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Creating a bedtime ritual is good for the body and soul.

Parents do this for their children–read them a book, sing a song, say a prayer. Why do we ever stop?

Everything from brushing your teeth to the way you fluff your pillow gives cues to your body to begin to relax and let go. It’s a great way to ward off insomnia and over-thinking/worrying.

 

I always ask myself two questions at the end of each day:

What was the best part of my day?

What am I looking forward to tomorrow?

As I ask myself the first question, I almost always get a visual, and about 85% of the time the best part of my day had something to do with nature. Not about me achieving my goals–and believe me, I’m very goal driven. It’s not about a royalty check reflecting how many books I’ve sold or some other personal achievement (sometimes it is, but it has to be something I feel I’ve earned or dreamed about for a long time).

The first question allows me reflect upon the day.

It’s about the double-winged dragonfly that zipped past me while I was biking. Or the blue heron that stood still and let me get really close. Or the field of wild rabbits I came up on. No matter where you live–New York City or Kalamazoo, there’s more nature around you than you think. It’s there for a reason–it sustains you in so many ways.

 

Nature gets me outside myself. It connects me with all living things. It’s exquisite,  exotic, powerful, and surprising. Sometimes I relive these moments–the feel of my hair lifting off my shoulders as I bike, the buoyancy of the waves as I body surf–reliving those moments at the end of my day is living life twice.

Occasionally, it’s about an old friend that called, a recognition I’m particularly honored to receive, but more times than not–it’s not about me.

This one question has also changed my day. What will I have to tell myself at the end of the day if I don’t get outside and give opportunity for those “best parts of my day” to present themselves?

It’s heightened my awareness. I step out my front door expecting a miracle, or at the very least, a gift.  When that hummingbird appears, that deer looks me in the eye, I’m acutely aware–and grateful. I tuck in my memory like a pebble in my pocket knowing I’ll get to enjoy it again as I lay my head on my pillow.

The second question links me to the new day in front of me.

This one I heard from Dr. Phil.Now I’m not crazy about the direction he’s taken with his Jerry Springer-esque tv show, but I heard that he asks his sons this question each night so that they would end the day on a note of hope.

No matter our age or circumstance of life–we all need something to look forward to tomorrow.

Whether it’s meeting a friend for lunch or the next day’s walk, we need to go to sleep with the thought that tomorrow is waiting for us.

It doesn’t have to be big. It doesn’t have to cost money. It’s about creating a life of meaning.

Even our elders those we are caregiving need to look forward to the next day.

This again, causes us to create our days, make plans, and focus.

Create a morning ritual as well. 

List 5 things you’re grateful for before you get up.

Again, we’re talking simple.

Here’s today’s morning list for me:

I’m grateful for–

  • a bike ride (I go on one every morning)
  • my dog Rupert and his he sits nudged under my desk as I write
  • cherries that are in season–and the bowl that awaits me when I get up
  • my favorite pillow–gushy
  • my newly painted office that is lipstick red with white trim–and has a whole wall painted in chalkboard paint so I can literally write on the walls

Nothing earth shattering, but as my feet hit the ground each morning, I do what was suggested in the book, The Secret. Each step I take on my way to the bathroom–I say, “thank you, thank you, thank you, thank you.” Out loud. I

‘m smiling by the time I glance into the mirror.

This sure is better than beating myself up for saying something stupid that day, or mulling over a pile of bills, or rehasing a disagreement. There is a time to deal with those things, but that time isn’t the last thing at night or the first thing in the morning.

Protect this sacred time. Gather the best, look forward to tomorrow–

and fill your heart with gratitude.

 

I’m Carol O’Dell, and this is my blog, Mothering Mother and More, found at caroldodell.wordpress.com/

Carol is the author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir.

It’s a collection of stories and thoughts for families and caregivers written in real time as she cared for her mother who suffered with Alzheimer’ and Parkinson’s.

Mothering Mother is available at Amazon and can be requested at any bookstore or library.

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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/motheringmother-memoir-by-car/ – 95k

 

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Caregiving does things to you–as a caregiver, a family member.

It takes you places.

At first, you might start out caregiving heroically–feeling that you can make a difference. You can “fix” this problem–that your loved one’s condition can be bettered if you could just…get in there…find the right doctor, get on the right meds, coordinate the proper level of care…

It’s a tough day when you finally realize you can’t fix your loved one.

You can’t fix their disease.

You can do very little to make anything about this “better.”

You learn to just live, love, and hope to be granted some small level of grace.

You may feel as if you’ve lost them forever and this can cause you to grow bitter if you’re not careful. We don’t like not being in control, not getting results.

 But what if one of the goals/purpose/benefits of your loved one getting ill, facing death is what it does to you, the caregiver? What if part of this is about you?

What caregiving does to you, asks of you, unearths in you? 

I’m not trying to be Pollyanna here.

Sometimes it all feels useless. You didn’t sign up for a life lesson, and this is really shitty. Pardon my French, but I’ve been there, and I used far more “French” than that in my caregiving years! 

If someone told me that I was supposed to get something out of caregiving, there would be some days that I would have definately thrown some heavy, possibly sharp object directly at that person’s head.

