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Tuesday
01Jul

End of Life Decisions: Are You Afraid You'll Have to "Pull the Plug?"

Are you dealing with end-of-life decisions for a loved one? 

Are you the family member, caregiver who will be the one to "pull the plug?"

It's a shocking analogy, but that's what people say--and that's how they feel--as they're the ones who will unhook or unplug the various machines that are sustaining life.

It's scary and no one wants to have to make these kinds of decisions--not for themselves or for anyone else.

Yet families are the ones that most often decide.

This is a part of caregiving we didn’t think about–or think all the way through.

No one wants to feel responsible for deciding if another person lives–or doesn’t live.

But you may find yourself in this very situation.

What do you do? How do you make such a monumental decision?

What if you decide wrong?

What if other family members disagree with you?

How will you live with yourself?

These are common questions that can absolutely paralyze you.

How do you decide?

First, if you’re not quite to this point, then do everything you can to get your loved one to sign a living will. Force it (Lovingly coerce) if you have to, if you feel you’re coming to the end of your window of opportunity. You’ll be glad you did. I highly recommend The Five Wishes living will.

If you cannot get them to commit to something on paper, then listen, take notes, and then decide on their behalf. They are essentially asking YOU to decide by them NOT deciding.

Know that you are not killing your loved one!

I cannot stress this enough. One of the greatest gift that working with hospice can give you is to reassure you that allowing someone to die is not the same thing as killing them.

Doctors will in many cases make you feel guilty. Their “oath to save” can get in the way of their humanity. I’m not trying to bash doctors, but it’s as if they don’t use their higher intelligence, intuition, and good horse sense to realize that we all will die–no doctor has ever saved a person from dying.

I know how scared you feel. How angry you are to be put in this situation. 

I know what it’s like to feel like you’re carrying a cement block of guilt in your chest wherever you go.

My mother, who had Parkinson’s and Alzheimer’s was coming to the end of her life. She was 91, almost 92 and she had been living with me for the last year and a half of her life (and mine). It was tough.

My mother went from being unbelievably vivacious, cantankerous and demanding to being “lost” in Alzheimer’s, out of control, didn’t know me, and my caregiving had come down to sad to say, I felt as if I were caring for a wild animal at times.

I don’t meant that offensively–please don’t take it that way. I just felt as if I could not reach her. She was not there. I was performing a set of duties or functions, and that the mother I knew laid safely tucked away in my heart and my memories–but she was not this woman in front of me with a void in her eyes and an almost blankness to her soul.

She had signed a living will and had specified that she didn’t want a ventilator, but she did want pain medicine. The problem was, that was about the extent of it. She wasn’t in pain, she didn’t need a ventilator at the time, but the question of a feeding tube wasn’t addressed.

What was I to do?

I was beyond the end of my hope.

I had to decide. I was an only child. I was not about to pull in out of town relatives (none of whom had been involved with her care in the last 18 months) to then put their two cents in.

It was up to me. Hospice helped alleviate some of the guilt. They gave me–and my mother permission to let go.

That’s the day I became a woman. An adult.

Not the day I got married, not the days birthed my children–it was the day I had to decide how much longer my mother would live.

I knew rationally I was not kiling her. Parkinson’s, Alzheimer’s and heart disease had done that. But I knew that I could shorten her time. That was in my control, whether I liked it or not.

I thought long and hard about the feeding tube. What it would mean for her, for me, for my family. I knew the toll my caregiving had already exacted on all of us. But this was not a decision I felt I could necessarily make based on the good of the many…I had to decide about my mother’s life.

Whew. Tough. I did not want this. I did not want this decision. This responsibility. I wanted to run. Literally run, but I couldn’t leave my husband with this–as unfair as it was for me, it was even moreso for him.

It came down to this:

Even with a feeding tube, I couldn’t reverse the effects of these diseases. She would still have Parkinson’s. Still be lost in Alzheimer’s. Still had already had three heart attacks.

It was time.

Did having faith help?

Yes, it did, but I can also say that just about everyone fears and dreads death–we’re meant to love this world, love our bodies, our life and our families. Letting go is hard–no matter what’s to come.

Ironically, deciding wasn’t to be the most difficult part of my journey. It would be living with my decision. Sitting beside her as my choice played out before me.

I stop here and will blog tomorrow.

If you’re at the end of life crossroad, then take a moment and really feel this. Feel your fear, your concerns, and know that while this is very, very hard--you're not alone. You can come to place of peace. 

 

~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

Friday
27Jun

Caregivers: Are You Dealing with Out of Town Hero Syndrome?

Out of Town Hero Syndrome is when out of town relatives swoop in town and begin to tell YOU how to care give.

They come once or twice a year (thank goodness, not more) and rearrange everything from your medicine cabinet to your car's glove compartment while proceeding to tell you (in subtle and not so subtle back stabs) how you could, should give better care--to mom or dad.

You're there 365 days a year. They're there for 10.

You're nice at first. Keep peace, you tell yourself...but by day three you're about to blow a gasket.

If your loved one has to go to the doctor or is in the hospital or in hospice and it's near the end--then it's ten times worse. They run the show. The doctors and nurses speak to them. Especially if they're an older sibling--then you're really in for it.

By the time they leave you can barely find your own socks.

You're angry, frustrated--and worse--your confidence has been undermined.

You start to doubt yourself.

You just want to quit. Fine then--take mom--take dad.

"Do it all yourself and I'll come back this time next year and boss YOU around for ten days."

