Pubdate: Fri, 18 May 2007
Source: Wisconsin State Journal (WI)
Copyright: 2007 Madison Newspapers, Inc.
Contact:  http://www.madison.com/wsj/
Details: http://www.mapinc.org/media/506
Author: Doug Erickson
Bookmark: http://www.mapinc.org/mmj.htm (Cannabis - Medicinal)
Bookmark: http://www.mapinc.org/find?232 (Chronic Pain)

A DEATH WELL PLANNED

On a November day just before Thanksgiving in 2005, Joan Rademacher, a
72-year-old woman with breast cancer, sat at a kitchen table in
Madison with her hospice nurse, drinking tea and discussing the
progression of the disease.

The bumpy, reddened skin that at first had been contained to
Rademacher's chest had crept to her back and arms. It looked like a
rash but was in fact the tumor spreading.

"Are you in pain right now?" asked Cathy Sutter, the hospice
nurse.

"No, not physical pain, emotional pain."

"I don't think you've ever said that," Sutter said. "I was afraid you
never would."

Rademacher rarely complained, yet she had recently given up driving,
and now she feared becoming too weak to do routine tasks.

"It's very hard to have everyone doing everything for me," she said,
beginning to cry. "So I'm not agreeing to it. I want to do my own
laundry. It's a dumb little thing, but it's important to me."

"It's not a dumb little thing," Sutter said. "It's a loss. It's
another part of letting go."

Time To Reflect

Joan Rademacher, a former nurse, felt her death was approaching
rapidly. She did not expect to live much past Christmas.

To get the most out of her last months, she tapped HospiceCare Inc., a
Fitchburg nonprofit organization that provides physical, emotional and
spiritual care for terminally ill people with six months or less to
live. Hospice programs serve people seeking comfort, not a cure.

Rademacher didn't want to hasten her death, but she didn't want to
prolong it artificially, either. She liked the hospice philosophy --
accept death as a natural part of life and use its pending arrival as
an opportunity to achieve some final goals.

The hospice movement has been hindered at times by a persistent
misconception that patients are "giving up" on life. This has led to a
mantra among supporters that hospice is about "how you live, not how
you die."

Rademacher wanted to die pain-free and with dignity. To her, the
latter meant being fully aware and in control as long as possible.

The local organization that would accompany her on this journey was
founded in 1978 with 12 volunteers in the basement of a United Church
of Christ building in Madison. Today, HospiceCare employs 428 people
and runs a 50-bed inpatient facility in Fitchburg. On an average day,
it cares for more than 400 patients, most of them in their homes.

Rademacher would prove to be one of the organization's more unusual
and challenging patients.

"I don't know what's out there, but to me that's not a negative," she
said early on. "We're all going to die. I think I'm going to be much
more prepared than most people."

*

In 1994, Rademacher, who lived in Massachusetts at the time, noticed a
puckering in her left breast during a self-exam. The tumor was cancerous.

Rademacher had her left breast removed, then underwent six months of
chemotherapy.

The cancer resurfaced in 2001. More chemotherapy followed, but her
doctors cut it short after her toenails and fingernails turned black
and started seeping fluid.

She took part in clinical drug trials, but each new drug brought new
horrors -- bone pain, disabling headaches, mouth sores, vomiting. In
2004, she halted all curative treatment.

Her oncologist was disappointed. "I hate to see you pulling the shade
down on your life," she recalled him saying.

The comment irritated Rademacher. She respected doctors but felt they
sometimes lost sight of their patients' best interests.

She was appalled by the side effects of the drugs her oncologist
wanted her to try. "Why would I do that to the body that has been
working so hard to keep me going?" she thought.

In February of 2005, she moved from Massachusetts to Madison to live
out her remaining months in the home of her brother and sister-in-law,
Duane and Pat Smith.

She filled out an end-of-life directive: no ventilators, no feeding
tubes, no efforts to resuscitate.

"I'm so scared some idiot will start sticking tubes in me. There's a
time to live and a time to die. My time will be my time."

*

Death didn't terrify Rademacher. It was too familiar for
that.

She had been married to her husband, Gene, just five years when he was
diagnosed in 1965 with Huntington's disease, a brutal neurological
disorder that breaks down the body and is always fatal.

The couple lived in Lansing, Mich., and had four children, the
youngest 6 months old.

Gene died 10 years later at age 39. Each of their children had a 50-50
chance of inheriting the disease. All four did.

