Caregiving, Love

Late Stage Huntington’s Disease and Hospice

          May is Huntington’s Disease Awareness Month                           

In late stage Huntington’s Disease (HD), individuals require assistance in all activities of daily living; dressing, toileting, bathing, eating, walking and getting out of bed or a chair.  Although they are often nonverbal and bedridden in the end stages, it is important to note that people with HD seem to retain some comprehension.  41,000 American’s are symptomatic and approximately 200,000 live at risk of inheriting the mutated huntingtin gene that causes the disease.                                         

The last ten (10) years in my health care career, I worked in hospice at a small hospital in Auburn CA. Hospice care is a special kind of care that focuses on the quality of life for people and their caregivers who are experiencing an advanced, life-limiting illness.

My two (2) sisters-in-law, Marcia and Cindy were on my hospice program (10 years apart).  For the last four (4) years of their lives, they resided in a residential care facility in Auburn; the last two (2) years in bed needing total care.  They received wonderful care from the nurse who owned the facility and having hospice overseeing their care gave John and I so much comfort.

My advice to HD families caring for their loved one is to make it clear to the doctor that you want hospice care when appropriate. When the hospice program receives the referral from the doctor, they will make a visit and evaluate your loved one and admit him/her to hospice care.

Kaiser Hospice Santa Clara Ca

Stanford Medicine Hospice 

UCSF Medical Center

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:



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