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One thing family life and caregiving has taught me is that laughing–and crying–go hand in hand.

Life is funny. Even the hard parts. Sometimes the crazier, more chaotic, more challenging times get, the easier laughter comes. Caring for a mom with Alzheimer’s had its moments of off the chart laughs and deep groans of sorrow. Why? Because it’s living on the edge.

So if you need to laugh visit YouTube and watch a short video I recorded of a caregiving presentation titled,

“If It’s Not One Thing, It’s Your Mother.” This was recorded at a Caring for the Caregiver Conference in Jacksonville, Florida sponsored by Community Hospice. The room was filled with mothers, daughters, sons, spouses, elder-care professionals–and all of them could relate in one way or another to my story.

In the video, I play both my mother’s and my part. Yes, in case you’re wondering, that’s an authentic Southern accent. It recounts a time of taking my mother to K Mart–one of the countless errands we ran together. Like life, this video encompasses the range of emotions families and caregivers go through every day–the frustration, irritation, sweetness, incessant arguing, tenderness, and you-drive-me-crazy times we face on a daily basis.

I thought, at the time that taking my mom to a zillion places, learning to be patient, learning to be firm when I needed to be and tender when she needed me to be, was more than I could manage. Stress central. In retrospect,  I’m so grateful for that bubble of time we had together. Yes, my mother was grumpy, bossy, and demanding, I was a few of those things myself–and more. But together, we made a pretty good team.

So get a drink, play this short five minute video–and I hope you smile.

~Carol O’Dell,

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

Family Advisor at Caring.com

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I wrote these words during the early weeks after my mother moved in with us. It captures the concern, guilt, and trepidation we all felt on this new venture.

 

I didn’t feel I had a choice–about insisting my mother move in with my family and me. My mother’s Parkinson’s and early signs of dementia had grown to the point that I didn’t feel she was safe living alone, or that her care was something I could continue to farm out to paid care, extended family, church members and neighbors. She needed consistency. She needed me.

 

 

But it wasn’t easy on either of us.

 

 

Here’s an excerpt from my journals, and what later would become my book, Mothering Mother.

 

 

“I think Mother would just like to sit down and cry. She can’t figure out the layout of the house and says she doesn’t want to sleep downstairs. I explain that there isn’t a downstairs, but her apartment is on the opposite end of the house from my bedroom. It’s so far away that she must feel like it’s on a separate floor. She keeps saying she wants to sleep next to me. Not in the next room, but next to me. She walks around touching the walls as if they could collapse on her if she were to let her hands down. She sits in my dining room chair with nothing to do. I’ve made her breakfast, given her the paper and told her I need to unpack the kitchen, which she can see me do from where she’s sitting.

I feel as if I’ve taken everything from her, which she enjoys announcing to everyone, from the bank teller to the podiatrist. She makes sure to note that she’s selling her house, moving in with us, and giving up everything—her church, her friends, and her home. I stand beside her as she regales them with her sob story, wishing I could add what I am giving up—my freedom, my privacy, my mind, and that I’m not doing this to hurt her. I’m trying to help. Instead, I smile and pat her hand, hoping she’s receiving the sympathy and attention I can’t give.”

It took some time for all of us to get used to living together. I still had two teenage daughters at home. Along with “mother issues,” I had to contend with boyfriends, curfews, teen drivers, and the ever threatening emotional outburst from any of them–at any time. Mother was usually the first to blow.

 

“Mother, I want you, we all want you. Relax. You’re here now, and we’re all at home. This is our home. Please give us time to adjust.” I think of my own mother angst. I spent the first half of my life trying to get away from her and the second half trying to get back.

The cat walks by and rubs against her leg. I don’t know why that cat insists on cuddling up to the only person in the house who would like to throw it across the river. Mother pushes it away with her foot, gentler this time because she knows I’m watching. She looks disgusted. I try not to laugh.

“Go on now, scat!”

Great. Now I have to play referee between her, the kids and the pets.

 

 

 

 

For me, being an adult, a daughter, a wife, and a mother at the same time was challenging to say the least.

 

“We’re having to figure out how to stand next to one another in the kitchen, how to maneuver past each other in the hall, not just physically but even in our thoughts. No one fits every groove of our psyche, habits, or beliefs, and those knots and bumps rub us raw before we develop calluses. As hard as this is, I’m not in a hurry to get to the dying part. I want to face each day and glean whatever sweetness there may be, to truly be here, open my eyes wide and learn to stand next to her, neither one of us shoved to the side, each with a decent amount of space.”

 

 

 

 

I think women are particularly vulnerable into morphing into whatever and whoever someone needs them to be–to the point of losing a piece of themselves. We are the ultimate super-hero, we lose our identities in order to care for others.

 

 

Caregiving takes it even one step further. Your loved needs more. You are their protector, their provider. You are their lifeline.

 

My mother’s apartment was next to my kitchen and laundry room and was the parallel opposite to my bedroom.