"If there was any good part to this, he didn't have to see his
children die," Rademacher said. "He died not knowing any of his
children had the disease."

She moved her children to Massachusetts, where she felt the hospitals
for patients with neurological disorders were more advanced. The
couple's oldest son, Dennis -- charismatic, athletic, outgoing -- died
first in 1988 at age 28. David, 26, frugal and farsighted, followed
five weeks later.

Both had made it clear they wanted no medical intervention to keep
them alive, but hospital officials balked. Rademacher went to court to
keep feeding tubes out of their bodies.

In 2001, Mary, the baby of the family, died at age 37. Annie, 42,
headstrong like her mother, died in 2004.

Throughout the illnesses, Rademacher and her children celebrated any
holiday or milestone they could, often in a hospital.

"We'd laugh right up until the day they died. We had to find joy in
dying, really, or we never would have had any."

As the disease struck down one child after another, Rademacher became
an advocate for Huntington's patients, organizing fundraisers and
speaking out about the care of terminally ill patients. She switched
from nursing to selling real estate, needing flexibility in her
schedule. She couldn't work 12-hour shifts with her children so sick.

"She had a monumental task, overwhelming at times," said her sister,
Phyllis Eggert, a retired nurse in San Francisco. "Their needs were
endless and constant."

In the middle of it, Rademacher was diagnosed with breast
cancer.

People shake their heads when they hear her story. How does she get up
in the morning, they wonder.

"You have to know that I've had a lot of joy in my life," Rademacher
tells them. "A hard life, in the sense of a difficult life, is not a
bad life."

Her relatives have watched Rademacher take one blow after another
without becoming bitter.

"How could someone be so courageous, so strong?" asks Pat Smith. "And
still, she just loves life. I'm trying to absorb that from her."

A Team Approach

When Dennis Rademacher, the oldest child, was about to die, he asked
his uncle Duane to always care for his mother.

"My brother remembered that promise," Joan Rademacher said. "I could
not have chosen a better place."

The Smiths would become her primary caregivers. Duane, 10 years
younger than his sister, is a retired accountant. Pat, a UW Hospital
nurse, was like a sister to Rademacher. "She's sweeter than I am,"
Rademacher said. "I'm not an unkind person, but I am blunt."

The Smiths would be assisted by a HospiceCare team. Rademacher would
get to know four employees intimately.

Sutter, the registered nurse, assessed Rademacher weekly for physical
changes and helped her with symptom management and pain relief. The
latter became especially critical with Rademacher, who had
inflammatory breast cancer, a harsh form that brings with it itching
and, at times, shooting pain.

Debra Noell, a HospiceCare social worker, became her counselor,
assistant and community resource. She would help Rademacher execute
her end-of-life goals.

"Joan is a typical patient in that she worries a lot about the effect
of her dying on her family," Noell said one day early on. "But she's
different in what a powerful advocate she is for herself. She's not
just going to accept what the medical system is going to give her.
She's almost defiant in her choices."

Rademacher requested a nurse and social worker who understood the
value of non-Western approaches to pain management, including
acupuncture, Chinese herbs and shamanism. Sutter practices "healing
touch," in which practitioners apply a light or near-body touch to
restore harmony and balance to a person's energy system. Noell employs
"guided imagery," a verbal relaxation approach that can take the mind
to calming places.

Sheila Rall, a certified nursing assistant (CNA), would see Rademacher
more than anyone else, bathing her two to three times a week and
changing the bandages on her chest.

Initially, it was unclear how big of a role the fourth team member
would play. Annette Cleary, a Catholic chaplain, had learned early on
that Rademacher had politely but firmly declined HospiceCare's
spiritual offerings.

At the first team staff meeting, Cleary wrote in her notes,
"Definitely does not want to see a Catholic chaplain!"

*

As Christmas 2005 approached, friends and family members came to say
goodbye from across the country, some staying a few hours, others for
days.

Among them was her only grandchild, Joe Rademacher, 21, the son of
Annie Rademacher.

He lived in northern California now and was studying computers, but he
had grown up in Joan Rademacher's house. She considered him her son,
not grandson.

"I'm going on fumes from his visit," she said after he left. "Now that
I've seen Joe, what else do I need?"

Seeing him grow into a man was her last real job, she
felt.

"He needed to break free. I think that's where my energy is coming
from. I'm getting so much pure joy from the fact that he's doing OK."

