Sometimes, in the wings of life?s final act, are those who help the dying exit the stage with a bit more ease.
Last February, Ellen Goode moved her mother, Frances Livermore, from her nursing home in Niles into Goode?s living room in Rogers Park. Mini-strokes and Parkinson?s disease had left Livermore paralyzed and bedridden. Her ailments, which included glaucoma and chronic infections, required two hands to tally.
Surely she could give her mother better care, Goode thought. After seeing what she had gone through during her three years in nursing homes?constant dehydration, skin lesions?she knew if she became the primary caregiver it would be her mother?s best option for a longer life and a more peaceful death.
?There were things I didn?t need to make a decision about. They were just what I had to do,? said Goode, 43. So she joined the 25 percent of U.S. households that provide care to older family members and friends, according to the Illinois Department of Aging.
But Goode soon began to worry that lengthening her mother?s life by becoming her caregiver was not what Livermore wanted.
A few weeks after bringing her mother home, Goode leaned in close to her and asked, ?Mom, do you want to die??
?No,? Livermore replied.
?Why?? Goode said.
?Because I like life,? her mother replied.
?Why? Because of potato chips, Elmer, chocolate drinks?? she said, referring to her mother?s favorite foods and her favorite caregiving aide, Elmer.
?Any other reasons?? Goode pressed.
?That?s enough,? Livermore replied.
And so Goode carried on. She followed the seven-times-daily medication schedule, changed the diapers, and administered the herbs, supplements, and ointments. She juggled the five part-time health aides who came around the clock. She paid up to $1,000 a month to cover the costs that Medicare and Social Security did not, putting her more more than $8,000 in debt.
Livermore?s doctors say Goode?s care extended her mother?s life by a year or more.
But it cost her more than money and time. Goode had to put aside her own life. She tried not to focus on what she had lost or given up while caring for her mother: her partner of 13 years, sleep, making music, taking her motorboat out on the lake, as well as a significant portion of her work as a psychotherapist and addictions counselor.
Even her health was put on the back burner. She was getting sick more often and never felt rested. ?I had stress exhaustion, I was overwhelmed,? Goode said.
Last Christmas Eve, Goode spoke to her mother candidly. ?I can?t do this for much longer because I am broken,? she said. ?Somewhere here you have to let me go.?
A few days before the end of January, Livermore, 88, slipped into a coma. Her breathing was slow, each breath seemingly farther from the last. Her mother?s face, with a faint smile, pointed toward the ceiling.
?Have fun up there,? Goode said to her. ?Wherever you?re going, it looks really good.?
?Maybe it?s got chestnuts wrapped in bacon. She loved those,? said Cynthia Orszula, Livermore?s other daughter and Goode?s sister, who had driven in from Bristol, Wis. to be at her bedside.
?And deviled eggs,? Goode added, laughing.
On Jan. 31, nearly a year after her daughter brought her home, Livermore died. Before her body was picked up, Goode combed her silver hair.
?She heard me,? Goode said, recalling their conversation on Christmas Eve. ?Her final act of loving me was letting me go.?
Where Goode goes from here, putting the pieces of her life back together, is in some ways more uncharted than navigating her mother?s death.
For a few days after Livermore?s death, Goode still slept in the living room on the couch she had converted to a bed to be closer to her mother.
Gradually, she began spending more of the night in her own bed. But weeks later the medication lists were still posted. Everything Livermore needed was on hand: the ointments, baby wipes, pillboxes. On her mother?s empty bed, among stuffed animals, oxygen tubes and fleece blankets was a white cardboard box?Livermore?s ashes. Much and nothing had changed.
Goode began sorting though cupboards and reorganizing what had become less her home and more a hospital ward. She came across her mother?s glass mixing bowls. Tears welled up as she ran her hands over them. ?All these things become so much more precious,? she said.
Leaning against the counter, she stopped sorting and looked down at the floor.
?Every step, it?s like, there is this feeling right here.? She pointed to her heart. ?This has changed me forever and what is it for me now? Where does it need to go? What do I do with it??
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