That's what you'd like to say.

On top of that--your mom or dad like them MORE.

They get the smiles, holding hands, pleasantries you haven't seen in months--they sit at the table and gab like you do this every night and you feel like such a hypocrite. They're all in the livingroom talking after dinner--and where are you?

Loading the dishwasher.

I didn't have siblings, but I experienced this with several relatives who came into see mom--twice--once each in more than two years.

I went off for the day to give them time alone and when I had come home this person (no names) had reorganized my pantry and all my kitchen cabinets. She took me in there by the hand and showed me everything she had done and explained why her system should work better. I had to stand there like a ten year old in trouble and agree, yes, her system was better and I was a piece of ...well, you know.

I was so stressed, angry and nervous by the time she left I thought I'd collapse in a heap on the floor when she pulled out of the driveway. On top of that, I knew my mother had complained her head off about me--not taking her to church, drinking wine (my mother was a fundamentalist minister), watching movies with curse words, letting my daughters wear those short shorts...you name it.

The next time this happened was with a good friend of mine. My mother ate her up like she was homemade vanilla ice cream. They chatted and laughed--my friend washed my mother's hair and did her nails.

Made me sick.

I had asked my friend to come down to help me and this felt like betrayal. I know she didn't mean to but that's how it felt.

I felt judged--and poorly lacking.

Mother hadn't said a kind word to me in weeks and now she was a geyser of compliments.

Then I heard them whispering. Mother was crying (fake crying) and saying she wished I were sweeter, kinder, more patient, that she didn't know what she had done to make me act so cold to her.

My friend came out and a very concerned voice told me I needed to make up with my mother and forgive her.

I thought my head would split open. I felt betrayed by everyone.

Mother was up to her old manipulation tricks--and I knew this full well having experienced it countless time in forty years.

I told my friend she really had no idea what was really going on here and that I needed her to respect and trust me.

Later, she apologized. Her father got Alzheimer's and she dealt with her own family issues. She really didn't have anything to apologize for. I knew how mother had played her, but I understood.

I share all this with you to say this about relatives in town or out who make you question yourself:

Know deep inside you are a good person--a good daughter, son, spouse--and let no one shake you on this

Stop worrying about what other people think about you and your caregiving.

It's none of your business what others think of you. (How freeing is that?!?)

You're care giving because you believe it's the right thing to do. You have to give care the way you can--the way you can be consistent, they way that's right for you and your loved one.

Stand firm on this and don't listen to other's opinions. 

Unless they have done this for as long as you have, they can't possibly comprehend the level of sacrifice, committment, love, tenacity, and exhaustion you've endured.

Caregiving is a marathon not a sprint.

You may feel yourself pulling away from people.

That's part of caregiving.

You'll naturally pull in--for good and not so good reasons.

You'll get tired of explaining yourself.

You'll get tired of trying to be nice to people.

You'll get tired of feeling that everything you do is up for scrutiny.

You'll get strong and stop needing others to validate you or what you're doing.

That's the bottom line.

Your relatives, friends and neighbors will intimidate you just so far and then you'll find your backbone and stand your ground.

This is one of the best lessons of caregiving that can change you and how you deal with others for the rest of your life.

The anger and hurt will dissapte. In time.

These situations and people that threaten you will give you a gift--you'll find your own confidence.

You'll be in your own quiet center.

You will become strong, independent, and do what you need to do and you won't give a rip what others think.

~Carol D. O'Dell

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

available on Amazon

www.mothering-mother.com

Kunati Publishing, www.kunati.com/caroldodell

Family Advisor on www.Caring.com

Syndicated blog on www.OpentoHope.com

 

 

 

Tuesday
17Jun

Depression and Suicide: A Dangerous Combo for Our Elders

Elder suicide rates are up in the United States and it usually start with depression–also a major factor in the elderly. Contributing factors are life debilitating illnesses, loss of spouse, career, a terminal diagnosis, change in living conditions and medications that exacerbate the situation.

It’s not the family legacy most of us aspire to.

Depression affects approximately 19 million Americans per year, (National Institutes of Mental Health, 2000).

Depression is often not recognized in the elderly because the symptoms can be attributed to ”normal aging.” How sad, that we have come to believe that melancholy, lethargy and apathy are connected to older age.

Nearly 6% of the people in the United States over the age of 65 have a diagnosable form of depression, and while adults age 65 make up only 13 percent of the U.S. population, they account for 20 percent of all suicide deaths.

We should be more alarmed.

Who is most at risk? Our dads. Our husbands. Our brothers.

Male Caucasian are the over the age of 85 are the the highest suicide rate in the nation (National Institute of Mental Health, 2000). But don’t think mom is out of danger. While men tend to be more violent in their attempts, women tend to lead toward pills.

They’re also not talking. Elders are not like teenagers who threaten, make dramatic attempts in order to stopped (subconsciously). Many elders are not comfortable talking about mental illness and so they suffer intense feelings of loss, hopelessness and despair alone–never realizing there is help. They don’t have to feel this way.