 

I can remember evenings of helping my mother change into her gown, giving her the last of her medication, tucking her into bed, kissing her goodnight…and then walking through the kitchen and feeling myself “stripping” that caregiving/daughterly clothes and having to change into the next person I was to be–to help a daughter study for her SAT’s, or become a wife, my husband’s lover. All within moments…a new identity.

 

 

How do you keep your head and heart intact?

 

  • Believe you can do this. You were meant to do this–wife, mother, daughter, friend, co-worker. You have lots of experience already. Life never comes to us orderly. You have to be able to unload the dishwasher, talk to your best friend, pack your kid’s lunch, kiss your hubby goodbye for the day, and hand your mother a bowl of oatmeal–oh, and don’t forget to feed the cat.

 

  • Having your mother move in with you–or you with her–isn’t the worst thing in the world. Not having a mother is far worse. Yes, you’ll have a few squabbles, at least I hope you will. Your mother will teach your more about yourself than ten shrinks ever will.
  • Becoming your parent’s parent is the hardest, fastest, best way to really grow up. Whatever residual crap you had left over about your childhood (or adulthood) issues, you will finally either forgive or give up. It just gets too hard to stay angry and do everything else you’ve got to do.
  • Put yourself in your mother’s place. One day, you will–so take a moment to consider how vulnerable they feel. Their bossiness, negativeness, or fussiness is just a cover up. It helps to remember that it’s much easier to be the one in charge than the one in need.
  • Speak up. Set boundaries. Don’t give anyone–your kids, your husband, or your mother all your time and energy. Save some for you. Be alone every day–for ten minutes. I don’t care if you have to lock yourself in the closet, go to the mailbox and stand by it for ten minutes pretending to read the mail–be alone. Take long baths. Drink your coffee on the back porch. You do not have to be at anyone’s beck and call every second of the day. It’s not good for you. It’s not good for them.
  • If you don’t pray or meditate–start. You’ll need it. Find your center of strength. Ask for help, guidance, and wisdom.
  • You might not like it, but you’re probably a lot like your mother. The quicker you learn how to love her, the quicker you’ll love you.
  • Don’t let every little comment get to you. So what if she thinks you’re a slob, wear your shorts too short and can’t cook. There’s no better way to get over what people think of you than to practicce with your own relatives. Smile and be content with being just who, and just how you are.
  • Our minds, bodies and spirits are meant to love a lot of people. You can do it. You can find the patience and perserverance to do this. You will surprise yourself with how much you can love.
  • Caregiving is stressful, I won’t try to water it down in the least. You will have to be on your game almost all of the time. You will lose your cool, cry, curse, and at times, fall apart. But you are resilient. You will rebound.
  • This won’t last forever. I promise. It won’t. Parents die and kids grow up. My mother’s gone now–and what seemed like an eternity is now a memory. And I miss her.
  • Being a part of a family and caring for someone intimately is a priviledge. It’s messy, heartbreaking, hair tearing, and scary–but the alternative is orderly loneliness.

When it’s over, let go.

You will most likely grieve, feel secretly relieved, guilty, resentful, and scared all the way through and especially after it’s over. But this will pass. Your parent will become a part of you–in a cosmic, spiritual, and even on a biological level.

It will then be time to recreate who you are again.

Trust that all you need to know you already know.

You will find your way.

 

 

~Carol O’Dell

Family Advisor at Caring.com

Mothering Mother is available at Amazon

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Remember the old Art Linkletter show? About kids saying funny things?

Well, parents can be pretty darn funny too.

My mom may have had Parkinson’s, Alzheimer’s and a heart condition, but she could still say and do the craziest things.

It’s okay to laugh. We have to. If we don’t, we’ll just dissolve into a puddle on the floor.

Why is laughter so good for you?

“The old saying that ‘laughter is the best medicine,’ definitely appears to be true when it comes to protecting your heart,” says Michael Miller, M.D., F.A.C.C., director of the Center for Preventive Cardiology at the University of Maryland Medical Center. “We don’t know yet why laughing protects the heart, but we know that mental stress is associated with impairment of the endothelium, the protective barrier lining our blood vessels. This can cause a series of inflammatory reactions that lead to fat and cholesterol build-up in the coronary arteries and ultimately to a heart attack,” says Dr. Miller who is also an associate professor of medicine at the University of Maryland School of Medicine.

Cool, huh?

So, what makes you laugh?

Think about the movies where you’d laughed out loud.

I just saw Tropic Thunder–and laughed until my sides hurt.

I warn you–it’s raunchy from the beginning to the end (and I’m not usually a raunchy humor kind of gal–not a big Austin Powers fan). But it’s also well-written and sharp.

Make Your Own Funny List

  • Funny movies
  • Funny friends
  • Great jokes
  • Funny songs or rhymes
  • Funny or ironic moments in your own life
  • Funny, sharp, witty turns of phrases
  • Funny books or authors

Begin to see the “funny” in each day. Start looking for it.

