Hospice patient takes note of living, not of dying
By: Jason Peck
02/22/2007

Denise Vogt strums her guitar and begins playing "Away in a Manger." The woman before her cannot stop crying.


Julia Adams, 83, sobs in sniffles, her hands to her face. She cannot speak; Lou Gehrig's Disease has robbed her of that ability.


Yet this day is a happy one. Surrounded by the hospice staff that cares for her and her daughter Janet, who watches over her, Adams scribbles a note on her pad for Vogt, her chaplain.

"Brings back memories," she writes.

Vogt gives her a Bible verse. "For unto us a child is born, unto us a son is given, and the government will be upon his shoulders, and his name shall be called Wonderful Counselor, Everlasting God."

Adams starts to cry again. Vogt's voice cracks as well.



Under attack

Adams fell ill two years ago. Her words started slurring. Doctors quickly diagnosed a stroke. But the problems kept getting worse, and the family grew more frightened. One time she lay awake for three days because of the phlegm in her throat.

Her husband Joe broke his hip around the same time, so the family moved the two from their home in Delaware to Culpeper to be closer to her daughter, June Brick.

The move also brought Adams closer to the University of Virginia, where doctors were finally able to tell her that she had Amyotrophic lateral sclerosis, better known as Lou Gehrig's Disease, the fatal neurodegenerative disease.

About 5 percent of people suffering from Lou Gehrig's, an illness still shrouded in mystery in the medical community, is inherited. The rest of the cases, like Adams', remain enigmas.

More specifically, she had Bulbar palsy, which attacks the mouth and head. By the time she learned the name of her disease, Adams could no longer swallow or speak, nor hold up her head.

The diagnosis was a death sentence. The disease is incurable, unstoppable. Her body would fail as her intact mind stood witness.

Before the onset of her sickness, Adams earned a degree from the University of Delaware. She read innumerable books and nudged all four of her children toward getting degrees.

She has her memories of growing up in a multi-cultural neighborhood ("like the United Nations," she writes), of hosting foreign exchange students, and of the Pillsbury National Bake-Off, where she scored a second-place victory.

Nevertheless, Adams' response to the diagnosis was optimistic. For her, nothing was worse than not knowing.

"Relief," she writes on her pad, about hearing the news. "It could have been so much worse."

But the diagnosis forced her out of the Baptist Retirement Home. Adams now requires a feeding tube, something the home could not accommodate.

She felt rejected, but a positive step was in store. About a two and a half months ago the family applied for help with the Hospice of the Rapidan, located in Culpeper.

A nurse arrived within 24 hours, along with anti-anxiety medications to help with the choking attacks.

"We have someone we can call so we're not watching Mom suffer," daughter Jill Devine said.



Outside looking in

Signing with Hospice of the Rapidan gave Adams a team of experts to help her through her last moments, including social workers, chaplains and medical experts well acquainted with her plight.

"That was one of the first things the girls told me," hospice nurse Nancy Fertig said of her arrival at the facility. "We don't fix things. We just have to take care of what's going on, and comfort them and help them to die with dignity."

"I think the first thing you have to do is face your own mortality," she said. "None of us is getting out of here alive. If you can face that, you can help other people face that."

It's been one year since Fertig began work with the hospice. Roughly 50 percent of its patients are from Fauquier County; additionally, its staff serves the residents of Orange, Madison, Culpeper and Rappahannock, where Fertig first heard of the facility. Her profession as a home health care provider led to an encounter with hospice workers. That, combined with the experience of taking care of her in-laws, was enough to make her change her career path.

Fertig has been caring for Adams since she first became her patient a few months ago, and arrives as often as three times a week.

Her only other experience with ALS came in her childhood, when a neighbor succumbed to the disease. But she's dealt with many diseases since, and found a much different world than the one she was used to.

As a hospice nurse, she feels that she becomes, at least for a while, another family member, one who sometimes visits more often than blood relations. But the connection with the family is sometimes cut when the patient dies. Filling that void is hard, she said.

"I think I look at every day as it could be the last," Fertig said. "I think I probably tell my family members I love them more, knowing we could go at any minute.

"You look at around, there's a lot of people who have it worse than you are," she said. "Until you've been through a situation like this, I don't think people realize how precious, how short life is."

A picture of the late Pope John Paul II sits on the countertop in Adams' Culpeper apartment, a fitting idol for the ordeals he faced at the end of his own life.

"Julia has the peace of God in her heart," said Vogt. "She's not worried or afraid."

Vogt, who used to work as a prison chaplain, is accustomed to high-pressure situations. Her visits to those receiving hospice care are comprised of simple songs and prayers, but the patients feel their powerful impact.

"Scripture tells us that we weep with those who weep," Vogt said. "Sometimes crying with a patient, and understanding and offering a compassionate heart makes a difference."



'Life's great!'

Adams had been more than healthy until this happened. Her daughter Jill remembers Adams' only previous hospital visits being for childbirth and volunteering. But the family has adapted, learning the basics of feeding tubes and blood pressure as they go along.

The sisters take turns caring for their mother. Daughters Jill and Janet are recently retired, which gives them opportunities to spend additional time with their dying parent. Adams spent Christmas at June's house.

Sometimes they have to suction Adams' throat every five minutes. Medicine smoked through a plastic pipe loosens the throat, as does a pressure vest so strong that the effect is comparable to punching fists.

Losing the ability to speak was hard. Before, Adams had a reputation as a talker. She jokes that she would rather have lost her ability to eat than speak. But she can still move about the house via walker, and has adapted to the limitations.

"We're blessed that it hasn't gone in to her limbs," Jill said. "A lot of ALS patients have no use of their hands or feet or anything."

Adams has caught the attention of staffers for her brave face in light of her ordeal. Caretakers often find her with a smile and a thumbs-up, even during the most painful parts of her day. The humor she maintains in the most serious of situations is still intact.

"We laugh a lot," Adams writes on her pad. "Life's great!"

Through it all, she takes comfort in what she has. She still has her family; her husband who visits every week from the Baptist Retirement home, her grandchildren home from college, and the children who care for her like she cared for them.

"Enjoy everyone who crosses your path, and look at the good," Adams writes. "Ignore the negatives."

E-mail the reporter: jpeck@timespapers.com