When Mary Ellen Geist quit her high-profile job as a radio show anchor in New York City to move back into her childhood home and care for her father with Alzheimer's, she learned as much about caregiving as she did about the fatal brain disease.
"As a journalist I had covered the death of Princess Diana, the O.J. Simpson trial, the occupation in Haiti, fires, earthquakes and major stories," she said. "Then my boss at the radio station asked if I would write blog posts for the 'Sandwich Generation' about taking care of my Dad. I thought it would be very private journal entries, but the response was overwhelming and crashed my computer."
What she had stumbled into was the world of 50 million caregivers across the country. "It was humbling," she said. "There is almost a kind of shame involved [in caregiving], and I think all caregivers should be absolutely proud of it. I am proud of it."
At age 49, Ms. Geist found herself the "designated daughter" of three sisters: The only one without a spouse or children to care for at home. She put her personal possessions in storage, quit her job as the afternoon anchor at WCBS Radio in New York and moved into her old bedroom in her parents' home in northern Michigan for the next five years. Her mother, Rosemary, was becoming too exhausted to care for her husband alone.
"Frankly, I didn't expect my Dad to live that long," she said. Reflecting on it today she describes the years with her ill father as lovely and "a gift," and says she found more patience and love within herself than she knew she had. Her blog posts -- written in the middle of the night when she could be alone -- eventually became a book, "Measure of the Heart: A Father's Alzheimer's, A Daughter's Return" (Springboard Press, 2008).
In the book, Ms. Geist gently takes the reader through returning home, the ups and downs of living night and day with her ailing father, Woody Geist, and sharing the exhausting workload with her mother. Early in the book, she shares the heartbreaking moment of her father not recognizing her, and how he begins to merely call her "daughter."
In a later chapter, she discusses doing household chores with her father. One cannot help but smile at the absurdity of it as Ms. Geist relates how her mother once found her father trying to put on a t-shirt like a pair of pants, how she found the garbage can mysteriously in the shower stall and other seemingly harmless, but exasperating, realities of living with someone with Alzheimer's.
A recent "Homewatch CareGivers" article provides tips and insights for how individuals can cope with an Alzheimer's diagnosis of their own or of a loved one.
Somehow Ms. Geist manages to explain the realities of caregiving for someone with Alzheimer's with a bit of humor. It is laugh-out-loud funny when she tells the story of getting her father out the door one day -- how excruciatingly long it seems to take her father to eat his breakfast cereal (half an hour), how confused he was by shaving, how she rudely shouts at him to put on his shoes, how annoying it is to have him ask over and over again where they are going -- only to find that she completely forgot she was still in her pajamas as they are ready to step out the door.
This is a rather charming way of illustrating the stress that caregivers live with. Ms. Geist found that caregivers will often neglect themselves. "My own mother had pneumonia, and did not want to go to the hospital," she said. "Caregivers have to take care of themselves." She cites one study that found 62 percent of caregivers become so ill with stress that they die before the person they are caring for dies. Ms. Geist advises caregivers to not neglect themselves, and to not let the "losses" of caring for someone with Alzheimer's be a detriment to one's self-esteem.
"Each day of caring for someone with Alzheimer's is a challenge," she writes in her book. "Each day is like hiking up a big mountain and never, ever getting to the top. When you get near the top of the mountain, you call back down and have to start over again. You feel like a failure often."
Since writing the book, Ms. Geist has gone on the lecture circuit to speak about Alzheimer's and caregiving, and the benefits of music for people with Alzheimer's. (Mr. Geist was able to sing with his singing group throughout his battle with Alzheimer's, and Ms. Geist found that music and singing with her father helped his mood and ability to function each day.)
The experience of moving home to be a co-caregiver to her father until his death at age 83 completely altered the life of Mary Ellen Geist. She recently moved to Chicago and resumed her career in radio. "I didn't want to leave the life I had," she said of living with her parents in her childhood home. "We become addicted to our role as caregivers. I liked the person I became taking care of my father. I don't get so upset over things anymore, and I'm much more patient. I hope I can apply those lessons to my new life."