kid about what we want, but we also have the serious stuff in writing–about sustaining life, feeding tubes, and issues no person should have to make for another.

Am I worried about getting Alzheimer’s? Sure, but I fight it.

Are you? It’s only natural, but I hope you find your own ways to work through some of the fears.

I hope you turn the light on the bully monster in the closet and let him know you don’t plan on being intimidated for the rest of your life.

As I’ve mentioned in other blogs, I know what to do to prevent it as best I can–but life’s still a crap shoot.

I think I’m better off concentrating on having some big adventures, some wild tales and daring feats.

If I’m going to eventually forget everything, I plan on having a lot to forget.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

www.kunati.com

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Caregiving isn’t exactly synonymous with a spicy love life–not until now. Maybe a passionate love life is just what the doctor ordered…

 

Dr. Christine Northrup, Oprah’s gynecologist on speed dial and author of Women’s Bodies, Women’s Wisdom, and the Wisdom of Menopause suggests that you spend 30 minutes three time a week in “self love.”

(Yes, that’s right. We’re talking about the M word)

Now, I can only speak for myself here, but unless “self love” includes eating a bag of Dove chocolates, painting my toenails and thumbing through a magazine, I’m going to have about 27 minutes to kill.

 

It’s not like I have to woo myself or assure myself that I’ll respect me in the morning…

 

As a caregiver, mother, daughter, sandwich generationer, pet “mom,” I have to tell you, thirty uninterrupted minutes is hard to come by.
(pah dum,dum)

 

I figure I can blog about this if Oprah can discuss it at 4:00 in the afternoon while I’m making chicken pot pie.

Besides, a healthy love life is important–and most of us would rather “play with others,” so let’s take the leap.

 

Why bother? You haven’t got time? You have no drive?

You’re beyond exhausted? You’ll deal with “that” later?

 

Here’s why it’s crucial: 

 

Being a passionate person spills over into everything in your life–how you dress, walk, what you choose to eat, how generous you are with your time and energies, how affectionate you are to all living creatures–not to mention the effects giving and receiving love has on your heart, immune system, psychological, emotional and spiritual foundation.

 

Here’s a few tips for revving up the ole’ love life for couples who are also caregivers, raise kids, and walk dogs. Believe me, I’ve been there–forty pounds heavier than I am today–sleep deprived, irritable, and pulled in a thousand directions–and living with a loved one with Alzheimer’s isn’t exactly conducive to candles and teddys.

 

Mom’s Home—Quick, Lock the Bedroom Door!Enjoy Your Relationship Even if Your Mom

Lives With You

· Put a lock on your bedroom door—and use it
· Sneak around—intimacy doesn’t just have to happen in the bedroom. Be playful! Flirt!
· Nix the old t-shirt and sweats and wear attractive PJs—they don’t have to be overly sexy to be attractive.
· Stay affectionate–even if you have to make yourself at first—call each other during the day just for a “Hi, and I love you,” hug and kiss hello and goodbye, cuddle on the couch, call each other affectionate names/ take baths or showers together (you do remember those?)
. Take short walks together—even 5 or 10 minutes of fresh air is invigorating and gives you a chance to talk
· Plan a surprise—sneak out to the yard after dark to cuddle on a quilt under the stars with cups of hot chocolate
. Laugh! Rent a comedy, pop some popcorn and sit ont the couch together–not in dueling recliners
· Don’t sweat it if you aren’t in a lovey-dove mood–caregiving is stressful and there are seasons in life. Remember though, a healthy love life is healing, satisfying and stress relieving—and better for you than a bottle of Scotch

  • If you’re a care partner, you have also face physical challenges. Talk, cuddle, find out what works and what doesn’t. Don’t think you have to “go all the way.” Find your own way.

Being a caregiver, care receiver, or care partner doesn’t mean you–or your loved one is dead. Unearthing those needs and desires means you’re still alive. Love and passion are vital.

Say “yes” to LIFE every chance you get.

And don’t forget–holding hands is still pretty darn great.

Happy V Day!

~Carol D. O’Dell
Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir,
available on Amazon
and in most bookstores

Kunati Publishing

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I’m a sandwich generation caregiver.

