The Greatest Concerns at the End of Life

It doesn’t matter your cultural or religious background–it doesn’t matter if you’re wealthy or just barely getting by, there are three concerns at the end of life most people share.

They’re heard by chaplains, hospice workers and volunteers, and by family members who gather around those they love and try to make the last weeks, days, and hours of a person’s life as comfortable and as meaningful as possible.

 

Here are the three biggest concerns at the end of life:

• I don’t want to be a burden
• I don’t want to be in pain
• I don’t want to lose control over what’s done to me

I don’t want to be a burden.

As a speaker/facilitator in the field of caregiving, I hear this concern all the time–and it starts long before the end of life.

In fact, I heard it from my 25 year-old daughter. She said she’d rather go into a care facility when she’s older because she doesn’t want to be a burden. It’s a sad reflection on society to think that growing older or needing help to get around is equated with being a burden. (I didn’t teach her this, by the way )

There’s a lot not being said here:

I don’t want to be dependent. I don’t want to be vulnerable.  I don’t like others telling me what to do. I don’t want to be in the way. I don’t want people to resent caring for me. I’ve dealt with the elderly and infirmed and I don’t want someone to have to do, to sacrifice what I did. I’m scared. I

But what if you’re not a burden?

What if caring for you is viewed as a privilege?

What if you plan enough ahead of time and arrange for the added/needed help so that family members do less physical work and can simply “be” with you–enjoy your company?

What if you do all that you can do now–health wise–to be strong and mobile and live longer in good health? (there are no guarantees on that one).

What if you have something valuable to offer–even in your last years and months?

What if even your dying is considered sacred and something to treasure?  (even if it is hard)

What if, by allowing us to witness your end of life, we learn how to handle our own?

Who else will teach us?

I don’t want to be in pain.

No one does. Certain diseases cause more pain than others.

I can’t promise you that you won’t be in pain.

I can’t promise you that the end will come quick or be sweet–or even meaningful in the sense that sometimes we romanticize certain events and imagine them in a glowing, fuzzy cinematic light with all of our loved ones gathered and all getting along and tears and smiles and kisses and we can be coherent and see them all and hold this wonderful moment for all eternity…and it isn’t always like that.

I can tell you that hospice in particular will do everything they can to keep you pain free.

Palliative care is better than ever–there are all over salves that numb you, take away the aches, meds to reduce fever and chills–but many of these medicines will gork you out. You may sleep a lot. You may not be fully aware of time or of your loved ones coming and going. You might be pain free, but there might be a trade off.

All I can say is that by knowing this now, you can come to some level of acceptance. That’s all I can offer you–or me. I can’t say how I’m going to go–whether it will be many years from now or any day.

I can’t say whether the end of my life will be peaceful or tragic. I just have to trust–and do all I can to attract peace.

But I do know that whatever I believe about the hereafter, eternity, heaven…it will be that I will not be in pain. I will be in peace. I will not carry the pains, hurts, and sorrows of this world onto the next. And that brings me comfort.

I don’t want to lose control over what’s done to me.

Isn’t it amazing that one of the last questions/concerns we have before we leave this earth is about trust?

This teaches me one thing–I better get to dealing with my trust issues now.

Trust is the underlying factor that determines the success of any relationship–marriage, friendships, communities–it all boils down to, “Can I trust you?”

The answer isn’t “Yes, I can,” or “No, I can’t.”

Trust isn’t about finding people who won’t ever let you down.

Trust is knowing they will–in some way or another–and being okay with that.

Loving them any way. Trusting any way.

Choosing and then living in trust. Not trust in others. Perhaps it’s trust in yourself.

Trust that you’ll be okay. Trust that you don’t always have to be in control.

It’s also about trust in something bigger than you–in God, faith, the universe, the good–whatever you choose to call it. Trusting that goodness will come your way. Trusting that the universe is out to help you.

In the end, we all know that death will come. Perhaps there will be pain. Perhaps I won’t be able to say when it will happen, where I’ll be, who will be around me, what care I will or won’t get. And that somehow I can still believe that it will be all be okay.

