I haven’t written about Hospice care for awhile, so I thought I’d post this article on the benefits of palliative and hospice care, at the end of life, which applies to everyone, because none of us get out of this alive.
The last 10 years of my career in healthcare was in hospice care and it was the most fulfilling work I have ever done in my life. It was privilege to be allowed into community folks homes to support the patient and family as they prepare for the inevitable loss of their loved one. For info on Hospice care, go to: https://www.nhpco.org/
People ask me, “Why do you donate your time to help in the fight against Huntington’s disease (HD) when it will not ever affect your family again?”
Yes, John dodged the Huntington’s disease bullet, he didn’t inherit the mutated huntingtin gene like his three (3) sisters and mother and for that we are so grateful. http://hdsa.org/what-is-hd/#risk
I do it because I don’t want anyone to feel alone like John and I did when Lora, Marcia and Cindy were struggling with the disease process. In the 80″ & 90″s support groups were non existent and there were very few neurologists knowledgeable about HD.
Today, there is so much support, information, and neurologists available to families so I spend much of my time on social media getting the word out. Facebook has HD support groups you join and there are many online support groups facilitated by social workers. http://hdsa.org/osg/http://www.hdscn.org/ https://help4hd.org/
In January of 1988, after Vanessa was born, John and I decided that I wouldn’t return to work and stay home for a couple of years while the kids were young. John was making good money at Placer County, and we had money in our savings account, so I was comfortable living on one paycheck. A Walkthrough Guide to Panic Disorder
At the time, I had two sisters-in-law, who lived locally, challenged by Huntington’s Disease (HD); Lora, severely depressed and drinking herself to death and Marcia, officially diagnosed at UC SF Medical Center two years earlier. What is HD A few months after I resigned from my management job in Sacramento, I began having panic attacks. John’s unknown gene status weighed heavily on my mind. A Walkthrough Guide to Panic Disorder
To ease my anxiety, I decided to pursue a Masters degree in Healthcare Administration. Additional education, I felt, made me more marketable, and would replace time lost in the workforce. I believe knowledge is power and as I studied I became confident that I would secure a job at our community hospital in Auburn, CA which I did in 1991.
The Sacramento Team HOPE Walk is Sat., Sept. 8, at the River Walk Park in Sacramento. To register or make a donation to the event, go to:http://www.hdsa.org/THWSacramento
“A typical day for Natalya Gonzalez involves far more responsibilities and challenges than those of an average sixth-grader. The Yolo Middle School student balances schoolwork with family responsibilities as she pitches in at home to help her mother care for her father and an older sister, who both suffer from Huntington’s Disease, a debilitating genetic disorder.” Full article: Yolo Student Thrives Despite Challenges
The Huntington’s Disease Society of America Northern California Chapter is organizing a Sacramento TeamHOPE Walk to help families, like the Gonzalez’s. Come out and walk on Saturday, Sept. 8th, at the River Walk Park in West Sacramento. To sign up or donate to the event, go to http://www.hdsa.org/THWSacramento
My family is everything to me and when I think back to how I almost didn’t have John, his three sisters, Keith, and Vanessa, in my life, I get goose bumps. My three sisters-in-law were a huge part of John and my life and after losing Cindy, the third sister to die from complications of Huntington’s disease (HD), I was looking for something good that could come out of my family’s tragedy.
That’s when I started writing John and my inspirational love story, Watching Their Dance, while living in the shadow of Huntington’s disease. The book honors Lora, Marcia and Cindy while heightening HD awareness and generating dollars to help in the fight against the cruelest disease on the plant.
“Behind every exquisite thing that existed, there was something tragic.” ~Oscar Wilde
In the following video are the faces of Huntington’s disease (HD); a devil of a disease that attacks adults and children. Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It’s like having ALS, Parkinson’s and Alzheimers at the same time. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. http://hdsa.org/what-is-hd/
Ten years ago this month, John and I lost the last two members of his immediate family. His father, I called him Big John, passed away from bladder and colon cancer at age 86. Cindy, my third sister-in-law would succumb four weeks later, to the monster I grew to despise, Huntington’s disease, at age 54.
Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. http://www.hdsa.org
It was a difficult time for us, to say the least, and the twenty-four years of anticipatory grief had taken its toll. John and I had each other, that was so important, and we slowly regained our strength. It was shortly these losses that I began searching for something good that could come out of my family’s tragedy. I found it in my story.
I received this brochure in the mail from Huntington’s Disease Society of America (HDSA) the other day to register for this years National Convention in Los Angeles and I thought I’d share it. (See below to print a copy) I will be attending as a Board Member of the Northern California Chapter and I will also be selling my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. http://hdsa.org/about-hdsa/annual-convention/
Many of you know I’m involved in the Huntington’s disease community and a board member on the HDSA Northern California Chapter. Until I published my book, Watching Their Dance, I was unable to speak about John and my life at-risk for the cruelest disease because of the grief I carried in my soul. Writing my story was a healing journey which allowed me to place the grief in a book and show the world what Huntington’s disease families go through for generations. http://www.hdsa.org
The following are reasons why I wrote the book and outcomes since I published April 2017.
The book is a personal HD fundraiser/HD awareness project and 100% of the proceeds from books sold in the U.S. are being donated to Huntington’s Disease Society of America (HDSA) to help in the fight against this horrific disease that killed my mother-in-law and 3 sisters-in-law. By heightening awareness, I hope to increase donations from folks who have never donated to our cause.
It’s an inspirational love story, over 38 years, and how John and I lived in the shadow of Huntington’s disease. Since April 2017, I’ve sold 1,500 books/ebooks and my goal is 5,000. My book can be found on my Author Website: www.theresecrutchermarin.com, Amazon, B&N and other book websites. $7.00 is donated to HDSA each time the book is purchased.
John and I donated $9,015.00 to HDSA in December 2017 which was the profit from books sold since I published in April 2017.
During the holiday season, I reminisce about Christmas past, usually as I lay in bed before I go to sleep. As I drift off into slumberland, I dream about Christmas’s when I was young and when our children, Keith and Vanessa, were growing up.
My parents, Jim and Rita, always made our Christmas special, and we have many movies of my three sisters and I in curlers approaching the tree on Christmas morning squinting and shading our eyes from the blaring lights. My mom is holding me on her lap in 1955, my first Christmas, and the other picture is of my older sister, Ellen, and I under the tree in 1956.
The picture below is of all the cousins on Christmas Day at my Aunt Mary and Uncle Bill’s home in 1964.
John and I wish you a Merry Christmas with family and friends. Peace on Earth, Goodwill to all Men.