My 89-year old adoptive mother (who suffered with Parkinson’s and Alzheimer’s) moved in with us–my husband and I, two of our three daughters, plus a menagerie of dogs and cats.

My situation won’t be the same.

We have three daughters, and I had all of them while I was in my twenties.

That means when I’m 89, my daughters will be 67, 66, and 63. Yikes.

I hope they’ll be in good health and that we can all toodle around and take road trips, eat triple decker double-dipped ice-cream cones and enjoy our grandchildren–and my great grand children.

But there are no guarantees we’ll all be in good health.

And being in your late sixties and caregiving can’t be a picnic.

Just ask all the boomers who are starting down this road now.

Ironically, my mother-in-law has a mother-in-law. Neither are spring chickens. My mother-in-law is 79, and her mother-in-law is 95.

My mother-in-law has begun to slow down and is dealing with an arthritic knee. Her father-in-law died this year  and they’ve been driving three hours a day to help care for his mom (my mother-in-law’s mom-in-law). They’re worried about how things will go in the future, what care she’ll need, how they’ll manage.

They face the same questions I faced–what do we do about mom?

Do we place her in a care facility? Does she live with family?

But they (my father-in-law has his  2 siblings) also have different questions:

Are any of us capable of caring for her–long-term? 

My father-in-law just retired. He was planning on golfing, driving to see all the kids and grandkids, and instead, he’s caregiving.

Guess you just can’t get away from it. The best you can do is look a bit ahead and make a semi-plan.

And as we age, caregiving is even more difficult–physically in particular.

Families have new questions to ask. New plans to make. Grab the moments of fun now and not wait for some “golden” day for that dream trip or to think you’ll sail into your senior years in the glow of a sensual–just-two-love-birds sunset.

My plan is to really, really spoil my grandchildren–afterall, they’ll be young enough to care for me. That, and live big/love hard–now.

~Carol D. O’Dell

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

 available on Amazon and in most bookstores

www.mothering-mother.com

www.kunati.com

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This week, I’ve blogged about the Law of Attraction.

It took me a while to comprehend how we can attract the negative into our life by saying we don’t want something–don’t want to be poor, don’t want to be sick, don’t want to get a divorce…

But then, last week I attended this awesome Alzheimer’s conference, and I learned something very important.

(Might I note here that I’m a school skipper from way back. It’s a wonder I ever graduated.

I personally think everyone should graduate at sixteen, that Jr. College should be paid by the state (or technical school), and that everyone should turn 18 with either their AA degree, or a skill. (sorry, opinions jump subjects at will)

What I mean is that something has to be really, really good to make me stay in the room, be alert, and take notes–and at this conference, I did all three….

Here’s what the presenter said (specialist in Alz)

BAN “DON’T ” FROM YOUR VOCABULARY WHEN DEALING WITH

ALZHEIMER’S AND DEMENTIA PATIENTS.

Why? Because when you say, “Don’t sit own yet.”

They don’t hear the don’t.

It’s just one word, at the beginning of the sentence, their brain doesn’t pick up on it. We even say the word lower in tone, and they simply don’t comprehend it. They do the thing you told them not to. Too many words, and that one matters the least.

Wow.

Why do we think our brains, our lives, or anything else is any different?

We drop the don’t, and attract the rest.

Why? Because it’s not what you say, it’s what you fixate on.

Ohhhhh….now that I get.

It’s like saying, “Don’t think about a purple elephant cooking eggs in your kitchen.”

Can you think/imagine anything else? Of course not!

I planted the image in your brain.

So, how are you attracting the good things into your life?

Are you thinking of those? Are you saying those things out loud?

As a caregiver, or a person who is struggling with a disease such as Alzheimer’s, Parkinson’s, Diabetes, Cancer, MS…joy is sometimes a difficult commodity to come by.

Joy is supposed to be about happiness, right?

And what do I have to be happy about?

Losing my job? Going on two hours sleep?

Dealing with my cantankerous mom? Fighting with doctors and insurance?

Knowing this disease is only going to get worse?

Knowing that caregiving ends with losing my loved one?