 

But there is one more lesson here…

There is a lot you can say about the end of your life–but you better say it now. Talk to your loved ones. Write your ethical will. Fill out that living will. Say what it is you want. Appoint that guardian or family member to speak for you when or if you can’t.

Say all the I love you’s now. Go on those dream trips. Make memories. Laugh, cry, make love, sing, dance.

You want to not be a burden?

Start now. Invest in your relationships. Call your loved ones and listen to their day to day problems. Spoil them with your time. Go for walks and hold hands. Tell them how very proud you are of them, of the kind, good people they’ve become–then they won’t think you’re a burden.

You want not to be in pain?

Don’t dwell on pain now–physical or emotional. Live “pain-free” by practicing forgiveness, letting go and laying old issues down. Pain thrives off tenseness, tightness, and focus. Pain therapists use many techniques to help their clients manage pain–laughter therapy, engaging the mind on something bigger, more interesting, acupuncture, yoga…by letting go of pain today, we don’t attract it tomorrow.

You want to not be hung up on control?

Start trusting today. Take a risk. Fail. Laugh it off and try again. When you feel like a knotted fist inside your gut, recognize it and choose to trust. Give someone a chance. Give them a second chance. Give yourself a chance. The person we least trust is ourselves. We mistrust our own goodness. We are our own worst critiques, our own biggest doubters. Start with small affirmations–say them out loud in the car or in front of the mirror:

“I trust my own good heart.”

The biggest concerns of life are no surprise–they’re our biggest concerns every day–when you come to think about it. Every day, we’re given a chance to face our fears–to see our own good–and the goodness around us.

If you’re a caregiver, and you’re with a loved one who is coming toward the end, reassure them–let them know repeatedly that they are loved, that you will do all they can to make sure they’re not in pain, that you will honor their wishes, you will be there–steadfast. They will not be alone. Each time you say this to someone else, you say it to yourself.

I know as a caregiver this time is scary.

You don’t know how. Perhaps this is the first time you’ve faced death in an intimate way–with a family member this close. I was just like you–my dad died in hospital–and I was facing the death of my mother in my own home. I worried if I’d be okay–if I could handle it–emotionally.

IYou will find your strength and resolve.

You will keep your loved one safe–and honor their life and their death.

You will give them the dignity they deserve.

Even though you may feel like running, you will be brave. You will be there for your loved one–and it will change how you perceive life–and death.

~Carol D. O’Dell

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

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How Should You Celebrate the Anniversary of a Loved One’s Passing?

Anniversaries that mark the day our loved one’s passed away can be tough days, but with a little bit of forethought, it can also be a sweet-tender day.

Your body seems to remember even before your mind.

Athletes call this muscle memory–

“Muscle memory can best be described as a type of movement with which the muscles become familiar over time. For instance, newborns don’t have muscle memory for activities like crawling, scooting or walking. The only way for the muscles to become accustomed to these activities is for the baby to learn how to do these things and then practice them with a great deal of trial and error..”

Ways to Celebrate Your Loved Ones Passing:

• Have a celebration gathering. Funerals are for the most part sad. Illness, accidents–it’s hard to remember all the sweet times when you’re hurting. Six months or a year later gather your family and friends and tell all those great-funny stories. It’s okay to laugh, cry, and remember. Do something unique–serve their favorite foods, host a football party, go ice skating or fishing …something they loved.
• Create a memory box. Craft stores sell wood boxes with glass lids. Collect Dad’s baseball cap, ticket stubs, signed baseball, a photograph of the two of you at the game and create a memory you’ll always cherish.
• Write them a letter. Tell your loved one where you are, that it’s still hard but you’re doing a bit better–or you hope to soon. Write them letters on your birthday, their birthday, their passing day–any time you want and need to talk to them–and keep these letters together. You’ll feel as if in some way they’re still with you.
• Have a place to go and talk to them. Many families choose cremation, which is a valid option–and even those who bury their loved ones in a cemetary have the issue of trying to get back to the place to visit them. Why not donate a bench to a local park and engrave a plaque with your loved one’s name on it? That way not only will you have a place to go to talk with your loved one–other people can enjoy it as well.

