Anticipatory Grief: Debra’s Story

This is a story Debra shared with me about her own experience with Anticipatory Grief.   Thank you Deb for sharing your caregiver journey with us.  We need to bring this real experience into the forefront so that we may all know what many of us really experience and that we are not alone.  We are misdiagnosed.  Not informed. And support for this type of grief is often nonexistent. Please share this with others whom you know are caregivers of very sick or terminally ill people so that they know of Grief Anonymous.  We stand with them and are here for them.  ~Holly Barker, Founder of Grief Anonymous

My husband has been ill for the last 14 years. The past 9 months or so he has been either in the hospital, Transitional care or a nursing home more than he has been home. His prognosis is grim but he is a fighter. Unless you are or have experienced it I don’t think anyone can quite understand or appreciate the work & stress involved. For the past two weeks he has been in a hospital that is an hour from our home. Two weeks before that he was in a hospital that is about an hour and a half away from home. I am not old enough to retire so I try to juggle work, home and his needs. There is something so wrong with our society that there aren’t better alternatives than nursing homes. I can’t afford to just stay home on FMLA without money coming in. I also need to keep our health insurance. My spouse also is not of retirement age but due to end stage renal disease he is able to receive disability & medicare (which we do pay for) as a secondary insurance. He has lost his eye sight & has many physical problems. He needs full-time care and I think his needs are best served being cared for at home. Some of his problems have been caused by poor care in a rehab facility & he was only there for 2 1/2 weeks. What do people do? I am at a loss. I have contacted different state agencies but so far they just say they are sorry there really isn’t anything they can offer. I suppose if you could afford to pay someone to come into your home that would be one solution but that’s not an option for us. When I saw one of the articles about anticipatory grief – I had never heard of such a thing in my life but I now have a “name” for exactly how I feel.

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Grief Anonymous

I am more than excited to launch this organization.  It has been several years in the making for sure and it will continue to evolve and transform over the days, weeks,and years to come.  I have so much to say about this organization that there just isn’t enough time here in this one post to describe it in its entirety.  So let me just start with a few words about the  beginnings of GA. In the days to follow I will continue to add it all to this blog with a book to follow shortly. GA’s roots began to form after I transferred my writings from Caringbridge from when my husband was first diagnosed into http://www.hollycbarker.com after my husband passed away from cancer as a means to cope and to share in hopes that maybe my journey might help someone to know they are not alone in their grief.  What came to pass was a growing membership of people from around the world and right here in the USA coming to the page to connect and read someone’s shared grief experience.  From this catalyst of losing my husband, the writing has also allowed me to continue to write about the connection we all have to humanity and to a Higher Power.  Through my husband’s diagnosis and into his passing and onward through my recovery that Source of Love and Light has never left my side.  During the summer of his original cancer diagnosis in 2006, I was shown a vision of a bright, loving, beautiful light.  It was shown to me during the lowest and saddest time of my life.  I was shown and was able to feel the love God has for me, and also the pure simple love we all have for one another.  It is from this experience that the circular gold light has been created from the vision  into what is now the GA symbol.  The small circles surrounding this Light are the Tenets of Recovery.  Ten actionable concepts to follow in order to recover from grief.  These Ten Tenets are the premise and bedrock for this organization.  This group is for all to attend, no matter what your religious beliefs are or not.   No matter your ethnic origin or race.  Male or female.  Young and old. Social situation.  Grief is a collective human experience that has been in the shadows for way too long.  Now is the time for cumulative action to be taken to link us all who are on this path.  We can then be there waiting for those who will join us.  Grief Anonymous will be the light where there is darkness and bring hope to those who are bereaved and in need of fellowship, understanding, and support.

The Ten Tenets of Grief Anonymous:

  1. Belief in a higher power or consciousness
  2. Find or create a sanctuary for healing
  3. Focus on the physical fundamentals of sleep, diet, and exercise
  4. Practice baby steps and leaps of faith
  5. Acceptance of your loss
  6. Facing your fears
  7. Learning to forgive and what forgiveness really means
  8. Finding a creative outlet for your grief
  9. Embracing your new authentic self
  10. Giving back

http://www.griefanonymous.com is under construction and will be ready soon!

Holly Final final small

The Death of a Light Worker

I was shocked.  Utterly shocked.  It was out of the blue for all of us fans.  I had been listening to Prince lately.  I had played several of his memorable songs recently and was contemplating how to incorporate them into a journal because his words and talents, skills and abilities to dive deep into the human condition resonate with me so much~ not just the words of his songs~ but the music itself was a language of its own.