The Benefits of Laughter

Dr. Lee Berk and fellow researcher Dr. Stanley Tan of Loma Linda University in California have been studying the effects of laughter on the immune system. Published studies have shown that laughing has the following benefits:

  • Lowers blood pressure
  • Rreduces stress hormones
  • Increases muscle flexion
  • Boosts immune function by raising levels of infection (fighting T-cells, disease-fighting proteins called Gamma-interferon and B-cells, which produce disease-destroying antibodies)
  • Triggers the release of endorphins, the body’s natural painkillers, and produces a general sense of well-being

Wow! Too bad the pharmaceutical companies haven’t caught on. I wish they’d include a complimentary Saturday Night Live video with each of their prescriptions!

I’ve laughed my head off at an indecisive squirrel who just can’t seem to make it across the road. I’ve laughed at my dog eating peanut butter–I’ve laughed at my ability to trip walking down a flat sidewalk!

Recently, I was at a caregiver’s conference, and after my talk–in which I do a one-act play of my mother and I having an arguement about me refusing to wear a slip–a woman in the audience whispered in my ear, “It’s probably been over a year since I laughed. I laughed today.”

There is no better gift she could have given me.

We caregivers can get too darn serious. Sure, we’re dealing with disease and end-of-life issues–but the absurdities and incongruities of life are even more ironic, more funny when there’s so much at stake.

Mark Twain said,

Everything human is pathetic. The secret source of Humor itself is not joy but sorrow. There is no humor in heaven.
– Following the Equator, by Mark Twain

 

 

Finding the funny in caregiving kept me alive. I had to write about all the crazy, irreverent, whoopsy-daisy moments caregiving brought into my life. Sometimes I wrote about it with biting sarcasm, other times, it’s tinged with sorrow. You can’t separate it–caring for our loved ones is bitter sweet. I’m grateful that my mother could laugh at herself–at us. When I was a child (she was my adoptive mother and 50 years older than me), we’d watch Jack Benny together and Red Skelton. We’d laugh and laugh. I’d stack their stand up routine against today’s finest–and they’d still trump these guys (and gals!)

Mother had a gillion sayings. She knew she was funny–and she could wait for a punch line.

I’m so grateful to have been brought up in a house where we could laugh.

Here are a couple of excerpts from Mothering Mother when my mother was at her finest!

Remote

Mother can’t figure out all this “high-falutin’ machinery,” as she calls it. The phone rings, 

 

“Hello. Hello?  Hello!”

 

She doesn’t know she’s picked up the remote control.

 

“Hello!”

 

No one answers. She sets it on the table, thinking she’s hung up the phone, but somehow she’s knocked the real phone off the hook. It starts making that noise. I reach over and hang it up.

I look at her but don’t say a thing. I’m trying not to laugh.

“They must have hung up,” she says.

I agree.

“Yes, mother. Someone has definitely hung up.”

***

No Bacon?

I need to go to church. I need to get out this house, wear a dress and sit on a pew and sing a hymn and pray. I desperately need to know I’m not just out here on my own.

 

I dress and hurry to fix Mother some breakfast. I place cereal, toast, coffee and cut-up bites of cantaloupe in front of her, then hand her the little silver tray of pills, the same silver tray she always handed to Daddy, and give her some water to take her medicine with.

You can’t hurry Mother anymore. She’s worse than a preschooler meandering down the sidewalk, pausing to examine a ladybug on a blade of grass and pocketing every pebble.

“Are you sure I take this purple pill now?” Mother stares at the silver tray as if I’m trying to poison her.

“Yes, Mother.”

“Where’s the yellow one? I need to take the yellow one.” She dumps the pills from the tray into her hand.

“No, Mother, that’s with lunch. You take these with breakfast.”

Is it breakfast time?  I thought it was late afternoon.”

“Yes, honey, it’s breakfast. Swallow these pills and then you can eat.”

“Where are you going?” She looks around the room, tilts her hand, and drops the purple pill onto the floor. I find it on the carpet.

“Church, and I need to hurry.” I put the pill on her tongue.

“Is it Sunday?  I need to go to church, too.” The pill drops out of her mouth.

“No, Mother, you’re not strong enough today, sweetie. Phillip is staying home with you today.” I pick it back up.

“I can get ready in a jif.”

“Mother, take these pills. I need to go.”

Aw, you’d wait for me.” She reaches in her house robe pocket and pulls out a long strand of pearls then puts them on over her housecoat.

 

I rub my face to keep from chuckling at her attire or screaming at how long this is taking.

I think of what she’s really like, of the Sunday mornings of my childhood and our intricate dance of preparation. The ironing that commenced on Saturday afternoon, the cleaning out of her purse, the polishing of everyone’s shoes, the check of the nylon hose for runs, the dab of clear fingernail polish… on and on… late into the night, beginning again early on Sunday morning, culminating in southern perfection.

 

Now, it’s a sling of the beads over a well-worn housecoat and she’s good to go. This isn’t like her.