But as the target talking here, I’m going to duck and say it again:

What are you supposed to get out of this experience? 

I can’t, I refuse to believe that caregiving is just this terrible, horrible thing that you have to endure because life’s just like that. Caregiving is so much more.

As much as it feels as if your loved one’s personality is gone–that you’re caring for a body, not your mom, remember they’re deep inside. When my mother started to lose her essence, I had to sort of go on auto-pilot. I had to care-give because of my commitment, my integrity (which I was groping and grasping to hold on to).

The difficulty lies in the fact of what we knew they once were–vivacious, intelligent, gifted people who made an impact on the world.

I was in a caregiver support group recently where a woman shared that her husband was a Yale Law professor, and now he can’t even dress himself. Her grief was palatable. She was holding onto who he was–what he did, what he presented to the world. She hadn’t let that part of him go yet.

Although you may only get glimpses of your loved one, hold onto the knowledge that they’re there. It becomes a treasure hunt. I began to seek out glimpses of my mother.

I started to notice smaller and smaller details: the way her hands moved, the way she’d brush her hair out of her face. That was still her. I didn’t use my hands like that–that was her own distinct way. As the bigger, more obvious ways of communicating diminished, it helped to pull in, and find my mother as if we were enjoying a game of hide and seek.

Some nugget, some kernel of their spirit is still inside.

 

Since the release of Mothering Mother, I’ve spoken to several thousand caregivers and their loved ones across the country. I’ve visited care facilities, and I’ve found that no two people are alike. No two people with Alzheimer’s react the same way. Even in their “lostness” is unique.

I knew I had to let go of who my mother was, and sadly, I knew I had turned her into a list: mother, wife, minister, cook.

I had to decide to love who my mother is: a person, a woman, the core of a spirit.  

 

I read about a couple whose son had been in a motorcycle accident years before and was brain injured. He was still alive, but he wasn’t the son they knew before the accident.

They decided to hold a memorial service or celebration service–even though he had not passed away. 

They needed to let go of the son they once had–in order to embrace their new son. This new son still needed to be loved, still needed parents, but as long as they were holding onto that old son/old image–it hurt too much.

I know that parents of children with disabilities have to mourn their pre-conceived notions of their children, of what it would mean to be a parent. They must learn to love and embrace the child in front of them–their medical/mental challenges, the way they may look, talk, or act different. They must witness and embrace the new beauty, the new relationship before them.

This journey, this revelation changes them–and in the end, oftentimes makes them a better person capable of more love and peace than could have ever imagined.

You’re not really letting go of your loved one–of who they were, who they are–you’re enfolding that into you–you’re the keeper of time, of memory, of all you hold dear.

 

 

I love time theories and quantum mechanics, (I wrote several papers on it in college) and I read a great article by a physicist that explained that time and events(or place–for us to conceive time, we have to intersect it with place) can be seen as a wheel with each moment being a spoke–and our memory adds meaning to that event–so some moments or events “spike out.”

Each moment, each event stands apart and will always exist.

For me, my mother, myself, and all the moments I hold dear exist forever.

 My favorite author, Madeleine L’Engle says,

“The great thing about growing older is that we get to keep

every age we’ve ever been.”

 Carol D. O’Dell

Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

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

 

 

 

 

 

 

 

 

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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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It’s the simple things I miss about my mother.

Just two women shopping. Someone to be with. Someone who knows me better than I wanted her to.

Happy Mother’s Day, mom.

I’ll always miss you, and I’ll always carry you in my heart.

I hope you enjoy this excerpt from my book, Mothering Mother:

When I Miss Her

I miss Mother when I go to the grocery store. Since I’m no longer eligible to park in the parking spaces for the handicapped, I must walk by the light blue and white lines as I head across the parking lot that no longer takes me ten minutes to cross. I see Mother grip the handle of the grocery cart and remember the freedom this rolling walker gave her.

 

I still see her curved spine dipping, her stockings slowly sagging from above her knees and eventually bunching around her ankles. I see her silhouette, complete with a bright blue nylon cap and its hundreds of petal-shaped pieces that made her head look like a massive flower. Some people loved her hat, others made fun of it, snickered about it behind our backs, but there were a few who found her and her blue hat endearing.

 

I miss her as I pass by the bananas. She said they gave her potassium and ate one a day. I had to buy seven a week—not six, not eight—though I often cheated, hoping to tide her over a day or two. Sometimes I get the urge to eat one in case I, too, am low on potassium. Any fruit she ate had to be peeled, cored and washed until it practically no longer resembled anything that ever lived. Apples were pale and tinged brown, grapes looked naked and embarrassed without their skins.

 

I miss her when I pass the Little Debbie display. Her face would light up at the sound of me opening the cellophane wrapper of an oatmeal pie.

 

I miss not picking up her half gallon of milk, her apple juice and her frozen dinners. I knew which ones she liked—the meatloaf, beef tips and flounder, nothing with pasta, very little chicken. Ice-cream bars remind me of her dying, not living. I can’t bring myself to eat one, or even buy them anymore.