Factors that Lead to Suicide:

  • Recent loss of a spouse, loved one, or pet
  • Debilitating or life-threatening illness
  • Pain, especially if pain is severe, chronic, and/or inescapable
  • Loss of independence and/or mobility
  • Inability to live alone
  • Loss of employment or productive activities
  • Financial difficulties
  • Depression
  • Alcohol abuse and/or dependence
  • Loss of role or stature in family and community
  • Feelings of hopelessness and helplessness
  • Physical, social, and emotional isolation
What are the Warning Signs:
  • Statements about death and suicide
  • Reading material about death and suicide
  • Statements of hopelessness or helplessness (e.g., “I don’t know if I can go on.”)
  • Disruption of sleep patterns
  • Increased alcohol or prescription drug use
  • Failure to take care of self or follow medical orders
  • Stockpiling medications
  • Sudden interest in firearms
  • Social withdrawal or elaborate good-byes
  • Rush to complete or revise a will
  • Overt suicide threats
How to Help:
  • Be aware of your elder’s emotional state
  • Be sensitive in times of a new loss, such as the loss of a beloved pet or dear friend
  • Consider filtering the news–more negativity about the state of the world, wars, and the economy might not be the best thing for any of us to focus on
  • Make a list of who your elder or spouse is most likely to talk to–a priest or pastor, a close friend, a nurse or doctor they’re closest to–let this person know of your concerns and ask them to listen closely for tell-tale signs.
  • If you’re truly concerned, then talk openly about your concerns of depression and the risk of suicide. Don’t think you’ll cause suicide by talking about it.
  • Let them know that their thoughts and feelings are normal, that despair is common, and that there are people who care who can help, that part of their feelings are triggered by life events, but also diseases and medication play into this.
  • Let them know you’re not judging them. Life is hard. But this is not an option. You are there to help. There are medications, people to talk to, that their thoughts and feelings can change. Life is full of changes and this situation doesn’t have to stay the same.

I’m Afraid to Broach the Subject:

  • They will get angry with me or deny it. So what if they do? This is too important and the risk is worth it. You don’t want all your love, time and caregiving to end this way. You don’t want this blow to hit you and your loved ones.
  • I might put the suicidal thoughts into their heads. If your loved one is having suicidal thoughts, then they’ve probably been having them for weeks, months, or even years. For many people, depression is a lifelong battle and this may not be the first time they’ve found themselves in this debilitating emotional state. It is extremely unlikely that a caring question from another would convince a person, whether truly depressed or not, to commit suicide.
  • I won’t know what to say. I know, this is tough. Bungle your way through it. Don’t think you’ll handle this perfect. You have no experience (I hope). Your love and emotions will come through no matter what words you are able to get out. It’s not your words that will convince them to get help–it’s your love and concern.
  • Suicide greatly affects your life and other family members. Suicide ripples into the fabric of humanity. It’s a devastating blow for those nearby, so do all you can to prevent this tragedy.
  • End of life and palliative care (to reduce pain during the last weeks and days of dying) is a different subject. This is a highly controversial area and one that should be handled privately with your “council of elders” (family, chaplain other faith leader, hospice, etc.).

How to Help Someone Who is Deeply Depressed and May Be Suicidal:

  • Be sensitive, honest and straightforward. Come right out and ask: “Dad, I’ve been worried about you lately. You seem pretty down. I’ve noticed that you aren’t seeing your friends any more, and you’ve talked about not wanting to go on. Would you really want to die?”)
  • Listen. After you’ve opened the discussion, then let them talk. Listen–listen all day long, ask questions that will encourage them to continue to talk and open up. Caregiving is more about listening than it is a to-do list.
  • Seek help yourself–dealing with someone who is suicidal kicks up all kinds of emotions, particularly if they’re your spouse or parent or other close family member. Talk to your pastor or doctor or call a suicide hot line and let them know what you’re dealing with. Alzheimer’s Association and other organizations also have great hotlines with people who care, who know what it’s like to deal with depression and stress on top of a horrific disease. Reach out.

What If I Find Out They Are Contemplating Suicide:

  • Do your homework. Make sure you know about the resources available in your area:
  • Check the front of your telephone directory–or the Internet,as well as your local community mental health unit. They often have suicide hotlines and emergency inpatient crisis stabilization units available if the danger of suicide is high.
  • Let your elder/spouse’s doctor know. Certain diseases and medications can aggravate the situation.
  • A psychologist, psychiatrist or other therapist is another good option but c heck with your insurance as to what is covered.

Practical Things To Do Immediately:

  • Get the guns out of the house
  • Monitor all medications, including your own
  • Stay close by. If you’re in a particularly dangerous time, monitor them 24/7 by granny cam/baby monitors
  • Take threats serious and cause a fuss–make it unappealing to try again
  • Get help immediately if there is an attempt. Don’t worry about embarrassment–this is bigger than that.

Resources:

www.metanoia.org/suicide/

www.suicidepreventionlifeline.org/

www.save.org/

suicidehotlines.com/

Your goal is to prevent a tragedy. Be aware. Be sensitive. Speaks–this is worth fighting for.

YOU need to deal with this in your own life and heart. YOU can’t control what someone else does, so stay with you. Love you. Care for you.

~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

Saturday
14Jun

Father's Day: Quotes and Famous Fathers Throughout History

It doesn’t matter who my father was; it matters who I remember he was.” — Anne Sexton

It’s my dad who taught me about caregiving–a fancy term for just being a family. I can remember that Sunday afternoons were for visiting family–we visited his sister, brothers, nieces–and if anyone were in the hospital, Daddy went every day. Every day. Faithful and tireless. As big and tough as he was, he was a teddy when it came to family.

This weekend, if you have your dad–call him, hug him, make him smile.

Even the most tangled relationships have something to be thankful for.