Know that grief takes time. Lots of time–and it’s different for every person.

I think there’s a grief memory as well.

Our bodies store everything that’s ever happened to us, and something as profound as grief cycles though our minds, bodies and spirits. We find ourselves a year later experiencing many of the same overwhelming emotions–as if no time has passed at all. Unless we teach our spirits–literally replace the painful memories with new memories, we can circle this mountain again and again.

A dear friend of mine has a very difficult few weeks leading up to the anniversary of her father’s passing. He committed suicide and also killed his wife–her step-mother. It was needless to say, a horrendous shock and tragedy. We were talking this morning and she was weepy, feeling lost–and I reminded her that this weekend was the anniversary of my mother’s passing. Then it hit her–her father’s passing date will be in a few days. Her body remembered long before she looked at a calendar.

But knowing that this happens helps.

Each year, each cycle, we can choose a path of healing–in some small way we can begin to remember with sweetness and peace instead of turmoil and panic.

This year, I spent the day I remember my mother’s passing quite differently than before.

I danced this day.

Why?

We celebrated two family weddings this past weekend–one on Friday, another on Saturday (different sides of the family). I spent all weekend at rehearsal dinners, on the beach, toasting with champagne, hugs, hugs, and more hugs. Both sides of the family are generous, sweet, affectionate people, and both sides had lost a dear loved one this year so they knew how precious a day of celebration was.

It was also the right time for me. Enough time has passed that this was the right thing to do. There is a time to mourn, to ache, but there is a time to rebuild our lives.

It’s important to celebrate every chance we get.

Life is hard enough. Death comes and taps each of us on the shoulder.

Everyone’s been touched by cancer, heart disease, car accidents, Alzheimer’s–do you know anyone who has not experienced at least one or more of these?

Life comes in packages–life-death, babies–old age. We cannot open our arms to one and reject the other. We must somehow, learn to embrace both.

If this is the first or second year after your loved one’s passing, it is most likely a very difficult day. Be easy on yourself. Do whatever you need to do, whatever way you can get by. For some, this is a day to visit a graveside–for others, it’s a day to go parasailing–to do something so big and over the top to remind themselves they are alive and outrunning death’s grip. Some can barely get out of bed.

Do what feels right and natural, even if that means feeling sad and overwhelmed with grief–right now. Know that it won’t always hurt like it does now. It will get better in time. 

I was on a boat with a friend once. We were facing the wind, our hair going wild. We were smiling and laughing and watching flocks of birds lift out of the marsh and take off in flight, the spray of water surprising us–and my friend said,

“If sorrows and tragedies can literally make us age, then can’t good times, celebrations make us younger?

Yes, it can.

Scientists and physicians including Dr. Michael Roizen, author of Real Age has proven this.

You can be younger than your chronological age by how you take care of yourself physically, and by your mental outlook on life.

I missed my mom this year.

Thinking about the day she left this world will no doubt always hurt–but as I danced with my husband, my nieces and nephews, my mother-in-law, babies and toddlers–as I hugged and kissed and cried and toasted–I knew that this was the very, very best way I could honor my mother’s life–and her passing.

To dance.

It was time to place a new memory on top of the old one. It doesn’t diminish it.

Perhaps this is why people started placing flowers on graves.

Life and rebirth trumps death every time.

~Carol D. O’Dell

Author of Mothering Mother, available in hardback or on Kindle

www.caroldodell.com

Family Advisor at www.Caring.com

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Is Your Elder Loved One (or Spouse) Considering Suicide? Know the Warning Signs

Don’t think it can’t happen.

 

Elder suicide rates are up in the United States and it usually start with depression–also a major factor in the elderly.

