With Dignity..

[Guest guest]

This was sent to me by someone on my A1ATD support group list. I wanted to share..

4URINFO: If you do nothing else with your life

today then read this one over. The Olde Guy

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With help from hospital, and her family face death with dignity

Seth_Koenig@...

BRUNSWICK ­ On the cart next to her bed at

Parkview Adventist Medical Center, has

a small radio with a CD player on it. She chose a

disc of gospel tunes from the cart without

looking closely at the list of songs, and put it in.

What first started playing ­ "Put Your Hand in

the Hand" ­ brought back memories.

One of her daughters, Terry, had learned the

guitar as a youngster and convinced her three

sisters ­ , and ­ to join

her in performing that particular gospel song for

the parishioners of the United Baptist Church in Topsham.

According to Terry, who is now an adult with the

last name of Colby, the siblings had played that

song for their fellow church-goers "as often as they let us."

Hearing the song at Parkview recently reminded

, 72, of those Sundays from years past. It

also summoned a flood of memories for the four

daughters, who ­ like their father, , and

many grandchildren, nieces and nephews ­ have

spent much of the past two weeks in that same hospital room.

Everyone in the room laughed at the recollection

of the church performances, and chased the story

with another jovial memory, perhaps of a family

gathering at the clan's lakefront retreat in

Litchfield. Everyone wore a smile and the sun

seemed to shine a little brighter and a little

warmer through the first floor window.

It is an atmosphere that has been common in the

E. Boyd Livesay Room at Parkview since was

told earlier this week that she might have less than a week to live.

The former nurse was diagnosed with the same

genetic liver disease ­ Alpha-1 antitrypsin

deficiency ­ that took the lives of her sister,

Barbara, at the age of 64 and brother, Steve, at the age of 46.

"My mother, we think, also died from it, but it

was before they really understood the disease,"

said from her hospital bed on Wednesday.

Her mother died 30 years ago, in 1976.

Now, in a room more relaxing than any that were

in hospitals in her mother's day, , who is

too weak to walk, makes her final efforts to

leave this world a better place than how she found it.

She worked for years at The Highlands retirement

community in Topsham, and was the first HeadStart

nurse in the area when former first lady "Lady

Bird" implemented the program in 1964.

But one needn't thumb through ' notable

humanitarian résumé to see the woman's impact.

One must only see the eyes of her relatives, who

are drawn to their matriarch's side as much by

her still-magnetic personality as by her terminal diagnosis.

"By being strong, it makes us strong," said

husband , simply and effectively.

Strength was one quality the Livesay Room ­ set

aside for the hospital's end-of-life care program

­ had in abundance. If one hadn't been told that

was approaching her final hours on Earth,

it would have been impossible to tell based on the atmosphere there.

"The interesting thing about her ­ and about many

people who face death with courage ­ is that as

they are near death, life becomes even more

alive," said Dr. Howe of Parkview Medical

Associates. "Colors become sharper; what's

important in life becomes more clear. As she is

giving up life, we ­ everybody in the room ­ are

absorbing life. We're living better because she is dying well."

The latest development On Tuesday, daughter

, whose last name is now Helton, stoically

told her sister, Terry, that things had gotten

worse with their mother ­ a message similarly

relayed from the nurse on duty to Howe earlier that day.

Howe, upon hearing the news, immediately went to check on his patient.

"I think it went to my head," deadpanned

upon Howe's entry into the room. Indeed, there

was the 72-year-old tucked under her blankets and

wearing a flesh-colored conehead hat ­ a

Halloween costume she has worn annually for years.

Terry fell for the same trick.

"It's hard to put into words," she said. "She's

taught us how to deal with things."

"Hard" may be an understatement. "Impossible,"

maybe. Luckily, the family of has

explained with laughter what the English language

is so poorly equipped to illustrate.

'I was very healthy all my life' Despite the

family history, ' current medical condition

was never a foregone conclusion. Three years ago,

nobody could have foreseen the situation she is in now.

"They told me I didn't have it," said of

the Alpha-1 antitrypsin deficiency. "They had

tested me and said there was no sign of the disease."

That didn't mean she was unfamiliar with it, though.

"You've been around it a lot," said to his

wife. "You've helped your mother and sister, and you helped Stevie."

Now, the mother of four and grandmother of 10 is

getting that help from her family.