Find a way to celebrate. I’m all for celebrations–life has a enough tragedies and I see it all as a giant algebra problem–I need to balance the sides–move something over and prove to the universe that it all adds up.

I hope you enjoy the things I’ve gathered about Father’s Day.

Feel free to email me back and let’s add to the list!

Great Dads Throughout History:

Marcus Aurileus, was the adoptive son of Annius Verus and is known as the “Philosopher-King.” The youth’s education embraced both rhetoric and philosophy; his manner was serious, his intellectual pursuits deep and devoted, so that the emperor Hadrian took an interest in him and called him “Verissimus,” “Most truthful.” He is considered one of Rome’s and history’s most thoughtful leaders.

Jose Marti is the father of freedom in Cuba.

Muhammed Ali is one of the greatest boxers in history and a loving father. Also, George Foreman who has a new book out about fathers where his greatest advice is “spend time” with your children–that’s your legacy.

J.R.R. Tolkien was a wonderful father who wrote many letters to his sons.

Albert Einstein was the father of modern science.

George Washington was the childless father of our country.

Nelson Mandela is the father of freedom in South Africa.

A.A. Milne based the character Christopher Robin in his Winnie-the-Pooh stories on his own son.

Jim Henson’smuppets and television show, Sesame Street, thrilled millions of children, including his own, who now carry on his tradition.

Martin Luther King, Jr. fathered American Civil Rights and believed that love, not violence, was the most powerful weapon.

Michael Jordan is a champion and a hero because he plays basketball with all his heart for his team, his family and his father.

Great Father Quotes:

“It no longer bothers me that I may be constantly searching for father figures; by this time, I have found several and dearly enjoyed knowing them all.” — Alice Walker

My father used to play with my brother and me in the yard.  Mother would come out and say, “You’re tearing up the grass.”  “We’re not raising grass,” Dad would reply.  “We’re raising boys.”  ~Harmon KillebrewHe didn’t tell me how to live; he lived, and let me watch him do it.  ~Clarence Budington Kelland

A truly rich man is one whose children run into his arms when his hands are empty.  ~Author Unknown

Father! - to God himself we cannot give a holier name.  ~William Wordsworth

Love and fear.  Everything the father of a family says must inspire one or the other.  ~Joseph Joubert

One father is more than a hundred Schoolmasters.  ~George Herbert, Outlandish Proverbs, 1640

Blessed indeed is the man who hears many gentle voices call him father!  ~Lydia M. Child, Philothea: A Romance, 1836

Henry James once defined life as that predicament which precedes death, and certainly nobody owes you a debt of honor or gratitude for getting him into that predicament.  But a child does owe his father a debt, if Dad, having gotten him into this peck of trouble, takes off his coat and buckles down to the job of showing his son how best to crash through it.  ~Clarence Budington Kelland

A father is always making his baby into a little woman.  And when she is a woman he turns her back again.  ~Enid Bagnold

Sometimes the poorest man leaves his children the richest inheritance.  ~Ruth E. Renkel

A father carries pictures where his money used to be.  ~Author Unknown

The father who would taste the essence of his fatherhood must turn back from the plane of his experience, take with him the fruits of his journey and begin again beside his child, marching step by step over the same old road.  ~Angelo Patri

My father, when he went, made my childhood a gift of a half a century.  ~Antonio Porchia, Voces, 1943, translated from Spanish by W.S. Merwin

It is much easier to become a father than to be one.  ~Kent Nerburn, Letters to My Son: Reflections on Becoming a Man, 1994

The words that a father speaks to his children in the privacy of home are not heard by the world, but, as in whispering-galleries, they are clearly heard at the end and by posterity.  ~Jean Paul Richter

Any man can be a father.  It takes someone special to be a dad.  ~Author Unknown

The greatest gift I ever had
Came from God; I call him Dad!
~Author Unknown

I love my father as the stars - he’s a bright shining example and a happy twinkling in my heart.  ~Adabella Radici

Two little girls, on their way home from Sunday school, were solemnly discussing the lesson.  “Do you believe there is a devil?” asked one.  “No,” said the other promptly.  “It’s like Santa Claus:  it’s your father.”  ~Ladies’ Home Journal, quoted in 2,715 One-Line Quotations for Speakers, Writers & Raconteurs by Edward F. Murphy

Dad, your guiding hand on my shoulder will remain with me forever.  ~Author Unknown

Sherman made the terrible discovery that men make about their fathers sooner or later… that the man before him was not an aging father but a boy, a boy much like himself, a boy who grew up and had a child of his own and, as best he could, out of a sense of duty and, perhaps love, adopted a role called Being a Father so that his child would have something mythical and infinitely important: a Protector, who would keep a lid on all the chaotic and catastrophic possibilities of life.  ~Tom Wolfe, The Bonfire of the Vanities

Old as she was, she still missed her daddy sometimes.  ~Gloria Naylor

“None of you can ever be proud enough of being the child of SUCH a Father who has not his equal in this world-so great, so good, so faultless. Try, all of you, to follow in his footsteps and don’t be discouraged, for to be really in everything like him none of you, I am sure, will ever be. Try, therefore, to be like him in some points, and you will have acquired a great deal.” — Victoria, Queen of England

“That is the thankless position of the father in the family-the provider for all, and the enemy of all.” — J. August Strindberg

“It is a wise father that knows his own child.” — William Shakespeare

“One father is more than a hundred schoolmasters.” — English Proverb

“To be a successful father . . . there’s one absolute rule: when you have a kid, don’t look at it for the first two years.” — Ernest Hemingway