At some point during the whirl of visitors, one of them brought her
marijuana.

Rademacher put it in her food and decided it eased some of her pain,
reduced her nausea and increased her appetite. But the thought of
getting busted for drug possession at 72 or bringing disrepute upon
her brother and sister-in-law kept her awake at night.

She gave it up, grudgingly, and switched to Marinol, a synthetic
marijuana that is legal. The Marinol helped, but it irked her that she
was putting a synthetic concoction in her body when the natural drug
was available.

"I always thought it was stupid that it's illegal, and I have a hard
time dealing with stupidity. I had something that worked, and my
government won't let me use it."

*

Christmas brought joy -- her niece, Abby, one of Pat and Duane's
daughters, came home from the University of Minnesota -- and
heartache. Rademacher's oldest daughter, Annie, had died just two
weeks before Christmas the year before.

Rademacher loved her family and the pageantry of the holidays, yet
sometimes it was all too much.

"I don't want to put on a happy Christmas face," she grumbled during
one low point. "I don't want to be anyone's Christmas project. If I
feel horrible, I want to be able to feel horrible."

She was taking greater dosages of morphine now for pain, and her
energy reserve drew down quickly, requiring long naps. At one point,
she had become so weak and confused that she was admitted to
HospiceCare's inpatient unit for a brief stay to adjust her
medications.

It was during this time that Cleary, the chaplain, stopped by her room
and introduced herself.

Rademacher kept her at a distance, but the two had a pleasant if light
conversation.

"Would you like to share a prayer?" Cleary asked at the
end.

"No, not today," Rademacher said.

Raised a Catholic, Rademacher had drifted from the church over its
stands on birth control and women in the clergy. But the issue was
bigger than that.

"I'm not inclined to be religious, I'm just not," she said. "I know I
could comfort so many people if I could just say, I'm going to be with
God when I die.' But I can't say it. I can't be someone I'm not, and
I'm not about to change now."

Her spirituality was nature-based and influenced by Native American
beliefs. She loved trees and water and felt that if there were an
afterlife, her children would be her spirit guides.

HospiceCare chaplains come from different faith backgrounds and are
assigned to patients based on where the patients live within the
organization's service area. They don't push.

"Our roles are pretty broad," Cleary said. "We focus on spirituality
- -- connections, relationships, why am I here? what happens when I die?
As people approach the end of their lives, those big questions become
huge questions."

In mid-December, Cleary made her first home visit. She and Rademacher
chatted about holiday rituals, family members, sorrow and grief.
Nothing overtly religious.

"Would you like to share a prayer?" Cleary asked at the
end.

"Sure, why not."

"O Great Spirit of the universe, giver of life and energy," Cleary
began.

She prayed that Rademacher be blessed with courage and feel the
compassion of the world.

Rademacher was pleasantly surprised. "I felt a commonality with her,"
she said after Cleary left. "She has an open mind. She doesn't judge."

They began meeting monthly, their relationship following a common
trajectory with Rademacher.

"Joan knew what hospice care was all about," Cleary said. "She didn't
necessarily want a team of clinicians. She wanted to surround herself
with friends who happened to also be clinicians. She allowed me to be
professional, pastoral and personal all at once."

*

HospiceCare stresses that the patient sets the agenda, and Rademacher
ran with the concept.

She had a long to-do list, and Noell, the social worker, scrambled to
make it happen.

Rademacher wanted to be cremated in a simple pine box. Noell consulted
with her colleagues and found a woodworker to build the coffin and
store it in his barn.

She wanted twice-weekly acupuncture treatments. Noell found Colleen
Lewis, a private practice acupuncturist in Spring Green affiliated
with UW Madison Integrative Medicine.

She wanted to videotape a final message to her family that would be
played after her death. Noell borrowed a video camera.

"No one's really ever had this specific request before," Noell said as
the two fumbled to figure out the camera's settings, laughing along
the way.

"I love Debra's attitude," Rademacher said. "Whatever I ask to do, she
always says, Well, sure.'"

"Or we'll try," said a slightly nervous Noell.

A Milestone

The early months of 2006 flew by. Rademacher couldn't believe she was
still alive.

"I'm not disappointed, just bewildered," she said one day in early
March.

She was sitting on her bed, wearing a purple velour sweat suit and
bumblebee-striped socks that said, "Impeach Bush." A Johnny Cash CD
played.