Prince was a Light Worker.  His gift was communication through music.  His goal was for all of us to LOVE one another.  Pay attention.  Bridge gaps.  Question and rise up against that which we know is not true and is unjust.  He changed his name.  It’s hard to download  his songs due to how corrupt the music industry is right now.  He wasn’t just standing up for himself. He was standing up for all people with gifts like his.

I so admire that in him.

He spoke of seeing Angels.  He believed in God.  He lived in gratitude.  Said his prayers.  And never asked for much.  He was a huge philanthropist. And did so anonymously.  His love and his passion came out in the form of music and he shared it with everyone.  He was a crowd swayer.  We vibed to his melody, his voice, and his instruments.  He was a part of  our younger days and remained a favorite for so many of us.

I feel a real loss though.  I think many of us do.   We danced 8th grade slow dances with our first crushes to Purple Rain.  We had posters of him. We went to his concerts and watched him turn a disastrous, rainy Super Bowl into a classic amazing show. How fitting for him to show us in the midst of discomfort and life’s uncertainties~ we can dance and sing our asses off!!  And he helped us understand how it was okay to be unique, fun, and different.

I feel I took his presence in music for granted.  Its an odd feeling.  I never really felt like this about a famous musician.  We didn’t see the sum total of what he was doing; how he was living his life, how he was helping humanity on a large and small scale.  His good actions and deeds, his purpose and life should have been more in the forefront of what gets attention these days.  He was a model human being.  I wish he would have known the magnitude of love we all had for him.  Maybe he would still be with us mesmerizing us with his guitar and his eccentric ways.

Rest in Peace, Prince.  You were a kind, soft-spoken, generous, genius, amazingly talented gift to humanity.  You deserve to be remembered wearing the highest color of divinity.

 

 

 

 

 

Brainwashing My Child

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You’re darn right I brainwash my son.  He goes through a cleansing often and it’s a powerful process…See, we as parents have a obligation to our children.  We show them right and wrong.  We need to expose them just enough to this world so that they have a healthy respect for what’s out there.  This goes for the good and the bad.  They do need to know.  But then here is where the brainwashing begins for my son.  He has a mind of his own. He is his own person.  He has learned and seen and been impacted by so many things in his young life (as many of our children have); and instead of expecting him to accept it and give away his power, I wash away that expectation and he is allowed to think and decide for himself.  He can question what he has heard.  Question what he has seen.  And ultimately~ question what he knows. He is also allowed to speak his mind, his truth, and to ask.  Children are often taught to not question authority.  They need some brainwashing from this line of thinking if they are to build confidence in themselves. I want him to think independently and become confident in what he knows to be true by arriving at his own conclusions and make decisions about how he feels about his own experience.  How else is he going to grow up and think on his feet as an adult man?

As a young girl this brainwashing was the gift my Mom gave me. She brainwashed out of my mind the negative side of expectations of how children communicate in their world.  “Use your voice” is something my mother said to my sister and I constantly as we were growing up.  “Stand up for yourself, Holly.”  Use your intuition and let your heart guide you.  Speak your mind.  It was the most valuable gift she ever gave me.  And I am passing it on to my son.  So, thank you, Mom!

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The Real Afterwards

 

July of 2006 my husband was diagnosed with malignant melanoma skin cancer. Based on the oncologist’s discussions with us if he was going to live 6 more months, taking interferon cancer treatment would help him live another 18 months. The doctor was just giving a projection. My heart sank as she spoke her upbeat prediction with a hopeful smile.

As the weeks and months rolled on we went from test to surgery to test to surgery for three years. Every three months was another scan. The building up to the day of testing and the results following were either good or “we saw something and we are just going to watch it for another few months….” became our lives. He endured surgeries to remove moles that appeared to change, painful skin grafts and lymph node biopsies. He started the gruelling interferon treatments about two months after his diagnosis while I was still nursing his surgical sites. Jordon defied the odds. He was one of only five patients at Duke Cancer Center to make it through the twelve months of treatment. He was brave and wanted to finish the treatments for the sake of our son, Jackson. And he outlived the medical communities’ predictions.

During those days my life became dictated by life and death. I rode the waves of test results and doctor visits. That’s exactly what they became, waves of emotions. Unbelievable fear and sadness with intense amounts of love and compassion seeing the love of my life suffer like nothing I had ever experienced before. I took on some of his pain somehow. Somehow I would wake up with his symptoms. I would feel his nausea. There is an intuitive, empathic response we feel when we are close with our loved ones who are suffering.  It’s the prayer we make. “Give it to me, God…  Don’t let him suffer..” And God shares it with you to ease their suffering and you help relieve the one you love of their suffering.