“A man knows when he is growing old because he begins to look like his father.” — Gabriel García Márquez

“I cannot think of any need in childhood as strong as the need for a father’s protection.” — Sigmund Freud

“I watched a small man with thick calluses on both hands work fifteen and sixteen hours a day. I saw him once literally bleed from the bottoms of his feet, a man who came here uneducated, alone, unable to speak the language, who taught me all I needed to know about faith and hard work by the simple eloquence of his example.” — Mario Cuomo

“Be kind to thy father, for when thou wert young,
Who loved thee so fondly as he?
He caught the first accents that fell from thy tongue,
And joined in thy innocent glee.”
Margaret Courtney

“If the new American father feels bewildered and even defeated, let him take comfort from the fact that whatever he does in any fathering situation has a fifty percent chance of being right.” — Bill Cosby

“Blessed indeed is the man who hears many gentle voices call him father!” — Lydia M. Child

“When I was a boy of fourteen, my father was so ignorant I could hardly stand to have the old man around. But when I got to be twenty-one, I was astonished by how much he’d learned in seven years.” –

Mark Twain

Great Father’s Day Links:

http://wilstar.com/holidays/fathers.htm

http://www.history.com/minisite.do?

Happy Daddy’s Day~

~Carol D. O’Dell

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

available on Amazon Kunati Publishers, www.kunati.com

www.motheirng-mother.com

Family Advisor on www.Caring.com

Syndicated blog at www.OpentoHOpe.com

Tuesday
10Jun

What It Means to Have a Daddy--For Father's Day

I have a father and a daddy. My birth father gave me life, and my adoptive daddy gave me life. Both men are important to me, and I've stopped trying to compare. But only one truly has my heart.

My Daddy died at the average age men die in the US (78 years old), from the most common disease men die from–heart disease. Yet, Daddy was anything but typical. He was a big teddy bear of a guy who made my world right again.

I was adopted at the age of four years old–and my early years weren’t easy. My birth mother suffered from schizophrenia (severely and eventually permanently hospitalized), and addiction to alcohol and gambling choked all the life out of my birth father. My sister and I lived with my father’s co-dependent/enabler grandmother and was abused by a boarder who lived in her house. Not a great beginning.

I don’t share this with you to make you uncomfortable or to get sympathy points because my life didn’t stay that way. I was adopted and received layer after layer of personal healing and insights that allow me to incorporate this experience into my being.

Healing took a long, long time.

My adoptive Daddy was a big part of that. He was 54 and Mama was 50 when they adopted me. That’s taking a big chance–but it also shows what a void they had to fill.

He died when I was 23 years old. Too young for him to die–and too young for me. But he isn’t really gone.

He has become a part of me now–his songs, his stories, his gestures, his wisdom–I carry him every day.

I can see him just as clear as the first time I ever saw him. I see him just like I did when I was six and playing baseball in the backyard–he was sitting my lawn chair pitcher. I broke his garage window. Don’t know that he got too upset.

I remember the summer we had contest and ate 38 watermelons. He told me vines were going to shoot out my ears. I hoped it would.

I remember when I was 12 and just starting to like boys–Daddy drove me to the skating rink each Saturday night and picked me up at 11:00. I know he really didn’t want to get dressed and traipse out that late, but he did. I remember when he asked me if that boy kissed me. I lied and said, “No, Daddy.” He knew. I knew. But I couldn’t say the words–not to my dad.

I remember when I brought home countless boyfriends and the disgusting look he’d hide behind his newspaper. No one was ever good enough for his little sweety-pie.

Eventually, one was, and I married him. He loves my dad as much as I do. That’s why we’re still married–he reminds me of that honorable man who changed my life and he’s the daddy to our three girls. His face lights up when his daughters just walk into the room. His face lights up when I walk into the room–that’s why I keep him.

I never got to be my dad’s caregiver the way I did with my mom. But I promised him we would take care of her. That promise got me through some rough times.

I hope you enjoy a short excerpt from my forthcoming book, SAID CHILD.

It’s about our night time ritual and coming home after church. (Being raised in church means I have many, many memories of life on the pew). Perhaps this excerpt will spark one of your own favorite memories. The greatest thing we can do for our dads on Father’s Day is simply to remember.

Enjoy!

Excerpt from SAID CHILD:

Daddy slid next to us after his usher and elder duties of collecting and counting the money were complete. We’d all squeeze into the pew making room and he’d have to pull on his coat a few times to get comfortable. He’d reach in his shirt pocket and in one continuous smooth move, a gold package of Butter Rum Life Savers appeared and the fleshy underbelly of my tongue salivated. I got one, he got one and he’d wink. Mama preferred peppermint. Peppermint reminded me of the nausea of backseat card rides.

I’d roll the butter rum disk around in my mouth and hold it vertical between my teeth, my tongue reading the raised letters as if in Braille. I’d lay my head against Daddy’s arm, recognizing the texture of his different suits, and then he’d put his arm around me and poke his finger in my ear. I brush it away and he’d smile without looking at me. I snuggled up waiting for my butter rum Life Saver to dissolve so I could get another one. As the preacher’s words droned on and on, I knew we’d never make it home in time to see the Sunday night Disney movie. We never did. Missing all my favorite TV shows was the worst part to me. I’d have to run a fever or throw-up to get to stay home.