 

It’s a deadly combination–life debilitating illness, loss of spouse, career, a terminal diagnosis, medications all exasperate the situation.

 

But it’s not the way we want it to end.

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, chaplainor 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 hotlineand let them know what you’re dealing with. Alzheimer’s Association and other organizations also have great hotlines withpeople 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 check with your insurance as to what is covered.

Practical Things You Can Do:

• 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.

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.

 

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

 

Resources:

www.metanoia.org/suicide/

www.suicidepreventionlifeline.org/

www.save.org/

suicidehotlines.com/

 

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

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How Will You Remember Your Loved One?

We avoid thinking about or dealing with death at every turn.

Even caregivers who are caring for their aging parents try not to think about the inevitable end.

 

 

Cancer, Alzheimer’s, heart disease, stroke, diabetes, combined with age will eventually claim the lives of those we love. And sadly, by not fully anticipating and participating in this momentous event, we’re left scared, in doubt, and not knowing how to die–or be with someone we love when the time comes.

 

Who will teach us? How will we learn?

 

 

I recently interviewed a Rachel, a young mother in my community who experienced a tragedy–she lost her two year old little boy, Tyler, in a swimming pool accident.

 

 

As I sat with Rachel and listened to her story, I immediately sensed she had wisdom and insight well beyond her years. She’s handled grief with grace, forgiveness, and determination.

 

 

My own worries seemed insignificant.

 

Rachel’s story got me to thinking.

 

 

How will we remember our loved ones?

 

What memorial, statue, headstone or story will honor those who have touched our lives?

 

 

While I have nothing against cremation, sometimes people need a place to go–it’s important to create a sanctuary or sorts–a place to be, to pray, to think and meditate. 

 

A place to remember.

 

 

My Daddy is buried in Atlanta, and so this Father’s Day, I’ve had to create a new place for “us” to meet and talk.

 

I like to spend a few minutes catching up with my daddy about my life.

I have a bench overlooking a lake in my backyard. He would have liked it here. He loved to sit outside and talk.

 

 

That’s where I’m headed this Sunday.

I’m including an article I recently wrote about Rachel and a place of remembrance for all those who have lost someone they love.

 

As you read her remarkable story, I’m sure you’ll agree–we can all learn from her–how to love, and how to hope again.

 

 

Angels Among Us 

 

There’s an angel on Amelia Island. The childlike face lifts toward the sky, arms outstretched as though holding something invisible, and bronzed wings gleam against the stark Florida sun. The inscription at the bottom of the statue reads, “Angel of Hope.” It is encircled by a short brick wall and eight benches for seating with a loved one’s name on each one.

 

I found this “Angel of Hope” one afternoon on a photography/bike trek around the island. I stopped to take a picture and began to read:

 

The inscription on the back of the statue reads, “The Christmas Box Angel,” and I thought of Richard Paul Evans’ book, The Christmas Box, about a woman who mourns the loss of her child and finds comfort at the base of an angel monument.

 

At the base of the angel I read, “For all the children” and began to put it together—the benches, the names, the stones lined up at the base, the bouquet of flowers indicating someone had been here. 

 

This angel is a place of remembrance for families who have lost a child. It’s a sacred gift given by other bereaved parents and is available to anyone who would like to come, sit, and remember. 

 

I thought of Tyler, a purely sweet loving laid-back two-year old with beautiful big brown eyes, the son of Rachel and Patrick Pennewell. I remembered the day I found out Tyler had suffered a swimming pool accident.

 

Rachel, his mother told me, “Tyler was our angel. He had a purpose in being here. Sometimes I would just look at him. He was such a calm, knowing soul, and I’d wonder, you know something, don’t you? Some things be understood here on earth.”

 

After Tyler’s passing, Rachel and Patrick found the community of Nassau to be their angels who sustained them in those early weeks and months when shock turned to grief. 

 

“I’ll never be able to thank the people at our church and in our community for all they did. How can I ever show them what this meant to us?”