She loved this upstairs bedroom. A big window let in lots of light,
and when she reclined, all she could see were the tops of backyard
trees.

She called the room her nest, and it was filled with things that gave
her comfort -- a Georgia O'Keeffe flower print, a wall of family
photos, a Native American drum, paintings of trees and lighthouses. On
the windowsill were rocks from Lake Michigan, where ashes from her
husband and two sons were scattered. A little statue from her oldest
daughter sat on the dresser -- "World's Greatest Mother."

Half of her bed was covered in books and magazines: The New Yorker;
"Barrel Fever" by David Sedaris; "Freakonomics" by Steven Levitt and
Stephen Dubner; "Mother Earth Spirituality" by Ed McGaa.

"You don't stop thinking about the rest of the world just because
you're not going to be part of it," she said.

In a burst of optimism, she had recently taken up coin collecting. She
hoped to acquire 50 state commemorative quarters, some of which were
not scheduled to be issued until 2008.

*

There was reason for optimism. She had just returned from a six-day
beach trip to Hilton Head, S.C., with two of her best friends --
Margee Ten Eyck of Belgrade, Mont., a nursing colleague she met in
1981, and Rose Roche of Lansing, Mich., a former neighbor she met 43
years earlier. The trip seemed unfathomable a few months earlier.

"A lot of people think it's a steady decline with cancer," she said.
"It's not. It's up and down."

She also had been deriving great pleasure from a new friendship. In
January, HospiceCare matched her with a volunteer, Mariana Hewson of
Madison, a retired medical educator.

In some ways, Rademacher seemed an unlikely candidate for a volunteer,
since she was surrounded by family and friends. But she wanted to give
her brother a break from taking her on errands, and she felt she could
discuss things with a volunteer that might hurt her family.

They scheduled weekly outings to Rademacher's favorite places -- Willy
St. Co-op, A Room of One's Own bookstore, the Chazen Museum of Art.
"We do non-sick' things together," Rademacher said.

More than 900 volunteers -- double the number of paid staff -- keep
HospiceCare running. About two-thirds of the volunteers work directly
with patients, and they each receive 22 hours of training. They are
told their main role is to listen and provide companionship, not to
try to fix things.

At one of their early outings, Rademacher wept as she told Hewson how
frustrated she'd become that she couldn't get her brother and
sister-in-law to meet with Noell, the social worker. Rademacher felt
she'd become a burden to them.

"I just want them to have some of the support I'm getting," she said.
"But asking for help is especially hard for my brother. People in our
family were brought up to be very, very stoic."

Hewson shared a story of a similar situation in her family's
past.

"I just don't believe there are any families that know how to make
this process simpler," Rademacher said.

"You've probably traveled this route more than most," Hewson
said.

They were both crying now.

"I've learned that tears heal the soul," Hewson said.

"I believe that," Rademacher said.

*

April marked one year of Rademacher being a HospiceCare patient, an
uncommon milestone.

The average length of time HospiceCare patients receive services is 60
days.

Medicare and private insurers pay for hospice services as long as a
doctor certifies that it is likely the patient will not live longer
than six months. Each year, 11 percent of HospiceCare patients are
discharged because they get too healthy. Hospice workers call it
"graduating."

There are many theories for why this happens. For some patients, the
personal attention and breadth of services boost their spirits and
general health. For others, their diseases simply don't play out as
expected.

Rademacher was never discharged from hospice. Her primary physician
and HospiceCare's medical director continued to believe that the
cancer could take her at any time. As April unfolded, the prognosis
seemed dire.

Her body was changing. The skin on her chest continued to break down.
Lesions multiplied on her left breast. The cancer inched farther up
her neck.

It was becoming difficult for Rademacher to lift her arms. She gave up
doing her laundry.

She wanted to discuss these changes with all of her caregivers, so she
called a group meeting -- a rare move by a patient.

"Oh, so you'll be giving us a lecture?" her sister-in-law teased as
everyone gathered around the kitchen table.

"Of course, you know me," Rademacher said. She dubbed it a meeting of
the board of directors of her health-care company. She would be the
CEO.

Present for the meeting were her nurse, social worker, CNA,
acupuncturist, brother and sister-in-law.

The meeting began brightly but turned uncomfortable as it became
apparent that Rademacher was not herself. She was suspicious,
paranoid, in a fog.