 

I miss her small talk with the cashier, the slightly condescending way she treated the help, and the times she surprised me with genuine kindness and humor. As time went on, she took forever to get out her wallet, and two forevers to pull out her credit cards. She could no longer differentiate a Visa card from a debit card, from a license. She’d just let them pick, holding the plastic squares out innocently like a hand of playing cards. I always tried to catch her before she let strangers rifle through her entire wallet and checkbook. By then, some of her prejudices had diminished and she chitchatted with anyone who caught her eye, regardless of race, which was a pleasant change, though unreliable. She insisted the baggers carry our groceries to the car, no matter how few we had, and she saw no need to tip them. I’d slip them a dollar or two after buckling her in. Tipping never was her thing.

 

Now I just go to the store like anyone else. No one to slow me down, no one to check on, no bananas to count, no Little Debbies to hide so she won’t eat them all in two days.

 

It’s just ordinary, and what once seemed a bother, is now missed.

 

~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

www.kunati.com, Publishers

 

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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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I had this huge personal revelation that was a part of a deep belief system–and I realized that I did this very “thing” during caregiving–and if I did this, other caregivers might be doing it too.

This is the “thing” I’m talking about.

Paying for what you’ve done.

Example: You know how when you’re a kid and you’re supposed to get to go do something fun–like say, to go a birthday party–your parents tell you that to be able to go you have to clean your room, cut the grass, and when you get back you also have to do all your homework for the week?

In other words, you have to pay for having the good time.

And of course, you really had to PAY if you were ever bad–came home late, got in trouble (they called it punishment)

Well, I realized that I was (and am) still doing this to myself.

If I went out of town or went out to dinner with girlfriends, I’ve always made sure the house was clean, there was extra dogfood–and if I was gone a few days, I’d make sure there was a roast in the crock pot, a lasagna in the freezer…in other words, PAYMENT.

I couldn’t ever just believe I deserved something good.

Not just a gift–a gift is given sometimes to the UNdeserving.

I mean, believing deep down that I deserved something good–with no need to pay for it in any way.

Remember the old Puritan Ethic?

Work hard and God will reward you.

 I twisted it even further…Work hard or God won’t reward you.

Even after you’ve been rewarded, STILL work hard because you probably haven’t worked hard enough! In other words…work, work, work!

Did I hardly ever give myself a break (in part) as a caregiver? Not too much because I believed I had to PAY for past transgressions. I told myself I couldn’t find good help (in part, true), or that mother wouldn’t adjust (also true) or…the list went on. I know now that I thought I had to pay for my own good health, or pay if I were to even think about having a good time. 

Sick, I know. 

I’m hoping someone out there will step up and tell me

I’m not the only one who does this.

Recently, as most of you know, I published a book, Mothering Mother.I’ve spent months and months at caregiving talks, book signings, TV and radio spots. I’ve gotten lots of attention–something adults don’t like to talk about. I’ve received “fan” mail from wonderful caregivers and readers, I’ve received roses at special events…been on CNN, and it’s been hard, hard work, but it’s also been a whole lotta fun!

I’m suited for this. I love the juxtaposition of thought and quiet and contemplation and creating something on the page–and then I LOVE dressing up, “performing” mom and me in my little one act plays where I do both of us–I love making people laugh and cry. I love signing books! I could do it all day! I love knowing that I’ve touched someone’s lives. I even love the drives, the bookstores, the blogs.

Yikes. Does part of me believe that because I love it so, so much that I should have to “pay” for all this fun?

Now, a little bit of the hullabaloo has worn off and I realize that I’ve lapsed into this “I need to pay my family back for all that.” I’ve taken time away, stayed overnight, spent copious hours online and in bookstores. They’ve been patient and proud, but I’m sure it gets old.

It’s not that they asked or demanded anything.

But I see that I’ve been in drudgery mode lately–working hard with no joy. Taking jobs that are clearly not me. I thought I had to. I had so much to pay back.

I once had this great therapist who said the magic words that

changed my life…

“It’s a new day!”

So, I ask you–is there some part of you that took on the role of primary caregiver, or hardly ever lets yourself take a break because you believe you have to pay something back? Am I attracting this because I believe I need to pay? Do I feel guilty that my loved one is sick/dying?

Do I need to pay?

For being that black sheep?

For that adventure in college?

For screwing up my finances?

For taking off and letting my siblings deal with mom and dad for a while?

Because I enjoy good health and financial security?

Let it go. (I says to me-self)

Look at the sky and say, “Thanks!” That’s it. 

A heart of gratitude is all that’s asked. That’s The Secret.

Make a list of what you deserve:

I deserve to have daily joy.

I deserve to view myself with tenderness and compassion.

I deserve to be appreciated.

I deserve regular breaks.

I deserve help on a consistent basis.

I deserve a real vacation every year.

I deserve to caregive out choice and heart of love.

I deserve for my siblings/family to contribute.

I deserve for my thoughts and opinons to be respected.

As for caregiving, yeah, you may still want to and need to give care–but this could be the revelation that changes everything–and open up new opportunities.

It’s a new day.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

Kunati Publishing

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