 

Rachel said it’s so important for bereaved parents to find ways to give back because, “What else can we do? You don’t stop being a parent. You have to find a way to give, and in that giving, your child lives on.”

 

I asked Rachel how she got to a place of peace.

 

“Tyler’s life completely transformed the way I saw myself, and that lives on today. He brought such peace into my life, from the moment of conception on; it was as if he had a mission. Patrick and I now have a second child, Hannah, Tyler’s little sister. I promise, Tyler helped pick her out. In so many ways, he’s still with us. He’ll always be with us.”

 

As I stand in this circle and read the names on each of the benches that surround this angel, I wonder who each one of them are, what their stories are, because it’s our stories that connect us–not the how did-he-die stories–but the deeper question: how did he live?

This Amelia angel creates a circle of hope; the hope and belief that each child’s life, no matter how short of a time they spent on earth, is a gift. If you look closely at the angel’s right wing, you will see the word “hope.”

 

The golden moments in the stream of life rush past us

 and we see nothing but sand;

the angels come to visit us,

and we only know them when they are gone. 

                                                                                                          ~George Elliot

 

Christmas Box Angels are erected in more than 25 other communities around the world.  http://www.richardpaulevans.com/statue.html

If you’d like to view a photograph of this statue, it’s posted on my website at http://home.comcast.net/~cdodell/ (www.mothering-mother.com) on the Caregiving Tips page.

~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 Need to be Needed?

Do you need to be needed?

Carl Jung called it, “The Wounded Healer.”

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.

But 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.

Balance, grasshopper. Balance.

~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

 

 

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Are You Living With–or Dying From a Disease? Something for Caregivers and Their Loved Ones to Consider

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

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

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

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

Alan is shocked. Insulted. He retorts:

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

There’s a great distinction here.

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

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

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

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

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

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

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

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

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

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

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

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

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

But after that, it’s time to move on.

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

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

You can still find joy–and purpose.

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

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

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

If not, from something else.

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

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

~Carol D. O’Dell

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

Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir

available on Amazon

www.mothering-mother.com

Family Advisor at www.Caring.com

Syndicated blog at www.OpentoHope.com

www.kunati.com/mothering

 

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Are You a Bad Caregiver? Do You Know One? Signs of Elder Abuse

No, you’re not.

Bad caregivers don’t seek out blogs on caregiving.

They don’t attend caregiving seminars and workshops.

They don’t worry about how they’re treating their loved ones.

Bad caregivers feel completely justified in their actions.

So, lay that aside.

If you lost your temper, it’s okay.

Make a plan on how to avoid it in the future.

Make a plan on how NOT to let your loved one push your buttons.

You were probably sleep deprived, exhausted, hungry, your back hurt, you were tired of dealing with all the layers of responsibilities that caregiving brings–and your loved one manipulated you, goaded you, or refused to cooperate. Still, it may be time to assess where you are–if you’ve picked up any bad habits. Verbal abuse is the most common, and it’s an easy trap to fall into. We all get frustrated.

How do I know when I’ve taken it too far?

Once or twice is an isolated incidence, but can you look back over the past three or four months and realize your tone, your demeanor has taken on a different slant?

Would you be embarrassed to have anyone hear you or see how you treat your loved one?

Are you so isolated that no one is around to see?

It’s time to make a plan.

You grabbed them too hard. Gritted your teeth. Threw something. Let that go now.

Say you’re sorry and mean it.

These were warning signs, so heed the warning. 

Do you need more help? Do you need respite–a weekend off?

It’s no longer a luxury, it’s a necessity–it’ll save your health and your relationship.

You might even need to put them in a care facility. You might be at the end of your rope. That’s okay if that’s true. You’ve done so much already. You’ve really, really tried and this is really really hard.

My mother had Alzheimer’s and Parkinson’s, so I know. I went to my bitter edge. And yes, we had some rough times. One time, my mother dug her nails into my arm. I had to pry each one back–while I was in excruciating pain–and she was screaming her lungs out–and I was bleeding.

I thought I’d lose it that day. 