"I'm starting to fall a bit or a lot," she announced, to surprised
looks. "Maybe I'm stumbling in the stairway or in the hallway. Every
time I trip, I have to get up with the help of someone else."

"Who's helping you up?" asked her sister-in-law. "I don't think you've
ever fallen."

No one at the table had seen her fall.

Asked about her pain level, Rademacher said it was very bad, a seven
out of 10.

The comment hit Sutter hard. The two had worked for months to adjust
Rademacher's morphine, and in the past Rademacher reported her pain
level at two or three and never above a five.

Rademacher's displeasure with Western medicine surfaced again. She
wanted fewer drugs and more acupuncture, but Medicare wouldn't pay for
acupuncture. "I just get so pissed off about that," Rademacher said.
(Lewis offered to add a third weekly acupuncture treatment immediately
for free.)

Rademacher also wanted more guided imagery and healing
touch.

"I do hear your message, that there are many, many things besides
medication that are helping you," Sutter said.

Toward the end of the meeting, Rademacher began to cry. "It feels to
me like I'm climbing uphill all the time."

"The good thing is that no one is giving up," her sister-in-law said.
"You know all of us are trying to do everything we can. You do believe
that, don't you?"

"I wish it was true," Rademacher said.

'Where Will It End'

Shortly after the meeting, Rademacher was admitted to HospiceCare for
a few days so that doctors could figure out what was happening to her
body.

She had been unwilling to cede control of the administration of her
pain medication to anyone else, and the assumption was she had been
either forgetting to take some of it or taking too much of it, causing
the confusion.

At HospiceCare, Pat Smith and Noell gently broached the topic of
medication with her. Rademacher became defensive. She first denied
being confused, then lashed out at them for not telling her sooner
that she had been confused.

"I am furious with the two of you," she said. "I don't trust you
anymore. Get out!"

She couldn't fire her sister-in-law, but she did fire
Noell.

Hospice officials prepare caregivers and their own employees for this
sort of thing. Patients can suddenly do or say things that are out of
character. Sometimes it is the disease spreading to the brain or the
amount of narcotics involved. Other times, it's the weight of
everything happening to them.

"The impending notion of your own death can scramble your
personality," said Dr. Bill Rock, the founding medical director of
HospiceCare, who is known as "Doc Rock."

For hospice employees, being asked to leave a patient's household is
heartbreaking, said Mia Morrisette, Noell's supervisor. She praises
Noell as "the gold standard for social workers."

"In Debra's situation, she just needed to take Joan's anger at that
moment," Morrisette said. "That was her job -- to allow that anger to
come in her direction."

After the incident, Noell backed away graciously, and a new social
worker was assigned.

"It made me very sad," Noell said. "It was totally illogical and not
like Joan. But if it appeases her to have me out of the picture,
that's part of my job."

Rademacher would not directly address the episode afterward, a rare
instance when she didn't want to process her emotions.

"I feel badly about it. I probably will indefinitely," she said later,
after doctors had adjusted her medication. "I continue to think Debra
is a very fine person. I feel a real loss because I have a high regard
for her."

Rademacher and her sister-in-law never discussed the
issue.

"I just had to forget it," Pat Smith said. "It was hurtful, but she
never would have said that if she had been in her right mind."

The Smiths learned to brush off the occasional outburst from
Rademacher.

"When things like that happened, we took nothing personal from it,"
Duane Smith said. "By the next day, it was as if nothing had happened."

*

May brought two developments.

A mean bout of pneumonia almost killed Rademacher -- "I was annoyed to
think I might die from that" -- and oncologists suggested she undergo
a series of 15 radiation treatments.

The radiation would burn the cancer, reducing its impact on the nerve
endings on her chest wall. It was an attempt to lessen her pain, not
prolong her life.

Rademacher participated with great enthusiasm, but after her seventh
treatment in mid-June, she was too tired to withstand them and halted
the treatment.

The itching, burning and scratching intensified in the weeks ahead.
Red spots spread to her abdomen and thighs. She had severe stomach
pain, and her left arm swelled so large she couldn't wear normal clothes.

She began to welcome the thought of death.

"This isn't life, living on and on and on like this. Where will it
end?"

She called her grandson in California.

"I can't do it anymore," she told him.

"You know I'll never forget you," he said.

The simple words profoundly moved her.

"It was like a big, warm blanket. I don't know what else he could have
said," she told Tom Brei, her new volunteer, as the two sat on the
Smiths' front porch one hot August day. Brei, a retired state worker
from Mazomanie, had replaced Hewson, who had left the country on an
extended foreign trip.

