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.
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.
“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.
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