"With liver disease you don't really have a

choice," said . "They don't really have a

cure for it. I knew what was ahead, so I take it

one day at a time. I just resigned myself to try and enjoy what I have."

She almost dodged the genetic ailment. The

anesthesia and pain medication used to subdue a

treatable case of cancer in her left kidney two

years ago triggered the hidden disease, which may

have otherwise stayed forever dormant.

"Prior to that, I was healthy," said . "I

didn't have a thing wrong with me. I was very healthy all my life."

Then, just more than a month ago, she checked in

to Parkview for treatment on her liver. She

checked out after "four or five days" and

returned home for two weeks, only to return

again. That was two weeks ago today.

Last Friday, after a battery of tests and trials,

Dr. Howe told the truth. A little more than

a month ago, she was actively helping her husband

run his construction business. Now, any day could be her last.

"As a practitioner of medicine, we do all we can

to prolong life," said Howe, "but there's a point

where you cross a line and you're no longer

prolonging life, you're prolonging death ­ and at

that point, you've got to sit down and have a heart-to-heart with the patient."

Howe gave his patient all the information. She

had a choice: Continue treatment and maybe buy

some extra time or just focus on enjoying what

little time she has. It's a decision, said Howe,

"that doctors can't make for patients," and,

"that nobody should ever have to make alone."

"Patients know what's happening," said Howe, "and

knew it. She just needed permission to stop

struggling to try to get better physically."

End-of-life care "Dr. Howe came in with all of

these papers, telling me, 'This is low and that

is low and this isn't where we need it to be, and

there's really nothing more we can do,'" recalled

. "(He said), 'We've tried everything.' So I

said, 'It's time to make me comfortable, then.'"

Said Terry: "It was difficult. It's hard to hear

that. If there's a problem, you want to do

something about it. I told her, 'I wish there was

something I could do to fix this problem.' You feel a loss of control."

The helplessness of people to bend the world and

change fate is never more glaring than at times

like these. People can, however, change the way

they receive fate. And in that, has

total control. The world is powerless to break her will.

A few days after being told that she was down to

her final week or so, almost 30 friends and

family members joined at Parkview, laughing and reminiscing.

The lively afternoon elicited memories of similar

gatherings at the aforementioned lakefront lot in Litchfield.

"That was fun," said Terry Colby's 13-year-old

son afterward, catching his mother off-guard. It

was, after all, a day for many of the relatives

to essentially say "goodbye" to the woman who had

anchored the family for so many years.

"It was like a good day at the lake," he explained.

The experience is one the family thanks Parkview

for profusely. The space necessary to accommodate

such a large get-together is a direct result of a

hospital focus on end-of-life care that began

about a year-and-a-half ago, as Parkview

officials recognized a growing need for such

services in what is statistically the oldest state in the nation.

The cart that carried the gospel CD and radio is

a result of the end-of-life care program, and

also carries lotions, literature, picture books and sketch pads.

The program also offers daily support from

pastoral care; complementary hospitality service

during the anticipated last 48 hours of a

patient's life for family members; a six-week

"Living with Loss" support group; therapeutic

live music; and use of the specially designed Livesay Room.

"I don't think we can say enough about the

nurses," added . "They've been

phenomenal. Every single one ­ very sincere, nothing put on."

Assistant Chaplain Bob Beaumont said the hospital

looks for "nurses who don't just do the

mechanical things, they've got to have 'heart.'"

"Several of the nurses said they've worked in

other places and came looking for a place where

they could give this kind of service," said Terry Colby.

More so than a list of material offerings,

though, Howe attributed a successful end-of-life

care program to change of mind-set.

"All good quality end-of-life programs

acknowledge that, no, life is not going to go on

forever and, yes, we can improve the quality of

life she has left," said Howe. "With I think that's been done."

The days spends with her family now

are precious. A Parkview statement says that the

walls of the Livesay Room are "decorated to

simulate a home environment and provide privacy."

For , the sun setting out her window, bright

and warm, might as well be fading behind the

horizon of that lakefront haven where she and her

loved-ones have always been closest.

There, with smiles still on every face in the

room as nostalgia simmers in the forefronts of

all her daughters' minds, is in total control. She is at home.

Terry said it might not have been that way if not

for the hospital's focus on end-of-life care.

"We couldn't have had the 'good day at the lake,'" she said.

Never Look Down on SomeoneUnless You're Gonna Help Them Up