“No, I can’t wait for you, honey. Maybe you can go next Sunday, but you can’t make it today.” I don’t like the sound of my own voice, the hurry inside me.

“Who’s gonna stay with me?”

“Phillip. Now take these pills and sit down and eat.” Five minutes later, I’ve scooted her from the bed to the chair and put the tray in front of her. She surveys it, scanning the food as if she’s a New York food critic, flicking a cantaloupe chunk onto its side with her fingernails. I turn on the television to a preacher I know she likes and take a step back, sneaking out of the room the way I did when my girls were babies so they wouldn’t cry.

“What?” She looks around on her plate. “No bacon?”

***

I’ve heard some of the greatest stories by families and caregivers around the country.

One story I can share is about a man who works at home and takes care of his mom who has Alzheimer’s. She “goes to work” with him–sits right beside him at the computer. When the man’s wife comes home from work, the man’s mother goes ballistic. She sees his wife as “the other woman.” She hides her purse, pinches her under the table, and tells her “to leave her man alone.”

That could really mess with your head!

***

One more story–(I have a million!)

A friend of mine was placing her 91 year-old mother in a care facility (falling/memory loss). She and her sister were cleaning out her mom’s house and consolidating things. She found a rather bright pink Las Vegas type dress–kind of ballroomy with lots of sequins. They decided to donate it to Goodwill and couldn’t imagine who the dress even belonged to–surely not their mother!

A month later their mother asks her daughter’s, “Did you all see that pink dress I had in the back closet? I want to be buried in that dress.”

The two daughters looked at each other–tried not to laugh–and said of course, that would be perfect.

They spent the next 2 months trying to track down the dress. Sequins and all.  

***

So come on, share your stories!

Let’s laugh to the point of tears–not laugh at each other but at life and all it throws our way.

Carol O’Dell is the author of Mothering Mother, available at Amazon

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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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You can’t watch someone you love struggle with a disease and not be affected.

But what can you do?

As a caregiver, family member or friend, you can’t make it go away.

Alzheimer’s and Parkinson’s are two debilitating diseases that are slow and grueling and take a toll on people’s spirits, and affects everyone around them. For some, they turn into fighters, but even fighters get tired. 

You can’t offer your bone marrow or donate a kidney–you feel helpless to help.

And yet, there’s a group of family and friends who are doing something phenomenal to raise funds and awareness to fight these two monster diseases.

It’s called:

“10 Mountains – 10 Years” – A Quest for the Cure.

 

 

One decade long, 44 ½ vertical miles high, 7 countries, 6 continents and 2 diseases.

The Regulars” an international team of climbers has begun to mount what may very well become the grandest, most physically demanding, and exciting campaign to raise awareness and funds needed to help find cures for Alzheimer’s and Parkinson’s disease.

“This years team has the most dynamic line up to date”, said team captain Vincent Roland Simone. “The team will range from inexperienced to experienced, and from 11 years old to 50 years old. In the end I honestly believe regular people will play a big part in conquering these diseases”.

In 2006 “the Regulars” began their epic on Mont Blanc (France) the highest peak in continental Europe. Collectively their route around the globe from Mont Blanc to Everest 2015 will be named a “A Trail called Hope”. Each year the expeditions will be attempted in honor of the collective 30 million family’s world wide who have been directly impacted by these diseases, the care givers who ease the struggle of those affected, and the scientists who diligently battle to find a cure. A victory in reaching these summits is symbolic of overcoming the many challenging milestones in medical research and funding needed to find the cause and a cure for Alzheimer’s disease & Parkinson’s disease.

According to the Alzheimer’s Association, “an estimated 5 million Americans have Alzheimer’s disease.” Unless a cure is found, “by 2050 the number of individuals with Alzheimer’s could range from 11.3 million to 16 million.”

None of these figures account for people affected in other countries. There is no cure.

Today more than six million people worldwide are living with Parkinson’s disease, and 40% of those people are under the age of sixty. Currently one of the youngest people diagnosed was 8 years old at the time of diagnosis. Over the course of this year 60,000 new cases will be diagnosed. There is also no cure for Parkinson’s.

The “10 Mountains – 10 Years” (a quest for the cure) project is unique in a number of other ways:

• Supporting two major high profile organizations: the

 

 

 

Alzheimer’s Association & the Michael J. Fox Foundation

• The first climbing / awareness / fund raising event to span a decade, climb more than 44-1/2 miles into the sky, endeavor to reach 10 mountain summits in 7 countries, on 6 continents, in an effort to help conquer 2 diseases.

• A yearly opportunity for people, media, corporations, scientists, and governments to revisit the topic of each disease. The 10/10 project is a look back into the past year to assess the strides made by all of the above, it is also a look ahead to goals being set in research for the coming year.

• Ultimately, it is a story of how a small group of

 

 

regular people can decide that they can make a difference – great or small – then follow through with their personal promise to make it happen.