"Here's this little guy I've always taken care of, and now he's taking
care of me," she continued, crying. "I find that I have been given
this grace of love from so many people."

"You know that this kind of love does not come free -- you obviously
have given a lot of it away yourself in your life," Brei said.

"I know that. I accept that."

*

The health crisis passed. Rademacher rebounded, leading to a surprise
pronouncement in September.

"I'm making a change in my living situation."

She had been thinking about her position in the family and felt she'd
lost her identity.

"I'm not the aunt anymore. I'm not the sister anymore. I'm the family
sicko."

She tapped her savings and moved to a small apartment at Coventry
Village, an assisted care residence on Madison's Far West Side, about
three miles from her brother.

"I'm moving into my own little house, and I'm very excited. I don't do
dependency very well."

The Smiths at first were hurt -- "It felt like we'd failed," Pat Smith
said -- but came to see the move as necessary. Even though they had
converted their dining room into a second bedroom for Rademacher, they
had become increasingly concerned that she would fall on the stairs
leading to her upstairs bedroom. Coventry Village offered
handicapped-accessible facilities and 24-hour nursing care.

Rademacher relished the new friends she met and began doing her own
laundry again. She attended monthly meetings of the Resident Council,
bringing a list of suggested improvements.

Her new home had one big drawback. Because she had switched locations,
she was assigned to a facility-based HospiceCare team. She had to give
up the hospice employees she'd known for 18 months.

"That seems stupid to me, but an organization must have
routines."

Still, she wasn't willing to give up her CNA. Rall, a grandmother of
three who rides a Harley, had clicked with Rademacher right away. They
were both no-nonsense straight shooters who could find humor in the
darkest moments.

"It came down to whether it would be the bureaucracy's needs or
Joan's," Rall said.

Rademacher pressed her case.

"My profit and loss sheet has had too much loss," she told hospice
officials. "I need this one."

Rall stayed.

*

"How come I'm living so long?"

Rademacher posed the question to Dr. James Cleary, a specialist in
oncology and palliative medicine at the UW Carbone Cancer Center,
during a checkup in mid-November. She had just turned 73.

"That seems to be a mystery for all us," Cleary said. (By coincidence,
he is the husband of Annette Cleary, Rademacher's chaplain.)

The cancer was spreading through her skin instead of attacking any
vital organs, Cleary told her. Doctors don't know why this
occasionally happens, he said.

"You are living longer because of that, but with considerable
suffering," he said.

Palliative care experts usually can control the pain of most patients,
but the extent of Rademacher's cancer symptoms had taxed those efforts.

"She has suffered terribly," Doc Rock said. "She is wearing a vest of
cancer almost an inch thick around her body."

Family members did not fault HospiceCare. They felt Rademacher's need
for control and independence was causing much of the problem.

"She is so mixed up about these medications, yet she is adamant that
she must keep administering them," Pat Smith said.

"Any problem with pain is her own doing," said her
brother.

On the trip to Cleary's office, Rademacher had noticed the first
holiday decorations of the season. "I'm going to be alive for another
Christmas," she sighed.

She would need gifts for everyone. She set about making 180 napkin
holders out of felt.

*

"How are you, my dear?" asked Lauren Winter, Rademacher's new hospice
nurse, as she entered her apartment for a weekly checkup in
mid-December.

"I'm just aflame. My right breast is like a hot coal
burning."

Rademacher had canceled an outing to a play the night before and had
backed out of a dinner invitation for the coming weekend.

The napkin holders were not getting made. HospiceCare offered to rally
a group of volunteers for the task, but Rademacher rejected the idea.

Winter gave it another try. She offered to spend a few hours with her
daughter over the weekend helping Rademacher churn them out.

Rademacher didn't respond immediately, then, "I'm not overcome with
enthusiasm."

Winter busted out laughing. "I love your frankness."

The napkin holders didn't get made, and that was OK with
Rademacher.

Letting Go

In early 2007, Rademacher began planning a trip to see her grandson in
California. It was not to be.

The signs of decline she'd exhibited before -- exhaustion, confusion,
weight loss -- returned. There would be no rebound this time.

She became too tired to talk on the phone or to leave her apartment.
On March 12, Winter called in Doc Rock to help evaluate Rademacher.
They discussed options with her.

