Surviving and Thriving Through the Holidays: You Are Not Alone

For grieving people, the year of “firsts” includes your holidays without your loved one by your side.  It’s different for everyone.  To celebrate by looking back is cherished by many.  Others, still too painful yet.  Those are the ones who can only look forward so they don’t get stuck. Everyone handles the holidays different who is grieving the loss of a loved one.  Special events come into play, family meals and traditions, the sounds and smells of music and cooking.  All of it.

“How do I do this?” I remember asking myself back in 2014.  I will never forget that first holiday season after my husband died.  I will never forget the second Christmas or the third.  I started looking at time differently the first year.  I regard my life as “since Jordon died” in years.  My new life started five years ago when he passed away.  I have been building my life back again since then.  We are within two more weeks of the Christmas holiday and I am feeling the waves of new and old emotions and just trying to hang on.  The second Christmas I tried to open the containers of ornaments for the tree and all our decorations.  It was a physical monumental task to do it.  I will never forget the energy that was contained in those christmas bins.  To this day I struggle to think of getting the beautiful memories out of those boxes.  Hey, to each his own.  Mine is a struggle because Christmas was so precious to me with my family.  Now I can’t look at the stuff but I know it will get better………

During the course of these last two years I have been with my new love and we have blended our family.  He is a widower so he understands me fully.  We are trying hard every day to move forward and we are doing it.  I reached as high as I could to put that prayer and wish out there.  I wanted a new life.  One of a peaceful environment. One of happiness and a new focus.  I followed the people, places, and events that lead me to where my life is today. Seeing the Living Light in 2007 is like my North Star. I always look to the visions I see and combine the people, places, and things God puts in my path and from there we have what is today.  Grief Anonymous, the Grief Resource Network, and The Jordon Barker Foundation all housed under one fantastic little iconic diner called the Launching Pad on Route 66 in Wilmington, Illinois.  We even have a 28ft. spaceman in our parking lot called The Gemini Giant.  To me, my organizations don’t belong in office buildings or a high rise in the city.  They belong on the Mother Road of our Country in the back office of our little iconic restaurant; one that sees thousands upon thousands of visitors from all over the USA and from around the world each year.  Our work is visible to all that visit our destination on Route 66. We are going to spread the news about Grief Anonymous and our Network far and wide, year after year, month after month, and day after day.  Grieving people will find the resources and help they need.

Thats my Christmas wish.

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On Becoming a Tree…

After Jordon died I spent a lot of time in nature.  My sensory mind was in overload and I needed to connect with what was real.  I noticed my immediate environment so much more and appreciated the beauty in the dying trunks of trees, the fallen leaves, the dead beetles on the ground.  I also noticed the new shoots of flowers and grasses, the bees buzzing all around me, and the singing of the birds.  Life and death were all around me in amazing glory and it all was happening harmoniously in sync right before my eyes. Seeing life and death in nature helped me understand what was untimely in my eyes as a source of an eternal answer as to Jordon’s death at the young age of 41. I was able to reconcile my grief through nature. Birth, living, dying, and death were cyclical for all things and some of it happens in a predictable way as we think it should and some of it not.  Our environment dictates.  Our human footprint dictates.  The decisions we make impact the world around us and we are all in this together.

As in nature, I have discovered there is a movement to return to true nature after death.  We as a society see funerals and memorial services as a “structured definite” in order to pay homage to those who have passed away and in some locations its even written into law.  We place them in coffins and bury them.  My husband was cremated into ashes and we keep them with us in an urn in my sanctuary. We had a very costly memorial service for him at the funeral home near the town where we lived which was not a good experience.  I now am thinking outside the ritual of what is commonplace and have decided that I want to be a tree.  I will be naturally buried under a sapling tree and continue to join the cycle of nature. Amen.

I took this picture in Telluride, Colorado of the Aspen Trees in the fall.  They are all interconnected and have “eyes” on their trunks.  I want to be an Aspen Tree so I can see and communicate and soak in the sun yet again.