 

This year on Independence Day

 

 

 (July 4, 2008) four of “the Regulars” returning team mates will join Eileen Colon /Bencivengo on

“A Trail Called Hope – III – Mount Hood”

Collectively she will join additional team mates from Texas, Colorado, New York, California and England on the mountain in hopes of reaching the summit and helping to raise awareness for the cures. One team mate (a retired fire fighter turned photographer) residing in Colorado suffers from Young Onset Parkinson’s and will join the Regulars on the Mount Hood summit climb in hopes of inspiring others with Parkinson’s and or Alzheimer’s to never give up on themselves.

The team for “A Trail Called Hope III – Mount Hood”, which is third in a set of ten mountain climbing expedition will be the following:

 

 

 

Team Captain:

 

 

 

Vincent Roland Simone (41) – New York.

Team:

Eileen Colon / Bencivengo (50) – New Jersey

Eric Buzzetto (27) – New York

Daniel Simone (40) – New York

Tyler Simone (11) – New York

Brett Curtis (32) – United Kingdom

Jennifer Yee (24) – California

Matthew Jimenez (21) – Texas

Troy Parker (46) – Colorado

Cy Maramangalam (28) – New Jersey

In 2007 Jennifer Yee an independent film producer and owner of Back Light Productions joined “the Regulars” team. Backlight Productions began to film a multi part film documentary in September 2007. The documentary will not only follow the efforts of “the Regulars” over the course of their decade-long mountain adventures in raising awareness and funds, but also document the progress and setbacks made in Alzheimer’s and Parkinson’s during the coming decade. The first release will focus on the events surrounding the Mount Hood Climb.

***

I recently talked with Eileen Colon, one of the newest members who’s putting on a fundraiser this Saturday, May 17th to raise funds for their upcoming climb. I wanted to know what (or who) inspired her, and why, at 50 years old is she climbing her first (of many) mountains?

Here’s our discussion:

What was your first encounter with Parkinson’s?

My first encounter with Parkinson’s Disease came when my sister-in-laws father was diagnosed with it late in his life and passed from it.
There are two wonderful friends of mine that I met through Myspace that have Young Onset Parkinson’s Disease.
I have formed a team “Jim’s Gems” for two years now and have taken them to NY for the Unity Walk. I did this in honor of my good friend Jim who has the disease. My other good friend, Ken Glowienke, from Focus on A Cure for Parkinson’s, also has YOPD. I met him for the first time last year at the Unity Walk. He flew in from Chicago to be part of my team. Our friendship is one I cherish with all of my heart. He has the most beautiful and loving wife and I share a special friendship with her also. Jim and I train in the martial arts under the same association so we are always thrown together at tournaments and special events. I cherish my friendship with him also. He was my inspiration in becoming involved in the Parkinson’s community on Myspace and for bringing Enzo to me from the Regulars.
Who all has been affected by Parkinson’s in your life and how has their struggle made you look at your own life?  My mother had Parkinson’s for close to 15 years, and so I’m quite familiar with the issues that arise. My mother always had a tenacious spirit, but I found that Parkinson’s made her even more determined to be independent for as long as possible. Is this true among those you know who struggle with PD?
I look at life very differently now. I make myself walk in there shoes. I fight for every one I know with this disease plus the ones I don’t know. I take my role as an advocate very seriously. I want to ensure my own children will not be faced with this. I posted a blog about the heart of an advocate on my Myspace page. It says it all for me.
I walk and now climb, fundraise and draw awareness for those that can’t. As long as God gives me the strength to do this, I will. And when the strength to physically do this runs out I will still advocate in other ways. I look at life as a gift. Each day that I wake up I thank God for giving me this day to continue being a good mother to my children and for still being able to advocate.
The two men I speak of have the most tenacious spirit and determination to beat this disease that I have ever seen. There are so many others that I don’t know quite as personal who also fight this fight with there heads held high. As we hope for a cure, and it seems so close, there fight becomes stronger and stronger. They are true inspirations in my life. They push me to help get them closer to a cure. They are my heroes.
Tell me about your fundraise on May 17th and what are your goals?
My fundraiser this Saturday is part of my efforts to raise funds and awareness for Alzheimer’s and Parkinson’s disease in conjunction with my team The Regulars. It’s hard to say how much I will raise. It is an Open House for my karate studio also and it will be advertised in the paper. So it depends on how many people show up over the course of the day. I have been in karate all week selling Raffle Tickets for a Chinese Auction I have going on.
How did the “Ten Mountains in Ten Years Project” get started?
Enzo Simone from Amawalk, NY divised the 10 mountains 10years project. His mother has Alzheimer’s and his father-in-law has Parkinson’s. I had the pleasure of meeting them both at the Unity Walk in April as Enzo came in to join me with my team.
The mountains:
Mount Blanc – France
Cotopaxi/Chimborazo – Ecuador
Mount Hood/Mount Shasta – USA
Aconcagua – Argentina
Kilimanjaro – Tanzania, Africa
Mount McKinley – Alaska
Mount Elbrus – Russia
Cho Oyo – Khumbu Himalaya Nepal/Tibet
Vinson Massif – Antartica
Mount Everest – Himalaya, Nepal/Tibet
How’s your training going?

