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Hospice, Huntington's Disease

Hospice, Palliative Care and HDSA Have Similar Goals For Patients

As a Huntington’s disease (HD) Advocate and retired hospice professional, explaining the following three types of care is important for the HD community to know about when caring for a loved one with the disease.  You can find these programs in your community.

The mission/goal of hospice care, palliative care and Huntington’s Disease Society of America have a common thread; a kindred objective that connects the three of them.

Hospice care focuses on the care, comfort, and quality of life of a person with a serious illness who is approaching the end of life.                   

Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family. 

The nonprofit, Huntington’s Disease Society of America, focuses on improving the lives of everyone affected by Huntington’s disease (HD) and their families. Find Help

So, what is the common thread with these three approaches to care?  All three concentrate on improving the quality of a person’s life when challenged with a life threatening illness; like Huntington’s.

We Can Never Lose HOPE..

I’m a Huntington’s disease (HD) advocate, President for the HDSA San Francisco Bay Area Chapter, a blogger and an author.  Visit my website  https://theresecrutchermarin.com 

 

March 8, 2023 by
Hospice

Hospice and Huntington’s Disease

Author Therese Crutcher-Marin, HD Advocate

November is National Hospice and Palliative Month   

Since I worked in hospice for the last ten (10) years of my career, each year I  like to promote it as the greatest gift you can give to your loved one and family when confronted with a terminal diagnosis.

Hospice is a special kind of care when all treatments have been exhausted for an individual with a terminal diagnosis.  Hospice provides comfort care, usually in a home, and the unit of care is the  family and patient.  A doctor referral is needed to open a patient to hospice services. 

Hospice programs also care for terminally ill patients in skilled nursing facilities, residential care facilities (RCFE) and assisted living facilities.  My two sisters-in-law, Marcia and Cindy, were in a RCFE, ten (10) years apart, and were cared for by my hospice program.  

When a person with Huntington’s disease (HD) enters end stage, hospice can bring comfort and relief: HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers at the same time.  There is no cure.

We Can Never Lose HOPE……

 

I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website and learn about HD:  https://theresecrutchermarin.com

 

 

 

 

November 16, 2021 by
Hospice, Love

My Journey’s End

Author Therese Crutcher-Marin

“My Journey’s End is a place to which someone or something is going or being sent.”

Throughout my life I’ve had several My Journey’s End;  the first was during college when the Marin siblings discovered they were at risk for Huntington’s Disease and I walked away from John because I was scared. After an epiphany, I was sent to John, the love of my life and my Journey’s End for love ended.

Another My Journey’s End occurred during my career in healthcare.  In 1991, our children were young and I was working part time managing the Lifeline program at our local hospital in Auburn.  I was looking for another part time position to become full time; my anxiety would lessen when I was working full time.  One day I ran into the Hospice Director and she asked me to consider the Hospice Support Services Manager position, a part time position. We had just moved Marcia, my sister-in-law with HD, to our town and I was managing her care.  I believe I was sent to Hospice, destined, to work and learn from the dying.  I see this as My Journey’s End as far as my career and was blessed to work in Hospice for the last ten years of my healthcare career.

Three years prior, Lora, John’s oldest sister, had died from bad fall and Cindy was showing symptoms of Huntington’s disease.  Both Marcia and Cindy were on my hospice program and died peacefully at a Residential Care Facility in Auburn.

We Can Never Lose HOPE……….

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a writer and blogger.  My website is: https://theresecrutchermarin.com

March 23, 2021 by
Caregiving, Hospice

November Is Hospice Month

Every November for the last ten (10) years of my healthcare career, was focused on promoting Hospice Care in Sutter Auburn Faith Hospice service area.  What is Hospice?

Since I became a volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA), I’m pleased Hospice care is talked about more openly to Huntington’s disease families.  Hospice care supports the patient and the family.

We live in a society that doesn’t like to discuss death, so I like to post information that can help families when confronted with a terminal disease diagnosis.  It’s good to know that Medicare & Medicaid have a hospice benefit.  Most private insurance have one also.  The Outreach Committee that I managed took advantage each November to promote hospice care, educate the community and visit doctors offices.  Patients can be admitted to hospice with a referral from a doctor who believes the patient has six months or less to live. Article:  When-is-it-time-to-contact-hospice

Article:  huntingtons patients would benefit from more hospice involvement researchers argue

To watch a video on Hospice Care, visit: https://youtu.be/sYG5VqRvPiU

Therese at the 2018 HDSA Annual Convention in LA.

I’m a Huntington’s disease advocate and a hospice advocate.  My two (2) sisters-in-law, Marcia and Cindy, who had Huntington’s disease, were on my hospice program and died peacefully with no pain.

You can read about my journey with Huntington’s disease and my hospice work on my author website: https://www.theresecrutchermarin.com

We Can Never Lose HOPE…….

November 6, 2019 by