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Understanding the Epicenter of Loss and Learning to Forgive

I was never an easy person to be in someone’s life, that I admit.  Those who chose to hold me tight knew I was worth the trouble whether it was just by the fact of being of the same blood or by the fact that I love hard and fierce and I am loyal and protective of those who are close to me.  I have always been lacking of a filter and said what I felt was true to my heart and mind even though it sometimes created a difficult reverberating ripple effect within the circles I stayed within. I am a far cry from a perfect person.

Change is hard for many people.  It somehow comes naturally for me and has come as a blessing because without my love of change and new environments I doubt I would have been able to survive the experience of losing Jordon.   The change of his absence was immense in my life as well as for the people within our circles.  His rapid demise from cancer was earth-shattering.  Mind-blowing.  Family and friends were completely taken off guard.  In six short weeks our lives went from normal and healthy to his dying. His death was like an explosion with all of us blasted away and hanging and scratching to hold on by tree branches, jagged rocks, and vines over a cliff wondering how to climb out of this steep valley of death that was so far below us.  None of us let go somehow and we all barely climbed over that cliff, shell-shocked and changed forever by his death. We were all lucky.  Many in this experience just let go.

It was during the aftermath of the explosion from his death and all of us climbing out of the abyss that we all started relating to each other using our most primal thoughts and reactive behaviors and many of them dark in their nature. We were all acting from our gut-instincts of survival. We were suffering severely.  Our emotions were as raw as third degree burns on the skin.  Words were exchanged.  Vicious acts by family members were committed against me and my son by those closest to us which serve as a timeless reminder of widows and children without fathers over the ages and how they are treated by society to compel even the writers of the Bible to remind all of our vulnerability and to spare us from cruel human nature.  I felt like my son and I were put in stocks in an ancient town square and rotten food was thrown at us and we were mocked and stared at.  Old memories of times when things were not good within our family surfaced in their minds and they acted upon those ancient feelings towards us, completely justified in their minds as to why they were behaving the way they did.  Friends disappeared. Neighbors no longer wanted their husbands to help me out of fear that I was a now a widow and out to snatch their husbands from them.  My life was becoming a visual watery fishbowl of just me and my son.  No plants to hide behind.  No cave to dwell in.  I was totally alone in my experience with no person to relate to out on public display to judge and ridicule and pity.

In being true to my own spirit, I shared my unraveling in full view because it was more important for me to be true to myself and not mold myself into what others thought I should be.  I found a new friend early on after Jordon’s death.  Someone who God put directly into my life and gave me a source of peace and a different plane to exist on while I figured my life out and found a path to create Grief Anonymous. For this, people moved down a couple of seats not to be affiliated with me and added loads of gossip and drama fodder to my plate.  I forgive you, the ones who lived in your own home town with your intact families and who went to sleep every night with your beloved spouses.  I forgive you for you know not what you did and deep down I know you saw me as a fearful example of what you hope will never happen to you.  I understand fully. However, one of you will likely go first, so it will happen.  Use this memory for your future benefit.

I realized I had no one to help pull me to safety.  Everyone was pulling themselves out and didn’t have the reserves of strength to help me nor my son.  It seemed the only reason why some of them wanted my son around was for their own healing, not being able to see past their own pain to recognize what he needed as an 11 year old boy who was in complete shock over suddenly losing his beloved father. It didn’t matter to them.  He became a pawn to play in their pain games to ease the burdens in their own hearts.  They acted out as a means to hurt me as much as they could and they knew going after Jackson would strike me at my core.  This is the time my spirit totem of Mama Bear grew to heightened proportions I had never felt before.  I moved mountains to save his hurt soul. They did get passed me to get to him, and I think many of them have passed over their early actions to blame me for not having him in their lives at this point, yet they only have themselves to look to.  A simple apology is something he will probably never get. He will grow from this and learn and you will carry the weight of it all.