I thought I would, but I’m blessed that I had my daughters in the house. I couldn’t. 

I couldn’t go ballistic. But I also knew that I couldn’t keep this up.

I couldn’t let this happen–to me–or to them.  So yes, there are times when you simply can’t manage your loved one at home any more.

This doesn’t make you a failure.

Some diseases are monsters and they take our loved ones from us.

Abuse of the elderly is a serious problem–close to a million cases are reported each year, and many, many more are never brought to light. While family abuse does happen, many times, abuse is by those who are in the elder-care field. 

Let’s face it, this isn’t a high paying field, and it’s easy to prey on someone who is physically or mentally vulnerable. This is why it’s so, so important to stay involved with your loved one’s care.

It’s crucial.

Most people don’t realize this, but for some positions in the elder field, employees can have a certain amount and level of past criminal charges. This is a legal and a widespread practice.

I am all for rehabilitation. I’m just not sure that placing someone with a criminal background in an environment with little supervision, dealing with vulnerable people is such a good idea. It’s sad that we pay sports demi-gods huge salaries while caring for our children and our elders gets so little remuneration–or respect. Don’t get me started.

Someone who is abused may act or show signs in the following ways:

Signs and symptoms of specific types of abuse

Physical abuse	Unexplained signs of injury such as bruises, welts, or scars, especially if they appear symmetrically on two side of the body Broken bones, sprains, or dislocations Report of drug overdose or apparent failure to take medication regularly (a prescription has more remaining than it should) Broken eyeglasses or frames Signs of being restrained, such as rope marks on wrists Caregiver’s refusal to allow you to see the elder alone
Emotional abuse	In addition to the general signs above, indications of emotional elder abuse include Threatening, belittling, or controlling caregiver behavior that you witness Behavior from the elder that mimics dementia, such as rocking, sucking, or mumbling to oneself
Sexual abuse	Bruises around breasts or genitals Unexplained venereal disease or genital infections Unexplained vaginal or anal bleeding Torn, stained, or bloody underclothing
Neglect by caregivers or self-neglect	Unusual weight loss, malnutrition, dehydration Untreated physical problems, such as bed sores Unsanitary living conditions: dirt, bugs, soiled bedding and clothes Being left dirty or unbathed Unsuitable clothing or covering for the weather Unsafe living conditions (no heat or running water; faulty electrical wiring, other fire hazards) Desertion of the elder at a public place
Financial exploitation	Significant withdrawals from the elder’s accounts Sudden changes in the elder’s financial condition Items or cash missing from the senior’s household Suspicious changes in wills, power of attorney, titles, and policies Addition of names to the senior’s signature card Unpaid bills or lack of medical care, although the elder has enough money to pay for them Financial activity the senior couldn’t have done, such as an ATM withdrawal when the account holder is bedridden Unnecessary services, goods, or subscriptions
	Duplicate billings for the same medical service or device Evidence of overmedication or undermedication Evidence of inadequate care when bills are paid in full Problems with the care facility: - Poorly trained, poorly paid, or insufficient staff - Crowding - Inadequate responses to questions about care I share with with you from the Elder Abuse site at http://www.helpguide.org/mental/elder_abuse_neglect.htm If you feel pushed to the edge, ask for help. Pick up the phone. Call your local Alzheimer’s Association, Hospice Associtation, Council on Aging. All of them have a list of local resources to assist you. No one wants to take your loved one from you. They want to help.  Having a momentary lapse in good judgement due to stress is absolutely normal, but don’t simply hope that it stops. Losing your cool is your body’s and mind’s way of saying, “I need some help here!” I hope this list helps you protect your loved ones. Be careful who you leave them with. There are reputable companies and organizations who have a system of checks and balances. It’s better to go with someone who is licsensed and bonded–who has something to lose if one of their employees gets out of hand. Stay close. Drop in. Vary your schedule. Check for signs and symptoms. Be vigilent. ~Carol D. O’Dell Author of Mothering Mother: A Daughter’s Humorous and Heartbreaking Memoir available on Amazon www.mothering-mother.com Family Advisor at www.Caring.com Syndicated Blog at www.opentohope.com

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Are You At Your Breaking Point?

