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Beth Ann Lipskin had a steady stream of friends supporting her in her final days. Bennae Pastor-Clark, left, and Marilyn Conn visited her at Pikes Peak Hospice on her 55th birthday, three days before she died.


Finding light in the shadow of death

Headstrong woman endured pain, loss of independence as she fought to raise awareness about Lou Gehrig’s disease
By CAROL McGRAW
THE GAZETTE
February 3, 2008 - 7:35AM


The bench in the hallway of Temple Beit Torah is empty. Beth Ann Lipskin used to sit there, visiting with friends after services when she could no longer make it down the stairs to the social hall.

The last time she was here — in July — she had been honored by the temple’s congregation for her many local charitable works, including leadership of the temple board. Months later, the congregation and others gathered for her memorial service.

“Beth Ann exemplified Tzedakah,” said Bennae Pastor-Clark, a longtime friend, to those gathered. Tzedakah is the highest ideal of Judaism — living a life that matters.

Her dying days were also an exercise in Tzedakah.

Lipskin died Nov. 20 — three days after her 55th birthday — at Pikes Peak Hospice. Some might say she lost the battle against amyotrophic lateral sclerosis, commonly known as Lou Gehrig’s disease. But Lipskin — who in her final weeks was unable to speak, chew, swallow or move anything but her left arm and a couple of fingers — made it clear that she had won. She died her way — stubbornly refusing feeding tubes, ventilators and most other medical niceties that would have prolonged her life.

She made her dying days an open book — telling her story to The Gazette to underline the travails that the 55,000 ALS patients nationwide and their caregivers endure.

The final chapter of Lipskin’s life was not focused on her agonizing death but the love and acts of caring shown by friends, the women of Temple Beit Torah, and strangers.

It was, as Noah benShea, philosopher and national laureate of The ALS Association, says, “a triumph of spirit over the shadows.”

While Lipskin was in law school, her mother died at age 50 after a 13-month battle with ALS. In 10 percent of cases, ALS is passed from parent to offspring. In fall 2006 Lipskin began to stumble and struggle with small tasks such as opening a water bottle. On Nov. 17, 2006 — her birthday — she got the bad news from her doctor. “There is no good day to know this,” he told her.

Last summer the disease progressed, and Lipskin became a prisoner in her apartment. She couldn’t drive her car, her energetic gait slowed to a shuffle. She had trouble combing her hair, brushing her teeth, dressing, lifting herself out of bed, swallowing, chewing.

Marilyn Conn, a friend and temple administrator, says, “It’s a horrible, mean disease. No treatment, no cure, no hope.”

ALS attacks nerve endings and pathways in the brain and spinal cord, slowly causing death of cells, leading to paralysis. There is no known cause or cure. More than 55,000 people in the United States at any time have ALS. But the numbers don’t reflect how widespread it really is because most die fairly quickly.

There’s only one medication widely used to fight ALS, Rilutek, which is thought to prolong life up to six months. Pharmaceutical companies focus on diseases that are more widespread, says benShea, whose father died of ALS.

“It would be foolish to think that economics is not involved in research. But I can assure you that as soon as one drug manufacturer’s sister or mother gets it, they won’t need 5 million patients to make it a focus. It only has to play out in your life once. It overwhelms you.”

ALS is in some ways the opposite of Alzheimer’s disease, which attacks a person’s memory. “One of the worst aspects of ALS is that you are trapped in your body. Your mind is there, but you are not able to move, to communicate,” says Leslie Ryan, patient services director for the Rocky Mountain Chapter of The ALS Association.

The disease was frustrating for Lipskin, who had been so fiercely independent and outspoken. Her professional life had included worldwide travel as director of the American Academy of Forensic Sciences, a professional society dedicated to science and law, and the Space Foundation, an advocacy group that trains teachers.

As her symptoms worsened, friends helped her get to her charity board meetings. She had been active in Partners in Housing, Pikes Peak Hospice, Junior League of Colorado and many other endeavors.

She especially was drawn to raising funds for the hospice — after seeing her mother die at home of ALS and her father’s exhaustion from caring for her. “At the time, I thought there had to be a better way to go through this for everyone,” she said.

In July, Lipskin agreed to move to a hospice in Pennsylvania to be closer to family.

But within days of arriving, her sister had to have life-saving surgery, and there were complications. Lipskin found herself immobile and alone, at a facility where the caregivers “were friendly, but not prepared for an ALS patient,” she said.
She sent e-mails to friends: “I want to come home.”

Ken Field, a friend for 30 years, found an assisted-care center in Colorado Springs that would take an ALS patient.

It can cost more than $200,000 a year to care for a patient in the late stages of ALS, Ryan said.