My primal instincts were on full protective alert.  There were people close to him that were hurting him out of their own instinctive need to pass off the pain they felt to another through targeting. Unbelievable but true, children are easy targets in grieving families and circles. Sometimes uncontrollable anger and rage are brothers to the emotion of grief.  People with shattered hearts in the beginning can only react to their pain.  Responsiveness to others to grief and loss come later, reactionary behavior is all a person can do in the beginning.  It’s as reflexive as burning one’s self.  Your initial reaction is a swift withdraw and a yelp or a scream.  I forgive this as I know you only reacted to your own experience of losing Jordon.  I forgive you for acting in your excruciating painful display of behavior towards me and my son soon after Jordon died.  I know what you were like as a person before and that’s why you were in my life to begin with. I will choose to lift myself out of these memories and acts of pain and look farther into our history to remember the good times and the love that was shared amongst us all.  I see your wounded soul trying to recover some sense of normalcy in your life as you are striving to weave together new good experiences.  I also see it is too painful for you to reconnect with me as I am only human as well and remain vigilant and protective of my own recovery and that of my son’s wellbeing.  I chose to look towards these good memories and my beliefs of who you are in the core of your existence on this earth and know that you are doing your best.  Time is still young from our experience.  Forgiveness is mine to give freely without expectation of amends and reciprocity.  Anger, rage, fury are not my friends and do not belong in my heart or my mind so I let them go.  I unpack these emotional bricks from my backpack on my journey forward.  I turn to the Tenets my Higher Power gives to me as a means of healing and health:

Tenet #7 Learning to forgive and what forgiveness really means. Forgiving ushers in a peace in one’s heart which keeps love flowing through it in order to really live in the rest of your days. Amen.

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The Duality of Grief

I am coming across some thoughts and visions about this experience with losing Jordon and the onset of my grief…my love…ongoing for him. The pain still hurts a lot.

In the beginning I was just trying to survive.  I had my eye on the prize which was surviving the first year without the father of my eleven year old son.  I got there.  I felt a “finish line completion” emotion come over me, but then I went home from the race I was so glad that I had won that I didn’t take notice to the aloneness of our home. It was still the same. The silence was deafening.  Jackson, as an eleven year old boy, who had had only 6 weeks to digest this was going to happen to us was sitting with me looking up into our big Victorian style house that I had just finished fully renovating, and said, ” This house feels too big now”.  I know he was experiencing the feeling of the Great Void.  I felt it too in those first few months of the epicenter of Grief.  Wow.  It is a feeling that cannot be fully described in words and to which no person on this planet that if you have never had this experience happen to you, then there is no way for you to understand it.  It has to be experienced to fully understand what grief feels like.  My point is, grief is a life-altering, completely enveloping, full emotion that comes to stay in our lives forever.  We have to make room for it.  It effects every other emotion we have.  Every relationship we have.  Everything.  It is a new era of our lives when we have this ushered in to our lives whether we want it or not.  Whether we believe it or not.

Grief is love.  Therein lies the duality, yet the dichotomy of Grief.  This powerful emotion of grief can also create a cataclysmic broadening of our awareness, our spirit, our Higher Power, and our knowledge and wisdom to our lives here on earth now.  The here and now is happening.  We are still living and breathing and responding and trying and scratching and clawing our way through this experience.  Many of us have very spiritual experiences of our Loved Ones passing away.  I always try to remember to Look Up.  Use Tenet 1 and Tenet 2 as your Highest Level go-tos for strength and wisdom and perseverance through the real hard days.  Acknowledge the surreal love with the pain, signs from above if you see or feel them, and enjoy the connectedness you can have to what you need to survive, heal, and thrive?   The ultimate choice would always be to be able to have this wisdom intact that we all experience through grief and just go back and have our loved one back with us.  Gratitude would abound. But we all know the truth and our lives are moving forward without them…..Like Alcoholics Anonymous is for the Alcoholic, a Spiritual Solution, so we are for Grief.  Higher Power, Finding a Sanctuary, Learning to Forgive.  It is working for me and for many others too.  I need it daily.

The Key to opening your heart to Grief that will never leave your doorstep, is to accept Grief in and give Wisdom and Knowledge a comfortable chair to sit on.  The pain and the heartache and the grief waves will be there too, but they don’t get to steal your joy, gratitude, and hope, and love. Every emotion has a place at the table of your heart with Grief. Grief is just the visitor that has come to stay. We just have to make room for it and allow the good emotions to have their say too. img_5816

 

 

Face Your Grief: Letter to Grieving Kids from my 14 Year Old Son Who Lost His Dad Two Years Ago

Grief doesn’t go away for us.  And it sure doesn’t go away for our children when they lose an important loved one in their life.  We feel a compounded grief when our children grieve.  The pain of watching them as they struggle to make their own way through grief is very difficult on us. We do our best most of the time.  Other times we do our worst when we ourselves are consumed with a big wave of grief.  Everyone has a full plate in the epicenter of grief, and children are no different.  Some stop talking.  Some act out.  Others pack it all away and do not face their loss and pain.