My training is going well. I threw on my backpack for the first time on Mother’s Day and went for a hike. It was a challenge but I eventually got a feel for it. I train almost every day. Six days a week but now I am training everyday.
Can anyone join in at any time?
Anyone can jump on board at any time to be part of the Regulars Street Team. However, the climbs are planned and you either receive an invitation from Enzo or you send him a message saying you would like to join one of his climbs.
I received “The Call” on Myspace because we were friends and he was impressed by my advocacy work on my other causes. I accepted and my journey began.
How has this changed your life already?
I challenge my body on a daily basis. I was an athlete from the time I was in third grade. When I married at 22 and had my first son, my atheticism slowed down. Occassionally exercising. Life dictated other things and I had three more children and never had time. When myone son joined karate it sparked my interest. I eventually signed on and have been training in the martial arts for over eight years. I am a second degree black belt. Testing is grueling so a lot of preparation goes into getting to that point. I have walked 60 miles in three days for Breast Cancer, two years in a row. When Enzo asked to join his team I doubted myself for a second or two and then went in head first to get ready.
It is very challenging to train everyday and still be mom and run a household. I feel my boys are inspired by me. They see there mom going out there and proving at my age, 50, anything is possible. And it is. So I look at my boys and I step up to the plate and do this for them.
***
I have to say, I am impressed and humbled by this small band of “regular people” and their devotion to those they love and their fight against the diseases that have so deeply effected their lives and the lives of those they love. This is love in action.
Anyone out there who feels stuck in their own life, who is also affected by this disease–either as a caregiver, friend, or person struggling with this disease, I hope you’ll consider contributing to this cause–and cure.
We all long to be a part of something that makes a difference, and Alzheimer’s and Parkinson’s take so much control from our lives and our bodies. By finding a way to give–or help spread this message (please feel free to cut and paste and send this blog to anyone and everyone), you’ll get a little bit of control back. You’ll feel that you contributed your grain of sand–and each grain helps tip that scale.
As a small added incentive, if you do happen to purchase my book, Mothering Mother: either on Amazon, Barnes & Noble.com, Target.com, or order it from your local bookstores, between now and July 4th, email me at writecarol@comcast.net to say you’ve done so, and I’ll donate two dollars per book to this cause.
Mothering Mother was written in “real time” during the last three years of my mother’s life. It tells the truth about caregiving and family life. It doesn’t just focus on the bleakness of the situation, but also incorprates the hilarious moments, the mother-daughter fights, the contempletive thoughts of life, and the nitty-gritty details that often get glossed over. I wrote it because I felt so alone and isolated. I needed something for my soul, my intellect, my creativity–something that incorporated what Parkinson’s and Alzheimer’s does to relationships and how you see yourself. I hope it touches it lives of many who find themselves on a similar journey.
My mother suffered with Parkinson’s for 15 years–and I became her companion, I stood in the doorway as she trembled, as she tried so very hard to will her body to move.
During the last three years of her life, she moved in with my family and me, and then she developed Alzheimer’s (I suspect it was there before and I was too much in denial and exhaustion to recognize it). I know too well what these disease does to your life, your head, your heart, your faith, and your spirit.
None of us could make it without our support.
I hope you’ll find a way to spread the word, give, and cheer on this courageous team.
available on Amazon or request it at your favorite bookstore
Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

 

For further information please visit the Regulars website:

 

 

or http://www.myspace.com/10mountains10years or

http://10mountains10years.blogspot.com/

For the Michael J. Fox Foundations for Parkinson’s Research.

P.O. Box 4777 New York, NY 10163

(212) 509-0995 ext. 204

 

http://www.michaeljfox.org

 

 

and for Team Fox visit www.TeamFox.org

Donations to the Alzheimer’s Association & the Michael J. Fox Foundation in honor of the

Regulars “10 Mountains – 10 Years (A Quest for the Cure)” project:

http://www.theRegulars.org

Once on the Regulars Website please click the page entitled “Donate Toward Research”

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We always think that happiness is “out there.”

When I get a new job, when I take vacation, when I lose 30 pounds, when…

Happiness is not that hard. We make it hard. Happiness is having new eyes. A fresh perspective.

After I moved my mother in with us to care for her, (she had Parkinson’s and Alzheimer’s), she used to tell everybody–the postman, the grocery clerk, the pastor, the lawn guy, that she had given up everything to move in with me–her house, her car, her friends, her life.

Apparently she thought I had given up nothing.

I would stand next to her and smile and let her have her moment, get the sympathy she thought she deserved although most people had no idea what to say.

It reminded me of a precocious two-year old I knew who would run in from playing with a tiny scratch on her arm and pronounce to the entire room, “LOOK AT WHAT HAS HAPPENED TO ME!”