Daddy covered my legs with his jacket and patted me until the sounds and lights muffled, dimming into soft shades of gold as I watched my eyelashes fold again and again, the world now fuzzy and black. I barely remembered most of the car ride home on Sunday nights and Daddy would place me between the cool sheets long after I was too big to be carried, my lanky legs scraping the bed and the quilt slid in place.

Daddy half-whispered, half-growled, “My baby done gone to sleep, Lord bless my little sweety-pie.”

He’d sing me to sleep and I’d always ask for Mr. Moon.

Oh Mr. Moon, Moon, bright and shinin’ moon,

Oh won’t you please shine down on me.

For my life’s in danger and I’m scared to run,

There’s a man behind me with me with a big shot gun,

Oh Mr. Moon, Moon, bright and shinin’ moon, oh won’t you please shine down on me. Boom, boom, boom.

***

The power of a great dad changes a child’s life. And it keeps changing it. Even after our dads are no longer walking on this earth. Whispered wisdom, needed advice, family traditions and that sense of security never goes away.

~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

Sunday
08Jun

Heal Your Relationships in Two Easy Steps

Whether you’re in a committed relationship, married, have children, adult children, siblings, aging parents, and even friends--you'll eventually hit a  road block in your relationship.

Yet most people don’t speak up. They get hurt or mad and they don’t say anything–not to the person who they’re mad or hurt at–maybe they complain to someone else, or just stuff it.

The the relationship begins to wane. It feels like work.

You grow apart and you don’t even know why.

There’s no way to stay in a long-term relationship and not have issues.

Hurts, frustrations, “you weren’t there for me,” “I can’t believe you said that, betrayals and disappointments are all a part of being human.

We tend to fight with our spouses/significant others the most.

But we’re not good at it.

If you do fight, you use dirty tactics.

Accusations, “you always,” “you never,” you did this, you didn’t do that, and before long you’ve got a tangled history together and whatever issues you had in the beginning–seeds of doubt, hurt, mistrust–they’re all there playing over and over in each new scenario. 

This can cause deep and lifelong issues.

Divorces are so common that they’re barely a blip in a conversation to say a friend got a divorce. No one really asks or wants to know why–and yet those who go through it know that it’s devastating on the heart, head, pocketbook, and most importantly, how you perceive yourself.

How do you stop this cycle?

Two easy steps.

Before I share with you what they are, let me assure you I’m learning how to do this myself.

I have grown daughters and I really don’t want them to hate their mom. I don’t want them to complain about me for years–to everybody else but to me–and then for us to wonder in my old age what went wrong. I don’t want their emotional pockets filled with boulders of hurt, disappointment and frustration.

So, I took a big deep gulp and called one of my daughters today.

I apologized for an issue I’d heard was bothering her. I took accountability.

Then, I asked her that in the future she tell me when she’s hurt or frustrated with me.

I told her that I had blamed my own mother for emotional “crap: for years. I had griped and whined and didn’t let go over things that really didn’t matter in the big scheme of things. I should have let her off the hook and I didn’t. Eventually yes, we came to a place of peace but I carried around those stones for far too long.

I asked my daughter to come to me. I gave her permission to approach me when I’m irritating.

I told her that I want to become a better person–a better mother–and how can I do that if she doesn’t let me know what’s hurtful or frustrating? I told her that I dearly loved her and I wanted a healthy relationship with her.

It took her off guard.

Most people I know don’t have this conversation often enough–if at all.

I learned it primarily from life–from living long enough to have a few regrets. I don’t want regrets, hurts, and disappointments to plague my life and mind. I want to lighter, free-er and more joyful–and I can’t get there without letting go of a few things along the way.

I was crying by the time I got through. It was vulnerable and scary–but I really, really want to have a good relationship on my daughters based on respect, love, and tenderness toward one another. I also need to be thier role model as a woman, wife, mother, and friend.

IMPROVE YOUR RELATIONSHIP IN TWO EASY STEPS:

1.     I ask you, give you permission to tell me when I”m being difficult, frustrating, or I’ve hurt or disappointed you.

2.     The easiest way I know to do this is to start the conversation by….”It really hurt when you _________.” I felt so _______________ when you did that. Next time please _______________.

**********************

It sounds so simple, but it’s so scary!

I also told her that if she didn’t come out and say something by the end of 90 days I was going to ask her because I’m sure that I can irritate anybody by the end of 90 days.

Author and speaker Jack Canfield wrote about doing this in his book, The Success Principles. I would eat that book, digest it and live by it if I could. It’s such a Bible of personal integrity, purpose, and meaning that’s rare, particularly in the media world.

Jack said that he asks his wife at the end of each week (as well as his co-workers–and he owns a MAJOR company) on a scale of 1-10, how was he this week–as a husband? Boss?

After that he asks, “How can I make it a 10?”

That takes guts. I’m impressed.

We’re so afraid of being criticized that we don’t realize that’s how we grow and change.

Whether you’re a caregiver, an adult child, an elder parent, a spouse or sibling, I encourage you to take this little two-step script, print it off if you have to, and have this very important conversation. It’s vital when you’re dealing with end of life issues, when you return to care for your family and all your tangled history is in your face and your life again. Don’t wait until it’s too late.

And it doesn’t mean everything can be fixed. Or that you should try to make someone happy all the time.

This is meant to open the dialogue. To understand each other–not as a giant wish list. Sometimes boundaries and respect are what’s really the goal.

Let’s heal old wounds. Forgive. And make new choices about how we treat each other.