There just is no rule book here to go by.  All of our situations are different and to pull them all together under one plan of action just doesn’t work. One size doesn’t not fit all when it comes to grieving children.  Just like the education of a child take a village, so does helping a child through grief.  Grief Anonymous wants to be part of giving back to children.  And who better to relate to grieving children, than grieving children themselves.  Here they can come online, read stories, post comments with their parents if they want to, and not risk having to tell their story to other children who do not understand what they are going through and even become frightened over hearing their experience.  When my husband died, several children who were friends with my son had to go to counseling just from being a witness to our experience. They were terrified that they would lose their parent too. It was a big reality check for many people in our community.  The feelings that they have at school can be isolating and confusing and cause emotional turbulence in their young lives being around other children who have never felt grief and loss before.  Connecting children through the writing of stories and experiences here can maybe allow them to know they are not alone.  And they will not have to risk their friends who don’t understand finding out about it.  Teenagers are sensitive about self-image and to wear their grief out on their sleeves is very difficult when you are just trying to fit in.  We as adults remember this awkward stage we ourselves went through.  Imagine going through all of that, along with grief.  I think I have a remote idea now as I write this at how important it is that they know they are not alone.

My son woke up this morning having another hard day with lack of sleep and was struggling going to school. I gave him his laptop and said- write it out.  He wrote this and asked me to share it with you:

I realized another very important thing about dealing with grief today.  It has been the most difficult thing to process in my mind.  It’s like this advice has been said to me multiple times and I couldn’t understand it.  Whenever I feel upset about something, my mom would say, “you’re grieving your dad.”  As a kid, that’s honestly the hardest advice to take. Ever since my dad died, new good things and good opportunities came into my life, I would always have a bad side to it.  Now I know, something that has been said to me since my dad died is really true.  I never focused on the main problem and that caused me even more pain and sadness when really I could’ve had less had I dealt with my grief.”

Thanks for reading,

Jackson

 

This was Jackson two years ago at his father’s company location for a memorial tree dedication, four months after his father passed away .  He got up in front of all his dad’s co-workers and told them how much they meant to is father, how he enjoyed hearing the stories from work,  and for that he was grateful.  I am so proud of this young man.  I see his father’s Light through him every day.

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The Jordon Barker Foundation, Inc.

My husband, Jordon passed away at 2:00 am in the morning at hospice just 13 hours after he was admitted.  We did not know it was his last night with us.  We did know he was in severe pain and we were doing all we could to keep him comfortable.  My husband was 41 years old when he passed away.  Cancer stopped him abruptly in the middle of his life. He was an amazing father. His friends and connections were scattered all over the world and he was finally back in his hometown surrounded by his childhood friends, family, and loved ones. I don’t think there was a soul on the earth that he knew that didn’t like or love him. Between the time he was diagnosed with metastatic cancer till his passing was only six weeks long.  We had no idea death would take him so soon.  We thought he would live through the summer and that we still had some time as a family, but that was not to be.

We, the ones left behind, often have to whitewash our real experience of losing our loved one.  When we are asked, we skip on many of the hard details when we discuss the nature of our experience of losing them.  We do this for many reasons. To tell the real story of what transpired takes away a sense of privacy and a dignified death to talk about the unpleasant details. We sanitize the conversation to protect the one who asks so we don’t ruin their day and hear our own voices as we describe what we bared witness to. What we experience behind closed doors stays there. Or so we think.

What happens to many of us through the experience of loss is emotional trauma. The after-effects of trauma emit an energy in the human mind in the form of anxiety, panic attacks, PTSD, OCD, and depression.  These are the symptoms of grief, not grief itself.