There were times as a caregiver (and other times in my life) that I wanted to do that, pronounce it to the world.

But somewhere along in my early adult life (after years of anger and hurt about being adopted and other very painful issues) I got tired of my own whining. I simply wore it out. I was tired of being known as the girl with the problems.

I decided to be the happiest person I knew.

Not a sappy Pollyanna happy type you just want to slap, but deep-down easy, not in your face joy.

It hasn’t been a linear path getting here, but I am pretty darn happy.

One day, while caring for my mom, she toodled into the kitchen, slapped her hand down on the counter and pronounced, “I’m not happy!”

As if I could bop her over the head with my fairy wand and “Voila!” instant happiness.

I looked at her, my mother who truly was a happy (in a self-centered, domineering, the entire world is here to serve me kind of way) person. It just wasn’t easy, and life isn’t always easy. She didn’t like having to leave her friends and move in with me. Her body was giving out and Parkinson’s had taken its toll, also, Alzheimer’s and depression are linked. Most days, she couldn’t toodle into my kitchen. She didn’t like that I had to divide my time away from her to take care of my children and my marriage. She didn’t like that her life was playing out and that sooner, rather than later, she’d die.

But I couldn’t fix any of that.

I just looked at her with this dawning revelation.

If only one of us could be happy, then I’d choose me.

Kind of the life raft theory. Who do you kick off the boat?

The one who most likely won’t make it any way.

Sounds terrible, I know, and I had truly, truly, truly tried to make her happy–and more than that, I had tried to take care of her, keep her safe, keep her alive.

But if the people around you simply choose not to be happy, then realize you can choose otherwise.

Choose joy.

My life is far, far from perfect, and I’ve been kicked in the teethquite a few times, but this morning, I rode my bike for five miles with my ipod on singing my heart out.

I have a new CD–Grey’s Anatomy’s Third Season, and I love the compilation of songs and artists. I belt it out, make figure 8s and circles with my wheels, and dance on the bike (be-boppin’ up and down) and I don’t care what anybody thinks.

Why should I? In the first place, hardly anyone’s home at 10am, and most people I know aren’t happy–or at least they don’t act happy, so why should I care if I’m known as the crazy bicycle singer?

My kids think I’m nuts, but they’re used to me by now.

My morning coffee, my journal, my glider, the sun, my bike, my ipod, my afternoon dark chocolate fix–the warm, strong hug of my husband–these are what I call give me my “happy fix.” They bring me immense daily joy. They cost very little, and I try not to run out or get so busy and stressed that I don’t do these things I love, the very things that sustain me.

Caregiving was grueling at times, and the end was really, really tough–but it taught me to love, to give, to stretch beyond myself, and it was for a season.

Since my mother’s passing, I’ve learned that life is pretty darn short and I better snatch all the sweetness and joy I can. Parts of my life are still crappy, and I’m not always this giddy–I tend to be more so in the spring and summer, so if I’m getting on your last nerve–sorry.

What I hope for you today is based off something I read this morning in Alan Cohen’s Daily Devotional book, A Deep Breath of Life,

April 14th entry:

I used to think I was a perfectionist.

I was constantly finding flaws and errors other people overlooked. If there were many aspects of a job that was done well, I would point out the one area that wasn’t.

But now I realize I was an imperfectionist.

If I was a perfectionist, I would have found perfection everywhere I looked.

***

That BLEW ME AWAY. I hope it did you too.

I plan to become a happyologist.

~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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Do you feel like running away?

You may have restless caregiver syndrome.

What’s that, you ask?

I may have made up the term, but I certainly experienced it firsthand.

Have you seen the commercials for restless leg syndrome?

They’re kind of quirky, and I’m not saying that it’s not a serious disorder, but it’s presented in a way that makes my own legs twitch! Nothing like an idea planted in your brain.

But that’s exactly what I felt like some days as I cared for my mom who had Alzheimer’s and Parkinson’s. I just couldn’t sit still. I wanted to run, to stay busy, to go, go, go.

I guess I was scared.

I was scared my mother would consume me.

I was scared that this was going to be my life from now on, and that by accepting it now, I was accepting it forever.

I was scared that if I sat still, thought too long, I’d realize it was a mistake, that this wasn’t what I wanted to do. I was scared I’d grow old and not have the life, the adventures, the memories and journeys I’d always dreamed of.

Restless caregiver syndrome happens off and on in the caregiving process. It occurs when you’ve given up your old life in order to care for your loved one. It’s also compounded by a sandwich generation lifestyle where everyone wants something from you all the time. And, if you’re female, you may be dealing with the oh so lovely change of life–men-o-pause. And, on top of that, you’re probably a boomer and thinking about your own future, i.e. finances, career, retirement, aging, etc.