From this empathic response ~ it began to happened.  My health and my mind began to bend and take on the enormous weight of what was before me. A year and a half later I buckled under that traumatic weight. I fell into severe depression, anxiety, and panic from the worry and the seeing and experiencing the trauma of the waves that continued to crash over me.  Just like the ocean. The waves never stopped. This experience turned into anticipatory grief, the trauma of what is to come. What could happen when you put a name to impeding death.

About two years into the waves of tests and scans and Jordon’s pain and suffering from the interferon- I fell apart. My doctor diagnosed me with a mood disorder instead of focusing on the disorder and chaos in my life. I don’t blame her. But now is the time to bring this to light. Anticipatory grief is a real process. It is a real, often misunderstood form of grief. It brought me to my knees and to the open door of a day hospital for psychiatric patients.

I felt out of place. I was stable but completely crushed and defeated by the fear in my heart and I had gotten to a point where I couldn’t stop crying and my emotional plate was full.  My sharing at group during those two weeks was about Jordon and the trauma of seeing him after surgery. Having to work a high level corporate job. Raising a 5 year old boy that couldn’t understand why daddy couldn’t play rough. Maintaining a home. Caring for a very sick husband. All the while keeping it together.

This is the basis of what drives me to help others understand grief in all its facets. Mine is different from yours or from hers or his. We need to re-define and re-adjust our approach to this human experience that we all will go through. The only way you escape grief at some point in your life is if you are the first to go. The time to share openly, honestly, and authentically is now.

Www.griefanonymous.com

The Most Powerful Form of Love is the Love of a Child, A Thank You Letter

Wow- there is a powerful love that is the closest to God here on Earth.  That love is his power shown through the love of children.  Children have a love that is so pure and innocent.  A love that has the ability to set us free from our worries and cares.  Who else out there who has children and who remembers the nights our little boys fell asleep in our arms as they have their last  bottle for the day.  Who knows the love we feel wrapped up in a warm winter blanket with our daughters curled up reading a good book?  If you want to know God, then know children.  His Light is brightest through their eyes.   Their energy stays with their toys and pillows and blankies throughout the years.  We keep these items and never throw them away because all of their good positive childhood energy is stored in them in the form of memories.  We feel these memories and hold that old teddy bear tightly.

I want to share with you the reason for this journal.  Tonight I picked up an art poster drawn by children for my son.   This is not just any old poster.  This poster blew me away with its amazing beautiful energy tonight as I picked it up.  This poster’s power ran through me and touched my heart and gut and beamed down through and out my feet.  I was completely shocked at the feeling I felt.  It was then that  I realized what it was.  This energy burst that went through me was the stored-up love shared by children for my son.

And….I want to share with you the reason for this energy.  This poster was written in a mosaic form from each one of his friends and classmates.  This poster was written with love; a connected, deep, powerful love that children can feel and show.  It was an artistic endeavor combined with an act of friendship that all those children shared with my son in his darkest hours.  This poster was written to my son a week after his father was diagnosed with terminal cancer and died 5 weeks later.  This poster will remain on his wall for as long as he needs its beautiful, powerful, God-filled Love.

 

Thank you to all you wonderful boys and girls of Waterdown, Canada that fill my son’s heart with love.  Your love and light is captured in this poster and encircles my son with peace on a daily basis.  And for that I am and will always be eternally grateful.

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2015 in review

I wanted to send out the Year In Review for my blog to those that follow me. Viewer from 137 countries and approximately 5,500 people a month came to read.  Thank you for continuing to stay with me on this journey and know above all else- LOVE CONQUERS ALL and we must do our best and utmost to LOVE ONE ANOTHER!  I am truly hopeful for 2016 to be the year of at least 2 published books!  Gotta have goals, y’all!

Love and Light to Us All,

Holly

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 54,000 times in 2015. If it were a concert at Sydney Opera House, it would take about 20 sold-out performances for that many people to see it.

Click here to see the complete report.

For Better or For Worse

Its been a tough couple of days for me.  I don’t know why.  Lots of triggers and sometimes not so good memories.  Sometimes during the grief process not all of our memories are golden and cherished.  Old wounds.  Problems that never seemed to get resolved.  No marriage is perfect on a daily basis and I have never spoken of this here on my blog for the main reason of honor, love, and respect.

