Current Projects: Living Through Death

I've been working on this story since January 2011, documenting Ellen Goode's care of her terminally ill mother, Frances Livermore. On February 1, 2012, Frances passed away in Ellen's living room. I will continue to work on this story, as the tale of a caregiver is only half-told when the patient dies.

Ellen must now adjust to a life not dictated by round-the-clock care, sleepless nights and the absence of the aides and nurses who have helped her over the last year.

Read below for details on the story so far:

In lFebruary 2011, Ellen Goode, 43, moved her mother, Frances Livermore, 87, out of a nursing home and into her living room in Chicago. In the nursing homes, Ms. Livermore battled a MRSA infection, weight loss and chronic infections.

Suffering from paralysis due to Parkinson's and mini strokes, diabetes, glaucoma and diverticulitis of the bladder, among other ailments, Ms. Livermore's care requires 24-hour monitoring that is handled by Ms. Goode, three live-in aides and two sitters. Since moving in with her daughter, Ms. Livermore has gained 30 pounds, several infections have been treated successfully, and she is more alert.

Medicare covers many of the medical expenses, but Ms. Goode still pays an average of $1000 in out-of-pocket expenses each month to pay for the aides and necessities such as baby wipes and her mother's favorite food, potato chips.

While Ms. Goode is happy with the decision she has made, it did not come easily. She regularly fought for proper care for her mother in nursing homes, the relationship with her partner of 13 years ended, and she's lost contact with friends. She works 15-hour days caring for her mother, while trying to maintain a therapy practice.