I remember that day well. The day I knew I couldn’t keep on caregiving like I was–not full-time, 24/7, in our home.

It wasn’t about being exhausted to the bone, frustrated to the point I had gritted my teeth down to the nubs, or numb due to months of interrupted and little sleep.

It wasn’t about me. Or Alzheimer’s. Or the end stages of Parkinson’s.

My breaking point was about my daughter.

I wrote in Mothering Mother:

I didn’t expect it—not today—the day I would decide I couldn’t take care of Mother anymore. It’s not really about how hard it is to care for her, but then again, maybe it is.

I should have known that in the end the deciding factor would not be when I had had enough, but when my family had had enough.

Cherish, our youngest daughter is in the hospital. She has a severe kidney infection.

It started out with a backache that lasted for a couple of weeks, and then last night she came down with flu-like symptoms, only something was different about it. My mothering instinct kicked in, and I told Phillip I had to take her to the emergency room.

She was admitted, and for the first time, I found myself in the children’s wing of the hospital, the walls decorated with brightly colored tropical fish murals, and a friendly, concerned staff.

I spent day and night beside her, getting washcloths, holding back her hair and wondering how she had gotten so sick and I didn’t know it. I’ve spent every lucid moment taking care of my mother. My own child needed me and I didn’t pick up on it.

 

Cherish’s medications worked and we barely avoided surgery, but they told us one kidney was smaller than the other and we would have to continue to monitor the situation. She spent five days slowly improving. My mother-in-law flew in to take care of my mother, which was a godsend. 

On the day we were told we could leave, the doctor did a final exam. She asked Cherish, ”Who’s your best friend?” and “What do you like to do for fun?”

Cherish’s answers were polite, but lacked enthusiasm. I wondered how I’d answer the same questions. Our life had become as bland and monotonous as a bowl of oatmeal.

The doctor asked what home was like and Cherish explained how her grandmother lived with us. She said it was hard. 

I sat there, stunned, not ever having fully realized the impact of Mother’s care on my children’s lives.

 

“Is your grandmother’s care too much for you or your mom?” the doctor asked and I felt sick inside. How did we get here? How did it ever come to this?

Cherish’s timid nod yes was followed with tears and quivering lips.

 

It all fell away. The illusion that we were all coping was over. I admitted to myself, perhaps for the first time, that this was too much.

 

I had no right to put my family through this. What had started our as love and loyalty had morphed into something unhealthy. I was no longer sure I was taking good care of anyone, including my mother.

I had to accept that my Mother’s bizarre behavior (Alzheimer’s) is no different than living with the mentally ill in practical terms. Its origin may be different, but no one would or should subject a child to this.

My children had endured a worn-out mother, a bickering, beligerent grandmother who inflicts constant verbal attacks, and the loss of the freedom just to be a teenager. This child had taken the brunt.

Everything I’ve believed in is on shaky ground.

 

I don’t know what I’m supposed to do now. I just know I can’t keep doing this.

I’ve been home a few days from the hospital; I pick up Mother’s wallet, get out her insurance card and dial the number. Within fifteen minutes I’m talking to someone who suggests possibilities.

Why haven’t I thought of this before?  What keeps me locked in the I-have-to-do-this mind-set?  Guilt?  Loyalty?  A promise Mother asked of a child?

I no longer feel obligated to do this no matter what. The no matter what is my family. I’ve done the best I can.

 

After hours hours and hours over the last several days on the phone—time I don’t have to waste—and I’m back to nowhere. The cost for nursing care is astronomical. Mother’s conditions are not considered a “skilled-nurse necessity” and therefore Mother’s insurance doesn’t cover her. I’m stuck between paying out thousands a month for who knows how long, or piecing the care together as I’ve been doing while carrying the main load myself. So much for help.

