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Grief

Grief

The Grief Of A Nation-The Loss of Our Loved Ones

A year ago, like all Americans, we were living a normal life, working, going to the gym, picking up our children at school, going on vacations.  During this time my 90-year-old father, James Keith Crutcher, was showing signs of dementia, forgetfulness, an unsteady gait, and, unbeknownst to my sister and me, taking many falls in his home.

Thus began the rapid decline of my father’s health and the anticipatory grief that was growing in my heart.  At the same time, COVID-19 was spreading like wild fire, the American people were quarantined and the number of Americans dying increased daily.

This week, America reached 500,000 deaths, and counting, from the Coronavirus, and we are a nation in deep grief. I mourn the loss of my father and at the same time, the loss of 500,000 American’s.

Last Monday, the United States of America took time to recognize the loss of our loved ones for which I’m  grateful.

My father died on December 13, 2020 after taking a bad fall and breaking his neck.  Unfortunately, he had to have surgery, or be paralyzed from the neck down.  Because of the pandemic, my family couldn’t be with my dad when he was in the hospital.  We got him home with hospice care and he died three days later.

I pray with time, our nation can recover from all we have lost and heal from this devastating COVID-19 pandemic.

We Can Never Lose HOPE…..

Author Therese Crutcher-Marin

I’m a Huntington’s Disease Advocate, the Chair for the Huntington’s Disease Society of American San Francisco Bay Area Affiliate, a blogger and an author.  My website is https://theresecrutchermarin.com

 

 

 

 

 

 

Grief

The U.S. Is Living In Perpetual Grief

Author Therese Crutcher-Marin, HD Advocate

Since the pandemic began, last March, I have watched the news every morning and I’ve become obsessed with the growing number of deaths in the U.S.  As I’ve watched the number grow from one day to the next, my heart hurts for loved ones who died alone in a hospital.

Over the past few months, the Lester Holt on NBC has coined a new phrase; perpetual grief; indefinitely long-continued perpetual sadnessTypes of Grief and Loss

For ten months, as the death rate rose, we could not see this pandemic ending. Now there is light at the end of the tunnel with the vaccines being rolled out.  I’m grateful we can see the end but I still get up in the morning and look to see how many died the day before and I feel I’m still living in perpetual griefland. Goodreads.com “Griefland” 

Grief is real and can affect your health if left unchecked.  Grief increases inflammation, which can worsen health problems you already have and cause new ones. It batters the immune system, leaving you depleted and vulnerable to infection. The heartbreak of grief can increase blood pressure and the risk of blood clots.  How to Cope with Physical Symptoms of Grief

We Can Never Lose HOPE……

Huntington’s disease (HD) families are already living in anticipatory grief when a loved one is struggling with HD.  Perpetual grief is just another layer of grief for families on top of the sadness of having Huntington’s disease in their family.  What is Huntington’s Disease 

 

 

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Grief

Always On My Mind

Willie Nelson’s song, Always On My Mind, has a very different meaning to me.  Since that November day in 1978, when Lora, Marcia and Cindy told John and I about their mother having Huntington’s disease (HD), HD has been on my mind every single day.  That day was a defining moment in my life, and I would conscientiously choose to live with the threat of HD.

For many years, fear and uncertainty lurked deep inside my psyche, and I tried to hide it, especially from the Marin siblings.

Before any of John’s sisters exhibited symptoms, I was watching, noting, praying, hoping HD would give the Marin’s siblings a pass.  That didn’t happen and even though these three (3) beautiful women are gone from my sight and John has tested negative, I wake up every morning still thinking about HD. Because HD has been burned into my mind, became part of my DNA, it did one good thing, it forced me to be MINDFUL every day and that is what kept me sane; appreciating all the good things in my life.

People have said to me, “Well, you volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA); that’s why you think about it”.  That’s not the reason; for 38 years, poignant grief lived in my heart and deep and poignant distress became my normal.  I watched something so horrific that it scarred my soul and the only way I can deal with it is to help HD families in my community.

 

We Can Never Lose HOPE…..

To know more about Therese and Huntington’s disease, Visit Therese’s Author Website .  https://www.theresecrutchermarin.com

Author Therese Crutcher-Marin

 

Grief, Love

Love and Loss

HDSA 2019 Convention

Most folks have opened their hearts to love whether it be love for parents, siblings, grandparents, children or a rich, deep love for another person; spouse/significant other.