Lipskin, who had worked mostly for nonprofit agencies, didn’t have that kind of money. But there was help. Most people with disabilities have to wait two years to receive Medicare. But Congress in 2001 eliminated that waiting period for ALS patients. They can get the insurance as soon as they get Social Security Disability Income.

“People were dying before they could get benefits. That’s the nature of the disease,” said Pat Wildman, director of public policy for The ALS Association.

Lipskin arrived back in Colorado Springs in late September with only a few items of clothing, a CD player, and photos of family and friends. She had given other items to charity.
She was happy to be back.

“It didn’t last long because of the realities of living in a nursing home and being completely dependent,” said Lipskin’s friend Pastor-Clark, a teacher. Lipskin tried to brighten her room with family photos and books that she could no longer hold to read.

Most people with ALS are cared for at home, Ryan said. Only about 10 percent live in nursing homes.

Living in a long-term care center can be difficult for anyone, but it’s especially hard for ALS patients, said Ryan. “There are staffing issues. The patients don’t want to be there, they lose dignity and can’t do anything for themselves. It’s hard on everyone,” Ryan said.

And those issues are exacerbated by ALS’s relentless progression. “There is a lot of emotion around the illness — anticipatory grief and helplessness because the person is not going to get better.”

Lipskin had always been opinionated and quick to point out flaws in any program she was involved in — traits that helped her get things done in her professional and charity leadership roles. So it was no surprise that as a patient she was sometimes a handful for attendants and friends.

She wanted to be up and about, but it was painful and tiring. Someone provided a scooter, but the controls were on the right, the same side as her useless hand. Her neck muscles were so weakened her head hung down. Sometimes she wanted to be back in her bed to rest but couldn’t get that message across. It was a major procedure — she had to be strapped into in a slinglike contraption and lifted like cargo.

She tried to keep up with world news and politics and was especially happy when she heard that the House of Representatives had passed the ALS Registry Act. If passed by the Senate, it will establish the national ALS patient registry to be administered by the Centers for Disease Control and Prevention, to collect information that may help researchers find a cause and cure.

She knew that few people understand the ravages of ALS. “Please tell this story,” she said several times.

Friends brushed her curly hair, massaged her back, read to her, painted her nails gold, laughed and cried with her.

They also fed her because she hated going alone to the “feeding room,” where attendants spoonfed those who could not eat on their own.
She stopped eating for days at a time.
“I think she was trying to starve herself,” Field said.

Lipskin gave back to her caregivers the only way she could. She held their hands, joked, gave thumbs up signs, nodded, or turned up the edges of her lips to indicate her thanks.

When someone asked how she felt, she would peck away at the keyboard of a communication device, smiling like a naughty child.
“Sheeeet,” the mechanical voice machine would say loudly. “Sheeeet.”

The women of Temple Beit Torah devised a schedule so Lipskin would have visitors and help most days.

They created large cardboard signs with instructions to be followed by the everchanging staff members.
One bedtime note read:

“Please pull me towards the wall. Please pull me up so my head is on my striped pillows. Please roll me onto my left side. Line the wall with pillows to support my spine. Place bed control near my left hand. Move the tray alongside with the call button, Kleenex, TV remote all within reach. Please make sure I am comfy before you leave. Ask me. THANK YOU.”

The directions sound unnecessarily detailed, but pain is an excruciating side effect of an ALS patient’s lifeless muscles, Ryan said.

Lipskin sometimes feared the nights and pleaded with friends to stay with her. They slept in the empty bed in the room.

“We weren’t always the angels like it sounds. Beth Ann would get so demanding and I’d put my foot down,” Pastor-Clark said.

“One night her smoothie was too thick, then we put water in it and it was too thin. We wanted to be helpful and it seemed we couldn’t do anything.

“I finally realized that she was angry because she could not do it for herself. And then she also wasn’t remembering things that we had done, and she was going downhill so quickly it was very scary for her.”
Getting everything right 24/7 is hard on caregivers. Burnout is common.

Pastor-Clark took 10 days off from visiting to study for a test. “I felt guilty that it was a relief to be away.”

Field, 90, was Lipskin’s rock, seeing to her legal needs. The retired Army lieutenant colonel had been her boss at the Forensic Academy. He visited almost every day.

They met years ago in Washington, D.C., and Field remembered how shaken she was after visiting her mother, who was struggling with ALS.

“I really didn’t understand then,” he said, shaking his head. “I don’t think anyone who doesn’t have to deal with it does.”
Lipskin’s gutsiness gave Field and her other friends strength.

“Being with Beth Ann was healing for me,” said Nancy Marshall, who teaches at-risk high school students.

