By Jane Malkoff
Delilah Joanne spent the last 1,413 days of her life in a nursing facility in rural Indiana. Those who knew her throughout her life as well as the caregivers in the facility fondly called her “Jo” or “Jo Jo”. Jo was a wonderful person in every way but may not have always been the easiest facility resident to care for. She had Parkinson’s disease and required maximum assist for all mobility. She was also difficult to maneuver due to her weight which approached 240 pounds at the time of admission. Additionally, her cognitive ability was impaired due to Lewy Body dementia. While grateful to all the caregivers and sincerely interested in them, Jo made it very clear when they needed to behave properly and do better work.
For the last 1,413 days of Jo’s life, Jo had 1, 413 days of quality care. This is extremely rare in Indiana and especially so for someone in her condition. Her care was awesome in spite of the fact she experienced many typical nursing facility issues. For example, her mobility did not improve and her cognitive ability declined; she became incontinent, her medical care was typical mediocre nursing facility (the MD and the psychology team did not like their medication recommendations scrutinized by Jo’s family even though the family had valuable information about how the medicines had impacted Jo in the past); not all caregivers were fantastic; the food was not always good, and she became delusional as the disease progresses and at times would accuse others of things they did not do.
How was it then her care was awesome in spite of these typical problems? Jo’s care was 1,413 days of quality because this particular facility embraced family involvement/advocacy, set their goals much higher than state minimum standards, respected their employees, did not become defensive when questioned, did not think of Jo as a burden or the hard to handle person in room 108, they took accountability when need be and made necessary changes, had building leaders versus managers, treated residents like beloved family, treated the rooms like the resident’s homes, and didn’t settle for caregivers who did not pull their weight. That’s how!
CALL TO ACTION:
The time is now for ALL Indiana nursing facilities to step up to the plate of excellence and for all families to accept no less than 1,413 consecutive days of quality. To provide the likes of the quality care Jo received is not complicated. Indianapolis and surrounding counties have multiple facilities and none of them compare. Why? It isn’t a magic trick to embrace family involvement and advocacy, to set goals above and beyond minimum standards, to remain empathetic and non-defensive with families who need more information or support and understand that is why they may be upset, to take accountability for issues and make needed changes, to hire leaders vs managers, to treat residents with respect including the room they are in as truly their home, to treat Lewy Body dementia like a disease to support and not a plague, and to hold accountability to all staff. I am convinced, these items have nothing to do with Jo’s personality, her diagnoses, her family’s involvement, the rural setting, or any other factors. These items are achievable for any facility ownership and management who go about the business of getting the priorities straight. Jo was fortunate enough to be in such a building and as her daughter I will be forever grateful. Love you and miss you, mom.