When we love, we don’t think about the emotion of loss that will eventually occur when the person you love dies.  I think it’s human nature not to spend time thinking about that event.

You cannot feel the emotion of love without the emotion of loss/grief. I ask, is it worth it to love?  I believe it is.   Article: If you love you will grieve

When I married John I was scared since he had an unknown gene status for Huntington’s disease (HD), a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s.  The disease strikes young and when a parent has HD, each child has a 50/50 chance of inheriting the mutated huntingtin gene which causes the disease. what-is-hd/overview-of-huntingtons-disease/

I knew the possible consequences of my decision, but being young, I really didn’t know how this terrible disease stole everything from someone over a 10-20 year period of time. I soon learned, as my three (3) sisters-in-law succumbed to this horrific disease.  Watching these three (3) lovely ladies, I carried a loss in my heart for 24 years.  John didn’t want to be genetically tested so I realized I could also lose him this way.

Loving John wasn’t really a choice.  I fell in love with this man and my heart couldn’t give him up so I loved deeply knowing my life could change in a blink of an eye.

To read about our love story while living in the shadow of Huntington’s disease. please see my author website:  https://www.theresecrutchermarin.com

We Can Never Lose HOPE…….

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  Beginning January 1, 2020, there will be a HDSA San Francisco Bay Area Affiliate.  Amy Fedele is the Co-Chair, I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.

My author website is: https://www.theresecrutchermarin.com

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.  

 

 

 

 

 

 

 

 

 

 

Grief

Chapter 22-A Cerebral Hemorrhage

I’d like to share a very difficult time in John and my life. You’ve heard the saying, “I wish I knew then, what I know now”.  These words screamed at me for years.  They have finally silenced because I came to realize that I did what I could with the information and life experience I had at the time.

But my heart still hurts from losing my friend.

My dear friend and sister-in-law, Lora, was spiraling out of control, self-medicating with alcohol.  The threat of Huntington’s disease (HD), deep depression, unable to keep a job and her husband washing his hands of her was too much for her to bear, or really, anyone could bear.

Excerpt from Chapter 22, pg. 176 Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  What is Huntington’s disease?

“Four days after John’s thirty-fifth birthday, the phone range about nine p.m.  My heart skipped a beat, as it had been doing whenever the phone rang.  It was someone from Mercy Hospital in Sacramento, asking in a cool, unemotional voice for John Marin, the brother of Lora Marin. John was just out of the bathroom, and my face must have been white as I handed him the phone.  ‘It’s Mercy Hospital, asking for Lora’s brother.’

He took the receiver, and it was a terrible thing to watch this strong, loving man wilt like a flower.  In a strange monotone, he said, ‘Thank you. Goodbye.’

I hadn’t realized that while John was on the phone, I’d been slowly backing away from him.  Now he was walking toward me like a robot, and I became even more frightened. My hands went over my ears to shut out the words he was going to say.  As my back hit the wall, his arms went around me like a shield. “Lora fell and hit her head.  She has a cerebral hemorrhage, and she’s in a coma.  She doesn’t have much time left.'”

I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance is an inspirational  love story while living in the shadow of HD.  100% of the proceeds are being donated to the nonprofit, HDSA. You can find it on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance

OR on my Author Website:  https://www.theresecrutchermarin.com

 

Grief

There Are No Rules for Grieving

Grief is as individual as you are. We are all unique, having had different life experiences that make us who we are.

So, I think it is safe to say, each of us will undergo a different grief experience.  There are no rules set in concrete regarding Grief.  In other words, there’s no certain way to grieve, or a certain time when you should be over it and no certain time to move on.

A few tips to help when you are grieving:

  1. Express yourself. Talking is often a good way to soothe painful emotions. …
  2. Allow yourself to feel sad. It’s a healthy part of the grieving process.
  3. Keep your routine up. …
  4. Sleep. …
  5. Eat healthily. …
  6. Avoid things that “numb” the pain, such as alcohol. …
  7. Go to counseling if it feels right for you

Articles on Grief:

http://www.mentalhealthamerica.net/conditions/coping-loss-bereavement-and-grief

https://www.nhpco.org/resources/grief-and-bereavement

Book on griefGriefland https://www.amazon.com/Griefland-Thomas-Nadelin/dp/1257060317

If you are interested in finding a local bereavement support group, look up a hospice program because they offer support groups you can attend free of charge in the community.