She worried it would be difficult to watch a friend slowly die. “But Beth Ann wouldn’t let me be caught up in my fears. I read stories and talked about my cats. She liked that.”

Lipskin had a love-hate relationship with death.

“I’m scared, but it is time to die. I want to die NOW,” she would type out to her visitors.
Field kept telling her that there was a heaven. “I’ll see you there,” he told her.

As a girl in Philadelphia, Lipskin loved the Ten Commandments and stories her grandfather would read aloud from the Talmud. He told her, “You have to be a good person not only for yourself but everyone.”

She said she had no concept of an afterlife. “I believe that you live the best life you can on Earth.”

One day, a chaplain visited while Pastor-Clark and Joyce Hartung, a Christian friend, were there.
“Do you believe in God?” he asked.
“A vengeful God. Nobody deserves ALS,” Lipskin replied on her voice machine.
“Will I see my mother?” she asked.
“I believe so,” the chaplain replied.

“I want to see her, but I don’t believe it,” Lipskin said. Tears rolled down her cheeks. Her friends cried with her.

She added, “I’m not angry at God. I’m worried about those I will leave behind. This can’t be good for my sister. She is ill, and my father in his 80s.”

Pastor-Clark tried to soothe her. “Your death will be a blessing. They have been through this once with your mother.”
The chaplain read a Christian story to her about life after death.
She replied, “Death is final. We live on in the hearts of those who love us.”
“I like that,” the pastor said.
As he got up to go, he said, “I’d like to come back and visit.”
“Yes, but no Jesus,” she replied, with her a flash of her former wryness.

The day came when Lipskin could no longer use the voice machine. She had always been meticulous with spelling, and completed sentences even when people early on guessed at what she was writing. It was as if she were showing everyone that she still owned her own words. But her fingers could no longer target the right keys.

Hartung said, “She was so angry she tried to hit all the keys at once. It was a terrible moment because she knew that was the end of being able to really communicate with the world.”

Some ALS patients are able to use other forms of communication such as lasers and pointers. But Lipskin was too weak.

For weeks Lipskin had wanted to move to Pikes Peak Hospice, the facility for which she had done endless fundraising and other volunteer work.
“I don’t want to die here,” she said of the nursing home.

Martha Barton, chief executive of Pikes Peak Hospice, said admittance is based on an evaluation by the hospice medical team and is tightly regulated by insurance and Medicare. In-patient hospice begins when a patient becomes so ill that other caregivers can’t offer 24-hour acute care.

Lipskin moved to the hospice Nov. 12.
“She was finally serene,” Field said.
The care was “quieter and softer,” Conn noted.

“They were so good to her,” said Charlene Beshany, a temple acquaintance. “As a nurse, I don’t hesitate to sit on the side of the bed; the more hands-on the better. But I saw the hospice nurse get down on her knees so that she was right on Beth Ann’s level. I knew it would be OK.”

On Nov. 17 — a year after her diagnosis — friends stopped by her room overlooking the mountains to celebrate Lipskin’s 55th birthday. They brought a birthday banner, sunflowers, lilies.
There was no birthday cake. She could not swallow.

Instead, she opened her mouth like a baby bird to accept tiny sips of water from a syringe.

Three days later, 16-year-old Brent Hawpe stopped by to play guitar for Lipskin. The St. Mary’s High School sophomore had played for her once before.
Her happy reactions the first time had inspired him to play for other shut-ins, he said.
But when he entered Lipskin’s room that evening, he said, “She didn’t look right.”

He summoned a nurse, who closed the door and put a flower on it — a sign that a patient had died.
Waiting in the hall, Hawpe asked, “Can I play a song to say goodbye?”
He went into Lipskin’s room and played “Ball and Chain,” which had been her favorite.

He sang: “Take away this ball and chain. I’m lonely and I’m tired and I can’t take anymore pain.”
“I had this feeling that she heard me,” Hawpe said.

Postscript: As per her final directives, Lipskin’s brain tissue was donated to the University of Pennsylvania for ALS research purposes.

The Pikes Peak Hospice Foundation will place her name on its Memory Wall, a wall Lipskin had helped create years ago to honor donors and volunteers.

Lipskin asked friends to bury her remains near her mother. Family members told Field that Lipskin wanted her ashes scattered in Colorado Springs in her favorite places.

Her friends will do both. “My mother is buried at the same cemetery as her mother,” Pastor-Clark said. “I’m going to put some ashes there.”

Field said they will plant a tree in Lipskin’s memory at America the Beautiful Park or Memorial Park in spring.

CONTACT THE WRITER: 636-0371 or carol.mcgraw@gazette.com

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