I remember being in my husband’s hospice room and having some emotional turbulence around me and out of nowhere the feeling of lack of air, light-headedness, and weakness came up without warning.  I felt my blood rushing to my face.  I was not able to talk. I heard a ringing in my ears and felt a welling up of nausea begin.  I was sitting next to my husband’s bed and I literally fell out of my chair and on to my knees unable to breathe. This is what a panic attack feels like.  I made my way to the other side of the room and crawled up on another chair and kept my head near my knees and tried to breathe.  I did the only thing I could do. Pray.

Our Father Who Art in Heaven, Hallowed Be Thy Name, Thy Kingdom Come, Thy Will be Done On Earth as it is in Heaven, Give Us This Day our Daily Bread, And Forgive Us our Trespasses, As We Forgive Those Who Have Trespassed Against Us, Lead Us Not into Temptation, But Deliver Us From Evil, For Thine is The Kingdom, The Power And the Glory, Forever and Ever,  Amen.

I said it in my mind and softly on my lips over and over again until I could finally stand and breathe. My spiritual mantra brought me out of my reality and slowed the energy that had overcome me.

Over time the trauma symptoms from my experience of losing my husband are still with me, but they no longer have the piercing, cutting edge to them that they once did. Other people are not so lucky.

For many of you out there, the symptoms have not slowed and they have disabled you. They have come to rule your world without your permission. Grief is alive in society within our homeless populations.   Drug addiction and alcoholism are often the result of not being able to cope with the trauma over loss.  I know thousands of people are living this life because I see it every day on my Grief Anonymous Facebook page and my closed online grief group.  Many people who have experienced loss have found themselves incapacitated from grief and trauma.  They cannot hold a job.  They have no back-up and they lose everything they have, including their own minds.

This is the part of grief in our society that cannot be whitewashed and sanitized.  Their story must be told and the shame and stigma must be removed.

I remember joining an online grief group on Facebook after my husband died.  I remember a woman in Florida on one particular post who had just purchased a train ticket to travel several states away to her aunt’s home for safety, shelter, and hopefully a hot meal.  She only had $5 in her pocket. She had just lost everything as a result of her husband dying.

I will never forget the moment I read that.

I have founded the Jordon Barker Foundation, Inc.  Through the foundation, we will seek to find local charities throughout the USA who can earmark funds for those who are suffering extreme hardship due to grief and loss.  I want to clarify something important. We ourselves are not a charity.  We are a foundation that will give to charities.  We will be looking for legally-registered, financially transparent charities who are local in their communities and who are established to help people who are in crisis from the loss of a loved one.  I want to do something so that people like the woman in Florida have something more than $5 in their pocket and a train ticket to their name.

Forever forward,

Holly C. Barker

CEO, Founder of the Jordon Barker Foundation, Inc.

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My Son’s Advice to Other Grieving Kids about Losing His Dad Two Years Ago at the Age of 11. In His Own Words:

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I woke up today not feeling up to anything. I had a bad dream and I’m stressing over my grades because they are terrible. I was walking to my bus stop and my feelings kept crawling deeper inside my head. I texted my mom and said “today is not going to be a good day,” so she let me come home.

On my understanding of how to deal with my feelings when it comes to grief there’s no way that I can make myself happy in a second. I think of it like a table with lots of food on it. You can not eat all of it at once. You have to be the smart one and sort this out. I would start off with the stuff that catches my eye first. Then I would slowly take it day by day eating the food. That’s my vision on how to deal with problems with grief over losing my dad. If I choose to eat all the food (deal with all my problems) in one day, I would feel terrible. If I choose to do it that way, none of my problems would get solved. If you don’t take it slowly and deal with all your problems, they will turn into bigger problems. In many situations this is true. No matter what the situation, you have to be your number one priority and you have to sacrifice stuff that does not have to be in your life.

A good way I like to get through my week is to not to look forward only to my Friday night, but to take every day and try to find something to enjoy about it. Take your free time and use it as fun and wisely as possible.

After my Dad died, my mom and I moved back home to be closer to family. All through 7th grade I could not stop missing Toronto, which was the city I grew up in. I spent most of my free time missing home. That is an example of problems that don’t need to be in your life. Now I realized I missed a whole school year on helping myself get better. Free time is the most important thing in going through grief. If you don’t know how to use it right, you’re getting nowhere. If you use it right I PROMISE you will improve.