Joy is about finding life’s goodness–everywhere. In the small things.

Simple pleasure. Sweet moments. Quiet, deep peace. Allowing.

Trusting. Resting.

I have a new mantra–to hold me over during the time I know what I want or need and actually achieving it:
(it’s on a post-it note on my monitor now)

Trust, Wait, Anticipate.

Trust that good will come my way.

Wait, by finding joy and staying busy.

Anticipate, imagine, and expect the good to show up.

Here are the last of my questions I asked Linda Merlino, author of Belly of the Whale, coming out in April. (check back posts for the premise of this book) Hope you’ve enjoyed my guest blogger, Linda. I’ve enjoyed our Q&A–only thing better would have been if it were face to face and involved coffee.

(I’m the questioner–Linda is the answeree)

Q: Your character becomes proactive, in terms of psychologically. She begins to face her fear. Is this autobiographical in some way? How does facing our fear—whether it’s a gunman, breast cancer, or anything else—change a person? As I said before this is not autobiographical in regard to the breast cancer experience, but beyond that we all have are own fears. I read somewhere that there are only two significant emotions: love and fear.

Fear is paralyzing. Hudson Catalina loses her mother when she is fourteen years old.

Emotionally she becomes immobilized. On the surface she carries on, graduates from high school, goes to college, becomes a teacher, gets married, has children and not until her daughter is born and then her diagnosis does she begin to face the suppressed emotions of her youth. Life often bumps along allowing us to bury significant experiences and generally we do not deal with them until there is a collision, a forced head-on crash of some kind. When the moment arrives that any one of us faces our fears, like Hudson in Belly of the Whale, there is a shift into change. As an example, in an excerpt from Belly of the Whale, Hudson Catalina in regard to her cancer and the killer, Buddy Baker:

“Breast cancer and Buddy Baker were one and the same, both trying to suck me down. Yesterday, I gave in to cancer, gave myself over to a disease that had taken me into the bowels of despair, into the belly of hell; a disease that had no sympathy, no compassion and no purpose other than to kill me. Now I was confronted by Buddy, a black-hooded murderer, another kind of killer who had taken me hostage, who had no mercy, no kindness and no other purpose than to take my life. Buddy and cancer wanted a sign, wanted me to concede my battle with each, to fly the flag of defeat.I glared at him. I would not surrender to either.”

Q: There’s a lot of talk about The Law of Attraction these days. I’ve read some of the prominent writers and speakers in the field, and I’ve heard them say that we attract everything—even violence or illness. We attract it for two reasons: 1) in order to learn from it, and 2) we attract it because we have unhealthy patterns/beliefs, and don’t realize we are attracting such negativity.

This sort of thinking goes against the old adage: “Why do bad things happen to good people?”

While I don’t feel that you—or I—need to make a definitive stand for or against the Law of Attraction, how do you feel about it, in terms of someone who contracts cancer, such as your character, and then winds up in a dangerous, life threatening situation?What can other people who are in real life traumas and dramas glean from this? A: The Law of Attraction is just another name for fear. If a person is negative then negative happens. Why- me-God people can not see the flip side…the glass half full. Why do some people take on this kind of behavior? I believe it is out of fear. Fear becomes their protection, the negativity of their attitude is the barrier created against life. Inevitably, I believe this kind of person attracts the very things they fear.

Now, what of the “good” people the ones that die young, the ones that suffer, the ones that are taken from us too soon? I have no answer; I believe there is no answer, only that there is a reason, a higher purpose to everything and that we are players on the stage of life and we do not write the script. Perhaps the good folk who attract illness or violence are role models. They are the teachers. We, like Hudson Catalina, learn from them. We learn how to die, we learn how to live. In a final excerpt from Belly of the Whale speaking of Willy Wu and Ruby Desmond:“Ruby Desmond and Willy Wu were teachers, the kind of teachers that cross paths and impact lives forever.” ~Linda Merlino

I hope you too, ban “don’t” from your vocabulary.

May you attract joy and find sweetness in each day.

~Carol D. O’Dell

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

available on Amazon and in most bookstores

Kunati Publishing

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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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