Stories

Courtney Shahan Roman from Washington, D.C.

"There’s no manual for this. There’s no guidebook. There’s no way you can prepare."

Last November, Ann — a retired government worker in Delaware who cares for two parents with Alzheimer’s disease — decided to take a few days off from her demanding caregiving responsibilities to take a short vacation at her second home in Arizona.

But Ann’s trip was cut short when she learned that her father only had two weeks to live. Two days after she had arrived in Arizona, she boarded a return flight home and headed directly to the nursing home where her father, Swerre, 92, was living.

But Ann soon found out that the death notice was a false alarm. She was of course relieved to hear that her father was not in immediate danger of dying, but disappointed that she had had to cancel her vacation for no reason at all.

As Ann’s daughter, Courtney, tells it, the story began when Swerre broke a denture last fall. One of his nurses removed the denture because it was causing him pain, and made a note about it on his medical chart. But a different nurse did not read the note in his chart and put the denture back in. Swerre was in pain and did not want to eat, but because he had dementia he could not explain this to his health providers. A covering doctor who had never treated Swerre arrived on the scene, sent him to hospice and told a nurse to alert family members that he was not eating and would probably die within two weeks.

"My mom was beside herself," Courtney recalls. "To us, this was it."

But it turns out, death was not imminent. Swerre’s regular nurse arrived the next day and was surprised to find that his denture had been put back in his mouth. She removed the denture again, Swerre’s pain eased, he resumed eating, and his energy returned.

The crisis was averted, but Ann still hasn’t recovered. She didn’t feel comfortable leaving town before the incident, and now she’s even more reluctant to take a vacation. Ann has a brother and sister-in-law who live nearby, but she is the one who takes most of the responsibility for caring for their parents. For years, she did their grocery shopping, filled their prescriptions, took her parents back and forth to medical appointments with multiple doctors, and prepared hot meals for them nearly every day.

Many of those duties were lifted when her parents moved into assisted-living facilities a few years ago, but Ann still spends much of her time making sure they are well cared for in their new homes and worrying that they are not. Her life would be better, Courtney says, if her parents’ health providers communicated with each other and with her more.

The whole family, for example, would have benefited from a discussion with Swerre’s health care providers about his strange behavior after he suffered a seizure. Ann’s brother observed that Swerre had lost a lot of energy — he was like a zombie, she says — and made a point to ask his doctor if his medication could be halved. It was, and Swerre’s mood and energy level improved immediately. Courtney wonders if Swerre would still be overmedicated if her uncle had never raised the issue with Swerre’s doctors.

"They just sent my Grandpa off without letting us know that this anti-seizure medication could cause lethargy," she says. "They never said, ‘Let’s talk about how this drug is working.’ The doctors left it up to my mom and my uncle to figure it out."

Ann, meanwhile, could have benefited from information about community resources that support patients and their caregivers. But none of her parents’ doctors, nurses or aides took the time to tell her about services in the community that offer help, Courtney says.

"There’s no manual for this. There’s no guidebook. There’s no way you can prepare. But health providers could tell families about the resources that are available to make the hard work of caregiving a little bit easier on the patient and the family," Courtney says.

For Ann, caring for her parents has been physically exhausting and emotionally draining. But there has been a silver lining in the experience. She has become even closer to her daughter, Courtney, as the two have worked together to care for Swerre and his wife, Marion. Courtney even spent a year at home after she graduated from college to help her mom care for Swerre and Marion during an especially difficult time.

The movement for reform has gained a new champion as well. After spending the year at home with her mother, Courtney decided to devote her career to reforming the health care system and supporting patients and their caregivers. She enrolled in a graduate program in sociology and wrote her master’s thesis on support groups for patients and families with Alzheimer’s disease. She now works on the Campaign for Better Care for the National Partnership for Women & Families. "I’ve found my true calling," she says.

In Loving Memory of Swerre E. Eliassen, 1918-2010