I Hope This Doesn’t Happen To Your Mother on Her Last Day
Advance Care Directives Are Necessary but Not Enough.
My brother Pat texted me early the day before my mom died in 2017.
The memory care nurse called and said Mom was having difficulty breathing. It doesn’t look good.
Rebecca and I jumped in the car for the three-hour drive from Decorah to Davenport, Iowa. Pat’s text was not a surprise as Dody Gardner was 96. She had been in this memory care facility for two years.
Our mother had been a force of nature who loved coffee, chocolate ice cream, and her three sons. And our father, Paul Sr., who died in 1993.
For about three years, she had slowly forgotten all of this. In 2015, when she wandered around the neighborhood outside the house she had lived in for sixty years, Pat reluctantly admitted her to a nursing home.
Several weeks before she died, we had eaten lunch with her in the memory care unit cafeteria. Lenny, who thought Mom was his wife, sat across from her.
I watched as her coffee cooled and chocolate ice cream melted, and the spoon sat untouched next to a plate with meat cut into little bites by someone else. I thought about the last few times she had visited Decorah and how I had fixed her coffee in the evening after we returned from Culvers, her favorite Decorah restaurant. Coffee never affected her sleep.
My mother had slipped away.
Dementia stole her memories. Now, her lungs were failing like the timber under our front porch. The death certificate would read COPD.
About an hour into our journey to Davenport, Pat sent another text.
They’ve taken her to Genesis Medical Center. I’ll meet you there. They’ve screwed up.
Genesis was one block from Mom’s girlhood home and two from St. Paul, her Catholic Parish. But she wasn’t supposed to go to a hospital — Pat, Mom’s healthcare proxy, gave the nursing home a Do Not Resuscitate order form when she was admitted. This is a Medical Order signed by her doctor stating that there should be no CPR or other life-supporting measures if Mom’s heart or breathing stops.
Instead of turning Dody’s room into hospice care, as they should have, the nursing home staff ordered an ambulance. They had screwed up.
When Rebecca and I walked into Mom’s hospital room, she was lying on the bed, eyes closed, hands motionless, shallow breathing, and hospital pallor. Pat was sitting on a chair, angry and discouraged.
Mom was on the Cardiac Care floor. When Pat arrived two hours earlier, our mother was hooked up to several machines, and a doctor and nurse had begun treatment. Fortunately, he had brought a copy of the DNR order and showed it to the doctor.
Pat’s the youngest, probably mom’s favorite, and, because he was the only son who lived in Mom’s town, had shouldered the burden of managing our forceful mother in her declining years. He was her advocate and made it clear to the health professionals that life-saving treatment should stop now.
Like mother, like son.
Arrangements had been made to transport Mom by ambulance to a hospice facility, where she died 24 hours after her first ambulance ride of the day.
The National Institute on Aging has a phenomenal Advanced Care Planning guide here. It includes everything you need about Advanced Care and links to state-by-state forms.
But forms are not enough. I have two friends: a retired nursing Home Administrator and a long-time Nurse Practitioner with years of nursing home experience. Bruce, the administrator, told me his homes always had a file with DNR forms in a prominent place at the nurse’s station. However, frequent staff turnover meant a particular nurse in an emergency might not know about the medical orders for a specific resident.
Michelle, the nurse practitioner, suggested placing all medical orders in an easy-to-see folder outside each resident’s room where they can’t be missed by emergency medical personnel.
Pat and I have talked about what we would do differently. We assumed the nursing facility staff would carry out the DNR order and turn mom’s room into a hospice. And not call for an ambulance in a health emergency.
We did not know about a Do Not Hospitalize order described on the National Institute of Aging site. So, we would have included that directive. However, health orders are only helpful if they are known during the emergency.
More importantly, we would have been the squeaky wheels on our routine visits, ensuring the staff knew about our decisions as we passed by the nursing station.
As advocates for our mother.
Dody Gardner had a miserable last day: two bumpy ambulance rides and stretcher journeys through strange hallways.
When we walked into her hospice room, the nurse was applying morphine between her front teeth and her left cheek. This would eventually calm her breathing. Pat was sitting in a chair, drained.
Rebecca urged me forward. Even at 68, sons are hopeless. I leaned over, touched her clasped hands, and kissed that cheek. I thought I heard her say, Paul.
She deserved a better last day.
