“The only thing living is her physical body, the Nora I knew, and the brain of Nora is gone,” Bill Harris says.
Bill and Nora Harris met in 1975, they married 2 years later and spent decades seeing the world, and absorbing all the history and culture other countries had to offer. Bill describes Nora as the smartest woman he’s ever met, that’s why her diagnosis in 2009 of early-onset Alzheimer’s at the age of 56 came as such a blow.
“Early onset moves faster than regular diagnosis, late diagnosis,” Harris says, “and they estimate 4 to 10 years, and she’s about 7 years into it now.”
Soon after the diagnosis, Bill and Nora began making plans, moving to Oregon because of it’s more reasonable cost of care facilities, and filling out an advance directive outlining her medical wishes. She and Bill thought it was clear.
“The advance directive was let’s not do anything to prolong this process,” Harris explains, “no artificial feeding, no tubes, no parental feeding, and we took parental feeding to mean like a parent and a 2 year old.”
In 2013, Nora was placed in the memory care facility at Fern Gardens, she eventually stopped eating, and lost weight, to the point where she was placed in hospice care. Eventually a state ombudsman stepped in, saying the facility was required under state law to provide feeding assistance including supervision and use of proper utensil and assistive devices, in other words, spoon-feeding. Bill took the case to court this summer, the judge ruled in favor of the state law.
A licensed attorney and expert witness on the case says the advance directive was broad in Bill’s authority as health care representative, but specific in that she didn’t want to prolong life.
“They basically sentenced her to experience the full gamut of Alzheimer’s,” Harris says in regards to the facility feeding her, “they have not allowed her to gracefully end this process.”
Bill could appeal but the process would be costly, and if Nora passed during the appeals process the case would end. So now, they want to make sure this doesn’t happen to someone else.
Experts recommend that on the advance directive they attach additional documents that outline your wishes in as much detail as possible. They say recording a video of your wishes is just one more way to make sure they are fulfilled.
Because of the court ruling, Nora will continue to be spoon-fed until she refuses to eat.