I grieved my three (3) sisters-in-law who died of complications from Huntington’s disease for many years.  It was not until I finished writing John & my story & publishing the nonfiction book, Watching Their Dance, did I feel like I had dealt with my grief and found peace.

We Can Never Lose HOPE….

              

Grief, The Marin Siblings

What is Survivor Guilt?

My husband, John, suffers from Survivor Guilt since he survived Huntington’s disease when his three sisters did not.  It’s not uncommon for guilt to arise in grief.

“On a basic level, survivor guilt is exactly what it sounds like: a sense of deep guilt that comes when one survives something.  If you have heard of survivor guilt before what likely comes to mind is survivors of wars, natural disasters or other traumas.  Survivor guilt was actually first documented and discussed after the Holocaust and what has become clear in the decades that have followed is that survivors’ guilt is far more common than was initially understood.”

Articles on survivor guilt

 https://whatsyourgrief.com/understanding-survivor-guilt/ 

https://www.psychologytoday.com/us/blog/how-be-yourself/201711/six-tips-handling-survivor-guilt

So when might one experience survivor guilt?

-After causing an accident in which others died
-Guilt for not being present at the time of an accident to potentially save the person who died
-When a child dies before a parent
-Death of a sibling, especially in the case of an illness

We Can Never Lose HOPE……

Author Therese Crutcher-Marin is donating 100% of the profits from her book to Huntington’s Disease Society of America.  https://www.amazon.com/-/e/B06ZY85776

 

Grief

Anger, a Natural Reaction to Grief

I have to admit anger started seeping out of my pores when Cindy became symptomatic.  She was the third sister-in-law to fall prey to this monster; Huntington’s disease.  When I started noticing symptoms, I was in denial and ignored it; I didn’t even talk to John about it, but soon it was hard to disregard. As she declined, my anger got worse; I just wanted to take a baseball bat to the monster and make it hurt like I hurt.  What is HD

For those experiencing this emotion, know, anger in itself is a natural reaction to grief and loss; it’s a normal part of grief.  If you are feeling this way, please seek help from a counselor and/or attend a Huntington’s disease support group. 

Article on Grief and Loss             Article on Anger in Bereavement  

Article-griefrecoverykit.com/    3-ways-to-work-through-the-anger-stage-of-grief/

The book, Griefland is written by a friend of mine, it’s a great book, and it’s available at  https://www.lulu.com/shop/search.ep?keyWords=griefland&type=

Unfortunately, Huntington’s disease causes many losses to a person with the disease; i.e., loss of independence, loss of being in control, loss of a job, etc. Watching a loved one decline may cause anger issues with the care partner/family.

I feel blessed that by writing my story, it was a healing journey, I was able to release the anger I harbored toward HD.

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  https://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the profits from the book is being donated to Huntington’s Disease Society of America (HDSA).

We Can Never Lose HOPE………….

                        May is Huntington’s Disease Awareness Month

#LetsTalkAboutHD  #HDAwarenessMonth

#HDSTRONG #HDSAFamily

 

 

 

 

Grief

Anticipatory & Complicated Grief

On April 14, 2008, my third sister-in-law, Cynthia Ann Marin, died of complications from Huntington’s disease.  The main cause of death was cachexia, the general ill health and malnutrition, marked by weakness and emaciation, usually associated with severe disease.  She was fifty-four years old and had fought Huntington’s disease for 17 years.

 what-is-hd/         what-is-hd/#stages       what-is-hd/#scope

For 24 years, John and I had lived with anticipatory grief in our lives; watching each of John’s sisters slowly die from the disease (1984 to 2008). Anticipatory grief refers to a grief reaction that occurs before an impending loss. Typically, the impending loss is a death of someone close due to illness but it can also be experienced by dying individuals themselves. Article on anticipatory grief:   https://whatsyourgrief.com/anticipatory-grief/  

After so many losses in our lives, John and I became lost in complicated grief after Cindy’s death. Complicated grief is acute grief and can become a chronic a chronic, heightened state of mourning. Needless to say, I was looking for a way to begin to heal from my heartache. Article on: The difference between complicated grief and normal grief  

Stay well my friends.  My next blog will continue with the topic of grief and how I dealt with it through the birth of my book, Watching Their Dance.

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  https://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from Therese’s book sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.

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