 I basically spent a week fooling myself, thinking that I could find Mother decent care without bankrupting us. So far, I haven’t found it. Mother’s been with us twenty months and I’ve done all that I know to do. It feels like it’s time to let go, but I don’t know where to turn.

*****

I don’t know if you’re at your breaking point.

If you’re not, you may be one day.

It will be about your own family dynamics, or perhaps your marriage or your health. Most disease such as Alzheimer’s, Parkinson’s, cancer, ALS, all offer ring side seats to a very long and heartbreaking situation.

I wish I didn’t have to share this with you.

I wish I could clean it up and offer you something cool to drink.

I wish we didn’t have to talk about this, and yes, your loved one might slip out quietly and peacefully in the middle of the night. I wish, pray, and hope that for you.

 

But I’d rather share my story, offer a few insights, and reassure you that while yes, it will be really, really hard–you will make it.

My story doesn’t end here. My daughter is healthy today. We’ve managed to avoid surgery a few more times.

My mother’s passing was at home and peaceful, but it was slow, and I have to tell you these things because who else but a fellow caregiver will be this candid?

 

Sandwich generation-ers aren’t people just under a catchy umbrella. Their concerns aren’t just how to get little Jimmy to soccer practice–many of them face gut-wrenching choices.

I can also tell you that I believe my children are grateful for the experience of living with my mother, and while aspects of it were really hard, they gleaned a lot, learned a lot about themselves and what it means to be a family.

Did I pray? Turn to God for help? I think I did, although I was in full crisis mode, and I didn’t have the sense to make a formal plea. Nor do I think we need to. A desperate prayer occurs instantly.

Did I have faith? I’m not sure I had much of anything, and I can’t see a divine loving being holding that against a worn-out caregiver. We think we have to jump through hoops–do it right, say it right. I don’t think so. I’m just grateful our lungs are on auto-pilot because in times of great stress, I’m sure I’d forget to breath in and out.

Did I let some things go on too long? Should I have done some things differently? Perhaps. I’m not one to wallow in regrets. I accept what was and learn from it.

“May you have the hindsight to know where you’ve been, The foresight to know where you are going, And the insight to know when you have gone too far”

An Irish Blessing

Where are you? Does this post hit you hard and deep? Does it scare you? Infuriate you? What is it that shakes you to your core?

If you’re at your breaking point, my advice is to go ahead and break. Let it fall apart. You’ve done all you can. You’ve loved, and given, and worked, and hoped, and now it’s time to let go. Trust. Trust something will happen, something or someone will help.

Call someone. Alzheimer’s (www.alz.org) has a toll free number. Call–pour your heart out. Ask for help. Tell others that this is it. You can’t do any more.

Trust that help will come.

~Carol D. O’Dell

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

available on Amazon

www.mothering-mother.com

www.kunati.com

 

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Attract Joy Into Your Life

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

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

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

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

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

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

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

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

ALZHEIMER’S AND DEMENTIA PATIENTS.

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

They don’t hear the don’t.

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

Wow.

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

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

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

Ohhhhh….now that I get.

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

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

I planted the image in your brain.

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

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

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

Joy is supposed to be about happiness, right?

And what do I have to be happy about?

Losing my job? Going on two hours sleep?

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

Knowing this disease is only going to get worse?

Knowing that caregiving ends with losing my loved one?

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

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

Trusting. Resting.

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

Trust, Wait, Anticipate.

Trust that good will come my way.

Wait, by finding joy and staying busy.

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

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

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

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

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

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

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

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

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

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

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

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

May you attract joy and find sweetness in each day.

~Carol D. O’Dell

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

available on Amazon and in most bookstores

Kunati Publishing

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A Look at the Will to Live

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

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

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

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

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

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

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

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

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

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

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

where does the “will to live” come from?  

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

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

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

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

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

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

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

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

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

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

“Who is then?” I asked. 

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

She made a circle with her fingers in the air. 

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

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

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

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

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

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

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

~Carol D. O’Dell

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

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