~Carol D. O’Dell

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

available on Amazon

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

www.kunati.comKunati Publishers, Winner of ForeWord’s Small Publisher of the Year Award

 

 

Thursday
29May

The Wounded Healer

Carl Jung called it, “The Wounded Healer.”

 

I call it "needing to be needed."

Caregivers, whether they come by it willingly or are drug into their caregivingroles, become accustomed to being needed. It’s comforting  and satisfying to know that you have a purpose.

What do you mean when you say, “wounded healer?”  Is that a bad thing?

Wounded healer is an archetypal personality type that psychologist Carl Jung used to describe the relationship between analyst and patient–why a person might go into the psychology/counseling field.

No, it’s not a bad thing. I’m not sure there would be firemen, doctors, nurses, pastors, or teachers if there life experiences hadn’t given them a reason to step into these professions–to give back or make a difference.

I know good and well I wrote Mothering Mother out of a sense of need. I needed insight and direction. I needed to know how to step into this new role as a daughter who cares for her mother. I needed to examine aspects of the soul, my beliefs, and the ramifications on my relationships.

What would caregiving do to me?

I couldn’t find the answer, so I had to write my way through.

Jung had some theories as to why people choose “needing” professions:

  • The wounded healing is consciously aware of his own personal wounds and can be empathetic toward the person in need. 
  • The care receiver/patient also possesses an ”inner healer” he is unaware of, but it’s there to help guide him and lead him to wholeness. 
  • The care giver–and care receiver (wounded healer and patient) are a good fit for each other. They need each other, in many ways.
  • They intersect at that point of need and each derives something from their relationship or experience. 

Jung also noted that you have to be careful and make sure that this type of agreement or relationship remains a healthy exchange for both people. He referred tho this as depth psychology and cautioned that the caregiver could potentially have his old wounds reopened, or get caught in a vicious cycle. He also cautioned against the ego taking over and the caregiver getting hooked on the power or the needing and falling into an an inflated ego.

For most caregivers, I fear that you’ll wind up creating more and more “needing” scenarios and begin to only feel like yourself when someone is in need or crisis mode.

It’s a big let down after your loved ones passes or goes into a care facility. You feel useless. You thought you longed for freedom but you feel lost. Your days were defined for you and now…what do you do with yourself? Who are you if not someone who cares for others?

You like that you’re good at something. You’re proud of the fact that you’re a good organizer, that you can spout off medical jargon, that you’re the one everyone comes to for a diagnosis. You actually own your own copy of Grey’s Anatomy, and I don’t mean the DVD collection of McDreamy and McSteamy.

Jung derives the term “wounded healer” from the ancient Greek legend of Asclepius, a physician who in built a sanctuary at Epidaurus in order to treat others. Spiritual writer Henri Nouwen also wrote a book with the same title. The Greek Myth of Chiron is also used to illustrate the archetype of the Wounded Healer so this whole deal about being needed and what it does to you isn’t new.

Realize that you might have codependency tendencies.

What is codependency?

NIMH, the National Institute of Mental Health defines it as: “Co-dependency is a learned behavior that can be passed down from one generation to another. It is an emotional and behavioral condition that affects an individual’s ability to have a healthy, mutually satisfying relationship. It is also known as “relationship addiction” because people with codependency often form or maintain relationships that are one-sided, emotionally destructive and/or abusive.”

Oh, that’s not me. I’m not that bad. I’m not aiding an alcoholic or hiding an abuser.

Neither was I, but I did see aspects of control issues and “only I can make her happy” in my caregiving and even parenting years. A little of this stuff is toxic.

One book that changed millions of lives was Melodie Beattie’s Codependent No More. It brought this subject out of the counselor’s office and allowed lay people to analyze their behavior and seek help.

So how do you care give without taking it too far?

  • Be aware. Realize when you’ve tied your super-caregiver cape on, when you’re deriving more power or satisfaction out of your role than you probably should have–when you push others away or start to feel oddly territorial. Awareness is key.
  • Stop being so nice! Niceness is an illness. Do what’s right, not necessarily what’s nice.
  • Trust that what is right for you is right for those you love.
  • There is a time to extend yourself for others, but make sure there’s a cut off date.
  • If you are going to have to care giver for a long time, then make a plan so that your whole life and health and relationships aren’t derailed indefinitely.
  • Give up perfectionism. Allow others to help. Ask, demand help–and then accept it. If it’s difficult, then let one thing go at a time. Let one job be done by someone else for awhile–and go from there.
  • Ask a friend to be honest and let you know when you’re in “need to be needed mode.”
  • Laugh at yourself when you “do it again.” Don’t use this as another thing to feel guilty about. Break it down into manageable chunks.

It comes with the territory, but it’s not all bad news.

 

Recent studies on happiness says that people derive more joy out of being needed and having purpose than they do out of having money. Happiness seems to be based on treasured experiences, spirituality, a sense of family, and meaningful work. It’s also lowest during mid-life when you thought if you worked hard enough, made enough money, and raised decent kids, you’d be happy–suddenly you realize that while maybe you got some of that, much of life is beyond your control. You have to dig deeper, look beyond life’s trappings to find a deeper sense of joy.

So see? If you just don’t go crazy with this needing thing, it could actually be good for you. Caregiving certainly has aspects of experiences, purpose, family, and spirituality. The key is balance and moderation.

~Carol D. O’Dell

Check out my book on Amazon: Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

www.mothering-mother.com

Syndicated blog at www.hopethrives.org

Family advisor at www.Caring.com

 

Thursday
22May

LIve With or Die From--Which Is It?