Thanks for listening to my story,

Jackson

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Solo Parenting a Grieving Child

There is nothing I want to see less than my son suffering from losing his father to cancer.  Jordon’s cancer was diagnosed March 28, 2014 and six short weeks later he passed away on May 9th, 2014.  This was my son’s experience with loss and there is no way to fathom how that feels unless you go through it.  Children at this age don’t write too much if they are athletic and boyish and enjoying the outdoors.  But what I want to tell you is I am watching this remarkable young man of mine, now who’s 14, grow to be a man.  And I want to write out a little of his experience as to help others and so I don’t forget.

One of the most painful days I’ve experienced so far in my life was watching my son wake himself up crying.  That’s real grief there.  And it ripped my heart out.  It is seared into the memory of my mind as one of the lowest days of my life.  What I will say is that morning drives me to help him heal and for me to do my utmost for his highest good.  And one of the things I do to help him is to get out of his way and let him use his own intuition and inner knowing so he can make his way to what he needs to heal.  And just like being a grieving adult, children are all individual and different.  And they are human too. And I feel as parents we might be too quick to get them doing things they might not be ready for.  Our nature is to jump in and save our children from pain.  It’s our job to protect them and keep them safe.  But we shouldn’t protect them from their grief.  It denies them the existence of what they are authentically feeling.  They need to trust themselves enough to decide and naturally gravitate to what they need to heal.  My son dove straight into his friends.  They were his lifeline in those early days and any deviation caused extreme emotional swings for him.  As long as he was physically moving and wanting his friends around he was stable.  It wasn’t until much later on that he had any interest in anything or anyone else.  It was hard and created damage in other areas of our life, but it allowed him to move through his grief as authentically as possible and allow him to gravitate towards what he needed most to heal.  We all make our way.  We have to.  Any deviation from our authentic healing is to supplicate to another’s need and we can’t help and heal others unless we focus on our own healing first.  And thats what I gave to my son~ the latitude and wide parameters to heal himself.

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They Do Watch Over Us

Our loved ones who pass on are still with us and are able to help.  During the six weeks between my husband’s diagnosis till his death, I maybe slept an hour or two at a time.  Jordon’s pain could not be kept up with and I was constantly having to change his medicine protocol so sleep really wasn’t much of an option.  Oh yes.  This is how end of days go for many of us who have loved ones pass away.  There are doctor visits and home nurses that come to see us, but its the caregivers that have full responsibility. These are the things we don’t talk about much but we need to so that others can understand why we are the way we are now just a little better.  I lost my sense of time completely during those six weeks.  It had absolutely no meaning to me and its been real tough trying to get that back even after two and a half years.  All I was focused on was the next hour of our lives- forced compartmentalization of the day for my mind.  So sleep didn’t matter anymore.  And yes, many caregivers of terminally ill people go through more than you can ever imagine.  Because unlike doctors and ministers who work with the dying, we are working with our loved ones who are dying.  Caregiving takes on a whole new meaning for those of us who go through something like this with someone we love.

For the last 2 weeks of Jordon’s life I didn’t know when I went to sleep as to whether or not he would still be alive next to me in the morning.  That experience changed me for the rest of my life.  And there are no words to describe it. BUT….Here’s my point. The days following Jordon’s passing I had an amazing peace come over me as I went to bed each night.  Somehow I would fall into a dream like sleep and not even wake up with dreams or nightmares.  Nothing. Just peace.  And to have that happen can only be explained by the comfort they can bring us afterwards.  Looking back it makes complete sense.  And to be honest, I knew it then too. Jordon was always worried about my inability to sleep.  And this was his way of caring for me.

Tonight my son had a terrible hand injury during a football game.  A heavy 200 pound offensive lineman crushed his cleat onto the top of my son’s hand leaving every coach and doctor that saw him in the ER without a doubt that he had multiple breaks. BUT… They came back into the room and told him what a tough cookie he was with big strong bones.  The X-ray showed no broken bones.  And soon after we left the hospital the swelling went waaaaay down and he felt peaceful with very little pain.

Look, I believe.  There is not room left in my mind that tells me otherwise that my husband and my son’s father is with us, watching over and protecting.  I need to remember that more often.  Thank you, Jordon.  You amazed me in your life and you continue to amaze me now.  Jackson and I love you.

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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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