You became a caregiver because your loved one needed you. You did it believing it was the right thing to do. You told yourself there were some benefits—getting out of a dead-end job, able to spend more time at home, maybe take better care of your own health, or begin that second career you’ve always dreamed of.

Only…

Caregiving isn’t quite what you’d thought it’d be. You’re bored. Stressed. Unmotivated. Overwhelmed by all the stuff there is to do, and how little you feel you get done. You have time (sometimes) but no focus, no initiative.

Your loved one certainly needs your assistance, but you didn’t plan on becoming someone’s personal butler, driver, maid, and cook. They also seem to enjoy your being at your beck and call—or they’re miserable, fussy, or constantly apologizing. You didn’t think all this emotional baggage would come in tow.

You‘re consumed by caregiving even when you’re not caregiving.

You’re fumbling in your own life. Directionless. How long can this go on? The years stretch out in front of you like a vast desert. Some days, sure, you feel on top of your game, but there’s also an underlying sense of sadness. You know where this is going to end.

A restlessness has built up inside you. You gotta get out. You can’t sit in that living room chair one more minute. You can’t scramble one more egg. But you’re stuck.

How to Combat Restless Caregiver Syndrome:

·       Play a game with yourself: if you were under house arrest, but you weren’t caregiving, what would you do? What resources do you have right at home?

·       If someone gave you three years to reinvent yourself, what would you do? Learn a new language? Take some classes and become a computer whiz? Sell your handmade jewelry online?

·       Create a structure you can live with. You call the shots. You decide when dinner is, you decide the med routine. If you want your loved one to go to bed at 7pm so you can have the night to yourself, then arrange it. Create boundaries you can honor that make your life easier.

·       Start planning for time off. Check into respite care; hire a CNA for $20.00 an hour. It may take you a while to get all this in order, but do your homework, find someone you feel your loved one is safe with, and start taking regular breaks.

·       Don’t use your take out for anything that you aren’t dying to do. Go for a mountain hike, antique shopping, to the local pub to watch a football game—anything that will make you feel as if you’ve truly taken a break. No errands. No combining. Time off is time for you.

·       Create a room—your bedroom, a spare office, part of the garage that is just for you. Make it your haven. Put a cooler in there with drinks, stock a mini-bar, and collect magazines only you like— and go there — alone. Your family and loved ones will respect what you respect—and they will run rough-shod over you if you let them.

·       Call a friend and vent for 10 minutes. Set the timer and then just go for it. After that, tell your friend to forbid you from any further complaining for the day. Complaining and whining and griping are good, but not when it’s a toilet bowl that never flushes. I mean that visual to be disgusting so that you’d STOP. Incessant thinking is unhealthy.

·       Use your fidgetiness and wear yourself out. Do something physical—put all your anger and edginess into it. Clean out the frig, scrub the bathroom tiles and get out the gunk around the shower door. Use your restlessness.

·       Find a safety valve. If you’re really about to blow your top, how can you get away? Do you have an emergency person? Can you take them to adult day care? Are they okay for a couple of hours alone if you really couldn’t take it anymore? Have a plan B—because sometimes, it all gets to be too much.

·       If you have siblings and you’ve been carrying this burden alone—then make the call and insist they help out in some way. Even if it’s paying for home help, then that’s a help. Don’t let resentment and exhaustion build up. Tell them how hard it is. Insist you get a weekend off every few months—and a week or two of vacation time a year. You only get what you ask for, so ask!

·       Don’t be a perfectionist and think everything has to be exactly right and exactly your way. If you do, you’ll be a slave to the mundane. Choose a few things to do well, and a few things to do lousy. Nobody ever died because the forks were sticking up in the dishwasher.

·       If your loved one is being ugly, then get in the car and leave. Even driving around the block helps. I used to walk out back, down the embankment out at the river—and scream. So what if the neighbors heard! Better they hear me scream than gunshotsJ They’re adults and can be alone for 5 minutes and they need to be taught that you will not be mistreated. Make that point clear.

You get what you allow.

Sometimes, you’re just going to feel restless as caregiver. You’re going to want to run, to scream, to change your name to Flo and become a waitress on some seaside pier restaurant (my fantasy, not yours necessarily).

When you feel like running, then run. Get out as much as you can. Even if it’s just out the front door and around the block. Hide, sneak out, stay in bed an extra half hour, stand in your shower until the water turns cold. Do what your gut is telling you to do–at least in some small way. If you let off the pressure valve, then maybe, maybe the whole thing won’t blow.

Trust yourself. Trust your journey and this process.

Later, there will come a time when you might not be able to “run,” so do it now. Trust that you will come back.

After your loved one passes, you’ll go through this all over again—there’ll be days when you just can’t be at home. It’s a part of the grieving process. There’ll be other days, or weeks that you can’t make yourself leave. Home feels safe.

Again, trust yourself. Trust that your body, your soul, and your heart knows how to heal itself.

~Carol D. O’Dell

Family Advisor at Caring.com

Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir, available on Amazon

www.mothering-mother.com

www.opentohope.com

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