A few months earlier, Rademacher had declared her intent to die at
Coventry Village. This was consistent with hospice statistics -- 97
percent of patients want to die in their homes. But recently,
Rademacher had changed her mind. She loved the woodsy setting of the
HospiceCare facility, and she felt the spacious rooms and on-site
cafeteria could better accommodate her family members.

An ambulance was called to take her there.

She waited silently in a chair in her room, swathed in a white sheet,
a pink and purple silk scarf around her neck. She could barely raise
her head.

"I just want it to be somebody else's death, not mine," she said. "I
don't want to go."

*

She would speak little after that, other than fragmented expressions
of love to her family and friends.

During one visit from Annette Cleary, Rademacher fidgeted in her bed,
trying to remove her blankets.

"I'm so uncomfortable," she told the chaplain.

After the restlessness ebbed, Cleary moved in close and whispered,
"Your body looks comfortable now. Is it possible your spirit needs to
move?"

"Yes, it is possible," Rademacher whispered back.

"Are you able to not be in charge?" Cleary said.

Rademacher ignored her.

"I know you can hear me," Cleary said, repeating the question two more
times.

Rademacher took Cleary's face in her cupped hands.

"You are so tricky," she told Cleary, smiling.

Cleary asked again, "Are you able to let go of that control
yet?"

"No, not yet," came the answer.

*

A few days later, early on the morning of March 23, Rademacher called
out for her sister, Phyllis Eggert, who had been staying at the
HospiceCare facility around the clock for more than a week.

The two shared a few sips of coffee. Her sister's name was the last
word Rademacher spoke.

Later in the morning, Winter, the nurse, whispered to Rademacher that
it was a beautiful, sunny day outside.

"The sky is clear, there's not a cloud in it," she said. "It would be
a good day to travel."

Forty-five minutes later, at 10:43 a.m., Rademacher
died.

Before her death, she had signed papers allowing her sister-in-law to
make medical decisions for her if she became mentally or physically
incapacitated. The document is called a power of attorney for health
care. The switch never occurred. Rademacher remained lucid enough
until the very end to make all of her own decisions.

*

The next day, about 35 family members and friends gathered in the
HospiceCare chapel for a memorial service, the first of several
planned around the country. Rademacher had asked that her ashes be
spread in the Atlantic Ocean, Lake Michigan and Lake Superior.

The room was filled with family members and many of the people she'd
become close to -- Colleen Lewis, her acupuncturist; Cathy Sutter, her
first hospice nurse; Lauren Winter, her last nurse; Tom Brie, the
hospice volunteer; Sheila Rall, the CNA; and Doc Rock.

Chaplain Cleary officiated. A jaunty, bluegrass version of "Somewhere
Over the Rainbow" opened the service, just as Rademacher had requested.

Abby Smith, Rademacher's niece, started to read the poem "When Death
Comes" by Mary Oliver but broke down after a few words. Her father,
Duane, finished it. Later, he passed around his sister's driver's
license. He wanted everyone to see the photo, taken 18 months earlier.
She was beaming.

"Her legacy is not all of these losses," Pat Smith told the group.
"She always told me that you can't control what happens to you, but
every day when you wake up, you can choose how to respond to it. She
could have been so bitter, but she chose to find the beauty in every
day and in every person."

*

A year earlier, Rademacher had stood in the same chapel while giving a
tour of the HospiceCare facility to a friend.

She had paused in front of a print by artist Richard Kemble called "A
Sense of Glad Awakening." The abstract landscape shows rows of
olive-green trees and a gray path leading off into purple mountains.

"There's a road, but where does it travel?" Rademacher said, peering
into the artwork. "That is the unanswered question, I guess."

ABOUT THIS REPORT

Joan Rademacher, a Madison breast-cancer patient, opened the last 18
months of her life to State Journal reporter Doug Erickson and
photographer Craig Schreiner.

The State Journal wanted to tell the story of how terminal illness
affects real people and contacted HospiceCare Inc. in Fitchburg for
help finding a patient. Rademacher volunteered.

Her involvement in the article came after the intense national debate
over the case of Terri Schiavo, a Florida woman whose family fought
bitterly over whether to disconnect her life support. Schiavo's death
in March 2005 triggered a spike in interest in living wills and
end-of-life directives.

A former nurse, Rademacher participated in hopes of educating more
people about patient rights and the services available through
hospices. She was aware from the start that the article would be
published only after her death.
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