Ted Kennedy have been diagnosed with a malignant brain tumor. He had a seizure and went into the hospital just last weekend.

Yet today, he and his wife, Vicki went sailing. He loves sailing and the Boston Globe said he “finds renewal on the water.”

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

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

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

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

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

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

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

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

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

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

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

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

But after that, it’s time to move on.

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

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

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

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

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

If not, from something else.

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

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

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

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

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

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

Alan is shocked. Insulted. He retorts:

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

There’s a great distinction here.

~Carol D. O’Dell

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

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

www.kunati.com/mothering

 

Monday
19May

How To Move Past Your Grief

 

After intense caregiving and then the passing of your loved one, the first emotion I had was that of feeling charred, as if you’ve survived an awful fire–but your nerve endings, hair and skin got scorched on the way out. That’s shock.

That’s what the dying process and then going through death does to a person. You feel stunned. Numb and yet sensitive beyond belief.

You walk around empty handed and nothing you do seems to hold any meaning.

You miss your routine.

Then, the guilts and regrets wash over you.

All you want to do is sleep, but you can’t.

You have no idea how to start your life again.

Then come all the firsts–death certificate, a holiday or birthday, packing their belongings. Each one peels back another layer of new skin leaving you raw all over again.

After weeks or months (and for some, a couple of years–everyone has their own internal timetable) you know you need to get rolling again. It’s awkward, feels stupid, but you make yourself do something–get a part-time job, join a Sunday School class, go to Weight Watchers, volunteer at the library–and you simply have to make yourself go.

Everything’s overwhelming, and there’s a real temptation to just veg out in front of the television with the remote permanently affixed to your hand–or become the Solitaire champ of the world, but you know it’s not good for you.

***

 

At one of my first booksignings, a quiet middle-aged woman with long brown hair walked up to my talbe. She had her two granddaughters, about four and five years old with her, and I saw “her” in their cherub faces–plump, creamy skin, intense blue eyes–it was like seeing her reborn with all the play and innocence of childhood.

But she looked worn, exhausted, with a tinge of sorrow in her eyes. I knew she was a caregiver.

She bought Mothering Mother, and I signed it for her as she told me she had cared for her mother for the last eight years and that her mother died almost a year ago. We shared “Mom stories” and I assured her that the last fourth of my book is about the year after my mom passed away. It’s about the transitioning out of caregiving.

I assured her I didn’t look so hot after caring for my mom either. Alzheimer’s and Parkinson’s not only affect the bodies of the person wracked with these horrible diseases, but they take a toll on everyone around them. Not only did I gain close to 40 pounds from stress eating, I let my appearance go in other ways–haircuts, daily upkeep–but more than that was the lack of hope that showed on my face. I recognized it in hers.

We hugged and she walked out of the store. A few minutes later she returned, walked straight to my table (a little girl’s hand in each of hers) and almost whispered, “Can I ask you a question?”

“Sure.”

“When will I look…and feel like me again?”

***

You know you have to go on with your life.

But how?

I found that I already had my “answer” (at least a few tools) deep inside me.

This wasn’t the first traumatic event I’ve faced, and I doubt it’s your first either.

All the other things you’ve gone through–divorce, car accidents, cancer scares, even death of a pet has given you the tools to know how to heal yourself.

Ask: How did I get through ____________? (Fill in the blank)

I have a relative whose wife died in a car accident (beside him in the car). It was a grueling recovery as well as tragic grief. He dealt with it by walking–he walked two, three, sometimes four hours a day.

Months later, I asked him why he did that and if it helped him work through his grief.

He said that he used to run track after his dad left his mom when he was a teenager, and that’s how he dealt with the anger and hurt–he literally ran from it, and after a while, he had run through it. Atht eage of fifty, he couldn’t run for that long of a time, so he turned to walking. The mix of sun, air, nature, time alone, time with God, physical movement, and a daily routine began to change him and within a few months, he had gone from being an absolute hermit who lived off of anti-depressants into a lean walker with a bit of light in his eyes.

He had found his own way to heal his soul. And it was based off something he did in the past, something that had helped him before.

We have the tools and experience, and we came upon them naturally. Our bodies and spirits know what works for us. We’re naturally drawn to something–walking, journaling, classes, talking it out, the power of music, whatever it is, for a reason and not just by happenstance.

You know how to do this. Heal yourself. You’ve done it before.

It’s not that you don’t need help, trust me, we all need help, but you at least have a few tools in the toolshed–something to get you started. Use them. Look back and examine how you got through tough times. How did you make it through? 

What’s two or three things that seemed to help you dig yourself out of that hole? Try using them again.

***

I leaned over my booksigning table and told this sweet, quiet woman with long brown hair to give it some time. Do something she liked or at least could tolerate. Be gentle with herself, but that “she” the essence, the joy, the person she always knew would return. Be patient and envision herself whole again.

***

Trust yourself. Trust your journey. Grief will burn itself out, at least the most intense parts will.

You will eventually look and feel like yourself again.  

~Carol D. O’Dell

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

available on Amazon

Family Advisor at www.Caring.com

Syndicated Blog at www.OpentoHope.com

Friday
16May

Find Ways to Give--Alzheimer's and Parkinson's Team Climbs Ten Mountains in Ten Years Campaign

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. 

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

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, 200 8) 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 (2 8) - 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.
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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.
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 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

 

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:

www.theRegulars.org

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

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