Now THIS is a touching story. Thoughts or comments? http://www.chicagotribune.com/health...,5437235.story
Eileen Hagarty can no longer walk or manipulate her right hand. Next year, her doctor says, she'll probably begin gasping for breath as paralysis climbs up her torso.
Hagarty, 60, has amyotrophic lateral sclerosis, a disease she dreaded above all others while working as a respiratory nurse at Edward Hines Jr. VA Hospital, just west of Chicago.
She knows full well the dimensions of this relentless condition, which will strip her of the ability to move, to swallow, to breathe, even to blink, while leaving her mind tortuously intact. She's also acutely aware her time is running out — her doctor says she might have only two to four years left to live.
Yet Hagarty has found a way to cope with the terror and despair that often seize her heart. As her physical state weakens, she is focusing her energy on leaving a legacy of love for her family.
For her daughter Rita, she bought a set of pots and pans, the kind of gift a mom wants to give a young woman who will be starting her own household. Rita, 24, now lives with her parents in Darien, working as a teacher's aide during the day and helping tend to her mother at night.
For son Patrick, Hagarty bought a series of video sermons, "The Be Happy Attitudes," that brought her substantial spiritual comfort several years ago. Patrick, 29, a financial analyst, doesn't talk easily about his feelings, but Hagarty knows that they run deep and that he hates seeing her suffer.
For her husband, Jon, 63, she has ordered a black T-shirt with white lettering reading: "Dear Jon, See you later, Love Eileen," for him to wear after her death.
"We have a thing in this family about saying goodbye. We don't do it," Hagarty said, smiling wryly while struggling to hold back tears.
"It's an amazing thing for someone to be in her situation to be thinking about other people, their needs, what may make their life easier," said Dr. Julie Rowin, Hagarty's physician and director of the ALS clinic at the University of Illinois at Chicago College of Medicine.
It doesn't stop there. Hagarty has set aside christening outfits — one for a boy, one for a girl — for the day when Rita and Patrick have children. Strollers, car seats and baby clothes are packed away. There's even a bumper sticker for her home health aide, Ofelia Undug: "World's Greatest CNA Caregiver."
"A very nice … a very organized person," is how Undug describes her patient.
Each family member, including Hagarty's beloved sister, Rita Risatti, will get a condolence card and a letter from Hagarty upon her death.
"I guess I'm a control freak," said Hagarty, who was diagnosed with ALS in February. "But this disease takes everything from you and there's not a darned thing you can do about it. I have to keep doing and planning or else I'll go crazy."
Hagarty has chosen the songs to be sung at her funeral, the comments for the program, the cemetery plot where she will be buried, the writing to be engraved on her tombstone. There are cards for Rita's and Patrick's weddings, the birth of their first child, the child's first birthday — all written before Hagarty lost use of the fingers in her right hand.
There are copies of M. Scott Peck's famous book "The Road Less Traveled," to be given to Rita and Patrick; a tape-recorded version of "'Twas the Night Before Christmas" for holidays to come; and a video testimonial made with help from Rainbow Hospice and Palliative Care, which has been caring for Hagarty at her home since late July.
Because ALS is so unpredictable and the condition is lethal, hospice services are appropriate, a Rainbow spokesman said.
Then there is Hagarty's diary, begun when she was struggling with despair over being diagnosed with a disease she considered more horrifying than any other.
"I was a person who loved her husband, daughter and son with all her heart and soul," it begins. Subsequent pages detail many joys — swinging in her backyard, lilacs and roses, Lincoln Town Cars, hayrides, Perry Mason, panda bears — and some regrets: "I did not pray enough."
"During my entire life, I was very frequently wrong when I thought that something would happen the exact way I thought it would happen," Hagarty wrote, confessing a streak of perfectionism.