Dr. Arthur Kleinman, professor of medical anthropology and psychiatry at Harvard Medical School, is the author of the article:
“Treating Disease Is No Substitute for Caring for the Ill“.
“The American health-care system focuses overwhelmingly on curing acute problems. It needs to do far more to provide ongoing support for patients with chronic maladies.
The U.S., in effect, has two health systems. One addresses disease, the science of what makes us sick; the other addresses illness, the human experience of being sick. Disease demands treatment, while illness calls out for care.”
40-50 millions of Americans act as family caregivers. Included in those millions are caregivers for a loved one with Huntington’s disease (HD). HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time. There is NO CURE. More on Huntington’s disease-hdsa.org
Custodial Care, a non-medical care that helps individuals with their daily basic care, such as eating and bathing. Custodial care for an individual is generally recommended by authorized medical personnel, but providers of custodial care are not required to be medical professionals.
Custodial care at home is typically covered only under long-term care (LTC) insurance, not by Medicaid, even though home care is cheaper than a nursing facility.
Unfortunately, for HD families, insurance doesn’t pay for custodial care, unless they have LTC, so family members provide the care for their loved one. HD patients can live up to 20 years with the disease and need custodial care for years. I for one can vouch for this as my two (2) sisters-in-law each struggled with HD for 17 years. Luckily, my family was able to pay for private caregivers but not everyone can do this.
We Can Never Lose HOPE………..
Visit my author page and read about my HD journey. https://theresecrutchermarin.com
More on Dr. Kleinman: https://en.wikipedia.org/wiki/Arthur_Kleinman