[BobbyB]

Julia Adams takes note of living, not dying
By: Jason Peck
01/03/2007


Denise Vogt strums her guitar and begins playing "Away in a Manger", a song for the Christmas holiday. And the woman in front of 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. Within a few months the disease for which there is no cure will ... no. Not today.

Today is a happy one. Surrounded by the hospice staff that cares for her and her daughter Janet, who watches over her. Julia writes her response on her notepad for the chaplain.


"Brings back memories," she writes.

Vogt gives her a Bible verse to coincide with the holidays.

"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."

Julia starts crying again, but Vogt's voice cracks as well.

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Julia first fell sick 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 Julia lay awake for three days due to the phlegm in her throat.

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

The move also brought her to the the University of Virginia, where doctors finally handed her the proper diagnosis. Julia had Amyotrophic lateral sclerosis, better known as Lou Gehrig's Disease, the fatal neurodegenerative disease.

The disease is cruel, and still shrouded in mystery. About five percent of the disease is inherited. The rest - like Julia - remain enigmas.

More specifically, she had Bulbar palsy, which attacks the mouth and head. By then Julia could no longer swallow or speak, and could not hold her head up.

The diagnosis was a death sentence. The disease in incurable, unstoppable. Her body would fail, but cruelly, the mind would remain intact.

Julia's mind helped her toward earning a degree from the University of Delaware, where she actually sat next to her future daughter-in-law. It read innumerable books, nudged all four of her children toward getting degrees, and is often accustomed to being the sharpest in the room.

She'll go down with her memories: of growing up in a multi-cultural neighborhood ("like the United Nations" she writes), of foreign exchange students hosted in her home and the Pillsbury National Bake-Off, where she scored a second-place victory.

Nevertheless, Julia's response 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. By now she needed a feeding tube, something the home could not accommodate. She felt rejected, but a positive step was in store. About a month ago the family applied for help with the Hospice of the Rapidan, located in Culpeper.

A nurse came 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.

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Signing with Hospice of the Rapidan gave Julia 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. "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. None of us is getting out of here alive. If you can face that, you can help other people face that."

Fertig has been with hospice for only one year. She previously worked in Rappahannock doing home health care when she encountered hospice workers. The experience was enough to make her change her career path, when combined with the experience of taking care of her in-laws.

She has been caring for Julia since she became her patient about a month and a half 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 becomes - at least for awhile - another family member, 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 says.

"I think I look at every day as it could be the last," Fertig said. "I think I probably tell me 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.

Until you've been through a situation like this, I don't think people realize how precious, how short life is."

Vogt previously worked as a prison chaplain, and is accustomed to high-pressure situations. Her visits are 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 hearts makes a difference."

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

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

Julia had been more than healthy until this happened. Her daughter Jill remembers Julia's only hospital visits as being due to childbirth and to volunteer. 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 the opportunity that many parents don't have. Julia spent Christmas at June's house.

Sometimes they suction Julia's throat every five minutes. Medicine smoked through a plastic pipe loosens the throat, as does a vest that applies pressure similar to fists hitting her.

Losing the ability to speak was hard. Before she was known as a talker, and jokes that she would rather have lost her ability to eat than speak. But she can still move about the house via a 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."

Julia 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 maintained in the most serious of situations remains intact.

"We laugh a lot," Julia 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 homes from college, ans the children who care for her like she cared for them.

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


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