But with doing this I must also be truthful to myself and to bring to light a key process of grief and recovery many go through that isn’t spoken about often. But in doing so I must also state that tonight while going through the memories and the current situation I find myself in I was looking for some songs and I just heard out of my head in a gentle soft voice ‘Send her my love”. Jordon sent me a song.  The song’s title didn’t ring a bell to me and then when I saw it, I still didn’t know the lyrics until I played it.  It stopped me dead in my tracks with tears pouring down my cheeks.  All the words are real and of my collective experience with him and very much what he would say to me now…

What I will say about all of this is in the recesses of our personal lives and through the windows into our homes, we fight life’s battles with our families.  We seek to heal our own lives with those we are closest to.  Those most intimate connections we have bare the brunt of our externally impacted lives and we put trust into those we call family to help us through.  Our loved ones take the full force often times of weakest points of the challenging aspects of our personalities.  It’s in these relationships that we often grow and enrich our souls the most but often times its also cause of the most pain.  Jordon was that energy for me and I was for him.  When I feel anger or resentment or sadness thinking back at things that could have been different or better I remember the fact that he and I were there going through all that we did for a reason~ to be the mirrors to look into that we needed in order to heal and learn and love and to become better people.

I love you so much, Jordon.

For Better or For Worse.

Till death we parted.

And for ever more.

The Blame Game

https://www.psychologytoday.com/blog/inviting-monkey-tea/201512/when-youre-in-relationship-blamer

 

This article made its way to my newsfeed yesterday and it caught my attention.  The author used her interpersonal experiences to add in some real clinical points on what happens when you have “blamers” in your life.  Although she has yet to finish her discussion, she left many points to ponder.

I am a part of several grief groups online and I hear this scenario over and over again.  It seems to be the way many people deal with grief and any role they may have played during the event of losing someone they love.  Blaming tears families apart.  It gives a negative justification for one’s feelings and actions and it can often times remain rooted and settled in one’s belief systems for life.  The real issues and actions and events fade away and what is left is a skewed sense of facts that support blaming others and no real sense of introspection which can ultimately aid that person in healing.

Blame is the opposite of forgiving.  Blame is a much heavier, negative energy to hold on to.  It’s as if you take out of your mind your part in the event and hold it in your hands so that the action or event cannot be attached to one’s self.  The blamer disowns and disconnects from his or her actions and finds it is easier to hold the blame in his or her hands and to carry around with them until it’s released or it becomes a part of them. The Blamer THINKS holding and projecting the blame is easier, but will find out with time that its just the opposite.  Many never understand this reality and they suffer the consequences of holding a heavy, dense, negative energy that robs them of their ability to move freely through life.  It’s most corrupt feature is its ability to hijack one’s own mind into believing its false truth and it keeps the blamer’s thoughts suspended in this negative energy rather than allowing the holder to reflect on what really happened and their part they play and how to change and how to move forward and forgive and to love and to learn.  Eventually time holds the key.  One can let go of this negative energy and allow in all things good, or one can make that which they hold a permanent fixture about one’s self and walk in this lifetime with a negativity that is spiritually, physically, mentally, and emotionally crippling.  The choice is theirs to make.

As for the the one who’s blamed….See this for what it is.  Bless the knowledge.  Bless the soul who is in the grips of this.  And give thanks for the wisdom it provides.  And most importantly, forgive so that you may not be attached like a magnet to this energy.  Yes, blame attracts.  But so does love.  Your choice.

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The New Kid on the Block

My son’s first week in his new school was really hard. New country. New city. New school routine. And only one friend with whom he never saw in the halls. No one came up to him to say hello and meet him. They just looked at him and asked if he was a “hold back” from high school and silly things like that. He’s tall and big for his age and a presence to be reckoned with and instantly made the football team.

He spent that first week learning a whole new schedule and education system. He ate lunch alone. Sat in his class alone. Walked around at recess alone.  It was really tough on him. His father passed from cancer last year and we moved closer to home. The transition wasn’t easy, but it was needed.

He came home tonight with a story to tell. He’d met a new boy in school today. He said he went up to him and introduced himself.  He welcomed him. He introduced him to his hard-won friends. Showed him around a bit. He was happy he’d made a new friend and that’s where his mind was.

That’s where I stopped him in his tracks. I asked him- “What made you go over to speak to him?”  He replied, “He seemed like a nice kid and I wanted to say hi and he was standing all alone.  He and I talked and laughed for a long time.”  Again, I asked him why. And he looked at me and said~ “I’m treating him the way I wish I was treated when I was a new student here.” And I asked him, “If you had been treated by someone the way your are treating this new kid, how would you feel about them now?”  He said, “He would be a great friend to me.” So, Jackson now has a friend to add to his circle. One who is grateful and will hopefully remember how he was treated and thus do the same for someone else one day. And that my friends is the Ripple Effect.

I honor my amazing son today with this journal. He took a difficult situation that he was in and looked out at others and instead of treating them the same- he learned and practiced The Golden Rule. Do unto others as you would have them do unto you. Do not as they have done, but do how you would have wanted it to be done. He broke the ripple of negativity through his own painful experience and created a new experience not only for someone else- but also for himself because now he knows a great way to meet new friends. Humanity could learn a lot from this young man.

Love,

One proud mama!